Autism: A Social and Medical History [2 ed.] 3031310144, 9783031310140

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Autism A Social and Medical History

Mitzi Waltz Second Edition

Autism

Mitzi Waltz

Autism A Social and Medical History

2nd ed. 2023

Mitzi Waltz Athena Institute Vrije Universiteit Amsterdam Amsterdam, The Netherlands

ISBN 978-3-031-31014-0    ISBN 978-3-031-31015-7 (eBook) https://doi.org/10.1007/978-3-031-31015-7 © The Editor(s) (if applicable) and The Author(s), under exclusive licence to Springer Nature Switzerland AG 2013, 2023 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the ­publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and ­institutional affiliations. This Palgrave Macmillan imprint is published by the registered company Springer Nature Switzerland AG. The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Preface: Autism, and How We Got Here

In May 2009, as I began work in earnest on the first edition of this book, my inbox filled up with a flurry of emails from adults with autism and from researchers who worked closely with them. All were concerned with being heard in the ongoing process to revamp the autism diagnostic guidelines for the upcoming fifth version of the Diagnostic and Statistical Manual of Mental Disorders. Better known as the DSM, this is the Bible for diagnosis and billing used by psychologists and psychiatrists in the US and has a worldwide impact as well. The past four versions had featured no input from those whom the DSM describes as ‘autistic.’ However, the sociocultural context of autism was changing, and one measure of that was the increased importance of people with autism in debates about diagnosis and other issues. At the time, to be diagnosed with ‘mental disorder no. 299, Autistic Disorder,’ a person had to exhibit ‘qualitative impairment in social interaction … qualitative impairments in communication … [and] restricted repetitive and stereotyped patterns of behavior, interests and activities’ (American Psychiatric Association, 1994). Some further specifics were included under the descriptions of each of these criteria. Compared to diagnosis of Down syndrome, with its characteristic chromosomal and physical differences, deciding whether a person is on what we now call the autism spectrum was not at all straightforward. Nor is diagnosis in childhood a reliable predictor of adult outcomes, or even what kinds of special education methods, medical treatments or behaviour management schemes, if any at all, are most likely to be of use. v

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As a result of interventions by autistic adults, sensory-perceptual issues appeared in the DSM-V for the first time as something that often affects people with autism and that should be considered when making a diagnosis, though it was not made a diagnostic criterion. It remains remarkable that it took so long for the internal experience of autism, rather than aspects of autism that may puzzle or bother non-autistic people, to become a part of how autism is officially defined. But when you know about the history of autism, it is not a surprise. As Laurence Arnold, the first autistic adult to serve on the Board of the UK’s National Autistic Society, put it: Autism is a word, with a history and connotations. It is a semiotic pointer [and] what it signifies is governed not by any natural laws, but by the rules of communication theory, whereby the originator of the message may not be completely understood by the receiver because of a variety of cultural, neurological, environmental and simply accidental and incidental interference … [Autism] is not inherently wrong, just different, but that difference and the varying degrees of that difference are heavily negatively nuanced in a society and environment to which we are not maximally adapted. (Arnold, L., 2009, personal communication, 15 May)

This condition that has existed throughout human history did not even gain a name until 1943, and the process of attaching any depth of understanding to that name has been beset by controversy, conflict and even fraud. Eighty years after the word ‘autism’ was first made semi-official shorthand for a pattern of child development and behaviour, no agreement has been reached about even the most basic issues, such as causation. How we got here, and what that process has meant for autistic people, their families, and the professionals tasked with teaching and supporting them, is the topic of this book. It is not a straightforward story of medical progress or increasing social acceptance but a convoluted tale in which ideas seem to return again and again, regardless of the evidence base. A disparate chorus of voices emerges from history, with much to tell us. The story of autism weaves in and out of the histories of medicine and psychiatry, as well as those of social exclusion and inclusion, eugenics, special education and the disability rights movement. I have attempted to relate this history through its impact on the lives of autistic people and their families, as well as through facts and statistics. In

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the case of historical events, some necessary licence has been taken with imagining what might have been. In describing the short life of Ralph Sedgwick in Chap. 1, for example, I added colour from historical accounts of everyday activities in his London neighbourhood to turn a set of case notes and census records into something more like a real boy. It is also by no means the whole story. Entire volumes will need to be written to illuminate what happened outside the US and Europe, where the diagnostic category first emerged—although in this revision, I have also made an effort to include more sources from outside the Global North and to consider the correlations between the development and deployment of autism as a diagnostic category, and racism, colonialism and eugenics. New evidence is continually being gathered, and autism research has taken a direction in the last decade that is surprising—and for a student of the history of autism, dispiriting. In addition, each person ever diagnosed with autism has an individual history that, while it intersects with the story told here, also has its own trajectory. These individual stories and the history of autism in general form a part of our human history, from which we still have much to learn about neurodiversity and inclusion. Like many disability historians, I have a personal stake in the tale I have chosen to tell. My family includes several people who are on the autism spectrum, so does my circle of friends and colleagues. In my work as an academic, I have mentored and learned from dozens of autistic university students. As a researcher, I have been involved in many projects about autism, on topics as diverse as development of staff training, media images, housing, employment, parent support and, most recently, the health needs of autistic women. In my current role, I am busy with raising awareness of autism (and disabilities in general) in the context of global health. This personal involvement has given me a ringside seat for many of the developments that I will describe in the chapters that follow, and has contributed to continuing hope that we can eventually become much better at supporting autistic people to have great lives in which their talents and gifts will be appreciated, exactly as they are. AmsterdamMitzi Waltz January 2023

Acknowledgements

Revisiting this book ten years later, I remain grateful to those who made the first version possible. The list of those who have supported me and sparred with me includes my PhD supervisors at the University of Sunderland, Paul Shattock and John Storey, and my ‘critical friend’ Alan Roulstone; my former colleagues at the Autism Centre for Education and Research at the University of Birmingham: Karen Guldberg, Glenys Jones, Rita Jordan, Andrea MacLeod, Sarah Parsons and Kerstin Wittemeyer; and my former Sheffield Hallam University Autism Centre colleagues: Nick Hodge, Luke Beardon, Nicola Martin and Sue Chantler. The Athena Institute team at Vrije Universiteit Amsterdam also deserves thanks for giving me a supportive and intellectually challenging nest, as has the Medical and Health Humanities group within the VU’s History department, especially Manon Parry. Disability Studies in Nederland has been a crucial partner when it comes to maintaining a critical perspective and placing the history of autism within the wider perspective of disability history. This project would not have been possible without the many people who have helped me with archival research or agreed to be interviewed. I can’t name everyone, but special thanks are due to Great Ormond Street Hospital, the National Autistic Society, the Autism Society of America, the University of Chicago, the MIND Institute, the Wellcome Trust, Thomas Anders, Laurence Arnold, John Clements, Uta Frith, Steven Kapp, Wenn Lawson, Gary Mesibov, Damian Milton, Ari Ne’emen, and the late Bernard Rimland and Lorna Wing. ix

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ACKNOWLEDGEMENTS

Finally, the inspiration to keep working on this project, the impetus to revise and update it, comes from the very important autistic people in my life. Knowing and listening to you has changed my life and my ideas about autism. You are already writing the next chapter of this history.

A Word About Language In autism, language use matters. Community preferences differ from country to country, and from person to person. In the UK, ‘impairment first’ language—autistic person—is preferred over ‘person first’ language— person with autism. The reverse is the case in the Netherlands and some other countries. I prefer the first usage, but will sometimes use both in this book, along with the more cumbersome ‘on the autism spectrum.’ The term ‘intellectual disabilities’ is generally used rather than the UK term ‘learning difficulties,’ to avoid confusion, as in some other countries learning difficulties or disabilities is used to refer to conditions like dyslexia and dyspraxia. Original language used in historical sources is sometimes retained, especially when it appears in direct quotes, including terms (such as ‘subnormality hospital’ or ‘mentally retarded’) that are today seen as offensive.

Contents

1 A Nameless Difference  1 2 Autism Before and After the Enlightenment 11 3 Workhouses,  Asylums and the Rise of the Behavioural Sciences 29 4 The Social Construction of Autism 53 5 From ‘Pathological Motherhood’ to ‘Refrigerator Mothers’ 83 6 Bedlam, Behaviourism and Beyond 99 7 Parent-Blaming, Parent Power and Research121 8 Parents Behind the Wheel: Danger Ahead?155 9 Autism Self-Advocacy: Achievements and Challenges185 10 Genetics, Genomics and the Medical Model of Autism203

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Afterword: A New Politics of Autism?237 References241 Index275

CHAPTER 1

A Nameless Difference

Ralph Sedgwick1 lay in the bed, where he was tucked tightly in beneath a crisp white sheet to keep him from wandering. He wiggled his fingers between his eyes and the light that came streaming in through the large window at the end of the hospital ward. The year was 1877, the height of the Victorian era and a time when medical knowledge was expanding rapidly. As Dr Dickinson strode down the aisle of beds towards the boy, a young nurse struggling to keep up in his wake, Ralph took no notice of their approach. He clasped his hands together and turned them, then brought them to his face and rubbed his eyes three times. A chair was brought out for the doctor, and Ralph continued to watch his fingers as they cut through the beams of light. His reverie was only interrupted by a spasm of coughing. ‘Ralph Thomas Sedewick,’ wrote the nurse at the top of a blank journal page, misspelling the child’s name, then paused with pen poised to take down the doctor’s notes. For quite some time Dr Dickinson sat watching, occasionally asking questions of the ward sister and consulting his notes from the previous day, when two-and-a-half-year-old Ralph had been brought to Great Ormond Street Hospital in London by his parents. The mother and father had submitted to Dr Dickinson’s incessant questions for about half an hour before leaving the boy behind. Ralph’s mother had cried and wrung her hands as they left, hands that twitched in

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her lap even when at rest as she talked about her son. Dr Dickinson now knew the child’s medical history, but little about his day-to-day life or that of his family. Ralph was the first child born to this working-class Islington couple. His father, also named Ralph, had managed to learn to read, write and do basic maths, despite starting life as an abandoned baby. Nevertheless, he struggled to make ends meet by helping with a book stall on the street market. Books were growing in popularity as literacy increased in England, but there were still days when Ralph’s father felt he might as well not have showed up to unpack boxes for the owner. Life wasn’t much easier for Ralph’s mother, Margaret. Her days were an endless round of cleaning, washing, cooking and trying to figure out a way to make her husband’s meagre earnings stretch to feed their growing family. Margaret had always had a bit of a nervous disposition, and since becoming a wife and mother, her anxieties had settled on her children’s health and safety. While pregnant with Ralph, she told the doctor, she had one day seen an idiot boy in the London streets, dragging a gammy leg behind him. As she stared, she saw him knead his hands together and then wave them before his eyes repeatedly. Turning away in disgust, she had a twinge of fear—perhaps it was only an old wives’ tale, but old wives certainly did say that what you saw whilst pregnant could affect your baby. Seeing one of those doomed infants with an enormous, lolling head could cause the same condition in your unborn child, just as surely as seeing a buggy accident could cause your child to be a fearful little thing who started at horses. She had walked rapidly away from the unwelcome sight, holding her swollen belly protectively. At their interview yesterday, Margaret had looked up at Dr Dickinson with pleading eyes at the end of this anecdote, seeking affirmation that her son’s condition had been an accident of fate, not her fault. ‘Write it down,’ he told his scribe wearily. He had learned the hard way that there was no point trying to tell parents of sick children that their superstitions were pernicious nonsense. The doctor prompted her with a standard question about Ralph’s birth, and Margaret continued her tale. The labour had been blessedly quick, she said. Her sister had come for the lying-in and helped to clean Ralph up and bring him to her breast. The infant had looked as healthy as any baby born to a labouring family in Victorian England, which is to say that he had serious problems soon enough. He had the constant cough of a child kept indoors in a small,

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smoky room most of the day, breathing the foul air of central London when his mother took him out to buy food or do her washing in the courtyard. He had the sunken chest and slightly bowed legs typical of children fed on a poor family’s diet of porridge, boiled vegetables and not much else. Ralph’s eyes were rheumy from the start and didn’t seem to hold his mother’s gaze for long. ‘Do you think there’s something wrong with the lad’s sight?,’ his father had asked, watching the infant one day as he lay next to his mother on their pallet, a faraway look in his eyes. ‘No, Ralph—I swear, little Ralphie can stare at the window for hours if I let him. Don’t know if he’s looking for birds or what—remember that time I told you about when a pigeon landed right on the windowsill, and he was so excited?’ Margaret’s private worries centred on herself. Ralph had been a poor nurser, and it had been touch-and-go for the first two months. Then he eagerly took a bottle of thin, dubious-looking milk bought from a cut-­ price vendor down the road—but it was an extra expense the family could scarcely afford. What was wrong with her milk that it made him so sick? And was the store-bought milk safe? Rumours about market traders whitening water with chalk or who knows what and passing it off as milk swept the neighbourhood on a regular basis (Hopkins, 1994). One thing Margaret knew for certain is that little Ralph’s bowels were a problem and always had been. From the age of eight months on, he had bouts of diarrhoea. In between these, his belly distended and he screamed from constipation. Bowel problems were a frequent killer of babies, and the death of infants was no rarity in Margaret’s world. Mothers could expect to lose at least one or two in their childbearing years, maybe more if they were unlucky enough to be exposed to one of the frequent epidemics of contagious disease that ran riot in crowded cities like London. These, she knew, could take whole families in days. Just thinking about it made her hold her son closer when she passed someone who looked unwell. Ralph had survived that crucial first year, but his parents knew something was wrong. His first word—blissfully, ‘mum’—was never followed by another. His little legs didn’t seem to work properly either. He had not even tried to crawl, but then surprised them around his first birthday by standing alone in front of his beloved window. Margaret and her husband had expected walking to follow this feat, but it never did. He would pull himself up to stand at the window, but spent much of his time indoors lying on the pallet. Margaret still had to care for him like an infant. When other lads of two or three were toddling about in the grimy courtyard,

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ducking under the washing and chasing each other with sticks, little Ralph sat or lay on the ground, playing with his hands and fingers. He would hold a stick or a rag, but he didn’t play with them as the others did. Whatever you gave him to hold was sniffed and tasted, no matter how dirty, then turned about in his hands as though he was blind. If it met his approval, it then became part of his odd finger-and-hand play, passed back and forth across his face as if blocking out the light and revealing it again was the most fascinating game in the world. Ralph would bring his fist up to his eye, then put his hands together and knead them like a washerwoman wringing out a shirt. Meanwhile, he would roll his head from side to side. Seeing him like that bothered Margaret so much that if she could, she left him indoors. She knew what other mothers said about those who had an idiot child. An idiot child. Just the idea struck fear into her heart. Idiot children became idiot men. On her worst days Margaret thought of herself as an old woman, spooning soup into the mouth of a hulking, drooling imbecile. When inside their room, she often watched Ralph as he stood holding onto the windowsill for what seemed like hours, swaying back and forth, and tried to imagine him doing that as a grown man. When he lay on the pallet and brought his feet right up to his belly, pulling at his toes like a baby, she tried to think what that would look like at 16 or 36. These thoughts usually gave way to sobs, and the day she brought Ralph to the hospital, despite the presence of a gentleman like Dr Dickinson, was no different. Fighting back her tears, Margaret tried to defend her lad against the unspoken verdict of idiocy. She knew he could see and hear, she said. Most of the time Ralph would alert to his name when she spoke to him. Though he wasn’t able to follow new directions, he knew their daily schedule and would let her know how upset he was when it wasn’t kept. ‘He does have understanding,’ she said, looking up at the doctor, ‘I know it. If only he could talk to us!’ Dr Dickinson finished the interview with the usual round of questions about illness. He was interested to hear that Ralph had never had fits—a rarity in his experience of children like these at Great Ormond Street—and that so far he had been spared any illness more serious than the bowel problems and coughing Margaret had already described. No blood came up with his cough and neither parent looked tubercular, all good signs as far as the boy’s survival was concerned.

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When the doctor got up to continue his rounds, Ralph senior, who had been silent through most of the proceedings, stood to shake his hand. He spoke just one sentence: ‘Doctor, is there anything you can do for the boy?’ This was the moment Dr Dickinson had dreaded. ‘I don’t know, Mr Sedgwick,’ he said. ‘We don’t know much about these cases, but sometimes things improve while the child is with us. We’ll keep him for a few days, and see what happens.’ And so they did. No records exist of the regimen applied to Ralph at Great Ormond Street nor of how he reacted to the unfamiliar experience of daily bathing and plentiful, healthful food. We do know that when his parents came to take him home just four days later, his situation was no better. Ralph was clean and well-fed, but he still could not speak more than his single word, was unable to participate in the social and economic life of his family and could not navigate his environment successfully. He died the following year, perhaps of illness, perhaps as a result of a beating after soiling the family bed yet again or breaking an important item, perhaps because his family’s poverty meant that this least productive member received the smallest portion of their meagre meals. No specific cause of death was recorded. Until the Victorian era, sick and disabled children were cared for at home, with or without medical attention. The medical profession itself was still quite young at the start of the nineteenth century, and it was a long time before children (other than those of Royal or very wealthy families) were seen as worthy of a doctor’s time. Even upper-middle-class families could at best procure the services of a ‘nurse’—nursing was not yet a profession, so these were generally women with no formal medical training (Wohl, 1983). In fact, hospitals for children were a brand-new concept when Ralph was born. Great Ormond Street, the first such facility in the UK, had been founded in 1852. Converted from a spacious townhouse in London, it initially had beds for just ten sick or injured patients. Thanks to powerful fundraising appeals by patrons like Charles Dickens, it had expanded to house 75 children in two wings by 1858; a larger purpose-built hospital was constructed between 1871 and 1875 (Baldwin, 2001). As a charitable institution, Great Ormond Street turned no child away for lack of money. The great majority of children in London lived in poverty at this time, leaving lack of information, inclination, transportation and time as the main barriers to hospital treatment for those in need. Both

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outpatient and inpatient care were available at Great Ormond Street (ibid.). Hundreds of children with brain-based conditions passed through the doors of Great Ormond Street during the late nineteenth century, and a high percentage of them did not live long. Conditions that can be successfully treated with modern medicines, such as epilepsy and tuberculosis, had a very different outcome at the beginning of modern medicine. Many of them were attended to by Dr William Howship Dickinson (1832–1913), who served at Great Ormond Street as an assistant physician from 1861 to 1869 and as a physician from 1869 to 1874. There were no paediatricians then, much less paediatric neurologists (or neurologists at all, for that matter)—Dr Dickinson was actually a kidney specialist, who volunteered at Great Ormond Street as a diversion from his normal rounds at St. George’s Hospital (Royal College of Physicians, 1955). While best known for his accomplishments in adult nephrology, Dickinson developed a keen interest in the effects of ill health on brain function and behaviour in children. In the absence of a codified system of diagnosis or treatment, he relied on his prodigious powers of observation. According to his biographer, ‘He was a meticulously careful observer and a man of immense industry … and his example, in the elicitation of patients’ histories and methodological observation, probably had a permanent influence on the crowds of students that invariably accompanied him’ (ibid.). Dickinson’s work occurred at a crucial moment for children like Ralph. The new practice of gathering young patients into groups within a hospital made it possible to collate and compare large numbers of patient histories and to compare the progression of conditions when various treatments were employed. Through this process, types of injuries, illnesses and disabilities could be categorised, and some attempt could be made towards systemised treatment or rehabilitation. Dickinson left behind three volumes of handwritten case notes at Great Ormond Street, within which the story of Ralph Sedgwick and 23 other children with neurological symptoms like those we call autistic spectrum conditions today can be found (Waltz & Shattock, 2004). If Ralph had suffered an illness like tuberculosis—which actually occupied far more of Dickinson’s time and energy—these documents might have been the foundation of growing understanding. However, for complex reasons that this book will explore, this did not happen. Nor did Dickinson’s treatment ideas make many inroads, though that was more the fault of a limited formulary. Some children at Great Ormond

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Street were dosed with simple medicines that weren’t far removed from the herbal remedies available in rural villages 500  years before, such as senna syrup for those with bowel problems like Ralph’s, made from a common flowering herb. A few were given early chemical or mineral compounds, such as calomel (mercury chloride).2 The recently discovered salt potassium bromide successfully treated seizures—but left the patient with dulled mental faculties, as it was only effective at near-toxic doses (Sneader, 2005). Primitive bits of apparatus like child-sized walking sticks and frames had to be custom-made for those with incurable physical disabilities. Vaccines and antiseptics were in their infancy, antibiotics had not yet arrived and even simple surgeries like those to repair a cleft lip could be a life-­ threatening prospect. If Ralph could have slipped out of his bed one night and walked silently around the hospital, he would have seen other children with brain conditions ranging from tumours to epilepsy to mental illness. An entire ward was filled with children in the last weeks and days of tubercular meningitis, their eyes burning bright but their brains increasingly disordered. Though Great Ormond Street helped many children who were in need of simple surgery or rehabilitative care following injury or curable illness, only a few of those with conditions affecting the brain left improved. One of the exceptions to this rule was a little girl with symptoms similar to Ralph’s own, Ida, who had been put into Dr Dickinson’s care five years earlier. She had suffered seizures since infancy: ‘Not a day has passed without one or two occurring—sometimes she has had as many as 30,’ the records state (Dickinson, 1869–1882). Her seizures were described as varying in type, number and severity, with most affecting the left side. Duration could be as short as a minute or, reportedly, as long as 24 hours. In the absence of effective seizure control, these events took a terrible toll on the child’s development. Many children with epilepsy were seen at Great Ormond Street, but something about the way Ida presented grabbed the attention of both Dickinson and the staff. His observations of this child were even more detailed than his typical case notes. The nature and frequency of Ida’s seizures are described, but her affect and behaviour were seen as particularly unusual. Dickinson described her sleep pattern as disturbed and her reaction to people as odd. ‘When awake she sits up and looks about her in a half unconscious way, or else lies rolling about in bed, moving restlessly from side to side,’ he said. ‘[Ida] cannot speak, but if moved in bed

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contrary to her wishes, or if anything is done that she does not like, she makes a half-screeching noise. If toys be given her to play with she takes no notice of them.’ She was seen to rock in her bed frequently, ‘lurching herself against the bedstead’ (ibid.). As well as being completely non-verbal, Ida did not have adequate receptive speech. Her physical development and general health were relatively normal: she was described as ‘a well-nourished child … with a fresh colour’ (ibid.) and could stand and walk with minimal support. Dickinson’s neurological examination revealed no major problems, other than a minor squint affecting her right eye. Dickinson wrote that there was no history of a blow on the head, nor of worms, which were then widely believed responsible for causing seizures and behaviour problems in young children. Ida did suffer from marked and severe constipation. This was probably responsible for her nocturnal screaming fits and became a focus of her medical treatment at Great Ormond Street. Seizure control was, of course, the first order of business. Dickinson prescribed three grains of potassium bromide to be taken in a fluid mixture four times daily. He added to this a daily dose of three fluid ounces of senna syrup to address the child’s constipation. (Senna was also a vermifuge, capable of removing intestinal worms.) Whether bowel problems were a part of her overall condition, a side effect of confinement to bed or the result of poor diet cannot be known. When Ida’s bowels had still not moved by her fourth day at Great Ormond Street, Dickinson wrote an even more powerful prescription. She was to be given 11 grains of calomel (mercury chloride), with sugar if required, to get it down; three fluid ounces of senna syrup and three fluid ounces of cod liver oil twice daily. Her potassium bromide dosage was also increased. This combination produced a remarkable change in Ida. The ward staff reported that following four bowel movements, her screaming and rocking quieted noticeably, her sleep pattern improved, and she became more engaged with the world around her. By 29 November, the situation was very much improved. Dickinson’s notes read: ‘Bowels regular. No screaming. Appears to notice things rather more than she did. A book was given her today and after a while she tore a picture out of it’ (ibid.). Getting Ida to eat proved to be more difficult than expected, however. She would not feed herself properly, biting the middle out of a piece of buttered bread rather than eating the whole piece, and showing evidence

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of swallowing problems. The ward nurses were only able to feed her bread soaked in beef tea. Feeding problems may have contributed to a dramatic worsening of symptoms within the first week of December. Ida began screaming and rocking again, and her constipation returned. It took two very difficult weeks of treatment changes before improvements returned. ‘Still restless. Screams and gets in a passion beating herself and the bed with no apparent cause,’ Dickinson wrote on one visit. ‘In much the same condition as last note—Bites her jacket, stuffing it into her mouth,’ he noted a few days later. But by 21 December, Ida was again moving her bowels normally and no longer rocking in her bed and screaming. Dickinson remarked that for the first time she exhibited normal behaviour for a child her age, playing with a doll (ibid.). Ida went home with her family three days later, on Christmas Eve. It is likely that she continued as an outpatient, receiving medication at the Great Ormond Street day clinic. There is no record of readmission. Ida’s autistic symptoms were in some ways more marked than Ralph’s, but they were also closely linked to her seizures. Because Ida’s epilepsy was of early onset, it could be that her communication difficulties were purely a form of acquired epileptic aphasia: the result of uncontrolled epilepsy. Dr Dickinson’s diagnosis was ‘convulsive fits, epileptiform,’ so he seems to have believed that Ida’s developmental and movement differences were also due largely to epilepsy. The use of anti-seizure medication does appear to have made a great difference, though at discharge she was still a severely disabled child who faced a grim future. For a long time, the fates of children with epilepsy and those with autism were closely entwined, as we will see in Chap. 3. But first we will look back at the centuries that preceded the turning point of the Enlightenment, to uncover factors that continue to affect social and medical beliefs about autism to this day.

Notes 1. Further information about Ralph and other Victorian children with symptoms of autism can be found in Waltz and Shattock (2004). This article is based on the medical journals of Dr William Howship Dickinson, which are held in the Great Ormond Street Hospital archives. Birth, death and occupational information about Ralph and Margaret Sedgwick and their eight children, including Ralph, were obtained through British census records.

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2. The medical uses of calomel, or mercury chloride, had been known since at least the seventeenth century. It was an effective antibacterial and purgative, widely used to treat ailments like syphilis. It also accumulated in the body if used regularly over time, causing irrevocable damage to the brain and other internal organs. The small amounts sometimes used for children with bowel symptoms at Great Ormond Street Hospital are unlikely to have caused any additional problems, however.

References Baldwin, N. (2001). Complete history of GOSH. GOS/ICH Trust. Retrieved March 29, 2012, from http://www.ich.ucl.ac.uk/about_gosh/gosh_history/ story/index.html Dickinson, W.  H. (1869–1882). Dr. Dickinson, 1869–1882, Nervous Disease. Volumes 1–3, GLS 1026. Great Ormond Street Hospital for Children. Hopkins, E. (1994). Childhood transformed: Working class children in nineteenth-­ century England (pp. 113–116). Manchester University Press. Royal College of Physicians. (1955). Munk’s roll, lives of the fellows of the Royal College of Physicians, 1826–1925, Volume IV (pp. 144–145). Royal College of Physicians. Sneader, W. (2005). Drug discovery: A history. John Wiley & Sons. Waltz, M., & Shattock, P. (2004). Autistic disorder in 19th century London: Three case reports. Autism, 8(1), 7–20. https://doi.org/10.1177/1362361304040635 Wohl, A. S. (1983). Endangered lives: Public health in Victorian Britain. Harvard University Press.

CHAPTER 2

Autism Before and After the Enlightenment

The stories of Ralph and Ida neatly bisect the social and medical history of autism. Before the ‘Age of Enlightenment,’ a period that is usually held to run from the last two decades of the seventeenth century through the eighteenth century, the symptoms that we now associate with autism were viewed largely through the lenses of folklore and religious belief. After it, there was almost always a medical aspect to how these symptoms were conceptualised and dealt with, even if this was just a thin veneer of new terminology. This is not to say that there was a sudden sea change from one paradigm to another. As will be demonstrated in later chapters, earlier beliefs about autism have survived alongside and within scientific views. Observers in the pre-Enlightenment past will have also occasionally stumbled upon less ethereal explanations. It is hard to find solid, reliable information concerning ideas about disability or medical practices of any sort before the advent of writing, just a few thousand years ago. We instead look to physical evidence and the echoes of prehistoric ideas that remain in early literature. For example, we know that prehistoric humans had concepts of illness, health and ‘treatment,’ because medicinal herbs have been found amongst grave goods dating back to very early human existence (Larsen, 2002). We also know that they were aware of brain-based difficulties, as evidence of trephination—scraping or drilling holes into a living person’s skull in a crude

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 M. Waltz, Autism, https://doi.org/10.1007/978-3-031-31015-7_2

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attempt to relieve such problems—dates back to at least 8000 BC (Philips, 1990). There is also clear evidence that disabled people were often cherished community members (Spikers, Wright, & Hodgson, 2016). In hunter-gatherer and basic agrarian economies, anyone capable of repetitive hard work would probably have a valued role to play in the community, and some forms of intellectual ability or behaviour norms might have been less relevant than they are today. Some researchers have made a persuasive case that heightened perceptual faculties, persistence in skill acquisition and use, creative innovation, and generosity in social relations would have made people with autism valued community members, terming autism ‘an alternative pro-social adaptive strategy’ (ibid., p.  294). Giving credence to this theory, recent genetic research has revealed that some of the hundreds of genetic differences associated with autism emerged at least 200,000 years ago, and in some cases are shared with our closest primate relatives. This indicates that functional, persistent genetic variants are associated with autism (ibid.). However, up to one-third of autistic people also have intellectual disabilities, and some have additional health issues. Individuals with severe feeding or digestive problems, like Ralph, would have a low survival rate. As in Ida’s time, epilepsy would have led to increased debility and possibly death. Challenging behaviour in children or adults may well have been met with violence, as it all too often is today. From these likelihoods we can make the assumption that survivability rates for individuals with autism and severe learning difficulties or comorbid conditions like epilepsy may have been low. For others, the steady pace of work and carefully controlled patterns of human relationships that characterised pre-modern societies would have given daily existence an orderly pattern—something that current research indicates underlies a better quality of life for people with autism. Interruptions from outside circumstances, such as severe weather, crop failures or the need to move to better hunting grounds, would have posed the greatest challenges—but perhaps autistic people would be exactly those to apply logic and creativity to solve these emergent problems rather than panicking. The superior pattern recognition abilities seen in many individuals with autism (O’Riordan et al., 2001) may have given them a clear advantage in hunter-gatherer societies. The ability to distinguish animal footprints from random impressions on a riverbank, tell edible plants from their poisonous lookalikes and pick up the distress calls from birds that provide an early warning of a large predator would be among the most valued talents

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possible during the first 100,000  years or so of the existence of Homo sapiens. Paul Tréhin, the parent of an autistic savant, has made a particular study of cave art. He has also suggested a crucial role for traits linked to autism. He has written that savant syndrome—a pattern of extreme gifts and deficits seen more often in people with autism—may have played a key part in pushing forward human evolution in the Palaeolithic period, as evidenced by the character and form of very early human artwork (Tréhin, 2003). Others have also noted the similarity of art produced by some modern autistic savants and prehistoric cave art (Humphrey, 1998). A similar hypothesis has been put forward in relation to attention deficit hyperactivity disorder, with claims that high levels of alertness and quick reaction times could have provided clear advantages in the past, despite being pathologised today. In this context it has been argued that ‘it is unlikely that such a “disorder” could be prevalent in the human species if not maintained by selection forces that conveyed certain advantages to some ADHD characteristics or other associated traits’ (Jensen et  al., 1997). A strong case can also be made as regards traits associated with the autism spectrum. Many current autism researchers, including the author, conclude that autism is therefore a functional variant in brain organisation, with its own pattern of strengths and challenges that is in no way inferior to the ‘neurotypical’ pattern that characterises the majority population. Studies have found that thinking styles associated with autism are evenly distributed across disparate human populations (Wakabayashi, Baron-­ Cohen, Uchiyama, et al., 2007; Carruthers, Kinnaird, Rudra, et al., 2018), further supporting this conclusion. Most of the less adaptive behaviours associated with autism are strongly dependent on environmental conditions. These problems might emerge when a person is faced with chaos, noise and uncertainty, but are less prominent in an orderly and predictable environment. Others, such as difficulties with speech and social communication, or a tendency towards repetitive and inflexible behaviour, are more of a constant. Each human society will have had its own explanations and ideas about these, as is the case today (Grinker, Daley, & Mandell, 2021). In some cultures, these differences will have been viewed negatively, in others seen as part of a continuum of typical behaviour and perhaps in still others valorised. For example, social anthropologists have long noted the close linkage between the role of shaman and the experience of mental distress or serious illness. In most cultures with a shamanic tradition, the individuals who take on this role are those who are seen as ‘different,’ for example people who in

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our culture might be seen as suffering from epilepsy or mental ill health (Lewis, 2003). Only those explanations that have been preserved in later writings are available to us as textual evidence of possible past views, but it would be wrong to assume that these are absolutely representative. As anthropologist Roy Grinker has established, even in current times, when general ideas about medicine, child development and education are far more standardised worldwide, there are great differences in how the same symptoms are perceived among varied cultures (Grinker, 2007). There will certainly have been times and places in which symptoms displayed by particular individuals with autism were seen as aberrant in some way. Written documents based on older oral traditions contain clues about ideas that may have underpinned attempts at inclusion or treatment and attitudes towards care for persons with symptoms associated with autism. For example, perhaps the earliest related written account of epilepsy is the Sakikku, a diagnostic handbook written by a Babylonian sage, Esakil-gin-apli, in which several different types of seizures are described and linked with either emotional shock or predation by evil spirits (Longrigg, 2000). If the cause was thought to be demonic, this author recommended prayer or exorcism—or even murder (Stol, 1993). However, other interesting research into ancient Babylonian and Syrian practices suggests that autistic people might have been represented amongst revered ascetics in early Middle Eastern cultures, and links this with Indian ascetics as well (Annus, 2018). Hindu and Buddhist cultures have long had a societal role for wandering ascetics, and these persons are even today allowed to deviate from cultural norms. The Aghori of India and Nepal, for example, live outside of society in crematoria or burial grounds, violate cultural purity norms, do not work, and often exhibit unusual and repetitive behaviours or isolate themselves (Suri & Pitchford, 2010). In other cultures, pervasive purity norms and strict rules of behaviour might have made deviation more difficult. Biblical sources regarding impairments of all types put an emphasis on cleanness and uncleanness as part of notions of Jewish ritual purity: the fitness of a person to serve in the Temple as a priest or to be socially included. People with most forms of illness or impairment were seen as ‘unclean’ and barred from the priesthood or entering the Temple. Epilepsy, which affects up to 40 per cent of people on the autism spectrum (Gabis et al., 2005), was apparently viewed as demonic possession.

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The impact on individuals of this view of behaviours or characteristics seen as indicating ‘uncleanness’ differed. Women in general and young children were considered ritually unclean, but took part in everyday life within limitations prescribed by religious law. In some cases, such as infection with leprosy, people perceived as unclean were barred from social inclusion altogether. All people who were not ritually pure were seen as potential sources of pollution for the larger community, and in the case of impairment this was made very clear: disability, both mental and physical, was believed to be the result of sin or evil forces and presented a danger. People with developmental and sensory disabilities were graded according to their ability to communicate or understand, and separated from the community more or less according to the severity of their impairment (Abrams, 1998). However, ancient Jewish and early Christian attitudes towards people with disability weren’t completely negative. An obligation to care for and protect those seen as sick or impaired was also put forward. The idea of killing people with disabilities would have been seen as abhorrent and sinful. Nevertheless, the experience of social exclusion was probably not a pleasant one, especially for those who were excluded from most everyday contacts, not just some types of religious observance. When Mohammed founded Islam he not only drew on Jewish traditions but also stated clearly that people with disabilities should not be mistreated or excluded. It may be for this reason that the first known mental hospital appeared in Baghdad in 705  AD, followed by many more. Treatment included prayer, herbal medicine, diet and an early form of music therapy (Mohit, 2001). Islamic doctors, and Jewish doctors working in Islamic countries, were at the forefront of scientific medicine during the Middle Ages and wrote extensively about epilepsy and other brain-­ based conditions. Attitudes towards epilepsy were also different in other areas. The ancient Egyptians called epilepsy ‘the sacred disease,’ believing that it might give people special powers (Nunn, 1996). Some ancient Greeks also held this belief, but Hippocrates took them to task as ‘charlatans and quacks’ and attributed epilepsy to natural causes (Longrigg, 2000, p. 13). In ancient Greece, according to those stories that have been preserved, impairment of all types was often interpreted as a punishment from the gods and a danger to the community. In Sparta this idea was taken to the extreme, with enforced infanticide for newborns judged to be abnormal (Stiker, 2000). As children with autism usually have no physical signs at

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birth, they would have escaped that fate, perhaps only to be driven out of the community later. These ideas influenced the development of nascent Western medical science during the Greco-Roman period. For example, the earliest known book on gynaecology was written around the second century AD by Soranus of Ephesus (98–138 AD), who practised under the rule of emperors Trajan and Hadrian. It includes a chapter called ‘How to recognise the Newborn that is worth rearing,’ which declares: The newborn should be carefully examined to ensure that it is perfect, in all its parts, members and senses, that its ducts, namely the ears, nose, pharynx, urethra, and anus are free from obstruction, that the natural functions of every member are neither sluggish nor weak, and so on. By conditions contrary to those mentioned the infant not worth rearing is recognized. (Soranus, in Wyatt, 1997)

A look at the chapter’s title explains why ‘normalcy’ in infants is being described: those seen as ‘abnormal’ should not be reared. Presumably care would then be withdrawn and the child would be allowed to die. The manuscript from which the quote above was taken was reintroduced to modern medicine through translation during the Victorian era (Raju, 1980) and dovetailed with ideas about natural selection that were then gaining prominence. As noted at the beginning of this chapter, old ideas about disability rarely die out, but instead return in new forms. When Christianity and Islam spread into new areas, they brought with them a set of beliefs about disability that may or may not have conflicted with indigenous notions. Both religions sought to foster charity towards the ill and impaired as a religious duty, a belief that these religions share with Judaism, Hinduism and Buddhism, among other faiths. For people with autistic traits whose impairments prevented them from working, charitable assistance may have included some basic support, such as housing, food and clothing. Efforts may also have been made to ‘cure’ individuals seen as impaired or ill, either through prayer or by administration of such herbal medicines as were known. During all these centuries, people with autism would not have been differentiated from people with epilepsy or mental ill health; for those with additional intellectual disabilities, they would have been lumped in with all others seen as ‘fools.’ Michel Foucault puts forth a strange (and unsupportable) theory about ‘madness’ and disability in mediaeval Europe, claiming that ‘Madmen

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then led an easy wandering existence’ (Foucault, 1965, p. 8). The reality for children and adults with autism driven out of their homes due to inexplicable behaviours that may have been seen as ‘madness’ or linked to demonic forces or witchcraft was almost surely something far worse than a berth on the mythical Ship of Fools. However, as Roy Porter writes in his fascinating book A Social History of Madness, one need not accept Foucault’s ‘romantic primitivism’ on this point to appreciate his insights into the increasing level of segregation from society and confinement for those seen as mad, bad or odd that can be demonstrated from the seventeenth century forward (Porter, 1987). We also know from events in the twenty-first century, when some ‘modern’ evangelical churches have continued to link autism and witchcraft in the US, Africa and elsewhere, that segregation and confinement are far kinder than the potentially violent reaction of a community that sees a child with autism as a sinister threat (Ori, 2010). We also know that today many parents accept both supernatural and scientific explanations for autism at the same time: modern parents interviewed in Kenya, for example, had a wide range of explanations for autism that included evil spirits, witchcraft, curses due to violating societal norms, drug or alcohol use during pregnancy, malnutrition, illness and heredity. Many sought help from traditional or religious healers before or while also visiting healthcare settings (Gona et  al., 2015). The same phenomena have been observed in Western countries. Accordingly, it is likely that as new religious beliefs about disability and behaviour norms spread through the Middle East, Europe and Africa before the Middle Ages, these also existed alongside indigenous belief systems. Actual records related to symptoms and behaviours associated with autism during the pre-mediaeval period, Middle Ages and Renaissance are scanty, but a few recorded episodes and documents exist that may shed some light on ideas about autism and the lives of people with autism during this time. The Russian Orthodox and European Catholic traditions both have a tradition of ‘holy fools’ and probably made homes for some individuals who today might be seen as autistic. Christine Trevett’s examination of the legend of Brother Juniper, whose absolute honesty and selflessness made him an important part of St Frances of Assisi’s band and teachings in Italy, provides one such example (Trevett, 2009). The Venerable Bede (673–735 AD), the monastic historian, theologian and scientist who served at the Wearmouth monastery in Sunderland, England, wrote that his mentor, St John of Beverley, ‘healed’ a boy who could not

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speak by making the sign of the cross over him. This story also substantiates the notion that families might have abandoned or sent a ‘difficult’ or disabled child away to a monastery. St John then patiently taught the boy to speak over a long period of time, wrote Bede, who also describes the use of a manual alphabet for communication by persons unable to speak, originally developed for the use of monks who had taken vows of silence (Gardner, 1983). Sign language was also used by non-verbal people in the Ottoman Empire during this era (Miles, 2000). The availability of non-­ verbal communication strategies would have been helpful for many people with autism. According to the mediaeval Arab physician Abu Bakr Zakariyya Al-Razi (865–925 AD), potential treatments for speech delay in children included rubbing the tongue’s surface with special preparations, tongue exercises, talking to the child and offering an ‘encouragement to answer,’ or even trying to shock the child into talking (Rockey & Johnstone, 1979, p. 240). In India’s Ayurvedic system, which dates from around 500  AD, speechlessness was believed to be a congenital disorder caused by a chemical imbalance in the mother, sometimes due to ‘ungratified cravings … during the period of pregnancy.’ Treatments offered might have included dietary changes, inducing vomiting, heating up the patient, fasting, and taking or being rubbed with medicated oils (Savithri, 1988, pp. 271–317). These early forms of ‘speech therapy’ would probably have been tried with some autistic children. Ayurvedic teachings also recognised epilepsy as a brain-based condition and recommended treatment with herbal remedies and diet (World Health Organization, 2001). These ideas have relevance for autism due to the high degree of overlap between the two conditions. This medical system also developed an extensive system of behavioural diagnoses that encompassed other traits associated with autism, such as rigid behaviour. Chinese medicine distinguished between five types of seizures as early as 610  AD, although no differentiation was made between partial and complex seizures. Treatment recommendations included herbs, acupuncture and massage (Lai & Lai, 2007). Regardless of the area of the world where a problem was identified, effective mediaeval and Renaissance responses to symptoms associated with autism, or to seizures, would have been few. For example, Mervyn Eadie has identified valerian as perhaps the first effective preparation for seizure control, although he notes that its sedating effects at the doses required could well have rendered the patient insensible (Eadie, 2004).

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Roman physician Galen (129–216 AD) wrote extensively about brain-­ based disorders, believing the mind to be mainly a property of the body and so assuming there were physical causes for most such conditions. He attributed them to imbalances of the humours (substances like phlegm or bile) in the body (Longrigg, 2000) but also suggested that some conditions were psychological and could be cured through wise counsel from an older mentor. Galen’s ideas were influential on both Islamic and European medicine, and the ‘imbalance of humours’ theory was widely believed right into the nineteenth century. This theory supported treatment practices based on bloodletting or applying heat or cold to the patient. While herbal remedies were the most likely treatments that might have been tried if autism was viewed locally as illness, there is reason to believe that it was more frequently viewed as having a supernatural cause. The European folk myth of the changeling would have offered one possible explanation for behaviours associated with autism and would also have suggested certain responses (Leask et al., 2005). A reading of these ancient tales from Scandinavian, Germanic and Celtic folklore reveals that changelings—normal children supposedly stolen away by supernatural beings and replaced with abnormal or even malevolent entities—have always been identified with childhood intellectual disability and behavioural differences. Changelings are described as screaming constantly, not talking, playing with ‘invisible friends,’ making strange movements and having no emotional connection with their mothers. In fairy tales, magic or trickery is used to send the changeling back to whence it had come and then to retrieve the ‘real’ child. Many myths hint that children thought to be changelings were routinely killed, exposed or abandoned. As described by the Brothers Grimm: Near Breslau there lived a distinguished nobleman who had a large crop of hay every summer, which his subjects were required to harvest for him. One year there was a new mother among his harvest workers, a woman who had barely had a week to recover from the birth of her child. When she saw that she could not refuse the nobleman’s decree, she took her child with her, placed it on a small clump of grass, and left it alone while she helped with the haymaking. After she had worked a good while, she returned to her child to nurse it. She looked at it, screamed aloud, hit her hands together above her head, and cried out in despair, that this was not her child: It

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sucked the milk from her so greedily and howled in such an inhuman manner that it was nothing like the child she knew. As is usual in such cases, she kept the child for several days, but it was so ill-behaved that the good woman nearly collapsed. She told her story to the nobleman. He said to her: ‘Woman, if you think that this is not your child, then do this one thing. Take it out to the meadow where you left your previous child and beat it hard with a switch. Then you will witness a miracle.’ The woman followed the nobleman’s advice. She went out and beat the child with a switch until it screamed loudly. Then the Devil brought back her stolen child, saying: ‘There, you have it!’ And with that he took his own child away. (Grimm, in Ashliman, 1997)

There are quite a few European court cases from the nineteenth century involving the torture and murder of alleged changelings. These beliefs persisted in Bavaria and Ireland into the twentieth century and are still current in some parts of Eastern Europe (Leask et al., 2005). The lengthy persistence of this particular belief system is strong evidence for its cultural pervasiveness. Likewise, the attribution of mental ill health to malicious djinns (supernatural beings) is a persistent folk belief in the Muslim world, including amongst Muslims in Europe (Lim et  al., 2018). This belief comes with specific ideas about the right response (prayer and/or exorcism) to symptoms in oneself or in a child, which will have impacted the experiences of people with autism. Indeed, a quick trawl of the Internet for posts mentioning both autism and djinns reveals that many people continue to attribute autism to the interference of djinns. As these examples illustrate, while mainstream Judaism, Christianity and Islam have all moved away from the idea that disabled people are unclean or cursed over the past 2000 years, such concepts have remained just below the surface, surviving in the folk beliefs of many people who consider themselves to be adherents of these religions, and also promulgated by some religious leaders. Folk beliefs in spirit possession have persisted, for example, and are manifested within the context of most major religions in connection with neurological dysfunction. The notion that impairment is caused by personal, family or societal ‘sin’ also remains and may be held by people of any or no religion. In the modern era, these ideas have also become part of some ‘New Age’ philosophies, as has the changeling myth, albeit in new guises (Waltz, 2009).

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Porter noted that ‘medieval and Renaissance minds could regard madness as religion, as divine or diabolical, as good or bad’ (ibid., p. 13). Those who considered the issues of unusual development and behaviour at all found themselves caught in a web of conflicting explanations: medical or magical, natural or supernatural, human or inhuman. As the contents of this web were sorted into simpler dichotomies during and after the Enlightenment, new responses emerged. Rab Houston and Uta Frith have done an admirable job of reconstructing the life of Hugh Blair of Borgue (1708/1709–1765), whose reported development and behaviour met modern criteria for autism. By comparing accounts contained in court documents to clinical criteria and vice versa, they created a ‘case report’ on Blair and analysed it for clinical evidence of autism (Frith & Houston, 2000). Their findings do much to illustrate how the symptoms of autism were viewed in European agrarian communities and how these views were slowly changing in the eighteenth century in response to socioeconomic developments. Blair was from a family of Scottish landowners with a modest estate consisting of fields that both produced crops and generated rental income, and a substantial family home. A legal dispute arose over the disposition of this estate, with Hugh Blair and his mother on one side, and his brother John Blair on the other. Records of Hugh Blair’s life exist solely because of this dispute, as it culminated in a mental capacity hearing. This resulted in the annulment of his arranged marriage and ultimately in the loss of his portion of the estate. According to these records, Blair attended the local school for many years and was able to participate in some, but not all, activities of daily living. He fed and dressed himself, and cared for his own clothing and room, though poorly. He also did useful work such as cleaning stables, helping with household and farm chores, and mending a road with stones. However, his social understanding was impaired, causing him to behave naïvely. He might, for instance, neglect to wear his wig or the proper clothing for an activity or take items that did not belong to him without understanding how this would be perceived. It was noted that servants and even children sometimes treated him with disrespect, but he ‘was given the freedom to indulge in work that was considered unfit for a gentleman … [and] was not confined to the house, nor was he sent away into someone else’s care’ (ibid., p. 150).

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As these statements indicate, confinement within the home was apparently seen as a more typical solution for a family of some means like the Blairs, who could also have opted to send their son away to be confined in a private home elsewhere. Class played an important part in the solution deemed appropriate: had Hugh Blair been from a common labourer’s family, the work he was capable of would not have been a source of embarrassment at all, nor would quite so many rules regarding behaviour and dress have come into play. Blair lived with his mother and later with his wife and her family. Although his marriage was officially annulled when the court found him to lack the degree of understanding legally required to enter into a permanent contract such as marriage, it appears to have continued as a common-­ law arrangement, and the couple had two children. The authors note that ‘until the nineteenth century, Scottish idiots, imbeciles and mad people can be found in a variety of circumstances’ (ibid., p. 31), from living with family members, to being left to wander aimlessly, to various forms of institutional care such as boarding arrangements, workhouses or asylums. Although Blair’s family was of a higher socioeconomic status than most, his life was probably fairly typical for a person with autism in pre-industrial communities like those of eighteenth-­ century rural Scotland. He was able to do a reasonable amount of socially valued work, and no doubt would have performed more had his family been in more straightened circumstances. His behaviour was odd, but generally inoffensive and therefore tolerated. On the other hand, less productive capacity, or a greater amount of behaviour seen as offensive or aggressive, might have been met with expulsion from the community, incarceration of some sort, or violence. Asylums and workhouses were still few and far between at this time, so private arrangements were more common if a family wished, and could afford, to keep a disabled individual out of the way. During Hugh Blair’s lifetime, the scientific method began to be brought to bear on the subject of disability. Rejecting the idea that impairment or illness was caused by fairies, devils or sin, researchers tried to classify forms of disability and sought scientific explanations. Unfortunately, much of the time they only knew enough to be dangerous, and many still believed, deep down, that people with disabilities (or their parents) were to blame for their own problems. Jean-Marc Gaspard Itard (1775–1838) was one of the Enlightenment thinkers who did much to consider the characteristics associated with

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autism scientifically. His study The Wild Boy of Aveyron, which covered a five-year course of rehabilitation work with a young boy found naked, speechless and ‘wild’ in the forests of rural France, applied emerging knowledge of child development, and particularly speech development, that Itard had investigated in his earlier work with deaf-mute children (Itard, 1962). Leaving aside Itard’s interest in the romantic ‘noble savage’ theories of Jean-Jacques Rousseau, his reported work with the child he called Victor contains many interesting elements. He used methods that he had developed with staff at the National Institution for Deaf-Mutes in Paris to create what we would today call an individualised therapy programme: educational techniques designed to guide children into displaying typical behaviour and interests, such as social interaction and communication. Interested as he was in how these abilities emerged without human guidance, Itard took his lead from the child. Observation of Victor’s sensory differences helped him to design techniques similar to sensory integration. He used a rough form of operant conditioning, with rewards to encourage specific behaviours and punishments to discourage others, and recognised that a lack of functional communication underlay many of Victor’s more challenging behaviours. Itard sought to remedy this latter deficit through teaching him spoken, written and gestural language. His teaching methods recognised that Victor’s visual memory was superior to his ability to use or understand other forms of communication. Victor never learned more than a few spoken words, but was eventually able to read with understanding, and had a highly developed system of gestures. He continued to exhibit behaviours that could now warrant a diagnosis of autism—developmental delay, repetitive movements, unusual social behaviours, and impaired speech and communication—but these may have had other causes. Itard undertook the project of working with Victor with a specific purpose: to refute the then-current opinion that intellectual disability was permanent, with educational techniques of no use. His own thesis was that ‘idiocy’ was a combination of innate and environmental factors, with the latter much more important. Itard’s experiences with Victor confirmed him in this belief, although he eventually recognised that his ability to overcome Victor’s difficulties through education was limited, either because of the child’s age at the time of making initial human contact or because of some innate defect.

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Itard’s work influenced the care and education (or training) of persons with learning difficulties (Brockett, 1856), particularly through the work of his student Edouard Séguin (1812–1880) and, later, Maria Montessori (1870–1952), who closely studied Séguin’s work with blind children (Montessori, 1986). Until autism was differentiated from other forms of seeming intellectual disability, therefore, Itard’s findings and those of his followers should have had a great impact on the lives of people on the autism spectrum. Indeed, Itard and Séguin were directly cited by Leo Kanner, the first autism researcher in the US, as ‘pioneers’ (Kanner, 1960). However, as James W. Trent has documented with depressing finality, the window of opportunity for such optimistic programmes was open for only a brief moment. For example, Séguin’s work at the Bicêtre hospital in Paris used techniques that are recognisable as resembling physical therapy, occupational therapy, sensory integration, social skills training and special education to improve the life chances of persons with intellectual disability—based on published descriptions of his ‘idiots,’ it is certain that some of these individuals would fit modern diagnostic criteria for autism (Trent, 1996). Other children with similar symptoms found themselves admitted to the schools for deaf, non-verbal and/or blind children that were springing up in many parts of the world. Although Séguin himself seemed to see education as a liberatory force for his pupils, it nevertheless took place within the confines of a residential facility, an asylum that also housed mental patients, political prisoners and alcoholics (Trent, op cit.). And as with similar experiments in the rehabilitation of persons with mental illness within special hospitals during the Enlightenment, this place of treatment very soon evolved into a place of confinement. Ever since, the two faces of care and treatment for persons with autistic characteristics have been benevolence and control—often with the former a mere mask for the latter. Roy Porter describes this change in attitude thus: ‘Enlightenment optimism had culminated in the French Revolutionary aspiration that the mad could be freed from their mental shackles and restored to full reason. A century later, however—a century of depressing close encounters with the mad in the mental hospital—psychiatry had grown wiser or more pessimistic’ (Porter, op cit., p. 21). Scientific investigation also had its benefits, of course. When a physical reason could be found for a brain-based condition, as was eventually the case for cretinism (a form of intellectual disability caused by iodine deficiency), the stigma surrounding it was removed, preventative measures

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put in place and compensatory education provided for those nevertheless affected. When no cause could be ascribed to a condition, however, the tendency seemed to be to fall back on moral (which is to say supernatural) explanations. As one American doctor wrote at the end of the nineteenth century: Humiliating as the thought may be, we are driven to the conclusion that the vast amount of idiocy, in our world, is the direct result of violation of the physical and moral laws which govern our being; that oft times the sins of the fathers are thus visited on their children; and that the parent, for the sake of a momentary gratification of his depraved appetite, inflicts upon his hapless offspring a life of utter vacuity. (Brockett, op cit., p. 10)

While frequently couched in semi-scientific language from the nineteenth century forward, these suppositions were generally unsupported by any hard evidence of a connection between ‘sins’ and outcomes. Brockett’s quote may well have been alluding to a medical cause, congenital syphilis, but using the supernatural terminology of ‘sins’ permitted many different interpretations. This left the door open for an emerging science, psychology, to connect medical and supernatural explanations and for the very schools and asylums that had seemingly held such liberatory promise to become the sites of increased seclusion and suffering.

References Abrams, J. Z. (1998). Judaism and disability: Portrayals in ancient texts from the Tanach through the Bavli. Gallaudet University Press. Annus, A. (2018). Asceticism in ancient Mesopotamia and Syria: A study of autism in antiquity. In: Fink, Sebastien and Rollinger, Robert (eds.) Conceptualizing Past, Present and Future: Proceedings of the Ninth Symposium of the Melammu Project. Retrieved November 4, 2022, from https://www.researchgate.net/publication/ 277330272_Asceticism_in_Ancient_Mesopotamia_and_Syria_A_Study_of_ Autism_in_Antiquity Ashliman, D. L. (1997, September 3). Changelings. Retrieved January 17, 2023, from https://sites.pitt.edu/~dash/changeling.html Brockett, L.  P. (1856). Idiots and the efforts for their improvement. Case, Tiffany & Co. Carruthers, S., Kinnaird, E., & Rudra, A. et al. (2018). A cross-cultural study of autistic traits across India, Japan and the UK. Molecular Autism, 9(52). https:// doi.org/10.1186/s13229-018-0235-32018

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Eadie, M. J. (2004). Could valerian have been the first anticonvulsant? Epilepsia, 45(11), 1338–1343. Foucault, M. (1965). Madness and civilization: A history of insanity in the age of reason. Random House. Frith, U., & Houston, R. (2000). Autism in history: The case of Hugh Blair of Borgue. Blackwell. Gabis, L., Pomeroy, J., & Andriola, M. R. (2005). Autism and epilepsy: Cause, consequence, comorbidity or coincidence? Epilepsy & Behaviour, 7(4), 652–656. Gardner, R. (1983). Miracles of healing in Anglo-Celtic Northumbria as recorded by the Venerable Bede and his contemporaries: A reappraisal in the light of twentieth century experience. British Medical Journal, 287, 1927–1933. Gona, J. K., Newton, C. R., Rimba, K., Mapenzi, R., Kihara, M., van de Vijver, F. J., & Abubakar, A. (2015). Parents’ and professionals’ perceptions on causes and treatment options for autism spectrum disorders (ASD) in a multicultural context on the Kenyan Coast. PLOS One, 10(8), e0132729. https://doi. org/10.1371/journal.pone.0132729 Grinker, R. (2007). Unstrange minds: Remapping the world of autism. Basic Books. Grinker, R., Daley, T. C., & Mandell, D.S. (2021). Culture and autism. In Encyclopedia of Autism Spectrum Disorders, 1266–1272. Springer. Humphrey, N. (1998). Cave art, autism, and the evolution of the human mind. Cambridge Archaeological Journal, 8, 165–191. Itard, J. M. G. (1962). The Wild Boy of Aveyron (G. Humphrey and M. Humphrey, Trans.). Appleton-Century-Crofts. Jensen, P. S., Mrazak, D. A., Knapp, P., Steinberg, L., Pfeffer, C. R., Schowalter, J., & Shapiro, T. (1997). Evolution and revolution induced psychiatry: ADHD as a disorder of adaptation. Journal of the American Academy of Child and Adolescent Psychiatry, 36(12), 1673. Kanner, L. (1960). Itard, Seguin, Howe—Three pioneers in the education of retarded children. American Journal of Mental Deficiency, 65, 2–10. Lai, C., & Lai, Y. C. (2007). History of epilepsy in Chinese traditional medicine. Epilepsia, 32(3), 299–302. Larsen, C.  S. (2002). Skeletons in our closet: Revealing our past through bioarchaeology. Princeton University Press. Leask, A., Leask, J., & Silove, N. (2005). Evidence for autism in folklore? Archives of Disease in Childhood, 90, 271. Lewis, I. M. (2003). Ecstatic religion: A study of shamanism and spirit possession (3rd ed.). Routledge. Lim, A., Hoek, H. W., Ghane, S., Deen, M., & Blom, J. D. (2018). The attribution of mental health problems to jinn: An explorative study in a transcultural psychiatric outpatient clinic. Frontiers in Psychiatry, 9(89). https://doi. org/10.3389/fpsyt.2018.00089

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Longrigg, J. (2000). Epilepsy in ancient Greek medicine: The vital step. Seizure, 9(1), 12–21; https://doi.org/10.1053/seiz.1999.0332 Miles, M. (2000). Signing in the seraglio: Mutes, dwarfs and gestures at the Ottoman court 1500–1700. Disability & Society, 15(1), 115–134. Mohit, A. (2001). Mental health and psychiatry in the Middle East: Historical development. Eastern Mediterranean Health Journal, 7(3), 336–347. Montessori, M. (1986). The discovery of the child. Ballantine Books. Nunn, J. F. (1996). Ancient Egyptian medicine. University of Oklahoma Press. Ori, K.  O. (2010, July 9). Africa: Child-witchcraft or autism symptoms? Afrik-­ News. Retrieved January 17, 2023, from http://www.afrik-­news.com/article17924.html O’Riordan, M., Plaisted, K. C., Driver, J., & Baron-Cohen, S. (2001). Superior visual search in autism. Journal of Experimental Psychology: Human Perception and Performance, 27(3), 719–730. Philips, C.  A. (1990). Pre-Columbian trephination. Cyber Museum of Neurosurgery. Retrieved January 17, 2023, from https://www.aans.org/ cybermuseum/pre20th/treph/trephination.html Porter, R. (1987). A social history of madness: The world through the eyes of the insane. E.P. Dutton. Raju, T. N. K. (1980). Soranus of Ephesus: Who was he and what did he do? In: Smith, G. F. & Vidyasagar, D. (Eds.) Historical review and recent advances in neonatal and perinatal medicine. Mead Johnson Nutritional Division. Retrieved November 25, 2012, from http://www.neonatology.org/classics/ mj1980/ch27.html Rockey, D., & Johnstone, P. (1979). Medieval Arabic views on speech disorders: Al-Razi (c. 865–925). Journal of Communication Disorders, 12, 229–243. Savithri, S. R. (1988). Speech and hearing science in ancient India—A review of Sanskrit literature. Journal of Communication Disorders, 21, 271–317. Spikers, P., Wright, B. & Hodgson, D. (2016). Are there alternative adaptive strategies to human sociality? The role of collaborative morality in the emergence of personality variation and autistic traits. Time and Mind, 9(4), 289–313. https://doi.org/10.1080/1751696X.2016.1244949 Stiker, H. (2000). A history of disability. University of Michigan Press. Stol, M. (1993). Epilepsy in Babylonia, Cuneiform monographs 2. Styx Publications. Suri, R., & Pitchford, D.B. (2010). The gift of life: Death as teacher in the Aghori sect. International Journal of Transpersonal Studies, 29(1), 128–134. Trent, J. W. (1996). Inventing the feeble mind: A history of mental retardation in the United States. University of California Press. Tréhin, P. (2003). Palaeolithic art and autistic savant syndrome. Presentation to 7th International Autism Europe Congress, Lisbon, November 14–16. Trevett, C. (2009). Asperger’s syndrome and the holy fool: The case of Brother Juniper. Journal of Religion, Disability & Health, 13, 129–150.

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Wakabayashi, A., Baron-Cohen, S., & Uchiyama, T., et al. (2007). Empathizing and systemizing in adults with and without autism spectrum conditions: Crosscultural stability. Journal of Autism and Developmental Disorders, 37, 1823–1832. https://doi.org/10.1007/s10803-006-0316-6 Waltz, M. (2009). From changelings to crystal children: An examination of ‘New Age’ ideas about autism. Journal of Religion Disability & Health, 13(2), 114–128. https://doi.org/10.1080/15228960802581511 World Health Organization. (2001). Fact sheet 168: Epilepsy: Historical overview. World Health Organization. Wyatt, J. (1997). Contrasting views on the treatment of the severely handicapped newborn. Presentation to the A Time to Die? Ethical, Legal and Clinical Perspectives Conference, London. St. Thomas Hospital.

CHAPTER 3

Workhouses, Asylums and the Rise of the Behavioural Sciences

By the Victorian era, the population of England had swollen rapidly. Throughout most of the Europe, there was a massive migration from rural areas into cities like Paris and London, and even in the countryside industrialisation was changing the nature of everyday life through mechanised agriculture  and mining. For industrialists and the educated few, these extraordinary changes in social conditions brought new opportunities, but, paradoxically, the lives of many people with disabilities became more miserable. Although science promised cures and treatments for those with some medical conditions, the modern era placed increased demands on individuals with developmental differences and removed some supports that traditional lifeways had offered. It is intriguing that this process can be observed to take place in every country making a transition from a traditional agrarian economy to one based on individual labour and earnings. Whilst the timing differs for each nation depending on its own circumstances—indeed, as of this writing there are places in the world where the situation of people with disabilities parallels that of Victorian England and where similar solutions are being proposed—England offers a good model for observation of typical historical changes in provision for and attitudes towards persons with disabilities like autism. Once a modern, cash-based economy had developed, the ability to carry out productive labour was no longer enough, as it might have been

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for a person with low intellectual ability or unusual behaviours in Hugh Blair’s day. Anyone who could not work skilfully and rapidly enough to earn money was now in peril and additionally posed a potential danger to the financial wellbeing of his or her family. The nature of that family was also becoming less conducive to long-­ term caring in other ways. As Stiker points out, ‘in the nineteenth century the family was transformed … the family became restricted and nuclear, based on the married couple and on emotions of love’ (Stiker, 2000, p. 109). A nuclear family dependent on paid wage labour had much less time available to care for vulnerable family members, including children, the elderly and disabled people. Wealthier families could, as in earlier times, outsource this problem by paying for care. This solution was not accessible to the vast majority. At best, either some simple employment might be found for an individual with disabilities that provided sufficient income to keep him or her fed and housed, or a family could secure enough wages to permit someone to stay at home as an unpaid carer. At worst, death due to neglect, abuse or ill health would come at an early age. Charity promised some relief, but in London, a rapidly growing city of four million or more, both government and charity care for those with disabilities were thin on the ground. Margaret’s fearful vision of her future as Ralph’s poverty-stricken perpetual caretaker, presented in Chap. 1, would have been based on the reality she saw in her neighbourhood, not misplaced anxiety. It was not only mothers who found this scenario problematic. Victorian employers and politicians also saw the association between poverty, worklessness and disability as a serious social problem. They viewed disabled people as a drain on the public purse—unfit even for the workhouse, due to their inability to do sufficient work—and decried the fact that their family members were less available for work due to caring duties (ibid.). A potential solution to this dilemma already existed: the asylum. The first known asylums arose in the mediaeval Arab world; Britain’s began with the Priory of St Mary’s of Bethlehem in London: now Bethlehem Hospital, once known colloquially as ‘Bedlam’ (Braddock and Parish, in Albrecht et al., 2001, pp. 19–22). Most were small private businesses analogous to today’s group homes, whilst others were attached to religious communities or larger medical hospitals. The use of confinement to asylums as a solution to the issue of Hanson’s disease (leprosy) had already given rise to the spread of institutions in Europe and, later, in areas colonised by Europeans, but as this condition

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became less of a problem in the sixteenth century, some vacated leprosaria were converted to asylums for people with mental illness or developmental disabilities (ibid.). Nevertheless, incarceration in asylums was relatively uncommon before the modern era, with most people with disabilities that began in childhood cared for by their families. Until the nineteenth century, families with a disabled member were also sometimes able to call on local government or wealthy patrons for a paltry but useful amount of financial help (Rushton, 1988). In Britain, the number of small private ‘madhouses’ grew markedly in the eighteenth century, and some adults on the autism spectrum from families of means may have ended up in one of these. As Roy Porter notes, such establishments usually held fewer than a dozen patients, most of whom were ‘short stay’ visitors rather than lifelong inmates. Porter adds that, as with any new commercial product, it was necessary for these entrepreneurs to stimulate demand: ‘In the “birth of a consumer society,” one growing item of consumption was the services of madhouses, not because affluence drove people crazy, but because its commercial ethos made trading in insanity feasible,’ he writes. ‘Once a “supply” was created, demand soon rose to capacity’ (Porter, 1987, pp. 164–165). It is difficult to determine how many people were locked up for disability-­related reasons (including mental ill health), as larger institutions took in a range of inmates, including paupers, alcoholics, criminals and disabled people. In some places the rate was extraordinarily high: in late-eighteenth-century Paris, 1 in 100 of the city’s residents was held in the Hôpital Général for one reason or another (Harcourt, 2009). In most places, the rate of growth was slower, but by the mid-twentieth century around 700 per 100,000 (1  in 142) of American adults was in either a mental institution or prison. As is the case today, prisons housed the mentally ill as well as common criminals—and as Raoult and Harcourt (2017) have substantiated, across modern European history the population of prisons rises when asylum populations decrease, and vice versa. These figures do not include local jails and may also have missed some private institutions and some ‘residential schools’ for disabled people that were more like institutions. As Harcourt (2009) notes, the highest levels of aggregated institutionalisation in the US were seen in the 1930s–1950s, then began to decline, and to dwindle rapidly as deinstitutionalisation took hold in the 1970s. However, he adds, aggregate rates returned to nearly the same level in the 1990s as the prison population expanded dramatically, a phenomenon he and others have linked to the growing practice of

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incarcerating people with mental ill health and developmental disabilities, often for petty crimes or disruptive behaviour (ibid.). The emergence of the asylum as a mainstream ‘solution’ to the issue of developmental disability in Britain followed the same pattern and began in earnest with two nineteenth-century laws: the County Asylums Act of 1808 (later updated in 1845) and the Lunacy Act of 1845, which were passed in reaction to reports of poor conditions in some private facilities. The first law mandated the establishment of public institutions for poor and ‘criminally insane’ people. The second set up a body known as the Commissioners of Lunacy to inspect them (Adair et al., 1997). Unlike institutions for people with sensory impairments, which focused on education or training for blind and deaf youths and were also increasing in number at this time, most of the early public asylums did not accept children. Once this changed, it didn’t take long for the problems inherent in placing children and adults together to be recognised. Separate asylums for children were soon established (Stiker, op cit.). Asylums for children took in those deemed to be ‘idiots,’ ‘imbeciles’ or ‘morons’ (roughly equivalent to modern categories of severe, moderate and mild intellectual disabilities), as well as children with epilepsy, infectious conditions like tuberculosis, mental illness, odd or criminal behaviours, and so on. Most followed the model of orphanages, which had long existed in Europe, as much as the model of the adult asylum. These new facilities frequently took in hundreds of children and were often located in rural surroundings—not only away from the dangers and smog of the cities but also away from prying eyes (Trent, 1996). Asylum residents seen as potentially employable were generally better fed, clothed and housed than those deemed unlikely to benefit the managers if provided with better care. Indeed, many asylums turned a tidy profit by renting out their residents as household or farm labour, or earned money selling produce or products created with their inmates’ free labour, so much so that some expanded the definition of ‘feebleminded’ to incarcerate as many hard workers as they could (ibid.). Individuals with mild intellectual disabilities who today would live in the community with minimal support, just as they had before the age of the asylum, could easily find themselves caught up in a system eager to find hands suited for repetitive industrial or farm work. It is unlikely to be a coincidence that the rise of the asylum as a supply of industrial, household and farm labour coincided neatly with the demise of legal slavery and widespread indenture in Europe and the Americas. Manuella Meyer (2019) makes a compelling case that

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the agricultural ‘labour colony’ asylum model that prevailed in Brazil, for example, was a response to its abolition of slavery in 1888. More severely disabled people posed a real problem for asylum managers, however. They required clothing and food, but were neither easily controlled and cared for by a small staff nor financially exploitable. The conditions that prevailed in asylums likely to have housed children and adults with autism and intellectual disabilities were almost always among the worst. Today, we are aware of the emotional, physical and sexual abuse the inmates of such institutions have so often suffered, and more cognizant of the impact on both children and parents of enforced separation. At the time, however, inspections were rare, and the inmates were seen as having so little human value that improvement seldom occurred. On the other hand, it was not until large numbers of people with brain-­ based conditions were brought together that keen observers could start to recognise the patterns of causation or expression that are so familiar today, such as Down syndrome, foetal alcohol syndrome and, eventually, autism. Dr Dickinson, with his overwhelming caseload of dying tubercular patients, never saw enough children with the constellation of symptoms we now call autism to call it a syndrome, but one of his contemporaries working in the British asylum system did. Dr John Langdon Down became the superintendent of the Earlswood Asylum for Idiots in 1858, just six years after this pioneering institution had been founded. Under Down’s regime, Earlswood can be regarded as one of the best places for an institutionalised person with autism to end up. Inmates lived in groups of just 14 or so, with constant supervision, healthy food and serious attempts to provide them with a suitable trade. As Paul Collins writes, ‘Earlswood was the remarkable exception in an era of industrial purgatories for the retarded’ (Collins, 2004, p.  133), and Down’s keen observations included the first known attempts to construct a picture of what we now call the autism spectrum. Two likely Earlswood candidates for the label of autism were James Henry Pullen and his brother William Pullen. James, a non-verbal, developmentally delayed youth, later gained fame due to his special abilities in carpentry, carving and drawing. William, a skilled engraver who showed similar symptoms, died in young adulthood (ibid., pp. 132–137). The Pullens were just two amongst many children Dr Down saw in the course of his work at Earlswood and later at his own private institution, Normansfield, who combined significant learning difficulties with normal or superior abilities in an area of memory, technical skill or art. These were

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not necessarily extraordinary savant skills like those of the Pullens. Others simply had special interests in things that superseded the typical child’s interest in people, and their intense concentration on these interests could result in meticulous and even wildly original work. Down called these individuals ‘idiot savants’; today we know that at least half of such persons have autism (Heaton & Wallace, 2004). Down also recognised a pattern of child development that was on a varied track from the typical (Collins, op cit.). While most people with autism do not have savant skills, savants are an important sub-category within the autistic population. Their superior abilities in one area can be seen as an exaggeration of the more typical developmental pattern of people with autism, in which there is an uneven pattern of skills and abilities. Although it doesn’t pass muster as a diagnostic tool on its own, a significantly uneven result on the verbal and non-­ verbal types of IQ tests is today often seen by psychiatrists as possibly indicative of autism spectrum conditions (Siegel et al., 1996). It is important to note that, like other early private institutions, Down’s establishments catered for the relatives of affluent families (Ward, n.d.). Life at Earlswood differed considerably from that of individuals confined at home and also from the experience of people with autism and/or learning difficulties in more typical nineteenth- and twentieth-century institutions. British research carried out in the 1960s provided a clear picture of daily life in a hospital for ‘subnormal children.’ Barbara Furneaux describes patterns of care that had evolved over the preceding decades of practice, which were common to nearly every such facility except for the occasional experimental unit: Home for these hospitalised children is a bed in a dormitory with a large day room attached in which all their other activities, except school, take place. Their personal clothing and belongings are restricted in the main to coats, slippers, shoes, toothbrushes and combs; their hair is cut in uniform style by the hospital barber. They never see food in an uncooked state or other than delivered on a trolley from the central kitchen ready for eating. Toys are communal, sweets are rationed and there is restricted choice, if any. Their opportunities for spending money, visiting the local shops, travelling on public transport and paying their fare, and so on, are extremely limited although those who have parents who are able to visit and take them out are more fortunate in this respect. The person who puts them to bed is never the same as the one who wakes them up in the morning, and frequent staff

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movement and changes means that one or both of these is frequently a stranger. (Furneaux, 1981, pp. 64–65)

Furneaux notes that these conditions had remained unchanged for decades, quoting a 1978 report from the National Development Group for the Mentally Handicapped that ‘shortage of staff (among other things) has led to practices at hospitals for mentally handicapped children which should not be found in any service’ (ibid., p.  65). As will be discussed later, Furneaux’s mention of ‘school’ applied generally only from the 1970s forward as education was not provided to most intellectually disabled or autistic children until the late twentieth century. Minimising staff and programming allowed such facilities to be profitable to their owners, if private, or to work within the severe constraints of public provision. This certainly contributed to their spread. But so did the notion that the institution might become a site of cure through medical technology (or, for that matter, hard work and routine, as some argued). Decent men like Dr Down found themselves up against formidable forces as the twentieth century began—not just the cost of running a humane facility but the spread of dangerous new ideas. Charles Darwin’s theory of evolution had been misinterpreted by others in ways that fit well with the competitive nature of modern capitalism. Known as ‘Social Darwinism,’ this pseudo-scientific concept posited that it was natural and desirable for ill, disabled or less intelligent people to be weeded out of the gene pool. But far from allowing natural selection to take its course, Social Darwinists suggested that society was duty-bound to help it along by literally and actively removing less able individuals from the population (Hawkins, 1997). Social Darwinism, the new economic pressures and the Victorian mania for classification created a ‘perfect storm’ effect for people with intellectual disabilities, epilepsy and/or autism. Deprived of a role within the family as a valuable labour source, now seen as a source of social and genetic contagion, and increasingly being given dehumanising labels that set them apart from the rest of society, they faced growing pressure to literally disappear. The result was the appearance of several systems that conspired to make them do just that. The first, of course, was the rapid expansion of the asylum system, as already described. The second was the rise of psychology, first put forward as a new science by Sigmund Freud and his followers, which added novel forms of stigma to conditions affecting the brain and soon intersected with the asylum system. The third was the Child Guidance

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movement, which experimented with applying ideas derived from psychology to more able children and young people as a way to prevent criminal behaviour and ‘maladjustment.’ Unlike other groups that experienced economic disenfranchisement during this time period, developmentally disabled people were barred from emigrating to more hospitable countries, as one of the first results of the spread of Social Darwinist ideas was the adoption of restrictive immigration laws by the US and many other growing nations (Ludmerer, 1972; Baynton, in Longmore & Umansky, 2001, pp. 33–57), including Brazil (da Silva Gomes Ribiero et  al., 2019). These laws typically also linked mental and behavioural differences to ‘race’ or ethnicity. And so instead of benefiting from the ‘escape valve’ offered by emigration, persons with autism, epilepsy and/or intellectual disabilities were often left behind. Colonialism itself was also tinged with eugenic notions that affected disabled children born to settler families: sterilisation of ‘feeble-minded’ children born to white mothers in South Africa was strongly encouraged, as were institutionalisation and marriage restrictions, as a way to preserve supposed white intellectual and physical supremacy (Klausen, 1997). In the face of Social Darwinism, Dr Down’s dream of benign institutions that would teach the educable and care for the most disabled was not fulfilled. In Europe and the Americas, only a very few examples can be found of humane asylums for people with developmental disabilities or severe mental illness from the nineteenth century forward. In fact, the intersection of institutions with Social Darwinism produced some of the most shameful practices imaginable: inmates made to wear sack-like uniforms that marked them as less than human, the common practice of forced sterilisation, severe neglect of their most basic needs and even murder. These practices were excused through an additional narrative of ‘degeneracy’ and its eventual offspring with Social Darwinism: eugenics. Believers in the degeneracy theory claimed that illnesses affecting the brain always got worse. Rather than muddling along through life, the village idiot or local oddball was more likely than not to develop ever more troubling behaviours, including criminality. The presence of such persons posed a moral danger to the community, it was said, and according to the law of evolution, any children they produced were sure to be as unfit or even worse than the parent (Hawkins, op cit.). The term ‘eugenics’ was devised by Charles Darwin’s cousin, Sir Francis Galton, in 1883. Eugenicists encouraged social institutions to take action

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against what they defined as ‘degeneracy.’ They proclaimed that controlled, selective breeding could improve the human race, just as careful breeding of farm animals was known to have encouraged desirable characteristics in livestock. Galton promoted both so-called positive eugenics measures, such as encouraging healthy and ‘racially pure’ individuals to have many children, and ‘negative’ eugenics measures that discouraged or prevented others from having children (ibid.). As historian Edwin Black demonstrates, Galton’s ideas were first turned into an organised eugenics movement in the US, with Connecticut the first state to pass laws prohibiting marriage for ‘feeble-minded’ people and those with seizure disorders in 1896 (Black, 2004). However, eugenics also found a high rate of acceptance within the English upper class and soon spread throughout Europe, into all parts of the world impacted by European and American colonialism, and beyond. Supported by birth-­ control pioneers like Margaret Sanger as well as by those whose motives were overtly classist and racist, eugenic practices included the widespread advocacy and practice of forcibly sterilising disabled people and buttressed the permanent incarceration of ‘defectives’ of all sorts. It also provided a rationale for the outright murder of disabled children, both at birth in case of those with visible deformities and afterwards (ibid.). It should be noted that at no time in the history of human eugenics have such practices ever achieved their desired result. In animal husbandry, breeding to increase the incidence of desirable characteristics in a particular type of dog, for example, almost always has the undesired side effect of also increasing the rate of health problems. So it has also been with humans, as patterns of genetic inheritance are extraordinarily complex. In a rather sloppy way, concepts like Social Darwinism and degeneracy were based on observation. Some of the ‘mental illness’ and childhood disability seen in communities and asylums during this period were due to causes that were then incurable and therefore likely to have a worsening course. Syphilis, for example, was a particularly common culprit. However, these observations were not systematic, the underlying causes could not be understood at the time, and the conclusions drawn were not at all helpful. This was particularly so as regards people with developmental and intellectual disabilities, for which the normal course is continued improvement within the limits of the individual’s intellectual ability, as it is for those with neurological conditions like Tourette syndrome, or episodic mental illness. Appeals to the unquestionable nature of ‘science’ made it all too easy for adherents of eugenics to point to examples of conditions

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seen as socially undesirable and then excuse any action to excise these from society. New ideas emerging from psychology, such as the concepts of psychopathy or criminal insanity, also helped to feed the notion that people with disabilities, illnesses and differences should be subject to stringent social control. Though Freud himself suggested that his theories applied only to people with everyday neuroses, some of his followers took them to illogical extremes or extended them to other groups. Of course, like eugenics, psychology was hardly as scientific as it was presented as being. Nor was psychiatry, which placed itself within medicine as a discipline but often borrowed more from psychology than from any actual knowledge about brain structure or neurochemistry. Rather than gathering evidence from empirical research that could be duplicated, the emerging behavioural sciences were based on the ability of individual clinicians to interact with and understand individual patients, with insights often emerging largely from intuition, and huge generalisations emerging from these specifics. This process was only as logical as the human beings who carried it out—which is to say, often not very logical at all, given the lack of knowledge that practitioners had about crucial topics like normal child development, how the brain works, or the impact of seizures, illness, trauma or injury on the brain. As disciplines, psychology and psychiatry absorbed, combined and redeployed ideas that practitioners had picked up from many sources. These included supernatural or religious, Social Darwinian, eugenic and medical notions. They then combined these into new narratives that purported to explain some of the world’s most troubling problems. In fact, one of the great paradoxes of the early twentieth century is that psychology and psychiatry re-presented folk, superstitious and religious narratives as a discourse that was erroneously labelled as scientific, thereby deflecting real scientific investigation. Psychoanalyst Georg Groddeck presented a clear example of such narratives in relation to disability in 1923. ‘Illness has a purpose,’ he wrote. ‘Whoever breaks an arm has either sinned or wished to commit a sin with that arm, perhaps murder, perhaps theft or masturbation; whoever grows blind desires no more to see, has sinned with his eyes or wishes to sin with them; whoever gets hoarse has a secret and dares not tell it aloud’ (Groddeck, in Dolnick, 1998, p. 25). Groddeck, who has been credited with giving Freud the idea for his concept of the ‘Id’ (ibid.), was expressing a view that became mainstream in the twentieth century—one that

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had an almost immediate effect on how neurological and developmental conditions were seen by the psychologically minded. Though seeming to substitute unconscious psychological impulses or reactions for sin, it actually differs not at all from older religious ideas about disability. However, its propagation by eminent psychologists gave these old ideas new life and created a caste of modern priest-substitutes who claimed the ability to heal. In this system of thought, disability was given a moral meaning that influenced how a clinician might respond to it. Few medical doctors paid these silly notions any mind when it came to broken arms or sore throats: these conditions were visible to the naked eye, and a medical literature already existed upon which doctors could build improved practices. Neurological impairments and differences were another matter, however. Without recourse to sophisticated imaging tools like electroencephalography (EEG) or functional magnetic resonance imaging (fMRI), doctors were faced with symptoms that had invisible causes. These conditions had long been seen in religious and folk narratives as having moral rather than physical meaning, and the new sciences of psychology and psychiatry concurred. As a result, neurological conditions like epilepsy and developmental disabilities did not attract the same attention as others. Although some rudimentary knowledge of treatments had already emerged in the nineteenth century, development languished when compared with research into infectious disease or surgical techniques. Examples of the outcome of this diversion of attention abound and are not limited to autism. Howard Kushner examines the impact of this narrative on the lives of people who experience tics: uncontrollable movements and vocalisations (incidentally, there is a high degree of overlap between tic disorders such as Tourette syndrome and autism). Kushner recounts the celebrated case of the Marquise de Dampierre, a young French woman from an aristocratic family who had been seen by Jean-­ Marc Gaspard Itard, the same clinician who had written some of the earliest possible documentation of autism in his case study about Victor of Aveyron (see Chap. 2). The unfortunate Marquise experienced frequent bouts of ticcing, including uncontrollable swearing. Itard published his observations in 1825. Given the nature of her symptoms, Itard’s account was surprisingly dispassionate, ascribing no moral fault to the sufferer but taking pains to note that the Marquise herself was embarrassed by her outbursts. Itard suggested that an unknown medical cause lay behind her symptoms (Kushner, 2000).

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However, Itard’s case study was hijacked 60 years later by Gilles de la Tourette, a clinician who had never actually met the Marquise. Her story had been mentioned in manuscripts by others over the ensuing six decades, but de la Tourette used it to define a ‘new’ disorder bearing his own name and outlined its supposed moral and psychological causes. By so doing, he defined the boundaries of Tourette syndrome in ways that acted to condemn generations of individuals to punitive, sometimes horrific and ultimately useless treatments. As Kushner so aptly puts it, ‘the (re)production of the story of the marquise who cursed reveals the power of medical “fictions” in the construction of syndromes … emblematic medical cases like that of the Marquise of Dampierre, and syndromes, like Tourette’s, are also literary constructions; and, as literary constructions, they are open to the same sort of textual interpretation and appropriation as any narrative’ (ibid., p. 13). The same process can be observed in the history of autism, as will be illustrated in subsequent chapters of this book. The most important difference between de la Tourette’s narrative and that of Itard was the added narrative of ‘degeneration.’ Although Kushner’s research reveals that the Marquise’s situation did not worsen with age, the version put forth by de la Tourette claimed that it had and so encouraged the use of harsh treatments and isolation in asylums (ibid.). The same narrative was also routinely applied to other neurological conditions, mental illness and developmental disabilities during this time period. These false tales proselytised the public to believe that people with such conditions damaged their communities through increasingly embarrassing behaviour, sexual voracity and violence. This process of renarrativising conditions affecting the mind ran at full tilt throughout the era of psychology. Because it fit well with existing folk and religious ‘moral’ narratives, de la Tourette’s ideas about tic disorders persisted, while the nascent medical narrative implicating genetic and infectious aetiologies for Tourette syndrome did not. A moral meaning was attached to the presence of tics that labelled those experiencing them as pathologically anxious, furtive, oversexed, aggressive and potentially dangerous. Indeed, it was not until the 1990s that researchers again turned to the long-lost medical narrative of Tourette syndrome and made profound discoveries that are finally providing relief to at least some people who experience tics (Swedo et al., 1998). Belief in degeneracy among both clinicians and the general public gathered pace over the ensuing decades and encouraged the further expansion of segregated, isolated institutions. As Trent explains, in regard to intellectual impairment, ‘few appeals to legislators or reports to the public

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failed to warn of the degenerative behaviors of idiots.’ The initial effect of these representations was confirmed by the other half of that narrative, he adds: ‘few reports and demonstrations failed to indicate that even the most morally degenerate idiots could make remarkable progress under careful and intense training in special schools’ (Trent, op cit., p. 19). This pairing of problem and solution cemented institutionalisation as a desirable outcome. The narrative of degeneracy also attached additional stigma to the families of people with developmental disabilities. However, not everyone who worked with affected children agreed that locking them away for life was the best solution. In the early years of the twentieth century, several individuals developed techniques for educating children seen as having special educational needs or psychological difficulties. Among these were Maria Montessori, Vera Schmidt and Lev Vygotsky. Montessori’s work, for example, began when she was appointed head of the Orthophrenic School at the University of Rome, working with children labelled as feeble-minded or mentally ill. Her development of visual and sensory teaching methods, individualisation of lessons and self-­ directed learning was influenced by reading Itard and Seguin (Brehony, 2000). The Montessori Method was not adopted by many special schools, however, and has since been more closely associated with enriched early learning environments for typically developing children from the middle and upper classes. The work of Vygotsky and Schmidt in Russia brought psychotherapeutic ideas to bear in the classroom, as well as cooperative learning methods that can be seen as the forerunners of today’s peer-based interventions. As he was a Communist, Vygotsky’s ideas gained little traction in the West until recently; as he clashed with the increasingly restrictive Stalinist regime and died comparatively young, they did not prevail in the Soviet sphere either. In fact, Vygotsky’s key concept that ‘learning and development are social’ has only latterly been rediscovered by both mainstream and special educators (Newman & Holzman, 1993, p. 25). The history of special education is a subject too broad to cover fully in this book, but it needs to be noted that it has always been controversial— and never more so than in its earliest years. Compulsory schooling for young children is a fairly recent development, and spending money on children seen by some as unlikely to benefit from it was not universally approved. Quite early in the process, a need was seen by those in charge of state-sponsored education to develop some means of weeding out this group, either to exempt them from attendance or to route them towards

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a separate system or lower track. In fact, the first psychometric intelligence tests were developed specifically to facilitate school selection in France in 1905 (Gillberg & Soderstrom, 2003). In both Europe and the US, the establishment of schools for ‘feeble-­ minded’ children gathered pace during the first quarter of the twentieth century. Not all were residential institutions that removed children from their families, and some did promise hope. A few even delivered on this promise. However, entitlement to free, public education for disabled children did not arrive in the US or Europe until at least the 1970s, so few can be said to have benefited until relatively recently. Both day schools and institutions gradually acquired useful tools for working with children who would now be seen as on the autism spectrum, though these were rarely deployed amongst more severely disabled children. The first training courses in occupational therapy, for example, began in the UK in 1930, building on methods that had been employed by some carers, clinicians and institutions since the late nineteenth century (Paterson, in Creek & Lougherm, 2008, pp. 3–16). Speech therapy, too, became a recognised specialty from the 1920s on, as measured by the production of instructional materials and establishment of professional associations (Duchan, 2008). Such methods were adopted by the better schools, but it was hard for them to compete with more typical residential institutions, especially in the face of prevailing ideas about the dangers of degeneracy and the stigma attached to disability. Financial concerns also played a role. As Trent demonstrates, the definition of ‘idiocy’ was expanded in the twentieth century until quite capable individuals who had low IQs, low educational attainment or merely behaviours that their communities found offensive or burdensome were often incarcerated in massive, self-contained institutions. Trent argues that without this expansion, the system of institutionalisation could not have succeeded. To keep costs down, higher-functioning inmates were pressed into service as care workers for the rest and used as forced labour for institutional farms, kitchens, workshops and factories. Education was not a major concern under these conditions (Trent, op cit.). The effect of this shift on the lives of people with learning difficulties or unusual behaviours was that residential schools and institutions became a much more common destination and most gradually lost any rehabilitative mission that they may have had. As the institutionalised population grew, costs followed suit, but the internal economy outlined above perpetuated the system. As Trent puts it, ‘academic training for extra-institutional

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productivity began to shift to vocational training for institutional productivity’ in what he calls the ‘shift to control’ (ibid., p. 83). Those in charge of institutions lacked an appropriate understanding of conditions like mental illness or learning difficulties, and autism had not yet been named and defined. They also had a severely limited repertoire of helpful techniques. However, it wasn’t just the sheer difficulty of assisting people with such conditions that pushed the ‘shift to control’ forward. A regular series of ‘moral panics’ reigned in the twentieth century, spread through the rise of mass media, with new objects of fear appearing every few years. Those with low intellectual ability were soon joined by legions of so-called moral idiots: juvenile delinquents, women who violated community moral codes and individuals considered odd or eccentric (ibid.). Of course, the model of lifelong incarceration did not apply in all countries or in all situations. For example, in the first half of the twentieth century, Canadians still tended to care for children with learning difficulties at home, turning to institutional care as a last resort. Triggers for institutionalisation in Canada tended to be internal family problems or factors specific to the disabled child, rather than the application of external imperatives described by Trent, Foucault and others (Chupik & Wright, 2006). Nevertheless, thousands of individuals with autism must have been caught up in the net of what Foucault has called the ‘Great Confinement’ in the late nineteenth and the early twentieth centuries. People with autism were as yet undifferentiated from other inmates by a special label, but would have shared in the misfortunes of those labelled as idiots, mental defectives, ‘moral degenerates’ and madmen, finding themselves placed outside society as a result. Once applied, Foucault argues, these labels positioned their bearers as ‘Other,’ making them subject to control, coercion and even elimination: Generally speaking, all the authorities exercising individual control function according to a double mode; that of binary division and branding (mad/ sane; dangerous/ harmless; normal/abnormal); and that of coercive assignment of differential distribution (who he is; where he must be; how he is to be characterized; how he is to be recognized; how a constant surveillance is to be exercised over him in an individual way, etc.) … All the mechanisms of power which, even today, are disposed around the abnormal individual, to brand him and to alter him, are composed of those two forms from which they distantly derive. (Foucault, 1979, p. 199)

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In contrast to modern approaches to autism, however, most who would have come to the attention of the authorities in the early period of institutionalisation would still have been adults. As Majia Holmer Nadesan notes: The conditions of possibility for diagnosing a child as autistic … are rooted in the cultural practices and economy of their times. For example, in the 1800s, the standards for classifying individuals as disordered were much less nuanced, the standards of normality much broader, and the mechanisms for social and individual surveillance that we take for granted today simply did not exist. Prior to the late 1800s, children, in particular, would have not have been subject to any form of ‘developmental’ or psychological examination unless their conditions were particularly severe and their parents particularly economically privileged. Indeed, it was not until the 1930s that developmental guidelines were created and used in tracking children’s ‘developmental’ progression. (Nadesan, 2005, p. 19)

Victorian clinicians like Dickinson and Down still lacked a frame of reference for ‘normal’ developmental progress, making it difficult to define and police aberrance when obvious physical markers were absent. This tool emerged from the Child Guidance movement—sometimes called the Mental Hygiene movement—after the turn of the century, bringing the mechanisms of control already in ascendance within the asylums and prisons to bear on the general population. Its proponents created categories of ‘maladjustment’ or behavioural deviance through comparisons to measures of putative normalcy. They also developed ways of measuring and potentially addressing these that required parents, social institutions such as schools, and clinicians to guide children’s development in specific, approved ways. David E.  Armstrong discusses the development of a new notion of childhood as a life-stage in which great care must be taken to identify and avoid pathological development. Specific labelling was seen as crucial to success, Armstrong writes: ‘The nervous child, the delicate child, the enuretic child, the neuropathic child, the maladjusted child, the difficult child, the neurotic child, the over-sensitive child, the unstable child and the solitary child, all emerged as a new way of seeing a potentially hazardous normal childhood’ (Armstrong, in Scrambler, 2005, p. 237). Almost every label that emerged could be applied to some children who would now be perceived as on the autism spectrum, bringing those with mild or no additional intellectual disabilities under the clinical gaze.

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With the exception of the occasional digression in works about adult psychology (for several examples, see Alexander & Selesnick, 1966, pp. 373–374), children had not usually been considered as a subject for psychology in the early years of the twentieth century. After all, the concept of ‘childhood’ as a separate stage of life had only emerged in the seventeenth century. Even then it meant little to the largest part of the population, the peasant and agrarian working class, until the industrial revolution brought mass social change (Ariès, 1962). However, in the twentieth century childhood and child development found a prominent place on the public agenda due to concerns about urban crime and public disorder, which the Child Guidance movement related back to family pathology, child abuse and degeneracy (Behlmer, 1982). Of course, to better understand and combat aberrant development one must study ‘normal’ child development. Jean Piaget (1896–1980) began to research it in the 1920s. His work produced a baseline against which ‘abnormal’ child development could then be measured (Alexander and Selesnick, op cit., pp. 254–256). This project was furthered by the development of supposedly objective tools for measuring intelligence, as noted earlier. The Child Guidance movement placed psychology in the service of state objectives. In the US, concerns about deviant behaviour were an especially important factor in the development of new psychological theories that were specific to children, spurring both government funding and private donations from wealthy industrialists and their charitable foundations to support the Child Guidance movement. Driven on by moral panics about delinquency and firmly grounded in notions of ‘degeneracy,’ it began in earnest in 1909 with the founding of the National Committee for Mental Hygiene (NCMH), soon followed by several similar organisations. The NCMH funded fellowships for young clinicians, encouraged schools to hire psychiatrists and arranged for psychiatrists to provide expert evidence in criminal trials (ibid., p. 377). Under the auspices of this movement, the first centres for research into childhood behavioural disorders were established, along with Child Guidance centres to which ‘at risk’ children might be referred for help. In 1924, this field was further formalised with the establishment of the American Orthopsychiatric Association (AOA), which provided a focus for clinicians. The AOA’s goal was prevention: to reduce levels of adult mental ill health, criminality and aberrant behaviour by attacking the roots of the problem in childhood. Deviant adult behaviour, from

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homosexuality to criminality, was presumed by members of the AOA to result from adverse childhood events or incorrect child-rearing techniques (ibid., pp. 377–388). Adherents like August Aichhorn (1878–1949) felt that inadequate or abusive parenting was a crucial part of the problem, and Aichhorn and others founded residential and outpatient Child Guidance centres where methods based on psychoanalysis could be brought to bear on the most difficult cases (ibid., pp.  378–379). Among the institutions founded by this movement was the Sonia Shankman Orthogenic School at the University of Chicago, which began to operate in 1915 and later played a crucial role in the development of ideas about autism under the direction of Bruno Bettelheim (ibid., p. 379). John Bowlby (1907–1990), whose name is now synonymous with attachment theory—an important concept that continues to have resonance in autism research and treatment—also began his work as part of the Child Guidance movement (Bowlby, 1940). Methods varied, but included milieu therapy, in which the child was removed from the supposedly aberrant family and placed in a more nurturing (or more disciplinarian) environment, parenting education, and interpersonal therapy techniques adapted from adult psychotherapy. Given the central importance the Child Guidance movement gave to proper labelling of types of deviance and the fact that its beliefs encouraged clinical identification and care of children seen as deviant, it was not long before children with behaviours we now associate with autism were tagged with a special label of their own, cementing them permanently in the position of Other. The label of choice was already waiting: the term autism was first used in print by psychologist Eugen Bleuler (1857–1939) in 1911. Originally, it had described an uncommunicative and asocial condition in adult patients whom Bleuler had diagnosed with a mental illness that he himself had named and defined: schizophrenia. Bleuler described these patients as having primitive, illogical mental processes that are not influenced by reality, but are instead characterised by wishful symbolic thought. He also presumed that their ‘autism’ marked a deliberate escape from reality, a kind of coping skill (Zilboorg, 1941). Bleuler himself took great pains to fight some of the trends then current in psychology, including the assumption of degeneracy. He put forth the category of ‘schizophrenia’ to distinguish a certain group of patients from those said by his contemporary, Emil Kraepelin (1856–1926), to be suffering from dementia praecox, a derangement that was defined as worsening with time (ibid.). (In fact, early onset dementia then often emerged

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from unchecked infection with syphilis). In contrast to Kraepelin, Bleuler believed that this other group of patients’ symptoms were not due to a pathological disease process, but instead were exaggerations of normal phenomena that anyone might experience under stress. Another contributor to the future narrative of autism was a young psychologist named Melanie Klein (1882–1960), who adapted Freud’s techniques to psychoanalyse children as young as age two. Klein, who had begun her career as a protégée of Freud’s disciple Karl Abraham (1877–1925), took Freudian ideas to extremes. However, unlike Freud, who saw the core Oedipal conflict emerging later in childhood, Klein held that it began in the earliest days of infancy. In her system of thought, an infant who refused the breast was expressing hostility towards the mother (Alexander and Selesnick, op cit.). Klein’s contribution to ideas about autism will be explored in greater detail in the following chapter. Also part of the mix was the ‘orthopedagogy’ (curative education) movement that prevailed in Germany, Austria and the Netherlands. Although this concept had emerged in the previous century, Edith Sheffer (2018) documents its rapid growth in Austria as part of a post-First World War attempt to apply a scientific approach to family problems. This was analogous to the Child Guidance movement elsewhere, incorporating a vast new network of child-welfare mechanisms that included an expanded Social Work system, home inspections, maternity benefits, sterilisation programmes, coordination between youth services and schools to identify problems, and a variety of institutional forms. For children identified as exhibiting deviant development or behaviour, clinics were founded to diagnose them and apply orthopedagogical techniques that might help. One of these was the Curative Education Clinic attached to the University of Vienna Children’s Hospital, at which Hans Asperger worked from 1931. The confluence of clinicians with an interest in defining and labelling forms of aberrant behaviour in children with the collection of large populations of children in residential institutions and then in the intake of Child Guidance centres and Orthopedagogy clinics finally created the conditions under which autism could emerge as a distinct condition. In the first half of the twentieth century, epilepsy and post-encephalitic disorders, both of which were frequently associated with autism-like symptoms such as repetitive movements and obsessive-compulsive behaviours, were among the most common reasons for institutionalising children, alongside moderate to severe intellectual disabilities (Trent, op cit.). Observation and description of these children’s behaviours permitted

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categorisation of disorders affecting young children, and potentially provided an impetus for developing medical treatments and educational strategies. Psychologists, psychiatrists and allied clinicians training and working in institutions and residential schools also acquired diagnostic skills and concepts that could be applied to less impaired children. The latter group might now come to the attention of a Child Guidance centre, an orthopedagogy clinic or, more rarely, a psychologist or psychiatrist in private practice (ibid.; Sheffer, op cit.). The ever-growing but typically poorly funded institutions also had a more troubling influence on theories that would later be central to debates about autism. Care provided for their young inmates was so poor, so extremely impersonal, that thousands of children fell victim to ‘hospitalism’ (Crandall, 1897; Brown, 1937). In pioneering studies of prevalent conditions in orphanages and homes for the children of female prison inmates, psychoanalyst Rene Spitz (1889–1974) lifted the lid on permanent damage done to infants who were fed, dressed and toileted, but never held or played with. Spitz, like Melanie Klein, was heavily influenced by Karl Abraham’s work. He had found that under conditions of extreme deprivation, young children withdraw, exhibit self-stimulatory behaviours such as rocking, and may even die (Spitz, 1945). Modern readers may be familiar with hospitalism because of its reappearance in huge Romanian orphanages, which were made known to the Western public through a series of news reports in the early 1990s. The case of the Romanian orphanage children exposes the problem that also skewed the findings of early child psychiatrists: the inherent difficulty in distinguishing between organic and environmental issues when studying institutionalised children. Because the Romanian government had outlawed birth control but grinding poverty and public policy forced Romanian mothers into work, many children placed in orphanages were there simply because their parents could not care for them. However, the very same socioeconomic conditions dictated the mass institutionalisation of children with disabilities. As follow-up studies of Romanian orphans adopted in the West have indicated, most of the children exhibiting symptoms of hospitalism improved behaviourally after adoption, but many did not, despite the provision of special education services (Ames, 1997). It is now known that a high percentage of the children in these institutions were affected by developmental disabilities, not hospitalism alone. However, in the twentieth century, research on children who had experienced extreme deprivation was used as a basis for psychological theories

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about the behaviour of children who had not. This had devastating results for children with autism, whose symptoms sometimes resembled those of hospitalism, and who were often placed in institutions because of their symptoms—which then typically worsened. The data itself was sound, but the interpretation was faulty. For example, John Bowlby, head of the children’s ward of the Tavistock Clinic in the UK, built his ‘attachment theory’ by observing the behaviour of institutionalised refugee children in the years after the Second World War (Bowlby, 1951). It was absolutely true that for these traumatised children, disruption of their relationships with their mothers during the early years (and especially when separations occurred within the first six months of life) usually had dire consequences. However, just as the presence of repetitive movements in a child could denote chorea, tics or nervousness, similar behavioural symptoms in children with autism and institutionalised children could have quite different causes. Unable or unwilling to explore these differences, clinicians set the stage for a monumental medical error, with consequences that would persist for decades.

References Adair, R., Forsythe, B., & Melling, J. (1997). ‘A proper lunatic for two years’: Pauper lunatic children in Victorian and Edwardian England. Child admissions to the Devon County Asylum, 1845–1914. Journal of Social History, 31(2), 371–405. Albrecht, G.  L., Seelman, K.  D., & Bury, M. (2001). Handbook of disability studies. Sage. Alexander, F. G., & Selesnick, S. T. (1966). The history of psychiatry: An evaluation of psychiatric thought and practice from prehistoric times to the present. Harper & Row. Ames, E. W. (1997). The development of Romanian orphanage children adopted to Canada. Simon Fraser University. Ariès, P. (1962). Centuries of childhood. Vintage Books. Behlmer, G. (1982). Child abuse and moral reform in England, 1870–1908. Stanford University Press. Black, E. (2004). War against the weak: Eugenics and America’s campaign to create a master race. Four Walls Eight Windows. Bowlby, J. (1940). The influence of early environment on the development of neurosis and neurotic character. The International Journal of Psychoanalysis, 21, 154–178. Bowlby, J. (1951). Maternal care and mental health. World Health Organization.

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Brehony, K. J. (2000). Montessori, individual work and individuality in the elementary school classroom. History of Education, 29(2), 115–128. Brown, F. (1937). Neuroticism of institution versus non-institution children. Journal of Applied Psychology, 21, 379–383. Chupik, J., & Wright, D. (2006). Treating the ‘idiot’ child in 20th-century Ontario. Disability and Society, 21(1), 77–90. Collins, P. (2004). Not even wrong: A father’s journey into the lost history of autism. Fusion Press. Crandall, F. M. (1897). Hospitalism. Archives of Pediatrics, 14(6), 448–452. Creek, J., & Lougherm, L. (Eds.). (2008). Occupational therapy in mental health. Elsevier Health Sciences. da Silva Gomes Ribiero, C., Moio, P.  P., Bovkalovski, E.  C., Chizini Chimin, M. R., & Corradi-Perini, M. (2019). People with disabilities: Eugenics in the early 20th century immigration. Revista Bioética, 27(2), 212–222. https:// doi.org/10.1590/1983-­80422019272303 Dolnick, E. (1998). Madness on the couch: Blaming the victim in the heyday of psychoanalysis. Simon & Schuster. Duchan, J. (2008). A history of speech-language pathology. Retrieved January 17, 2023, from https://www.acsu.buffalo.edu/~duchan/new_history/ overview.html Foucault, M. (1979). Discipline and punish. Vintage Books. Furneaux, B. (1981). The special child: The education of children with special needs (3rd ed.). Penguin Books. Gillberg, C., & Soderstrom, H. (2003). Learning disability. The Lancet, 362(9386), 811. Harcourt, B. E. (2009, October 25). Rethinking the carceral through an institutional lens: On prisons and asylums in the United States. Groupe Européen de Recherche sur les Normativités (GERN) Seminar. Retrieved December 29, 2022, from http://champpenal.revues.org/7563 Hawkins, M. (1997). Social Darwinism in European and American thought, 1860–1845: Nature as model and nature as threat. Cambridge University Press. Heaton, P., & Wallace, G. L. (2004). Annotation: The savant syndrome. Journal of Child Psychology and Psychiatry, 45(5), 899–911. Klausen, M. (1997). ‘For the sake of the race’: Eugenic discourses of feeblemindedness and motherhood in the South African medical record, 1903–1926. Journal of Southern African Studies, 23(1), 27–50. Kushner, H. (2000). A cursing brain?: The histories of Tourette syndrome. Harvard University Press. Longmore, P.  K., & Umansky, L. (Eds.). (2001). The new disability history: American perspectives. New York University Press. Ludmerer, K. M. (1972). Genetics, eugenics, and the Immigration Restriction Act of 1924. Bulletin of the History of Medicine, 46(1), 59–81.

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Meyer, M. (2019). ‘Work conquers all’: Psychiatry, agricultural labor, and the Juliano Moreiro Colony in Rio de Janiero, Brazil (1890–1958). Palgrave Communications, 5(99). https://doi.org/10.1057/s41599-­019-­0305-­y Nadesan, M. H. (2005). Constructing autism: Unravelling the ‘truth’ and understanding the social. Routledge. Newman, F., & Holzman, L. (1993). Lev Vygotsky: Revolutionary scientist. Routledge. Porter, R. (1987). Mind forg’d manacles: A history of madness in England from the restoration to the regency. Harvard University Press. Raoult, S., & Harcourt, B.E. (2017). The mirror image of asylums and prisons: A study of institutionalization trends in France (1850–2010). Punishment & Society, 19(2), 155–179. https://doi.org/10.1177/1462474516660696 Rushton, P. (1988). Lunatics and idiots: Mental disability, the community, and the Poor Law in north-east England, 1600–1800. Medical History, 32, 34–50. Sheffer, E. (2018). Asperger’s children: The origins of autism in Nazi Vienna. W.W. Norton and Co. Scrambler, G. (Ed.). (2005). Medical sociology: Major themes in health and social welfare, volume I: The nature of medical sociology. Routledge. Siegel, D., Minshew, N. J., & Goldstein, G. (1996). Wechsler IQ profiles in diagnosis of high-functioning autism. Journal of Autism and Developmental Disabilities, 26(4), 389–406. Spitz, R. A. (1945). Hospitalism: An inquiry into the genesis of psychiatric conditions in early childhood. The Psychoanalytic Study of the Child, 1, 53–74. Stiker, H. (2000). A history of disability. University of Michigan Press. Swedo, S.  E., et  al. (1998). Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAs): Clinical description of the first 50 cases. American Journal of Psychiatry, 155, 264–271. Trent, J. W. (1996). Inventing the feeble mind: A history of mental retardation in the United States. University of California Press. Ward, O.  C. (n.d.). Dr John Langdon Down of Normansfield. Langdon Down Museum of Learning Disability. Retrieved January 17, 2023, from https:// langdondownmuseum.org.uk/dr-­john-­langdon-­down/ Zilboorg, G. (1941). A history of medical psychology. W.W. Norton & Co.

CHAPTER 4

The Social Construction of Autism

For many years, practitioners working with children seen to have behavioural, psychological or developmental problems had little guidance. Textbooks referred to children only in relation to the childhood experiences of adult patients, and child psychology and psychiatry did not exist as recognised specialties. The few clinicians who did see this population in private practice applied adult-based psychoanalytic theories or used the principles put forward by the Child Guidance movement to work primarily with the affected child’s parents, school and local social agencies (although in cases where the child was seen as ‘feeble-minded’ or severely disturbed, removal from the family remained a common remedy) (Jones, 2002). Even within residential schools and institutions, direct intervention with individual children was actually quite rare: the emphasis was on group-based work and on behaviour control, often through punitive and even abusive methods. One can imagine that beleaguered clinicians were absolutely thrilled when the first textbook in English on child psychiatry finally appeared in 1935. It was written by a man whose career began in the world of the institutionalised child and whose ideas were intertwined with those of the Child Guidance movement (ibid.) but also informed by a medical perspective: Dr Leo Kanner. Kanner (1894–1981), an Austrian, studied medicine in Germany, after which he worked for Charité, the largest hospital in Berlin. After

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emigrating to the US in 1924, he began his working life in earnest as an assistant physician at the State Hospital in Yankton, South Dakota. There he literally taught himself paediatric psychiatry, a discipline that did not yet exist formally, by testing techniques used with adult patients on institutionalised children. His tenure at the State Hospital came during a period of crisis in the institution. As its official history states, ‘the situation at Yankton was almost impossible to handle, with an increasing rate of admissions and a decreasing budget.’ In this era before psychiatric medications, the use of demeaning and dangerous practices such as straightjacketing was common (South Dakota Department of Social Services, 2020, n.p.). The facility itself was a relatively new and attractive building, but admission of children was recent. The previous director had incorporated ideas about the healing power of aesthetics and work into the treatment regime, and adult patients worked to produce their own food (Katterhagen, 2020), but there was no special care programme in place for children. It may have been here that Kanner first encountered selective mutism (ibid.). Kanner moved into a research career in 1930 under the auspices of the Johns Hopkins University School of Medicine in Baltimore, Maryland, where he specialised in the study of the ‘subnormal’ child. He eventually founded Johns Hopkins’ Children’s Psychiatric Service, where he held the first academic post in child psychiatry in the US. At Johns Hopkins, Kanner began working with atypical or disturbed children referred to its Harriet Lane Home, including a small number whom he would later differentiate with the label of ‘autism.’ Much of his work in this capacity involved convincing paediatricians that problems ranging from bed-wetting to unusual behaviours had environmental and psychological roots, and getting them to seek help from experts like himself (Kanner et al., 1953). In Germany, another young clinician was also working with and studying both institutionalised and outpatient children with similar difficulties. Hans Asperger (1906–1980) began his career with a post in the children’s clinic of the University of Vienna in 1932, moving to the university clinic in Leipzig two years later; he also served the university as a lecturer for many years. In the post-war period he was in private practice from 1950 to 1986, as well as heading the University of Vienna’s Children’s Clinic from 1962 to 1977 (Feinstein, 2010). Asperger saw education rather than talk therapy or medication as the most helpful methodology for working with

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children seen as having psychiatric conditions, and his clinical work therefore focused on ‘curative education,’ known as Heilpädagogik (ibid.). Asperger, Kanner and their contemporaries in the first half of the twentieth century operated within the constraints of societal beliefs about disability. These affected not only notions about causation and treatment but also ideas about the social status and social roles of those seen as disabled. As noted in the previous chapter, support for eugenics was now so widespread as to be unremarkable. As a young man Kanner attended several lectures by Adolf von Harnack (1851–1930), founder of the Kaiser Wilhelm Institute for Anthropology, Human Heredity and Eugenics (Neumarker, 2003). Asperger, we now know, was complicit in some of the Nazi regime’s most horrific eugenic practices (Sheffer, 2018). In fact, by this time the desirability of actual murder of children with developmental or physical disabilities was expressed at the highest levels in the US. The following extract from a 1942 issue of the American Journal of Psychiatry, the official organ of the respected American Psychiatric Association (APA), provides a flavour of dominant views during the time when these two influential practitioners began their careers: I believe when the defective child shall have reached the age of five years— and on the application of his guardians—that the case should be considered under law by a competent medical board; then it should be reviewed twice more at four-month intervals; then, if the board, acting, I repeat, on the applications of the guardians of the child, and after three examinations of a defective who has reached the age of five or more, should decide that that defective has no future or hope of one; then I believe it is a merciful and kindly thing to relieve that defective—often tortured and convulsed, grotesque and absurd, useless and foolish, and entirely undesirable—of the agony of living. (Kennedy, 1942)

Written by the neurologist Robert Foster Kennedy (1884–1952), the first president of the Euthanasia Society of America and also the president of the American Neurological Association, this pronouncement was endorsed by the editorial board of the APA in the same issue. Along with epileptologist William Lennox, Kennedy became one of the most prominent medical voices calling for euthanasia of disabled children in the US. His views were published (and acclaimed) not only in medical journals but also in the pages of popular magazines and newspapers, such as Colliers and the New York Times (Offen, 2003).

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Not all practitioners agreed. In fact, one of the most prominent dissenting voices was that of Leo Kanner. In a published response to Kennedy, he noted that definitions of disability, and particularly of ‘feeble-mindedness,’ were varied, that euthanasia offended principles of parental love and democracy, and that people with lower intellectual ability performed valuable roles in society. However, like most practitioners of his time, he nevertheless supported forced sterilisation of at least some disabled people (Kanner, 1942). In Asperger’s world, there was no opposition to eugenics: the creation of a ‘master race’ through both positive and negative eugenic practices was the cornerstone of Nazi policy. Adolf Hitler began a programme of widespread forced sterilisation immediately after assuming power in 1933 as part of this pseudo-scientific effort. The programme’s instructions soon moved on to euthanasia, and inmates of Germany’s institutions became the first victims of the Holocaust well before concentration camps were established for Jews and other ‘undesirables.’ It is estimated that at least 40,000 disabled adults were killed as part of this effort, which was known euphemistically as the T-4 Programme (Müller-Hill, 1998). Efforts aimed at children seen as lacking ‘social feeling’ included preventative detention in ‘labour camps’ or hospitals, sterilisation and murder. Hans Asperger referred children who he thought could not be helped to one such killing centre, the Am Spiegelgrund hospital in Vienna (Czech, 2018.) The place where treatment or care and eugenics intersected was diagnosis. Unlike disabilities that have obvious physical markers, conditions affecting the brain can be interpreted in different ways. This process depends on cultural norms, dominant and subcultural belief systems, and the relative flexibility of these, just as much as it relies on the availability of widely accepted diagnostic instruments. When one looks at the practice and use of diagnosis in these conditions, only one thing is certain: the process of naming and defining a condition begins to attach specific meanings to it that can go beyond its actual impact on the affected person. The story of autism illustrates this point all too clearly.

Naming Autism In 1943, Leo Kanner published a set of case studies that took the definitive step towards constructing autism as a distinct entity. ‘Autistic Disturbances of Affective Contact’ coupled descriptions of several patients with Kanner’s ideas about how they were similar. It marked the first use of

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the terms ‘autistic disorder’ and ‘autism’ in English to describe a group of children said to exhibit unique symptoms (Kanner, 1943). His semantic choice, his selective use of case studies, and the Freudian dominance of psychology and psychiatry during this period set the direction for the next 40 years of research and treatment and continue to have an impact. Although his work did not come to the attention of most English-­ speaking clinicians until much later, Asperger and his Austrian colleagues had been using ‘autism’ and ‘autistic psychopathy’ to describe very similar children for some years (Sheffer, 2018). Autism researcher Adam Feinstein also presents evidence that Kanner may have been aware of Asperger’s earlier work, including his use of terminology (Feinstein, op cit.). And as historian Edith Sheffer has shown, while in 1937 Asperger gave a lecture in which he decried the use of psychiatric diagnoses for children, the following year he publicly introduced the diagnosis of ‘autistic psychopathy’ and applied it to children under his care. Sheffer places this shift in the context of Germany’s takeover of Austria just a few months previously, and notes that Asperger went on to stress the importance of understanding why some children lack the ability to function well in social groups. As social functioning was the cornerstone of Nazi ideas about appropriate human behaviour, this focus cohered with the new direction of movement in his workplace (Sheffer, ibid.) As discussed in Chap. 3, ‘medical fictions’ in the form of case studies that couple observations and interpretations have been instrumental in the construction of new neuropsychiatric syndromes, often with detrimental results for patients whose individual narratives were all too frequently bent to fit the patterns set (Kushner, 2000). This is a prime illustration of Foucault’s statement that ‘individual variations are spontaneously effaced by integration’ in the process of constructing medical certainty (Foucault, 2003, p. 124). Kanner’s set of initial case studies, while helpfully descriptive and well-intentioned, followed this course. Since Bleuler’s term autism was already in use by psychiatrists to describe a state of seeming self-absorption in adults with schizophrenia, Asperger, Kanner and those who followed them created an immediate semantic and conceptual link between the children they described and adults with schizophrenia. It also carried within it a descriptive definition: ‘autism’ is derived from the Greek word autos, meaning ‘self,’ coupled with the suffix -ism, which is used to denote a condition, generally one characterised by an excess of something (e.g. hirsutism: excessive hairiness) or a belief system (e.g. Hinduism: belief in the Hindu religion). With

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regard to schizophrenia, the word ‘autism’ denoted a deliberate turning away from the rest of the world, an ‘excess’ of self-absorption. This wasn’t an accurate description of how schizophrenia works, either, but that was not known at the time. The simple choice of this familiar term as the name for a newly identified syndrome formed the basis of a specific narrative of autism. It positioned it as a psychological rather than organic disorder and as a defence mechanism deliberately chosen by the affected individual—even though Kanner himself felt (but could not prove via empirical evidence) that autism and similar conditions arose from an interplay between innate traits and environment. Accordingly, for the next four decades, breaking through the supposedly self-imposed psychological barriers of the autistic child became the focus of most mainstream research and treatment decisions about autism. Kanner’s initial paper was the talk of the psychological and medical communities in the English-speaking world and may yet be the most frequently referenced article in the history of autism. It did not fade away as the years went by, but was reprinted in a 1968 issue of the medical journal Acta Paedopsychiatrica; in J.G.  Howell’s Modern Perspectives in International Child Psychiatry the following year; in another book edited by Kanner himself, Childhood Psychosis: Initial Studies and New Insights (1973); and again in the 1985 Classic Readings in Autism, edited by Anne M. Donnellan. It has been translated into dozens of languages for publication in non-English-language medical journals and today is widely available on the Internet. Largely on the basis of his first article (though he did write many more), Kanner’s name has become so closely associated with autism that the terms ‘Kanner’s autism’ or ‘Kanner syndrome’ are still sometimes used to denote a particular form of the condition characterised by severe impairment in communication and social behaviour, and highly idiosyncratic and restricted patterns of interest and activity. British autism researcher Uta Frith’s translation of Asperger’s papers into English did not occur until the 1980s, when their reappearance coincided with renewed interest in the broader autistic spectrum. Asperger was especially fascinated with the ‘splinter skills’ and high intelligence exhibited by some of his young patients, so his name is now associated with a specific sub-type of autism without intellectual disabilities or speech delay: Asperger’s syndrome.

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Leo Kanner’s Case Studies Because psychology was built on a foundation of case studies rather than medical research, Kanner’s decision to place this category of children within that realm ensured that the personal narrative would take centre stage in autism research right from the beginning. This ‘personal’ narrative would not be authored by the patient, although some portion of it might be contributed by a member of the patient’s family. It would instead be penned by the psychologist, psychiatrist or allied professional, who would both tell and interpret the story. In ‘Autistic Disturbances of Affective Contact,’ Kanner provided brief case studies of 11 children. These went on to form a specific model for other case studies in autism research—indeed, it was fairly common for later case studies to refer explicitly to Kanner’s seminal work, either to note differences or to confirm similarities. He began with a statement that firmly positioned autism as extraordinarily different from other conditions affecting children: Since 1938, there have come to our attention a number of children whose condition differs so markedly and uniquely from anything reported so far, that each case merits—and, I hope, will eventually receive—a detailed consideration of its fascinating peculiarities. (Kanner, 1943, p. 217)

This positioning reduced the likelihood that clinicians would focus on similarities between these children and others they may have observed, such as children with Sydenham’s chorea or Tourette syndrome (who have been known to combine obsessive-compulsive behaviours with unusual movements), children with intellectual disabilities or typically developing children experiencing severe anxiety. Also, although Kanner described each case as having its own ‘fascinating peculiarities’ (ibid.), by combining them to define a new syndrome he erased these potentially important differences and accentuated similarities instead. Kanner’s case studies followed a pattern used by most psychologists and psychiatrists in his era, as through notes entered on a standard form have later been pieced together into a more readable conventional narrative. Each case began with a paragraph stating the child’s name, age at first clinic visit and the reason for this initial admission. This reason is variously presented as a direct quote from a parent, as a quote or paraphrase of the reason given by a referring professional, or as a simple description of

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symptoms that may be Kanner’s observations or a summary of case notes received. This introductory material was followed by a life history narrative, generally including birth and illness history, achievement of developmental milestones, and comments about the child’s development and behaviour. Kanner indicated that at least some of this descriptive material came from written personal accounts given to him by parents. For example, the story of five-year-old Donald [Triplett] begins with a note that ‘before the family’s arrival from their home town, the father sent a thirty-three-page typewritten history that, though filled with much obsessive detail, gave an excellent account of Donald’s background’ (ibid., p. 218), and included the following passage: He had a ‘disinclination to play with children and do things children his age usually take an interest in.’ He gained weight but developed the habit of shaking his head from side to side. He continued spinning objects and jumped up and down in ecstasy as he watched them spin. He displayed an abstraction of mind which made him perfectly oblivious to everything about him. He appears to be always thinking and thinking, and to get his attention almost requires one to break down a mental barrier between his inner consciousness and the outside world. (ibid., pp. 218–219)

This is a classic description of stereotypical behaviours and other differences associated with autism, but includes interpretations formed without having access to Donald’s own thoughts and feelings. Each account also includes a description of the child’s parents, including educational background and professional attainment. Several include notes about unusual or notable relatives. Donald’s parents are described as follows: The father, whom Donald resembles physically, is a successful, meticulous, hard-working lawyer who has had two ‘breakdowns’ under strain of work. He always took every ailment seriously, taking to his bed and following doctors’ orders punctiliously even for the slightest cold. ‘When he walks down the street, he is so absorbed in thinking that he sees nothing and nobody and cannot remember anything about the walk.’ The mother, a college graduate, is a calm, capable woman, to whom her husband feels vastly superior. (ibid.)

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As in the example above, some statements are bracketed by quotation marks to indicate that they are the words of others, but the speakers are not identified. The quoted parts above appear to come from Donald’s mother, but Kanner does not say so explicitly. They could also be from his father’s written account, mentioned earlier, or from the child’s clinical notes. This material is followed by information about the child’s clinical presentation. Some data are acknowledged to come from reports by other clinicians: for instance, part of the report on Donald is attributed to physicians Eugenia S. Cameron and George Frankl at the Child Study Home in Baltimore, Maryland. This facility was one of many founded by adherents of the Child Guidance movement, and Frankl was one of Hans Asperger’s former colleagues. It is significant that medical sources are named, while quotes that appear to be from family members because of their context are frequently unattributed. Some quotes from the children are included in Kanner’s paper, but only to illustrate their idiosyncratic use of language. Donald, for example, is described as repeating favourite words and phrases out loud, seemingly at random (in a child with Tourette syndrome, this would be called a vocal tic), as repeating back things said to him (a symptom known as echolalia, also seen in Tourette syndrome) and as having some intriguing personal idiosyncrasies of speech, such as using the names of the Dionne quintuplets to designate colours. Other than this, there is very little sense of the children as active agents or participants in the diagnostic process, other than as test-takers. For example, Kanner provides a sample of Donald’s speech to demonstrate its seeming lack of functional context: At mealtime, repeating something that had obviously been said to him often, he said to his mother, ‘Say “Eat it or I won’t give you tomatoes, but if you don’t eat it I will give you tomatoes,”’ or ‘Say “If you drink to there, I’ll laugh and I’ll smile.”’ (ibid., p. 219)

Kanner’s voice is also rarely heard in these descriptions, in the sense of the use of first-person pronouns, although those of other first-person observers are presented as quotes or in paraphrased segments of text. The main body of the material is presented in third person, and the language is relatively dispassionate, aside from the doctor’s use of descriptive words such

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as ‘remarkably’ and ‘skilfully’ in connection with feats of memory or other accomplishments. In this respect, it adheres closely to the tradition of medical case presentation as described by Kathryn Montgomery Hunter. She writes: ‘The “I” that is the subject of these actions [observing and prescribing] is never spoken … for the physician-narrator (who may need the case presentation’s soothing abstraction most of all) is all but effaced from the case presentation’ (Hunter, 1991, p. 63). A small portion of Kanner’s case study collection is made up of more or less objective measures, such as psychological and intelligence testing, and physical data, such as electroencephalogram results and measurements of head circumference. Some cases include detailed follow-up information from Kanner, other clinicians, parents or schools. Each concludes with information on short-term outcome, generally comprising accomplishments and/or placements made. As Kanner did not provide any direct treatment, there are no descriptions of therapeutic methods or results. Line for line, Kanner recounts and summarises far more data on the children’s families, sometimes going back as far as two generations, than on test results or physical data. Family descriptions tend to focus on unusual characteristics, such as ‘the mother, supposedly a college graduate, a restless, unstable, excitable woman …’ (Kanner, 1943, p.  266). Much of this information is presented as quotations—‘a married sister, “high-strung and quite precocious,” is a singer’ (ibid., p.  264)—as if derived from a written parent questionnaire or reports from other professionals. Any material from other medical professionals’ reports is paraphrased rather than being presented in quotations, indicating that these contents are considered factual because of their source, whilst parent reports may be suspect. Kanner uses a special section at the end of his initial paper to relate these cases to the current literature and to say what he thought his observations suggested about aetiology. His final comments are explicitly intended for fellow professionals, referred to as ‘we.’ These observations readily show where his suspicions and assumptions lie, although his account is contradictory. In this conclusion, Kanner does not attribute psychological significance to either the children’s behaviour or their unusual speech patterns, such as pronoun reversal. Although he does observe that many of the parents are unusually intelligent, obsessive and ‘cold,’ he does not explicitly suggest a causal relationship between parental behaviour and autism. Instead, he hypothesises that autism may result from an inborn brain difference and suggests further study.

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This is not to say that his descriptions of parents are not value-laden: they are similar to the judgements found in most psychiatric and Child Guidance literature of his time, which is to say that characteristics deemed pathological or unusual are highlighted, and any academic and professional achievement in mothers and female relatives is described as markedly odd, perhaps even indicative of psychiatric problems. Kanner later attempted to deflect attention away from these descriptions: The concluding sentence of the 1943 article said, ‘here we seem to have pure-culture examples of inborn autistic disturbances of affective contact.’ … Some people seem to have completely overlooked this statement, however, as well as the passages leading up to it and have referred to the author erroneously as an advocate of postnatal ‘psychogenicity.’ (Kanner, 1971, p. 141)

Unfortunately, a pattern had been set that would determine the direction of blame. Indeed, despite the disclaimer reproduced above, Kanner’s 1971 article continued to highlight the ‘unusual’ traits of the case study subjects’ relatives without additional comment on what the purpose of this data might be, if not to indicate psychogenicity. A modern reader might assume its inclusion is to indicate the possibility of a genetic cause, but as his report states in an aside many pages after the last parent description appears, in 1971 ‘genetic investigations [were] barely beginning to be conducted’ (ibid., p. 145). Kanner is unable to make much of the objective data taken and does not pay attention to some observations offered by the parents. Serious feeding disturbances are noted in six of the eleven accounts, for example, but these are not linked to developmental and behavioural differences in his reports. Other potential clues, such as large head size and individual histories of infectious illness, are also noted without further comment. In no case does he directly compare the symptoms described with those of other, better-known childhood neuropsychiatric conditions. Indirect comparisons can be found in the text, however: the use of the word ‘obsessive’ invites comparison with obsessive compulsive disorder; the word ‘echolalia’ has a clinical association with Tourette syndrome; and, as noted at the beginning of this chapter, ‘autism’ and ‘autistic’ carried with them an association with schizophrenia. All three of these conditions were believed at that time to be purely psychological, with no organic aetiology involved.

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Kanner did not offer a definite prognosis in 1943, although he indicated that the children from his initial study group had continued to develop and that he was cautiously optimistic. However, his 1971 follow­up article reveals that over half of the children were eventually institutionalised, generally in situations that were unsuitable or even abusive. Kanner was well aware that this was an unnecessary and negative outcome, stating that ‘one cannot help but gain the impression that State Hospital admission was tantamount to a life sentence’ (ibid., p. 144). Donald grew up to live a more or less normal adult life, with a high degree of involvement in his small-town community, albeit as a bachelor who lodged with his elderly parents. He completed mainstream school, worked in his family’s business, learned to drive, and enjoyed travelling and playing golf (Donvan & Zucker, 2010). Another ‘success story’ (Kanner’s words) from the original 11 held a repetitive job as a duplicating machine operator and, again, lived at home with his parents (ibid., pp. 143–144). However, as no autism-specific therapies, special education services or environmental adjustments were available to these children, it would be wrong to take Kanner’s report as representing the ‘natural course’ of autism, as so many have erroneously done. Instead of receiving appropriate understanding and help, most of the children he saw received no education, ‘special’ or otherwise, and most probably experienced counterproductive and harsh treatment.

Melanie Klein and ‘Richard’ If Kanner’s case studies had been unique artefacts, they might have had less power to cement a particular image of autism in the medical and public mind. However, they were joined by first a few, then a deluge of similar descriptions. Many of these explicitly referred to Kanner’s work, but even those that did not call on the same assumptions and cultural beliefs emerged with broadly similar interpretations. The main differences that can be observed lie in which treatment system the practitioner tended to buy into. Coming from the Child Guidance school of thought, Kanner wanted to see the roots of autism in family pathology or environment, but other things he observed made him consider the potential for an organic cause. For those coming from a purely psychoanalytic point of view, an organic cause was unthinkable. A good example can be seen in another case study frequently referenced by autism researchers (e.g. Tustin, 1992; Alvarez et  al., 1999),

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psychoanalyst Melanie Klein’s account of her four-month treatment of the child she called ‘Richard’ or ‘Dick.’ Klein (1882–1960) wrote more than one variant of this narrative, but the best-known version is presented in her book Narrative of a Child Analysis: The Conduct of Psycho-analysis of Children as Seen in the Treatment of a Ten-Year-Old Boy (1961). It presents Klein’s notes on 93 therapy sessions and is described as a ‘case-­history’ (Klein, 1961, p. 11). Klein, who had begun her career as a protégée of Freud’s disciple Karl Abraham, took Freudian ideas to extremes. Unlike Freud, who believed that a core Oedipal conflict emerged later in childhood, Klein held that it began in the earliest days of infancy. In her system of thought, an infant who refused the breast was expressing hostility towards the mother. As a result she psychoanalysed children who were as young as age two. The clinical work described in her case study of Richard took place in 1941, so it actually predates Kanner’s paper on autism. As a result, the child is not given that label in the text. Instead, a variety of pejorative terms—such as ‘anxious,’ ‘schizoid,’ ‘paranoid,’ ‘manic,’ ‘worried’ and ‘depressed’—are used to describe his affect and behaviours. However, Klein later adopted the new terminology and described Richard as ‘autistic’ in the later years of her career. Klein’s study of Richard is written in first person and follows the Freudian model, in which the analyst’s observations are presented alongside purported direct quotes from the patient, digressions into personal and family history, and theoretical concepts. The book also incorporates several of Richard’s drawings. Although Klein’s account of Richard’s analysis is filled with words that purport to be the child’s, it is notable that she rarely seems to listen to what he actually has to say, nor does she attempt to understand his personal system of symbols. People with autism often develop highly idiosyncratic symbolic systems, in which words or objects have specific personal meanings (e.g. see Grandin & Scariano, 1986). Although Richard sometimes offers information to his analyst about such meanings, Klein instead insists on applying a typical Freudian symbolic system—even though she acknowledges that she has to teach the child what he is supposedly saying symbolically, including explaining what ‘sexual intercourse’ and ‘genitals’ are. Her method of analysis assumes that the communication difficulties, social deficits and unusual behaviours exhibited by this pre-pubescent child are due to deep-seated conflicts about sex and sexuality.

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It is significant that far more space is given to Klein’s ‘interpretations’ and notes than to Richard’s actual words. Although the analyst questions the veracity and meaning of nearly everything the child says, she rarely expresses any uncertainty as to her own observations. Here is a typical example of the text: Richard got up; he dusted the room, stamped hard on the little stools, kicked a ball about, which had to be taken out of a cupboard, saying he did not want it to be there. He shut the cupboard door, saying that he did not want the ball to jump into the cupboard; it might get lost in there and he would not be able to get it out again. Then he threw another ball at the first one and said that they were ‘having fun.’ Mrs K. interpreted that Richard had shown that he wanted to take the father’s genital, represented by the ball, out of Mrs. K. and Mummy (the cupboard) and to play with it himself. This was expressed by the two balls ‘having fun’; he had used the same expression for what he was doing secretly with [his dog] Bobby in his bed, which meant doing something with the dog’s genital. Mummy was not to know about this, not only because she would in any case object to it, but also because he felt that Bobby stood for Daddy and [his brother] Paul and therefore Mummy would feel that Richard was robbing her of them. … This increased his wish to take in Daddy’s ‘good’ genital, which would give him pleasure as well as reassure him against the fear of the bad penis. But he feared that he would in this way deprive Mummy, who he also felt contained a ‘good’ Daddy genital. (Klein, op cit., p. 88)

If a reader goes through this material reading only Richard’s words and Klein’s descriptions of his actions without her added ‘interpretations,’ a rather different impression might emerge: one of a young child who is frightened and upset by the war; fascinated by trains, ships and planes; emotionally connected with his family and bored rigid by therapy sessions. Although Richard’s obsessional interests were apparently strong enough to cause him to be excluded from school, these are addressed only in the context of Freudian symbology. But, as Feinstein quotes Kanner as saying about Klein, she ‘saw everything in only one way, and that was her way’ (Feinstein, op cit., p.  23). Richard’s drawings are also presented in the text, but framed on either side by Klein’s interpretations, anchoring them to her preferred readings. The analyst is portrayed, both in Klein’s narrative and in the notes to other professionals that accompany it, as an omniscient observer and

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healer. This piece was written for a professional or student audience, and presents a self-affirming (and even self-aggrandising) portrayal that is likely to have a strong appeal to such readers. Indeed, it can be said that Klein’s self-portrayal is far more powerful than her portrayal of Richard. The strength of this work may lie more in its direct appeal to a chosen audience than in the utility of the actual analytic material. It illustrates what child analysis might consist of and promises practitioners and students that taking on the mantle of therapist will provide them with a high degree of personal competence and power. It acts as an initiatory document, promising to reveal secret techniques that, once mastered, will convey special status and power. This promise enticed and sustained many lesser practitioners who worked with autistic children over the next decades. For example, the governess of Freddie Frankland, an autistic child, was so shocked at what she overheard during one of his therapy sessions with Klein’s protégée Gwen Evans that she reported the following one-sided conversation to his family: ‘Is Freddie afraid Mummy Evans is going to throw him out of the window? Is Freddie afraid that Mummy Evans is going to lock him up in a big dark cupboard?’ (Frankland, 1995). Evans apparently thought that young Freddie had either been subjected to such treatment by his mother or that he had somehow developed a fear that his mother wished to do such things to him. Needless to say, the expected breakthrough never came, and the autistic child became an autistic adult. In her recent book on Hans Asperger, Edith Sheffer presented another tale that shows how clinicians’ diagnostic assumptions and biases could have potentially dangerous results. She looks at the case notes on five children—three boys and two girls—with similar symptoms who spent time in Asperger’s clinic. Similar behaviour in boys and girls was attributed to different causes, and wildly different prognoses (and diagnoses) were given based on gender. ‘Asperger interpreted boys’ relationship difficulties and impulsivity as autistic psychopathy, while his clinic staff, in keeping with long-standing trends in European and American psychiatry, interpreted girls’ relationship difficulties and impulsivity as hysterical and female, related to their menstrual cycles,’ she wrote. ‘Whereas Asperger’s department dismissed the girls as irremediable and sent them to Spiegelgrund, the boys’ apparently worse behaviour in the clinic received intensive care’ (2018, p. 169).

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The Power of Narrative It can be argued that the persistence of case studies like those written by Kanner and Klein, and their enduring prominence against a background of other types of research, is due to the power of narrative. ‘When reading Kanner, I was much taken with his case descriptions,’ said autism researcher Uta Frith. ‘I have read and re-read these papers many times. I have always admired Kanner’s clinical wisdom’ (Frith, U., personal communication, 5 May and 13 May 2005). Although Frith chose to follow a neuroscience-based line in her own subsequent research, she acknowledged the power of mythic narratives on ideas about autism, describing herself as ‘fascinated and captured’ by both the narratives and the reality (ibid.). Narratology, as part of literary theory, suggests that stories like these are ‘constructed, exchanged, and heard as the outcome of human interaction in a sociopolitical context’ (Malterud, 2000, p. 604) and that while the meaning of medical narratives may be contested, the authority added by medical authorship can increase the power of their preferred interpretations. Doctors compose a tale with a particular plotline as they seek to make sense of a patient’s symptoms. If the doctor cannot find a plausible definition, Kirsti Malterud adds, the patient (or in the case of a young child, the patient’s carers) may come under suspicion—for example, she notes that with unexplained conditions like fibromyalgia that are more common in female patients, symptoms may be ascribed to mental illness rather than medically investigated due to the persistence of ideas about women and ‘hysteria’ (ibid.). This is echoed in Sheffer’s account (op cit.) of how girls with developmental disorders were viewed more negatively in Asperger’s Vienna clinic. Historian Hayden White (1987) has made similar claims about historical writing in general, a genre that has much in common with the medical case study. Both histories and case studies use a narrative form to highlight the significance of events that might otherwise seem unrelated or chaotic. Both forms of narrative claim an authoritative position by virtue of presenting ‘truth’ or ‘realism.’ But as White explains, both the narrative as literature and the ‘truths’ it reveals are created through choices made by authors, including those based on ideologies, such as which pieces of evidence to include or emphasise. The medical narrative, then, presents an account of one professional’s understanding rather than absolute fact.

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Although clinicians generally see themselves as neutral observers of clinical or laboratory phenomena, the disparity of power between doctor and patient, and the belief systems held by physicians about patients, exert a powerful influence on the direction and potency of the narratives they produce. Donna Haraway is one researcher who has written extensively as regards the pretence of medico-scientific neutrality on both the observer and the observed. Haraway (1991) draws particular attention to how the ‘partial perspective’ of medical observers limits both the information gathered and the way it is presented, interpreted and used. As Kathryn Montgomery Hunter also explains, ‘both the investigation of the malady and the plot of the narrative that reports it are shaped by the diagnostic hypothesis’ (Hunter, op cit., p. 65). In the case of autism, from the very earliest case studies a narrative structure emerged that implicated parental causation, downplayed evidence of organicity, looked at autism as unrelated to other forms of neurological disability, denied voice to people with autism themselves and privileged medical views. Because so little empirical evidence could be presented, these case studies also often contained contradictory views, adding to rather than dispelling confusion.

Autism Meets Behaviourism Although Freudian or ‘psychodynamic’ psychology provided the most prominent narrative of autism during the decades immediately after the condition’s naming, other stories were also constructed alongside it. The behaviourist school of psychology, which had emerged during the second and third decades of the twentieth century, presented a counterpoint. It formulated a set of ideas about autism that stood in stark opposition to those of Kanner and his contemporaries, although behaviourists sometimes drew on their work. The research of behaviourists B.F. Skinner (1904–1990) and, more significantly, Ole Ivar Lovaas (1927–2010) has had a huge and sometimes controversial impact on the education, care and control of autistic people. Behaviourism is an approach to human psychology that proposes observable actions—behaviours—as the primary or only subject of psychological research and intervention. It rejects the introspective and interpersonal dynamics approaches more common to Freudian psychology and its offshoots. As a field, it began with Ivan Pavlov’s (1849–1936) wellknown experiments on conditioned responses, which were elaborated on by John B. Watson (1878–1958).

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Some behavioural psychologists accepted just the idea that behaviour is a worthy topic for study, based on the rather obvious point that its visibility makes objective research easier and that it holds clues to inner emotional states. Other ‘radical’ behaviourists, such as B.F. Skinner, denied the importance of inner emotional states altogether and proclaimed that the work of psychologists should be understanding and controlling human behaviour. Starting with Watson’s research, behaviourism put forth the view that children come into the world as a ‘blank slate,’ upon which proper or improper conditioning will write the script governing the rest of their lives. Skinner was a strong proponent of this theory. He began using what he called applied behaviour analysis (ABA), also known as operant conditioning, in 1938. His first research subjects were rats and pigeons, but he soon moved on to applying his ideas to children. In 1945, he was the subject of a controversial article in Ladies Home Journal that discussed his ideas on healthy child-rearing. He continued his research, however, and published his best-known scholarly work, Science and Human Behavior, in 1953 (Bjork, 1993). Skinner’s views became the subject of a public scientific debate when his 1957 book Verbal Behavior was challenged by the linguist Noam Chomsky (1928–). Whilst Skinner argued that speech is a form of behaviour acquired through operant conditioning, Chomsky proposed an intrinsic theory of speech based on the concept of a ‘universal grammar’ hard-wired into the human brain. Although Chomsky’s linguistic theories also have many challengers today, only staunch behaviourists continue to hold Skinner’s ‘blank slate’ theory in the light of what is now known about brain structures and processes associated with speech and speech impairment. By the late 1950s, behaviourism was already on the ropes to some extent, tainted by an association with fascist control tactics by its opponents; over the years it has taken a further beating from theorists like Theodor Adorno, Michael Billig and Chomsky himself. It was largely discredited in the post-war era as far as academic human psychology was concerned. However, behaviourist techniques continued to have great importance in the growing fields of advertising and public relations, and were applied in a few areas where a ‘need’ for extreme forms of social control was accepted by those in charge: industrial psychology, prison management and, as will be discussed in more detail later, working with people who had autism and/or learning difficulties.

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Medical Research Passes Autism By With psychologists and psychiatrists of various stripes staking out autism as their private territory, it was largely overlooked by medical researchers, even though some incidental findings had clear implications. As in the case of Tourette syndrome as described by Kushner (op cit.), early work on biological psychiatry was superseded by Freudian theories. In the early twentieth century, Schowalter (2003) writes: ‘Organic, or biologic, psychiatry was widely considered a failed pathway espoused by forgotten old men near retirement age.’ Discoveries were made by those investigating other conditions that would form a basis for later autism research, however. In 1934, Asbjörn Fölling (1888–1973) was the first researcher to ascribe the development of intellectual disability to a metabolic disturbance, spurred on by the insistent parent of two children with learning difficulties (Centerwall & Centerwall, 2000). Fölling found that a deficiency of the enzyme phenylalanine hydroxylase, needed to metabolise the amino acid phenylalanine (found in about 5 percent of protein-containing foods and in some chemicals used in food production), could cause brain damage, postural differences, organ damage and behavioural differences, including severe digestive disturbances and certain repetitive actions often also seen in people who have autism. The resulting disorder was called phenylketonuria, or PKU. However, it took 20 years for Fölling to find a journal willing to publish his work (Koch, 1997). The development of a treatment strategy for PKU in the early 1950s by the provision of a low-phenylalanine infant formula was another hallmark in the history of biochemical genetics. Spurred by the potential for preventing learning difficulties in affected infants, Robert Guthrie (1916–1995), whose son and niece had severe learning difficulties, developed a cost-effective screening method for PKU. It involved examining small blood spots collected from newborns and dried on filter paper to detect a biological marker, elevated excretion of phenylpyruvic acid, in urine. Like Fölling, Guthrie experienced an uphill battle in getting funding for his work, and later in publishing his work and getting it accepted by practitioners. He persevered, however, relying on tiny grants from parents’ organisations, and population-wide newborn screening was started for PKU in the 1960s. PKU screening became mandatory in all the US states in 1966 (ibid.). New cases of brain damage due to PKU are now extremely rare in the US and Western Europe, as it can be prevented by simply avoiding food and drink containing phenylalanine once the condition has been uncovered.

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The discovery of PKU was important not only in terms of science but also because it challenged the notion that intellectual disability is a static condition, with no real hope of prevention, improvement or cure. Whilst cures remained elusive, prevention suddenly became a possibility, and the development of helpful therapies and supports also began to make improvement a more likely outcome. As a result of significant technological advances, more than 1000 inborn errors of metabolism have since been recognised. The application of a technique called tandem mass spectrometry to newborn screening has allowed the expansion of the number of metabolic disorders detectable in a single dried blood spot to more than 30 inborn errors of metabolism. Although some researchers have long suspected that inborn errors of metabolism may play a role in some cases of autism (e.g. Shattock & Savery, 1996), research into this area continued to lag due to a lack of institutional interest and funding. During the middle years of the twentieth century, researchers were also busy trying to unlock the secrets of genetics (which, of course, ultimately underlies metabolic processes). Several technical advances in chromosome methodology were made in the late 1940s and early 1950s, including hypotonic solutions to spread the chromosomes, and researchers like Linus Pauling, Rosalind Franklin, Francis Crick and James Watson were able to deduce the shape, arrangement and structure of DNA. Using these new methods, in 1956 Jo Hin Tjio and Albert Levan, working in Lund, Sweden, established the correct chromosome number in humans to be 46 (Lorentz et al., 2002). In 1959, four important chromosomal syndromes were discovered. In France, Jerome Lejeune described trisomy 21  in Down syndrome and deletions of the short arm of chromosome 5. English geneticists Patricia Jacobs and Charles Ford discovered 45,X in Turner syndrome and 47,XXY in Klinefelter syndrome. Collectively, these observations marked the birth of clinical cytogenetics: the search for genetic causes of disability or disease (ibid.). Autistic traits are commonly seen in people with Turner syndrome and autism occurs more frequently in persons with Down syndrome, although the exact mechanism of this relationship has not been determined in either case. At the time, mainstream psychologists and psychiatrists ignored this data. Basic medical research into genetics received a great deal of funding following the end of the Second World War, as did research into possible

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pharmaceutical treatments for many mental health conditions, such as schizophrenia. In the US, passage of the National Mental Health Act in 1946 and the establishment of a well-funded public research institution, the National Institute of Mental Health, shortly thereafter are often said to have marked a sea change in psychiatric research and treatment. In The Broken Brain: The Biological Revolution in Psychiatry, Nancy Andreasen writes that early proponents of medical research into mental illness ‘saw themselves as an embattled minority trying to maintain the attachments of psychiatry to medical science and to neuroscience’ (1984, p. 150). Their work eventually encompassed the use of strict diagnostic criteria, the search for biological markers and mechanisms for mental health difficulties, and the discovery of medications that might ease symptoms. For better or worse, and despite some serious missteps by a few clinicians in the 1960s and 1970s (see Chap. 6), it is a revolution that largely passed autism by, until the use of psychiatric drugs to reduce symptoms like anxiety in people with autism became widespread in the 1990s. Though common today, most such use is still ‘off-label’: no medication has ever been approved for use as a treatment for any root cause of autism, although some have received approval in the US for ‘related’ symptoms. And as we will see in Chap. 10, it took the injection of truly staggering sums of money to jump-start genetic and genomic research into autism. Without recourse to conventional medical treatments, clinicians turned to new systems of therapy that emerged from rehabilitation science. Rehabilitation techniques grew mainly out of work with returning soldiers after the First World War, and especially after the Second World War. They included physical therapy, occupational therapy and speech therapy. These practices proved to have considerable benefit for some children and adults with autism, and also informed some therapeutic methods developed later specifically for autism.

The Impact of the Social Construction of Autism As the process of defining autism moved forward, it sometimes prevented affected individuals from accessing needed support and stymied valid research. Perhaps the most pernicious effect of the autism narrative put forth by Kanner and other early investigators about autism was its construction as a syndrome primarily affecting children from upper-class, high-achieving and often Jewish families.

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In Kanner’s original cohort, nine children were ‘of Anglo-Saxon descent’ and two were Jewish (Kanner, 1971, p. 142). As only 2 per cent of the US population is Jewish, this appeared to be a significant number. Most of the families were from upper-middle-class backgrounds. The demographics of Kanner’s patients actually had far more to do with which parents were able to access expert diagnosticians, but these ideas about the demographics of autism quickly became codified. Such basic misunderstandings had global effects that continue to this day. For example, in the documentary film Refrigerator Mothers, Dorothy Groomer, an African-American mother, discusses her attempts to get appropriate help for her toddler son in the 1970s. She found out about autism with the help of a friendly librarian, but when she showed a diagnostic team that her son fit the criteria, she was rebuffed. ‘We did not fit the classic mould for autism, which is: white, upper middle class, and very, very bright’ (Sayers, in Simpson, 2002). Groomer’s son was instead diagnosed as ‘emotionally disturbed’ and treated accordingly, only receiving an autism diagnosis many years later. In Russia, the problem was even worse: as an ‘upper-middle-class’ condition (not to mention one associated with Jewishness), autism was defined as a disease of the capitalist system. As such a thing couldn’t possibly exist under communism, autistic symptoms were always given a different label—and parents were seen as suspect for more than just their parenting skills. Accepting this definition required purging the results of interesting Russian research into early childhood symptoms later defined in the West as denoting ‘autism.’ Russian child psychologist Grunya Sukhareva (1891–1981) has been credited with recognising autism as a distinct syndrome even before Asperger or Kanner, for example (Bambridge-Sutton, 2021). Much had been done during the years immediately after the Russian revolution, including some quite laudable attempts at special education, albeit with a psychoanalytic approach (Miller, 1998). However, Freudianism eventually fell out of favour with Stalin, and research, treatment and even care associated with autism in particular were driven underground once the condition had become firmly associated with capitalism. In the Soviet system, as under Nazism, deviant behaviour was redefined as ‘antisocial’ and could result in incarceration for adults with disabilities, either in the prison or Gulag systems if one ran afoul of the law, or in mental or disability hospitals. Children with deviant behaviour or disabilities were usually declared ‘social orphans’ and removed from their parents,

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with no review of this decision once a placement had been made. Kanner made reference to the situation of autistic people in Russia in the early 1970s, noting that recently some ‘Russian investigators … had the courage to break through the officially sanctioned “line”’ (op cit., p. 141). Any progress was apparently short-lived. According to a 2002 report from Amnesty International (AI), the process of incarcerating disabled children was codified and extended in the early 1970s. ‘Parents are advised to renounce their legal rights, and the child becomes a social orphan, condemned to live out his or her life in a grossly understaffed children’s home,’ Amnesty International UK wrote, summarising AI’s findings (p. 1). As the website of a Western charitable organisation assisting the first specialised day centre for children with autism in the Russian Federation, Dobro, stated, ‘Autism is not a condition generally recognised in Russia. Usually autistic children are condemned to an institution to live with little stimulation and few opportunities’ (2005). A more recent report from the Child Rights International Network (2012) states that doctors in Russia remain very reluctant to diagnose autism, services are poor and families encounter eugenic discourses from public figures. Another study looking at regional variations in autism screening and diagnostics found vast differences between the various parts of the Russian Federation and an overall low rate of screening and diagnosis (Ustinova et al., 2022). Over 30,000 ‘mentally disabled’ children are institutionalised in Russia (Amnesty International, 2021). Freudian psychology was ‘rehabilitated’ in the USSR in the 1960s, according to Miller (op cit.)—just in time for Bruno Bettelheim’s ideas to take hold (these will be explained in the following chapter). Such concepts still hold primacy in modern Russia (Rogovoy, 2004). Accordingly, it is not surprising that in the later years of the USSR and then in its successor states, if treatment was offered, it was along psychological lines. In an article written for the online newsletter AutismConnect, Adam Feinstein quoted Svetlana Morozov, the director of Russian autism charity Dobro, on the most common approach to autism in the USSR: It is called the ‘emotional behavioural approach’ and it has been going for about thirty years already. It is based on a very complicated theory of five levels of emotional relations. They believe that some of these levels are ­damaged in autism and that these can be repaired through play therapy and other methods. Actually, that is how I began—psychologists trained me in this method. But then when I worked with difficult children, I saw no results. (Morozov, in Feinstein, 2003)

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Morozov went on to differentiate this approach from Bettelheim’s psychological theories, but the fact remains that she is describing the continued wide use of psychoanalytical methods as a treatment for autism in the twenty-first century, despite a lack of efficacy. Feinstein provides copious examples of the persistence of psychoanalytic theories in Latin America (2010, op cit.), and Sophie Robert’s 2011 documentary Le Mur (The Wall) contains interviews with prominent French psychologists who continue to hold such views. Another French documentary, Elle S’Appelle Sabine (Her Name Is Sabine) (Bonnaire, 2007), shows a graphic example of how these beliefs can lead to the deterioration of an autistic adult through misunderstanding and maltreatment in psychoanalytically based facilities. This representation of autism has even played a part in making a false link between autism rates and vaccination. ‘Autism has rarely been reported outside industrialized countries, at least until recent years,’ stated vaccine-­ conspiracy writer David Kirby, author of Evidence of Harm (2005, p. 418). Kirby went on to cite increases in autism cases in China (where, it should be noted, the ‘autism as a disease of capitalism’ concept may have once prevented diagnosis, as in Russia), Indonesia, India and Nigeria. While Kirby gave lip service to the idea that perhaps greater awareness of autism and improved diagnostic tools and facilities played a role in these statistics, his intention was to build up the false premise that the baseline rate was and is higher in the West and North, allowing him to claim that the ‘emergence’ of autism in these other countries was due to the use of vaccines with mercury-based preservatives brought in from high-income countries in the Global North. But all this was yet to come:  The dominant discourse of autism that emerged in the 1940s and 1950s constructed it as a psychological condition. Although Kanner himself took great pains later to deny having supported the idea of autism as psychogenic, this representation was built in great part upon his own case studies, as well as the subsequent work of others and the reinterpreted work of child psychologists like Melanie Klein. The language used by these clinicians painted a highly specific picture of children with autism and their families, drawing barriers around a set of symptoms and ascribing them to a common cause. Attention was given to specific information, while other data was ignored. The nature of these case studies as narratives created a foundational myth, which autism as a subject still has not escaped. Finally, outcome data was missing, allowing readers to fill in the blanks with either wishful thinking or their worst imaginings. Two possible ends

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of the narrative of autism were proposed by these early accounts: institutionalisation or cure. Given these choices, one could either opt for the unappealing model of inevitable institutionalisation that predominated in the Soviet Union and other places where ‘cures’ were often seen as impossible, or one could pull out all the stops in pursuit of a hoped-for transformation. This dichotomy ruled out all alternatives and nuances from the very start, making the direction for research and treatment crystal clear: rather than discovering how individuals with autism could achieve a good quality of life, all available resources must be concentrated on finding a cure or paying for institutional care. In addition, with costly, ineffective institutionalisation painted as a sort of ‘death’ and posited as the only alternative to a cure, it was easy for researchers, treatment professionals and even parents to decide that the ends justified any means. As this chapter has illustrated, traditional child psychology reduced autism to a manifestation of parental failure. Later, biological psychiatry reduced it to an individual biochemical imbalance, and other models of the condition defined it as a set of learned behaviours, a metabolic disorder or a genetic ‘error.’ Although each explanation is different, they all fall within what disability studies pioneers like Mike Oliver (1996) have called the medical model of disability. The medical model defines disability as existing wholly within the person who has been diagnosed with a condition or who is seen as physically or mentally deviant. Where this model prevails, the body of any individual so identified becomes a site to be policed and normalised by means of pharmaceutical drugs, surgery, behavioural training or other medical treatments. As we shall see, this has been precisely the result of the creation of autism as a specific diagnosis. At its most insistent, the medical model doesn’t recognise individual difference as anything but pathology, nor does it recognise the social context of disablement. This model informs almost all biomedical research into autism, as well as much autism research in special education, speech therapy and other disciplines. It values observable, replicable evidence over personal experience. The medical model of disability operates from an arbitrary version of ‘normalcy,’ based solely on assumptions about the undefined ‘normal.’ It doesn’t recognise difference as having positive value, but instead places high value on rehabilitation and normalisation. It also doesn’t provide answers to what happens to those who cannot be normalised or cured.

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An alternative way of looking at difference, illness and impairment has been put forth in the field of disability studies: the social model of disability (Oliver, 1983). As described by Paul Abberley (1987), the social model of disability divides the effects of physical or mental impairment itself from the effects of bias, social exclusion, lack of support, and so on—effects that Abberley defines as ‘oppression’—and also from the socioeconomic causes of impairment or disablement. It does not seek to deny that physical pain, limitations and functional differences exist, but reveals that disablement is a collective experience, a process initiated and maintained by social and physical structures. It therefore encourages us to look at disability as a social issue, not an individual problem, and posits changes to the social and physical environment as the solution, rather than changes to the individual body or mind. Due to the medical model’s predominance, autism has been both medicalised and defined as pathological, as have been the families of people with autism. Attempts to trouble these definitions have met with strong resistance from the start. For example, eminent child psychiatrist Robert Coles has noted the typical response to criticism of psychological theories during the early years of his career: ‘This is a closed, totalitarian system. If you have any doubts, leave them at the door’ (Coles, in: Simpson, op cit.). One of the most important factors in the success and persistence of these ideas is that they fit within overarching cultural narratives. In the following chapter, one of the most pernicious of these will be explored: the mistrust of mothers.

References Abberley, P. (1987). The concept of oppression and the development of a social theory of disability. Disability, Handicap and Society, 2(1), 3–20. Alvarez, A., Reid, S., & Hodges, S. (1999). Autism and play—The work of the Tavistock autism workshop. Child Language Teaching and Therapy, 15(1), 53–64. Amnesty International. (2021). A life sentence: Children with mental disability in the Russian Federation. Retrieved December 30, 2022, from https://www. amnesty.org/en/wp-­content/uploads/2021/06/eur460782003en.pdf Andreasen, N. (1984). The broken brain: The biological revolution in psychiatry. Harper & Row. Bambridge-Sutton, G. (2021, January 6). How ideas about autism were shaped in the early USSR. Psychology Today. Retrieved January 15, 2023, from https:// www.psychologytoday.com/us/blog/politics-­a nd-­d isability/202101/ how-­ideas-­about-­autism-­were-­shaped-­in-­the-­early-­ussr

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Bjork, D. W. (1993). B.F. Skinner: A life. Basic Books. Bonnaire, S. (dir.). (2007). Her Name is Sabine (Elle S’appelle Sabine) [Film]. Mosaïque Films. Centerwall, S. A., & Centerwall, W. R. (2000). The discovery of phenylketonuria: The story of a young couple, two retarded children and a scientist. Pediatrics, 105(1), 89–103. Child Rights International Network. (2012). Russia: State discourages doctors from diagnosing autism at an early age to shake-off the responsibility. Child Rights International Network. Retrieved December 30, 2022, from https:// archive.crin.org/en/library/news-­archive/russia-­state-­discourages-­doctors-­ diagnosing-­autism-­early-­age-­shake.html Czech, H. (2018). Hans Asperger, National Socialism and ‘race hygiene’ in Nazi-­era Vienna. Molecular Autism, 9(29). https://doi.org/10.1186/ s13229-­018-­0208-­6 Donvan, J., & Zucker, C. (2010, October). Autism’s first child. The Atlantic. Retrieved January 15, 2023, from https://www.theatlantic.com/magazine/ archive/2010/10/autisms-­first-­child/308227/ Feinstein, A. (2003, September 22). Letter from Moscow. AutismConnect. Retrieved January 17, 2023, from http://www.autismconnect.org/news.asp?i temtype=adam§ion=000100010003&page=3&id=5083 Feinstein, A. (2010). A history of autism: Conversations with the pioneers. Wiley-Blackwell. Foucault, M. (2003) The birth of the clinic (Routledge Classics edition). Routledge. Frankland, M. (1995). Freddie the weaver: The boy who fought to join the world. Sinclair-Stevenson. Grandin, T., & Scariano, M. M. (1986). Emergence: Labeled autistic. Warner Books. Haraway, D. (1991). Situated knowledges: The science question in feminism and the privilege of partial perspective. In D. Haraway (Ed.), Simians, cyborgs, and women: The reinvention of nature (pp. 183–201). Routledge. Hunter, K. M. (1991). Doctor’s stories: The narrative structure of medical knowledge. Princeton University Press. Jones, K. W. (2002). Taming the troublesome child: American families, child guidance and the limits of psychiatric authority. Harvard University Press. Kanner, L. (1942). Exoneration of the feebleminded. American Journal of Psychiatry, 99, 17–22. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250. Kanner, L. (1971, April-June). Follow-up study of eleven autistic children originally reported in 1943. Journal of Autism and Childhood Schizophrenia, 1(2), 141. Kanner, L., McKay, R.  J., & Moody, E.  E. (1953). Round table discussion: Problems in child psychiatry. Pediatrics, 11, 393–404.

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Katterhagen, K. L. (2020). History of the South Dakota Human Services Center 1879–2019: Trials, trends, and tragedies to transformation [Thesis]. University of South Dakota. Retrieved December 30, 2022, from https://red.library.usd. edu/honors-­thesis/78 Kennedy, F. (1942). The problem of social control of the congenital defective— Education, sterilization, euthanasia. American Journal of Psychiatry, 99, 13–16. Kirby, D. (2005). Evidence of harm. Martin’s Press. Klein, M. (1961). Narrative of a child analysis: The conduct of psycho-analysis of children as seen in the treatment of a ten-year-old boy. Basic Books. Koch, J. (1997). Robert Guthrie—The PKU story. Hope Publishing House. Kushner, H. (2000). A cursing brain?: The histories of Tourette syndrome. 2000. Harvard University Press. Lorentz, C.  P., Wieben, E.  D., Tefferi, A., Whiteman, D.  A. H., & Dewald, G.  W. (2002). Primer on medical genomics, Part I: History of genetics and sequencing of the human genome. Mayo Clinic Proceedings, 77(8), 773–782. https://doi.org/10.4065/77.8.773 Malterud, K. (2000). Symptoms as a source of medical knowledge: Understanding medically unexplained disorders in women. Family Medicine, 32(9), 604. Miller, M. A. (1998). Freud and the Bolsheviks: Psychoanalysis in imperial Russia and the Soviet Union. Yale University Press. Müller-Hill, B. (1998). Murderous Science: Elimination by Scientific selection of Jews, Gypsies, and others in Germany, 1933–1945. Cold Spring Harbor Laboratory Press. Neumarker, K. J. (2003). Leo Kanner: His years in Berlin, 1906–1924. The roots of autistic disorder. History of Psychiatry, 14, 205–218. Offen, M.  L. (2003). Dealing with ‘defectives’: Foster Kennedy and William Lennox on eugenics. Neurology, 61(5), 668–673. Oliver, M. (1983). Social work with disabled people. Macmillan. Oliver, M. (1996). Understanding disability: From theory to practice. Macmillan. Robert, S. (dir.). (2011). Le Mur (The Wall) [Film]. Retrieved February 11, 2012, from http://www.supportthewall.org/2011/12/watch-­the-­wall-­le-­mur-­by-­ sophie-­robert/ Rogovoy, B. (2004). The therapy of gratification against autism. Retrieved April 21, 2005, from http://www.autismuk.com/_disc3/0000052e.htm Schowalter, J. E. (2003, September). A history of child psychiatry in the United States. Psychiatric Times, 20(9). Sheffer, E. (2018). Asperger’s children: The origins of autism in Nazi Vienna. W.W. Norton and Co. Shattock, P., & Savery, D. (1996). Urinary profiles of people with autism: Possible implications and relevance to other research. In Proceedings of the Durham International Conference on Autism (pp. 309–326). Autism Research Unit and Autism North Ltd.

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Simpson, D.  E. (dir.). (2002). Refrigerator Mothers [Film]. Kartemquin Educational Films. South Dakota Department of Social Services. (2020). History: Establishment of a hospital for Dakota Territory. South Dakota Department of Social Services. Retrieved December 30, 2022, from https://dss.sd.gov/behavioralhealth/ hsc/history.aspx Tustin, F. (1992). Autistic states in children. Routledge. Ustinova, N.V., Namazova-Baranova, L.S., Basova, A.Y., Soloshenko, M.A., Vishneva, E.A., Suleymanova, E.A. & Lapshin, M.S. (2022). The prevalence of Autism Spectrum Disorders in the Russian Federation: A retrospective study. Consortium Psychiatricum, 3(4), 28–37. https://doi.org/10.17816/CP211 White, H. (1987). The content of the form: Narrative discourse and historical representation. Johns Hopkins University Press.

CHAPTER 5

From ‘Pathological Motherhood’ to ‘Refrigerator Mothers’

For decades the ideas of Bruno Bettelheim (1903–1990) and others from a primarily Freudian psychotherapy background held sway in the field of autism, with devastating results for autistic people and their families. This chapter will explain the context within which such notions gained widespread acceptance and set the stage for the character of the reaction to them that reverberates to this day. The typical view during these years can be illustrated by the following quote: Infants, if totally deserted by humans before they have developed enough to shift for themselves, will die. And if their physical care is enough for survival but they are deserted emotionally, or are pushed beyond their capacity to cope, they will become autistic. (Bettelheim, 1967, p. 348)

These words seem startling, given that today we know that autism is a neurodevelopmental condition, not the result of inadequate parenting, but few voices were then raised to question whether any evidence for such assertions existed. These views were found not only within mainstream psychology but also in magazines, newspaper articles, films and everyday discourse about parents and children. At this time, schizophrenia was widely believed by psychologists to be a deliberate defence mechanism, a psychotic reaction to years of malicious and undermining parenting. Autism was seen as the childhood version of this condition, emerging © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 M. Waltz, Autism, https://doi.org/10.1007/978-3-031-31015-7_5

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when parents were even more damaging to their offspring than those of adult schizophrenics. Bettelheim emerged as a well-known authority on the topic of autism during the post-Second World War era primarily via a series of pop-­ psychology books and articles, which included a long-running column in the US women’s magazine Ladies Home Journal (Pollak, 1997). He was joined in this use of the non-specialist media by a flock of psychology writers who addressed the popular and student markets, including play therapy pioneer Virginia Axline (1911–1988), psychoanalyst Beulah Parker (1912–2007) and many others. Bettelheim’s book The Empty Fortress (1967), from which comes the quote above, straddled the line between professional and popular literature. It retailed compelling stories of autistic children who had allegedly been restored to mental health using Bettelheim’s methods, alongside ruminations on parenting, child development, feral children and concentration camp survivors, and how all these related to his theories about autism. It was accessible and highly readable, and received by both the general public and professionals in the same spirit as more recent medical best-sellers, such as Oliver Sacks’s collection of neurological case studies, The Man Who Mistook His Wife for a Hat. An examination of Bettelheim’s influence on ideas about autism by Chloe Silverman notes that The Empty Fortress appeared on many best-­ seller lists in the year of its release and ‘featured in major national newspapers and magazines, from the Times and the Saturday Evening Post to the New Yorker and The New York Review of Books’ (Silverman, 2013, p. 67). This is an unusual level of popularity for a book on what was then seen as a rare neurological condition, but, as Silverman adds, ‘reviewers greeted it as a philosophical rather than a technical work, a meditation on the drama of childhood and the triumphant “search for self” that Bettelheim claimed to both facilitate and chronicle’ (ibid.). As Edward Dolnick so succinctly puts it, this ‘book embedded Bettelheim’s version of autism in the minds of enlightened readers everywhere’ (Dolnick, 1998, p. 183). His views so thoroughly dominated discourse about autism during the period this chapter discusses that it is still often referred to as the ‘Bettelheim era’ or the ‘Bettelheim years’ (e.g. see Maurice, 1999; Schwartz, 2005). Bettelheim’s influence on both parents and professionals was noted by several individuals interviewed for this book, such as physician Thomas F. Anders of the MIND (Medical Investigation of Neurodevelopmental

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Disorders) Institute. During his early career, Anders said, ‘In the background was the Bruno Bettelheim view that autism was from these refrigerator parents.’ He added that he was on the faculty at Stanford University during Bettelheim’s time there and that even then, in the late 1970s and early 1980s, Bettelheim’s views still held sway—although some clinicians were starting to catch on. ‘Bettelheim basically lied,’ Anders said bluntly. ‘I used to argue with him a lot’ (Anders, T.F., 2001, personal communication, 8 May). For almost three decades, however, arguing with Bettelheim was a fraught proposition. For example, The Empty Fortress contains multiple and pointed swipes at his critics, particularly those like Bernard Rimland, who dared to put forward theories of biological rather than psychological causes for autism (Bettelheim, op cit.). Bettelheim has been widely demonised in more recent writing about autism. We now know that he falsified data, verbally and sometimes physically abused his patients and was not the miracle worker he portrayed himself as (Dolnick, op cit.; Pollak, op cit.). What has been conveniently forgotten is that while Bettelheim was certainly better known to the lay public than others in his field, he was hardly a lone voice when it came to blaming parents—and particularly mothers—for autism. Childhood psychological problems in general had been laid at the door of misguided motherhood well before Bruno Bettelheim made specific claims regarding autism, and he had a large cast of highly vocal supporters.

Child Guidance and Mother Guidance Kathleen Jones finds the roots of mother-blaming in the Victorian era, during which a new view of childhood and parenting arose from the incipient middle class. Poor and working-class children like Ralph Sedgwick, who was introduced in Chap. 1, were expected to be economically productive and independent as soon as practically possible. Their parents were certainly not devoid of sentimental feeling, but saw childhood dependency as a stage to be gotten through quickly, a time when the essential skills for life in the adult world were to be gained through experience and rough, practical instruction. The new middle-class notion was of childhood as a precious stage to be prolonged and protected. As Jones writes, ‘bourgeois Victorian culture identified childhood as a separate, special time of life, a time for guidance and for pampering, at least by the standards of the previous centuries’ (Jones, 2002, p. 36). However, she adds, this image of the

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much-loved and well-behaved middle-class child had its reverse—the ‘troublesome’ child. ‘In popular discourse,’ she notes, ‘troublesome children came from impoverished homes and were emblematic of the anxiety-­ producing economic and social changes brought on by industrial capitalism … child savers surrounded these children with the same sentimentality that enveloped middle-class childhood’ (ibid.). Medical and charitable institutions where the ‘child savers’ to whom Jones refers were based focused on these problem children. As noted in Chap. 3, those seen as obviously feeble-minded or disabled could be simply removed from the community altogether. But to deal with those whose differences were less overt, a network of new institutions arose. These often targeted parents—and especially mothers—more than troublesome children themselves. Settlement houses, Child Guidance clinics, youth services, juvenile courts, ‘reform schools,’ welfare departments that issued payments to discourage mothers from working, compulsory state schools, and research centres focusing on child psychology, behaviour and criminology worked together to improve understanding and control of the troublesome child. The end goal was to guide him or her towards gainful employment and away from crime, immorality and antisocial behaviour. Two of the pioneers in this work were G. Stanley Hall (1844–1924), who codified ‘child study’ as a field at Johns Hopkins at the turn of the century, and his protégé, the psychiatrist Adolf Meyer (1866–1950), whose concepts of ‘psychobiology’ and ‘mental hygiene’ suggested that mental ill health could be prevented—especially if prevention started in childhood. Hall presents a problematic character in retrospect, but was lionised during his lifetime. Like many men of his generation, he was an open racist and supported eugenics; he was also a supporter of the German Völkisch movement (Karier, 1986), which suggested that at least some ethnically distinct groups shared a common ‘oversoul’ of sorts as well as a national, linguistic and cultural heritage. Hall viewed young children as savages and suggested that only daily physical exercise and strict moral education could ensure that they became civilised adults (Hall, 1906). Hall and his followers were later criticised for collecting masses of undifferentiated data from questionnaires, observations and many other methods, without rigorous standards for either data-gathering or analysis (Jones, op cit.). However, at the time competing views were few, and it is generally the case that those founding a new field of study can experiment with practices and principles for quite some time before these are

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questioned. Hall started what is usually referred to as the first child psychology clinical laboratory in the US (Richardson, 1989), so his views naturally carried quite a bit of weight. He trained future clinicians and suggested how this kind of work should be done. As Majia Holmer Nadesan writes, ‘Hall’s theories contributed to subsequent efforts to link childhood experiences and behaviour to adult deviance and thereby helped open the door in the North American context for childhood to become a social welfare issue and the focus for Progressive reforms’ (Nadesan, 2005, p. 59). The heyday of child study was the last two decades of the nineteenth century, when its concepts were absorbed by the well-known National Education Association in the US and by the Mother’s Congress, a forerunner of the Parent–Teacher Association (Richardson, op cit.). It is through large, powerful organisations like these that the idea of child psychology and psychiatry as a crucial source of advice and guidance for parents and educators was shaped and spread. Hall’s students included psychologist and eugenicist Lewis Terman (1877–1956), co-author of the Stanford–Binet IQ test; psychologist and eugenicist Henry H.  Goddard (1866–1957), translator of the original French Simon–Binet IQ test and founder of the first research lab for studying intellectual disabilities, from which emerged the Vineland Adaptive Behavior Scales, and psychologist Arnold Gesell (1880–1961), whose work resulted in the Gesell developmental scales. These protégées carried Hall’s doctrines forward into the next century, particularly through the new field of educational psychology and the introduction of standardised testing (ibid.). Standardised testing only works when a norm can be set up against which deviance is measured—and autism as a category of deviance could not truly exist as a concept without a way of measuring how it differed from this newly conceptualised norm. Meyer’s influence also cannot be underestimated. Andrew Scull and Jay Schulkin call him ‘the most prominent and influential American psychiatrist of the first half of the twentieth century. Particularly after his appointment to Johns Hopkins, as its first professor of psychiatry, he dominated psychiatry in the United States until his retirement in 1941,’ they write, adding that ‘his influence was almost equally strong in Britain, where his pragmatism and therapeutic eclecticism had a wide appeal’ (Scull & Schulkin, 2009). Two of Meyer’s most important contributions were nurturing the careers of the next generation and furtherance of the case study

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as the most favoured tool for understanding the nature of psychiatric illness. His wife, Mary Potter Meyer, helped him extend his view of what such a case study should contain through her work with the families of his psychiatric patients. As Meyer wrote of their combined efforts, ‘we thus obtained help in a broader social understanding of our problem and a reaching out to the sources of sickness, the family and the community’ (Meyer, 1922, p. 222, emphasis in original). It is not coincidental that Leo Kanner founded the child psychiatry department at Johns Hopkins under Meyer’s direction (Martin et  al., 2007, p. 1033). Also linking Meyer and Kanner is the work of Frieda Fromm-­ Reichmann. According to Edward Shorter, it was Meyer’s influence in the American Psychoanalytic Society—and his practice of referring ‘psychotic’ patients to local analysts—that made extending the use of psychotherapy to the treatment of psychosis (the broad category into which people with autism were then most likely to be placed) particularly acceptable in the Washington–Baltimore area where he worked (Shorter, 1997). Fromm-­ Reichmann began practising as an analyst near Baltimore in 1938, where she was mentored by Harry Stack Sullivan. Sullivan believed that schizophrenia was caused by aberrant family relationships, and Fromm-­ Reichmann further developed this concept. Within ten years she had put forward a well-developed theory about the cause of schizophrenia: the schizophrenogenic mother (Fromm-Reichmann, 1948). The schizophrenogenic mother combined a whole raft of negative personality traits. Goldenberg and Goldenberg describe her as a ‘domineering, cold, rejecting, possessive, guilt-producing person who, in combination with a passive, detached and ineffectual father, causes her male offspring to feel confused and inadequate and ultimately to become schizophrenic’ (Goldenberg & Goldenberg, 2007, p.  102). The psychotherapist’s job, then, was to somehow free the person with schizophrenia from the mother’s clutches, both literally through institutionalisation and emotionally through extended interpersonal therapy (ibid.). Schizophrenia does not usually become clinically evident until people reach their teens or 20s. So for autism—then seen as ‘childhood schizophrenia’—to emerge in the earliest years of childhood, the mothers of children with autism had to be even more malicious. The widespread acceptance of Fromm-Reichmann’s theory amongst clinicians, and its further elaboration by Gregory Bateson and others, gave a credible, mainstream context to Bettelheim’s wilder pronouncements.

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Standardised testing, descriptions of ‘normal’ developmental stages and a general belief that parents (and particularly mothers) could and did produce most pathology in children were necessary prerequisites for the Child Guidance movement’s existence, and it is this movement that spread the facilities that made diagnosing autism possible outside of a few highly specialised research settings. The Child Guidance movement is generally seen as starting in earnest in 1922 when the Commonwealth Fund (a private charitable foundation started by the wealthy Harkness family of New York) undertook a campaign to prevent delinquency by attacking the problem at its roots. Its money was used to fund several demonstration programmes at American clinics, which addressed youth with a variety of emotional and behaviour problems as well as those seen as having criminal tendencies (Jones, op cit.). Improvements in standardised testing were funded as part of this project. Mother-blaming was also an intrinsic part of the Child Guidance paradigm from the start—sociologist Ernest Groves, for example, who with his wife Gladys Groves pioneered the practice of marriage counselling within the Child Guidance clinical context, declared that even typical mothering was pathological (Groves & Groves, 1928). Books like Groves and Groves’s Parents and Children were designed to popularise psychology-derived ideas about parenting among middle-class families (Steere, 1968), whilst the Child Guidance movement sought to help the newly enlightened middle class apply them to changing the behaviour of poor and working-class families. Jones notes that within the Child Guidance clinic, it was usually middle-class female professionals— primarily social workers—who worked with families, enforcing the dictates of mostly male psychologists and psychiatrists, who themselves worked with the children, if any direct work with the child took place (Jones, op cit.). Within this system, she writes, typical mothering practices were derided as mere instinct, and science was appealed to as the source for improvement. The marked gender divide between those working in Child Guidance did not mean that targeted mothers met with sympathy from female practitioners. In fact, as Molly Ladd-Taylor writes, ‘skilled professional women, as well as men, earned legitimacy through devaluing the mothering skills of non-professional women’ (Ladd-Taylor, 1998). The Child Guidance movement was helped to further its cause by appealing to middle-class mothers through the popular press, bringing in donations, volunteers and moral support, and by securing additional funding from other foundations and government agencies. As a result, the

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movement was highly successful in founding and expanding clinical services, and in cementing relationships between its own psychologists, psychiatrists, and social workers and others who worked with children, such as schools, courts and asylums. It provided a home for spreading the practice of child psychoanalysis (then still considered suspect by many devout Freudians as well as the general public) and family therapy; indeed, in the US many of the best-known mental health facilities for children operating today can trace their roots to this movement.

Theorising the Boundaries of Deviance At the edge of the ring within which mothers of troublesome children were surveilled stood those psychoanalysts who, like Bettelheim, worked with children seen as more than just maladjusted or delinquent. The case studies retailed by these professionals provided a cautionary sign to clinicians and parents alike: ignore signs of aberrant behaviour in young children at your peril. Prominent amongst these professionals were a trio of female psychoanalysts: Margaret Mahler (1897–1985), Frances Tustin (1913–1994) and Melanie Klein (1882–1960). Each made a contribution to psychoanalytic theories about autism. Although their theories were not identical, they all found a common target for blame: mothers. Mahler, co-founder of the Masters Children’s Centre in New York City, developed a three-part theory of normal infancy and early childhood development. In Mahler’s view, a newborn infant is in what she originally called the Normal Autistic Phase, during which it still perceives itself as part of its mother. Slowly the infant becomes aware, through experience and the development of perception, that he or she is not the same as the mother, but still without recognising a complete sense of individuality. Mahler called this the Normal Symbiotic Phase. Between the middle and end of the infant’s first year, the Separation–Individuation Phase begins, during which the child begins to have a sense of self and to explore the environment independently. The infant eventually becomes fully aware that the mother is a separate individual, and starts to recognise other people as individuals as well. For Mahler, the child with ongoing autistic symptoms was ‘stuck,’ still unable to differentiate between self and mother (Mahler et al., 1948). In her clinical work Mahler often suggested that some traumatic event, such as temporary separation from the mother or illness, was the root

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cause for autism or (to use her term) ‘symbiotic psychosis.’ Mahler dealt with possible conflict between her theory and Kanner’s by positing that his ‘autistic psychosis’ described being stuck in the first stage of development (Mahler et al., 2000, pp. 6–7), although her descriptions of children with symbiotic psychosis do not differ materially from the DSM-IV criteria for autism. She saw the autistic child as having a rage-panic defence that arises because of his or her inability to tolerate the outside world. The autism, then, is a deliberately built shell, a theme that many other theorists echoed over the years. Mahler’s symbiotic psychotic child, on the other hand, cannot extricate itself from the mother to form a separate identity. Mahler’s language left space for the possibility that the psychotic child had an innate impairment of some kind, but also evoked the likelihood that the early mother–child dyad was disturbed because of some defect in mothering behaviour. For example, a summary of her theory says: It was clear that in those rare conditions something had gone basically astray at the very root, that is, in the earliest interactions within the mother-child unit … whereas in primary autism there is a deanimated, frozen wall between the subject and the human object, in symbiotic psychosis there is fusion, melting, and lack of differentiation between the self and the nonself—a complete blurring of boundaries. (ibid., p. 11)

Mahler’s work comprised careful observation of interaction between typical and atypical infant–mother pairs, and attracted funding from the then-new National Institute for Mental Health (ibid., p. xxiv), as well as from several private foundations. It must be said that this data could have been very valuable had it not been analysed via a system of psychoanalytic belief that skewed its meaning. Viewed through a psychoanalytic lens, however, motor activity was assigned intrapsychic meaning, despite the fact that the analyst did not have access to the infant’s thought processes. So although one can read Mahler’s work in hindsight as substantiating the sensory-perceptual differences since reported by adults with autism, at the time it was interpreted quite differently. Clinicians looked instead for some aberration in how mothers held their infants and interacted with them (ibid., pp.  45–47). This sort of interpretation had also characterised Mahler’s earlier investigations of tic disorders, which she erroneously saw as a pathological psychological reaction to impulses (Mahler, 1944). Mahler’s Separation–Individuation theory, in the hands of less competent practitioners, led to accusations of over-involvement by mothers as

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the cause of autism and other conditions. This so-called smother-mother would seem to be the antithesis of Kanner’s ‘refrigerator mother,’ but that made little difference to mothers who found themselves in the dock. Indeed, if a clinician found a mother too warm to fit Kanner’s stereotype, Mahler’s symbiosis was waiting alongside it as an alternative explanation. Frances Tustin trained as a psychoanalyst at London’s Tavistock Clinic under John Bowlby, best known for his research on children who were separated from their parents during the Second World War. Tustin can be seen as an important conduit for bringing ideas derived from Bowlby’s neglect and deprivation cases to bear on conceptualising autism. The Tavistock was unusual amongst psychological treatment clinics, in that it saw both children and adults from when it was first founded in 1920. Bowlby’s post-war work there included a great deal of infant observation. From his research results he developed attachment theory, which is still influential in some circles today (it is, for example, the basis of the concept of Attachment Disorder). Tustin’s own training as an analyst began in 1950 and was heavily influenced by the theories of both Klein and Mahler, as well as by Bowlby and Bettelheim (Spensley, 1995). She later undertook work with autistic children at the James Jackson Putnam Children’s Centre in Boston, where she developed a theory that differentiated between what she called ‘encapsulated’ and ‘entangled’ children. These two forms of disturbance can be seen as analogous to Mahler’s autistic and symbiotic psychoses. However, Tustin saw the encapsulated child as having ‘Kanner’s autism,’ whilst the entangled child fit the diagnosis of childhood schizophrenia. She linked autism with arrested development and childhood schizophrenia with developmental regression (Tustin, 1986). It is currently accepted that both developmental delay and regression can be characteristic of autistic spectrum conditions. Like Mahler, Tustin was acutely aware of the sensory-perceptual disturbances experienced by children with autism, but chose to interpret and address these psychologically rather than biologically. Tustin saw autism as a sort of extreme grief reaction to the loss of connection with the mother’s body before the infant was able to cope. The mothers, she wrote, were almost always depressed (though not usually clinically depressed) around the time of or after the child’s birth. Their lack of responsiveness, she theorised, could have prevented the infant from moving from an auto-­ sensuousness state, which Tustin felt occurred prior to Freud’s auto-erotic and auto-sadistic states, into the normal narcissism of the young child

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(ibid.). To use Kleinian analytical terminology, such children failed to achieve normal object relations. Later research has not substantiated Tustin’s ideas about a clear link between postnatal depression and autism, however. Tustin did think it was likely that there was more to autism than bad mothering. ‘I am convinced that there is something in the nature of the child which predisposes him to autism,’ she wrote in 1986, adding that by the time the problem was diagnosed it was too late to address the mother’s prior depression. This also helped to explain, she added, why only a few depressed mothers had children with autism, while most did not (ibid., p. 62). As noted, Tustin’s theories were heavily influenced by the earlier work of Melanie Klein, whose best-known case study was discussed in Chap. 4. Her main contribution to the concept of autism was the theory of object relations, which attempted to examine infantile ego development and the many ways it could go awry. She focused on ‘phantasy’—the internal psychic life of infants—but of course without having any access to what actually occurs in the infant mind. For children with autism-like symptoms, she suggested that they did not differentiate between self and objects, and then experienced overwhelming terror when objects did not behave as part of the self. In her view, autistic symptoms were a deliberate defence of the fragile ego against this confusion between inner and outer realities (Nadesan, op cit.). Doane and Hodges note that in Britain, Klein’s ideas were further popularised through parenting instruction programmes featuring her former student D.W. Winnicott (1896–1971), which were broadcast by the BBC in the 1940s and 1950s, and spread even wider through Winnicott’s public speaking tours in the US and Canada (Doane & Hodges, 1992). As the descriptions just presented demonstrate, one should not assume that those who advocated psychoanalysis were in agreement about autism. Differences between the theories of Klein, Tustin and Mahler may seem slight to today’s reader, but were hotly debated at the time. Bettelheim was a particularly harsh critic of Klein, for example, stating that she had misinterpreted autistic regression through her refusal to assume that such infants were faced with actually malicious (rather than misguided or unskilled) mothers (Bettelheim, op cit.). Although these well-known analysts actually saw very few autistic patients personally, their books, journal articles and public statements fed the intellectual imaginations of trainee therapists, allied professionals in

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social work and education, and, of course, concerned parents and the general public. As the main source of psychotherapy services for children and families, facilities that arose from the Child Guidance movement were the nexus for disseminating these psychoanalytic concepts of autism.

Bringing It All Back Home One can look at the Child Guidance movement as embodying the most intrusive excesses of middle-class ‘do-gooder-ism,’ without negating the fact that it helped many families unable to easily help themselves under prevailing social conditions. That said, it carried within it (and reflected) a growing cultural misogyny, gradually leading to a pervasive attitude that ‘professionals’ were far more trustworthy than ordinary mothers. At times this flared into the open, and not just within discourse about the production of troublesome children. If it had not fit so very well with prevailing cultural trends, mother-blaming in relation to autism might have quietly faded away. However, just as Kanner, Bettelheim and their colleagues were publishing these new theories, an overarching wave of anti-female sentiment arrived to carry it forward. One of its best-known expressions was the accusation of ‘momism,’ a term coined by the American writer Philip Wylie (1902–1971) in his 1943 book A Generation of Vipers. Largely forgotten today, Wylie’s book was a borderline-obscene and very popular rant that read like a cross between Spiro Agnew and Hunter S. Thompson. Modern mothers, Wylie wrote, had so little to actually do that they were meddling in family and community lives, resulting in a generation of emasculated men. The answer, he suggested, was for men to take back control from these overbearing middle-aged monsters (Wylie, 1942). If these sentiments sound familiar, it’s because they’ve never really gone away—the same concept is a core theme in the work of right-wing pop psychologist Jordan Peterson, for example. Part of the hostility that fuelled such fires may have come from dashed expectations from the first wave of feminism. There was a widespread belief after the deadly debacle of the First World War that as women gained the vote and a greater say in public life in many Western countries, they might act as peacemakers. However, later on the avid support of many women for Hitler, Mussolini and Stalin was seen by some observers as proving women were innately weak when faced by a demagogue. Hope

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that women would act as a civilising influence in the home and the world at large diminished in favour of the idea that science (still then a resolutely male-dominated profession) and its presumed rationality could somehow save us from ourselves. In addition, the twentieth century saw the rise of true mass media, including the emergence of media aimed directly at women readers. Articles and parenting columns like Bettelheim’s in women’s magazines, radio shows like Winnicott’s, and regular waves of books that urged women to find fulfilment as full-time wives and mothers, all played their part in the story of autism. Almost invariably, even when such media encouraged mothers to ‘trust their instincts,’ it was delivered in the voice of an expert—usually though not always male—and often one entitled to add ‘Dr’ in front of his or her name (Douglas, 1995). In the context of autism, this combination of forces gave rise to the concept of preventative parenting—the idea that adopting research-based, ‘professional’ parenting skills could somehow protect children from developing autism or other serious conditions. Parenting classes, parenting manuals like Dr Spock’s Baby and Child Care, and the extension of testing and therapeutic services were all part of this effort, which continues to this day. Indeed, the near-professionalised status of ‘autism parenting’ in the twenty-first century could be seen as its ultimate expression, though focused on cure rather than prevention. However, the reality was that psychoanalysts simply didn’t know how to help when confronted with an autistic child. Jane Taylor McDonnell goes so far as to say that their placement of blame on the mother represented ‘a projection onto the child of their own guilt at not being able adequately to treat him’ (McDonnell, 1998, p.  266). She quotes Eric Schopler, a pioneer in autism education who will be discussed later in this book, as saying that ‘these feelings of inferiority may lead to scapegoating … and when the progress in treatment is uneven, the clinician’s role as an authoritative expert is seriously threatened’ (ibid., p. 227). Blame was never completely lifted, and re-emerges in strange new guises with regularity. For example, while working on the revision of this book, the author found a reference to ‘refrigerator parenting’ on a website about modern Ayurvedic (Indian medicine) responses to autism. Anthropologist Roy Grinker (2013) has substantiated that South Korean mothers typically view autism as caused by poor prenatal care or bad parenting and prefer a diagnosis of Attachment Disorder to one of autism,

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because it provides hope of a cure and negates genetic blame. But for both the schizophrenogenic mother and the refrigerator mother, the most insistent finger-pointing has largely ended—and this has occurred because of socioeconomic changes as much as the development of medical knowledge. In the new neoliberal model of a shrinking state and fewer employer contributions to health and social care, parents are now expected to take on a professional role, not just a ‘professionalised’ one. This makes it far harder for actual professionals to demonise them with alacrity. As Mary Seeman notes regarding the mothers of schizophrenic adults, ‘mothers of the mentally ill are evolving into auxiliary therapists’ (Seeman, 2007, p.  284); as every parent of a child with autism knows, they are now expected to be their child’s primary therapist. In other words, when the old asylums closed in the last decades of the twentieth century, a new form of asylum slowly arose to take its place—the increasingly medicalised family home.

References Bettelheim, B. (1967). The empty fortress: Infantile autism and the birth of the self. The Free Press. Doane, J., & Hodges, D. (1992). From Klein to Kristeva: Psychoanalytic feminism and the search for the ‘good enough’ mother. University of Michigan Press. Dolnick, E. (1998). Madness on the couch: Blaming the victim in the Heyday of Psychoanalysis. Simon & Schuster. Douglas, S. J. (1995). Where the girls are: Growing up female with the mass media. Three Rivers Press. Fromm-Reichmann, F. (1948). Notes on the development of treatment of schizophrenics by psychoanalysis and psychotherapy. Psychiatry, 11, 263–273. Goldenberg, H., & Goldenberg, I. (2007). Family therapy: An overview. Thomson Higher Education. Grinker, R. (2013). Border children: Interpreting autism spectrum disorder in South Korea. Ethos, 41(1), 46–74. Groves, E. R., & Groves, G. H. (1928). Parents and children. J.B. Lippincott. Hall, G. S. (1906). Youth: Its education, regimen, and hygiene. D. Appleton. Jones, K. W. (2002). Taming the troublesome child: American families, child guidance and the limits of psychiatric authority. Harvard University Press. Karier, C. J. (1986). The individual, society and education: A history of American educational ideas. University of Illinois Press.

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Ladd-Taylor, M. (Ed.). (1998). ‘Bad mothers’: The politics of blame in twentieth century America. New York University Press. Mahler, M.  S. (1944). Tics and impulsions in children: A study of motility. Psychoanalytic Quarterly, 13, 430–444. Mahler, M. S., Pine, F., & Bergman, A. (2000). The psychological birth of the human infant: Symbiosis and individuation. Basic Books. Mahler, M. S., Ross, J. R., & DeFries, Z. (1948). Clinical studies in benign and malignant cases of childhood psychosis—Schizophrenia-like. American Journal of Orthopsychiatry, 19(2), 295–305. Martin, A., Volkmar, F. R., & Lewis, L. (2007). Lewis’s child and adolescent psychiatry: A comprehensive textbook. Lippincott Williams and Wilkins. Maurice, C. (1999, Spring). ASAT formed to meet critical needs. Science in Autism Treatment, pp. 1–4. Retrieved March 9, 2012, from http://www.asatonline. org/pdf/spring99.pdf McDonnell, J.  T. (1998). On being the ‘bad’ mother of an autistic child. In M. Ladd-Taylor (Ed.), ‘Bad mothers’: The politics of blame in twentieth century America (pp. 220–229). New York University Press. Meyer, A. (1922). A historical sketch in outlook of psychiatric and social work. Hospital Social Service Quarterly, 5, 221–225. Nadesan, M. H. (2005). Constructing autism: Unravelling the ‘truth’ and understanding the social. Routledge. Pollak, R. (1997). The creation of Dr. B: A biography of Bruno Bettelheim. Simon & Schuster. Richardson, T. R. (1989). The century of the child: The mental hygiene movement and social policy in the United States and Canada. State University of New York Press. Schwartz, P. (2005). Film as a vehicle for raising consciousness among autistic peers. Research paper presented at the Autism and Representation Conference, Case Western University, 30 October. Retrieved March 9, 2012, from http:// www.case.edu/affil/sce/Texts_2005/Autism%20and%20Representation%20 Schwarz.htm Scull, A., & Schulkin, J. (2009). Psychobiology, psychiatry, and psychoanalysis: The intersecting careers of Adolf Meyer, Phyllis Greenacre, and Curt Richter. Medical History, 53(1), 5. Seeman, M.  V. (2007). The changing role of mother of the mentally ill: From schizophrenogenic mother to multigenerational caregiver. Psychiatry, 72(3), 284–294. Shorter, E. (1997). A history of psychiatry: From the era of the asylum to the age of Prozac. John Wiley & Sons. Silverman, C. (2013). Understanding autism: Parents, doctors and the history of a disorder. Princeton University Press. Spensley, S. (1995). Frances Tustin. Routledge.

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Steere, G. H. (1968). Freudianism and child-rearing in the Twenties. American Quarterly, 20(4), 759–767. Tustin, F. (1986). Autistic barriers in neurotic patients. Karnac Books. Wylie, P. (1942). A nation of vipers. Pocket Books.

CHAPTER 6

Bedlam, Behaviourism and Beyond

In the men’s ward at Ely Hospital in the mid-1960s, Jimmy Jones1 was just one of around 60 adults living on a packed ward, one of six overpopulated wards in the large subnormality hospital outside Cardiff in Wales. He had lived at Ely from the age of four, having been admitted in 1935. In the ward’s sleeping room, beds with their matching white sheets and coverlets ranged in tight rows down both walls and twice again down the centre of the room. You could just about stand sideways between one bed and the next. Jimmy’s life was regimented, if you can call a succession of days in which nothing much happens in exactly the same way ‘regimented.’ Ely had no educational facilities for children, so Jimmy had never been to school. At 32, he had no belongings or clothing of his own—in fact, he didn’t even have his own teeth. They had been removed some years earlier, to save staff time on cleaning them and reduce dental bills. On one morning, a morning more or less like every other for the last three decades of his life, Jimmy and his ward-mates were woken by staff and took clothes to wear from a communal bin. Dressed in identical green canvas shirts, they ate Weetabix and milk together and then went into the airing court to move about. Had it been raining, they would have instead gone to another room, where there were chairs to sit on. In some other wards at Ely, there was talk amongst those who could speak. Not so here. For Jimmy, who was non-verbal and often hugely

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frustrated by his inability to make himself understood, there was a clout round the ears when he bit another inmate who was crowding him. He covered his head with his arms, keened tunelessly and then rocked, something that usually helped to soothe him. Dinner came and went, different from the previous day’s only in that there were chips instead of mashed potatoes. An extract from a clinician’s diary describing her first experience of a similar ward provides a flavour of the typical afternoon chaos: The ward consisted of three huge bare rooms, like community halls rather than places in which to live. Some of the 20 men were sitting rocking in padded metal chairs that were bolted to the floor. Others ran round in circles, some shouting or whooping. One sat, naked, roaring loudly. One banged his head repeatedly against the wall. Another leapt and twisted and threw himself at the wall and the floor with great force. A blind man sat and rocked back and forth, screeching. (Hubert & Hollins, 2006, p. 71)

Because men like Jimmy could not communicate using words, the author added, ‘There was often little recognition of or response to … attempts to communicate, and thus there was a rejection of the men as interactive, social beings’ (ibid.). The result was that Jimmy and others used behaviour to communicate their loneliness, fear, anxiety and distress. Behaviours like rocking, screaming, head-banging and other forms of self-­ injury were common, and as the untrained staff at Ely had no idea how to cope, these frequently resulted in injury. Jimmy hadn’t always been like this. Like most children admitted to long-stay hospitals in Britain, he had been seen as a disabled child who was ‘difficult to manage’ (ibid.). He did not have a diagnosis of autism, as hardly any children admitted to Ely had been seen by the few clinicians qualified and willing to diagnose it in Britain (Clements, J., 2011, personal communication, 8 September). Instead, he was only labelled as ‘mentally subnormal,’ then the current term for intellectual disability or learning difficulties. His family’s GP had told them that with children like this, it will only get worse and that keeping Jimmy at home would blight the life chances of their other children as well. Of course, they deferred to his judgement. Most parents did. They had visited weekly when he was young, but it had been many years now since they had even made an appearance on his birthday or at Christmas. The last few times Jimmy hadn’t seemed

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to recognise them, the atmosphere of the place was depressing, and the staff weren’t particularly welcoming. In the mind-numbing environment of the children’s ward, devoid not only of special education services but also of even the simplest toys or games, the GP’s words had become a self-fulfilling prophecy. Surrounded by others who were often in similar distress, Jimmy’s childhood days were a pattern of hours of boredom punctuated by occasional ‘training activities,’ interspersed with panic whenever there was an unexpected sound, movement or schedule change. He became more rigid with every passing year, as trying to force sameness on everyday events was his only defence against the confusion and fear that so often overwhelmed him. When his behaviour affected other inmates or staff, he was routinely kicked or hit, increasing his distress. On other wards at Ely that day, more able people with intellectual disabilities or autism walked the subnormality hospital’s grounds and smoked. Some worked on puzzles indoors, and occasionally there was an organised activity to do, such as a craft project. On this day, one inmate ran an errand for a staff member who wanted a special dinner fetched from a nearby takeaway in exchange for a few cigarettes: as inmates had no money, cigarettes were the common internal currency (Hutchinson, 2012). Local shopkeepers and residents had long been familiar with these more able Ely residents, but most knew nothing of life on the locked back wards where patients like Jimmy lived until 1967, when allegations hit the press about mistreatment of inmates. Two years later the Ely Report was released, detailing the prevalence of abuse and neglect in no uncertain terms (Department of Health and Social Security, 1969). Ely’s administration had operated the hospital as if it was a world unto itself. As Butler and Drakeford later noted, at Ely: No doctor had a specialist qualification. No doctor and only a single senior nurse had visited another hospital dealing in the same area of specialism. No single training event had been attended since the 1950s when a different charge nurse had taken part in a course in the role of nursing in the event of atomic war. (2005, p. 52)

And Ely was hardly alone in this regard. Evidence at the time suggested that some other subnormality hospitals in Wales were actually worse (ibid.).

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The Ely Report was for the UK what the Willowbrook scandal2 would be in the US a few years later: a moment when a window was opened on one of the Western world’s dirty little secrets (Rothman & Rothman, 2005). John Clements, today a well-known specialist in the area of autism and challenging behaviour, was a young, idealistic psychology student in the late 1960s. He was shocked to learn whilst training at the Maudsley Hospital in London that there were thousands of ‘lost souls’ in huge facilities ringing the capital. Identified only as having learning difficulties or mental health conditions, many of them were people with autism (Clements, op cit.). Clements took up a staff post at Ely not long after the Ely Report was released. In his entire training, he had attended four lectures on ‘subnormality’ and had no contact with patients who had intellectual disability or autism in the UK, although he gained some exposure whilst working for a charity in Singapore after graduation. The day he walked into his new post at Ely was one Clements would never forget. ‘The first impressions? Absolutely overwhelming,’ he recalled. ‘Now you’re suddenly exposed to things full on that you have no recognition of. You just saw bodies that you’d never seen—those with multiple and profound disabilities … To come to terms with this is how we treat people in our apparently sophisticated society, was stunning. It has never left me.’ On the back of the Ely Report, there was a real push to try to do something for the institution’s children. When Clements arrived, the children’s ward had just introduced personal clothing and lockers. What had been the training or day centre had been repurposed as a school following the Education Act of 1970. Until this law had passed, children with intellectual disabilities or autism had no right to an education. It took many years to make this right a reality, however, as was also in the case in the US, where a similar law was passed some years later. Despite the challenges, Clements said, ‘It was exciting because psychology had something to offer—we could do something here.’ On a typical day during his first year at Ely, children would now wake up, put on their own clothing, have breakfast, attend school during regular school hours and then return to the ward. Their lives were still without much pleasure or inspiration, but it was an improvement over the atmosphere of lifelong warehousing that had prevailed before the Ely Report. Clements soon came into conflict with some staff about creating a more normal environment for developing children. ‘I remember the children’s

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wards were pretty bereft of anything,’ he said. On one ward, there was a collection of donated toys, but these had been placed on high shelves as decorations. The staff member in charge told Clements that they were kept out of reach of the children because ‘they don’t know what to do with toys, they would only destroy them.’3 Another thing missing from Ely was an understanding of autism. ‘There was this notion of autism—I knew about Michael Rutter’s work and [Ivar] Lovaas’s work,’ Clement said. ‘But the general perception in a place like Ely was … that autism didn’t really exist, it’s for middle-class families who can’t face the fact that their child is mentally handicapped and can’t come to terms with it.’ As noted earlier, this skewed class dimension of autism diagnosis was based largely on the descriptions set out by American clinicians like Kanner and Bettelheim, who had emphasised the idea that autistic children were born mostly to educated, high-achieving parents. ‘No one at Ely was diagnosed as autistic,’ Clements stated, [but] ‘when I look back, the place was stacked full of people with autism—stacked full. All with very severe learning difficulties as well. But it was not a concept that was prevalent for us at all.’ In addition, there was not a set definition of autism at the time, other than ideas taken from reading case studies. These focused on outward manifestations of the condition, such as an intense desire for sameness and stereotypical movements like hand-­ flapping. It would not be for many years that an understanding of the cognitive and sensory-perceptual issues underlying these would emerge. Clements described Ely’s youngest inmates as ‘the lucky ones … if you were older or more significantly disabled there really was nothing for you.’ Residents like Jimmy may have experienced some knock-on benefits as staff tried to extend the interventions emerging on the children’s ward to the adult back wards, however. Although the institution was massively understaffed by modern criteria, Clements found that many staff—though not all—were eager to help. ‘I learned that even if you only have three or four staff on duty you can get stuff done, providing you drew people in and consulted them. The key people, as always, were the people with no training or experience, the nursing assistants who were untrained and unqualified, but some of them were good-hearted and had good skills,’ he added. For Clements, one ray of hope was word coming from the US of methods that might be used to reduce challenging behaviour or even to teach. He read as much as he could, with the Maudsley’s Michael Rutter one

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author whose ideas seemed helpful (Rutter and his protégées will be discussed in the next chapter). And, he added, ‘I was busy going on workshops with all the great American behaviourists.’

Behaviourist Methods Behaviourist psychology was one of the new ideas in the air, a definite departure from Freudian-flavoured child psychology. It promised the possibility of change and improvement for people who the system as it was had written off as hopeless. At Ely, Clements focused on creating a more enriched environment for the children with play, special education and intensive behavioural support using observation and operant conditioning techniques to prevent self-injury and other forms of challenging behaviour. There was no understanding yet of how sensory-perceptual and cognitive differences might contribute to behaviour problems, he noted, but at least staff now had a few tools that sometimes produced improvement where psychological theories of autism had not. However, although behaviourism offered hope, it carried its own problems, as noted in Chap. 4. Like mainstream psychology, its core principles positioned parents as the root of the problem—rather than parental maliciousness, it was parental inadequacy that took the blame, in the form of parents having reinforced the wrong behaviours or not having reinforced the right ones. Its proponents could also oversell their ideas, with workshops characterised at times by an almost evangelical fervour. From the start, behaviourism positioned itself as ‘scientific’ and therefore unquestionable, even though most of the data collected was limited to laboratory-­ based single-person, single-skill case studies and short-term results. Study findings were affected by unacknowledged limitations or advantages conferred by innate ability, parental involvement levels, staff quality and more. To improve its status, behaviourist services were proffered as a ‘treatment,’ as if these were equivalent to a medical technology or even a cure. Behaviourist methodology was attached to autism specifically by O. Ivar Lovaas (1927–2010) from the early 1960s, and continues to be used. Born in Norway, Lovaas had trained as a psychologist in the US state of Washington. Thanks to the post-war funding boom, he landed an experimental psychology laboratory at the University of California in Los Angeles (UCLA), which gradually expanded to fill an entire ward at the UCLA Neuropsychiatric Institute. As journalist Robert Ito wrote, ‘It was the era of Kennedy and Johnson, when the federal government was

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funnelling huge amounts of money into programs designed to combat a host of social ills’ (Ito, 2004). Many of Lovaas’s child patients were drawn from nearby Camarillo State Hospital, because as in Britain, institutionalisation was commonly recommended to American parents (ibid.). From these beginnings, applied behaviour analysis (ABA) as a methodology for working with children on the autism spectrum spread from what eventually became the Lovaas Institute West to 12 ‘Lovaas centres’ in the US as well as a worldwide network of certified and uncertified ABA consultants. There are ABA-based schools, although the majority of ABA work is now done in home programmes, and Lovaas’s ideas have spawned a veritable industry of journals, books, conferences and services. Trained ABA practitioners can draw on an elaborate set of routines today, but the basic principles remain the same: break every task down into a series of simple steps, repeat these over and over (this element is called ‘discrete trials’) and then reward or punish the child to gain compliance with the therapist’s command to carry out the step (Skinner’s original operant conditioning technique). Once steps have been mastered, these can be joined together (‘chained’) to assist the child in mastering complete tasks (Lovaas, 1981). In contrast to most modern forms of teaching, it is an entirely adult-led process. Therapists or parents choose the tasks to be mastered—often these are a series of exercises in obedience, such as asking the child to sit down, touch a certain colour, place an item in a box, or look at the adult. As people with autism have great difficulties with generalising a task learned in one setting to a different context, the levels of repetition in different settings to gain real skill mastery can be mind-numbing for both the child and the adults involved. In reality, many skills learned at the table with an ABA therapist do not end up transferring to everyday life. Repetition of discrete trials and operant conditioning can result in learning for at least some types of skills, although many critics of the method argue that this form of rote learning is unreliable and unsatisfactory for higher-level skills and that it is matched or surpassed in efficacy by other forms of intervention (Magiati et al., 1997). Lovaas’s cornerstone study was the Young Autism Project, which began in 1970. Nineteen children diagnosed with autism received 40 hours per week of top-quality ABA services from UCLA student therapists. This group’s results were compared with those of other children, also diagnosed with autism, who received standard special education services and speech therapy, both of indeterminate length and quality. Unsurprisingly,

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most of the children who received intensive services showed at least some gains in areas like compliance with tasks on IQ tests and paying attention to requests. Lovaas claimed that nine reached normal levels of functioning (Lovaas, 1987). It has to be said that even these were functioning at the very low end of the normal IQ range (just above 70) and that their inclusion in mainstream classrooms later in the 1970s or 1980s may have had far more to do with California’s gradual move towards mainstreaming for disabled children, having parents savvy enough to have gotten them into the UCLA programme in the first place, and having been trained to comply more readily with adult directions than with any amelioration of autism. Nor is there any way to use the control group as a real comparison, as it was not matched (Gresham & MacMillar, 1998). That said, it was easy to sell doing something, even something imperfect, as better than doing nothing at all. And for many California children with autism, ‘nothing at all’ was a fair descriptor of what was on offer. Even for the Young Autism Project group, the children who returned to Camarillo State Hospital subsequent to the study’s end regressed because, like Ely Hospital before 1970, the hospital had no educational programmes (Ito, op cit.). Julia Crowder provides a good description of ABA work carried out in her home by students working for Lovaas as part of the Young Autism Project. For almost two years, she worked alongside student therapists to provide around 40 hours per week of ABA for her son, Drew. Hours could be spent on something as simple as convincing Drew to touch his nose on command in return for a morsel of food. ‘After each session, I felt like I had been in a fight,’ she wrote during the early part of the process. ‘My shoulders ached from tension, and sometimes I had deep indentations in my palms from clenching my hands’ (Johnson & Crowder, 1994, p. 91). For Crowder, ABA appears to have been a useful tool for helping her son improve his compliance and social communication well enough to attend mainstream school and eventually college. An essay written by Drew as a college freshman is included as a postscript to her book, and it is clear from this that he retained some autistic traits—though none that were a barrier to leading a relatively typical life as a young adult (ibid.). Were these gains due to ABA, to other interventions, perhaps to his family’s dedication or to his own hard work? Or might he have developed in this way regardless? It is impossible to know, but perhaps the intensity and one-to-one nature of ABA played at least some part.

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For others, ABA was not so successful. Karl Taro Greenfeld provides an unsparing view of his autistic brother Noah’s time in Lovaas’s programme. When Noah failed to respond to the method within six months, Lovaas recommended a 36-hour food-and-water fast that made the child ill, not more eager to work for food. In the end, Greenfeld writes, ‘After several months at Franz Hall, after dozens of hours of therapists living in our home, it is obvious that Noah will not be among that 5 percent of severely autistic children that Lovaas then claimed could recover’ via ABA (Greenfeld, 2009, p. 100). It is difficult to know what an autistic person’s innate capabilities are based on his or her early childhood characteristics. As noted previously, even some of Kanner’s small original group of patients, none of whom received special education services and many of whom will have experienced the worst sort of institutional care, lived relatively independent lives as adults. Factors like untreated seizure disorders or overuse of medication can blight the intellectual development and overall health of people with autism, as can neglect and abuse, leading to poor outcomes. Even the best special education techniques cannot alter the limits that may be imposed by severe intellectual disabilities where these are present. As will be further explored in the final chapters of this book, the evidence base for interventions is still lacking: even now, we know what is harmful, we have some knowledge of things that may be helpful, but we remain unsure what will be of most value to specific individuals. And because autism spectrum conditions are multi-dimensional and occur within a personal and social context, appropriate intervention—or intervention at all—is always an individual and fraught decision. The way that autism had been positioned in the 1950s and 1960s made a huge difference to the kinds of interventions that have been considered and used, then and since. It says something about the way autism was seen in 1971 that when ‘Genie,’ an abused and deliberately isolated child who had many behaviours consistent with autism, was brought to another UCLA facility for treatment, Lovaas was not consulted despite being at work in a nearby lab (Gadbois, 2001). The ‘Genie’ case is one of the best known in abnormal child psychology (Rymer, 1993). When a lecturer researching its outcome enquired many years later as to why Lovaas had not been asked for assistance, she was told by UCLA linguist Susan Curtiss, who had been a member of the original research team, that ‘the team felt that Dr. Lovaas’ approaches were not well suited to Genie who required nurturance, affection, love, and an

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opportunity to experience the world’ (Gadbois, op cit.). It was apparently a given that such niceties were not required by children with autism. After almost two decades of laboratory-based research, Lovaas eventually published a book about his methods. Teaching Developmentally Disabled Children: The ME Book, published in 1981, was aimed at a professional audience. Although behaviourist methods had been used on an ad hoc basis and in clinical trials for many years, the method became particularly popular following the publication of a parent narrative by Catherine Maurice (1993). The use of punishments (‘aversives’ in ABA parlance) characterised the Young Autism Project study and other behaviour modification experiments carried out at Lovaas’s UCLA unit. In a 1974 article for the popular US magazine Psychology Today, Lovaas said that his response to unwanted behaviour was to ‘spank them, and spank them good’ and discussed the use of shocks and other aversives in detail (Chance, 1974). Lovaas’s research group was eventually barred from using pain-based aversives, instead concentrating on the use of creative positive reinforcement to encourage desired behaviour. Unfortunately for people with autism and related conditions, aversives have not gone out of style in some places, and the denial of positive reinforcements can have tragic consequences as well. For example, in 1995 the Massachusetts Department of Mental Retardation forced an overhaul of procedures after a 19-year-old girl with learning difficulties apparently starved to death when the ‘positive reinforcer’ of food was denied to her by care-home staff in a facility run by one of B.F. Skinner’s former students (Autism National Committee, 1995). But such actions are easier to justify when those acted upon are seen as less than human. On several occasions Lovaas himself equated humanness with normalcy, as in the following 1974 quote: You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person. (Chance, op cit., p. 76)

To some extent, Lovaas also rejected the idea that the behaviours seen in autism were related to an organic cause (although he carefully hedged his bets on this issue) or indeed that they were related to each other.

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‘Kanner’s diagnosis has shown itself to be a poor hypothesis, given that, in the 55 years after Kanner proposed the diagnosis, no cause or treatment for autism has been found,’ he wrote in 2000. ‘The sooner the hypothesis is rejected, the more productive of causes and treatments our search may be’ (Lovaas, 2000). Lovaas was hardly alone in seeing autistic people in this negative way. Many mainstream psychologists have made similar pronouncements, comparing people with autism to inanimate objects, animals or even zombies (Waltz, 2008). The development of ABA was also part and parcel of a specific behaviourist approach to childhood, which affected not only autistic children but also others perceived to be ‘deviant’ in some way. Children perceived as gender-nonconforming or potentially homosexual were another behaviourist target. In fact, as Gibson and Douglas (2018) have shown, Lovaas’s lab also launched what is now known as ‘gay conversion therapy,’ using similar behaviourist methods to try to change the behaviours of boys assigned to the ‘Feminine Boy Project’ in his UCLA clinic. This discredited approach to different gender presentation is now known to have been damaging but, as these authors note, ‘Lovaas’s approach initiated a booming autism recovery industry and LGBTQ “conversion therapy” industry, asserting the need for urgent, very intensive (expensive), professionally guided, largely standardized approaches as the best/ only hope for these children and their future selves’ (Gibson and Douglas, op cit., p. 20). Children identified as ‘predelinquent’ were also subjected to behaviourist programmes (and as with gender-nonconforming youth, the result was failure) (Davidson & Wolfred, 1977). Children and youth held in detention centres became a frequent target (Braukmann et  al., 1975; Jeness, 1975). Many of the children who arrive in young offender institutions are disabled, and they experience behavioural approaches (including behaviourism’s latest guise, cognitive behaviourism) as something that requires them to ‘fake their change,’ as behaviourism and top-down discipline are tightly bound together in these settings (Abrams et  al., 2005, p. 19). The difference for these youth is typically race and class. As Gibson and Douglas state, the middle-class male children with autism who are targeted in ABA home programmes are seen as ‘surprising deviants’ (Gibson and Douglas, op cit., p. 7), their differences medicalised, while deviance in Black, brown, indigenous and poor children is seen as unsurprising, and criminalised.

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Teaching the TEACCH Way On the Eastern side of the North American continent, another group of ambitious clinicians emerged in 1972 and soon found that Lovaas was quick to defend a territory that he had hoped to claim as his own. Eric Schopler—once a psychotherapy student of Bruno Bettelheim’s and subsequently one of Bettelheim’s earliest detractors (Schopler, 1993)—had been hired by the University of North Carolina to devise a state-wide programme for children with autism. He was soon joined by Gary Mesibov, a young Stanford-trained child psychologist freshly out of a two-year stint in the Peace Corps (Mesibov, G., 2009, personal communication, 27 January). Mesibov stated that from the start he felt ‘people are more complicated than reinforcement and punishment—it matters how your brain processes things, the social situations you’re working in’ (ibid.). He found a kindred spirit in Schopler, but Lovaas found a lifelong enemy. ‘With Eric and Lovaas, it was hate at first sight,’ Mesibov said many years later. It was more than just a disagreement about methods, it was personal. Mesibov summed up both his and Schopler’s views of ABA as a methodology by saying that ‘Lovaas just zapped and fed people’ (ibid.). Lovaas was also a difficult personality, as evidenced by his frequent and vociferous attacks on those who opposed his methods—a 2000 article republished by the organisation Families for Early Autism Treatment (FEAT) called claims by dozens of detractors ‘distortions’ but detailed Lovaas’s efforts to shut down critics through personal or legal means (Lovaas, 2000, op cit.). Most importantly, Schopler and Mesibov felt that Lovaas did not respond to the growing body of information about autism as a developmental disability, and that he saw it as something so negative that his extreme means were valid. Schopler and Mesibov’s Treatment and Education of Autistic and related Communication handicapped CHildren (TEACCH) experiment eventually reached most children diagnosed with autism in North Carolina, and its methods were then adapted to work with adults across the lifespan. It did not promise to make autistic children into normal adults, but instead built on their relative strengths in areas like in visual discrimination and memory to improve their ability to learn and get on in life. Its core techniques are structured teaching—similar to ABA in that tasks are broken down into small steps, but dissimilar in that learning usually takes place in

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an everyday, meaningful context—and adaptations to the school and home environment to make it more ‘autism-friendly.’ A classroom set up along TEACCH lines might include study carrels that allow students to carry out their work with fewer distractions; systems for completing work that make the start, middle, and end of tasks more obvious; and visual timetables to help students organise their day. Walls are uncluttered to minimise visual distraction, and colour-coding and labelling are used to make spaces and activities easier to navigate. These are techniques that can be copied at home or in the workplace. As Mesibov said in a 2001 interview, The power of TEACCH is that there is no one strategy or technique. The basic concept of trying to use the strengths of children with autism and help the child to make sense of the word can take you in a lot of different directions … TEACCH is the most widespread programme because it is designed to be used by many different cultures, which can develop it in their own way. (Feinstein, 2001)

Because of its portability and adaptability, Mesibov is probably correct in saying that TEACCH methods—though perhaps not the whole programme or its ethos—are the most widespread in modern autism education. Its core principle of seeing autism as a culture has proven more challenging in a mainstream culture focused on eliminating rather than celebrating diversity, however.

Medical and Therapeutic Dead Ends During the 1960s, 1970s and 1980s, multiple approaches to autism seemed to develop largely in isolation. There was ‘very little discussion’ between behaviourists, adherents of various schools of psychology and the emerging cognitive theorists ‘as the ideological framework is so different,’ said autism researcher Uta Frith (1941–), a protégée of both Lorna Wing and Michael Rutter. ‘The language that each of the groups use is utterly different and discussion can be very confused as a result’ (Frith, U., 2005, personal communication, 13 May). Within psychotherapy, a number of special techniques were developed that made curative claims, most notably play therapy, which was popularised by Virgina Axline (1911–1988). Parents and professionals alike were

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easily seduced by accounts like Axline’s book Dibs in Search of Self (1964), in which a disturbed autistic child emerges from his shell to become not only normal but actually superior in his level of emotional understanding and ability to communicate. James T.  Fisher has called it ‘a landmark autism conversion narrative’ and demonstrates how Axline’s description of her use of play to break down Dibs’ self-imposed barriers fits the conventions of the standard American Protestant ‘narrative of a subject in search of a transformed or redeemed “self”,’ a familiar confessional trajectory that bears no relationship to the actual experience of autism (Fisher, in Osteen, 2007, p. 54). This kind of narrative was already common in popular literature about mental ill health, with its typical theme of therapist-as-­ priest shepherding the abject subject along the way to redemption. Unfortunately for the thousands of families who placed their hope in play therapy, neurological differences do not disappear as a result of playing with toy families in dollhouses or miniature animals in sandboxes, any more than they did through Kleinian therapy with children, or putting the mothers of autistic children through years of talking therapy on the psychiatrist’s couch. ‘Dibs’ was at best a composite and exaggerated character, at worst a fictitious one (ibid., pp. 51–64). Although it has become an important tool for working with abused children, play therapy for autism was an elaborate, costly and ultimately useless intervention, as autism was not a disorder of the ‘self’ at all. Whilst psychotherapists, behaviourists and more mainstream special educators were busy with their own arguments over what to do about autism, quite different things were occurring in medical psychiatry. The 1960s ‘biological revolution’ in psychiatry had its impact on autism, but it was generally not a positive one. Many drugs were tried in the 1960s, 1970s and 1980s, most notably fenfluramine, a now-discredited diet pill that turned out to cause serious heart damage and was eventually removed from the market. Drugs were often chosen on the basis of the flimsiest of evidence. Fenfluramine, for example, was marketed to American doctors for use in autistic children based on a short open trial involving just three subjects. As Bernard Rimland wrote, sales went forward ‘despite the fact that there was substantial evidence that fenfluramine achieved its major effect—lowering serotonin—by poisoning brain cells, and despite the fact that the Physicians Desk Reference (PDR) listed death as one of the known “side effects”’ (Rimland, 1991, p.  3). Almost as quickly as it appeared as

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‘somewhat of a miracle cure for autism,’ fenfluramine disappeared from the scene under the weight of lawsuits and disappointing results (Gillberg, 2003, p. 340). ‘What a business it all was,’ sighed Lorna Wing (1928–2014), as she recalled these years in an interview. ‘All sorts of medications, fenfluramine and others, like a bottle rocket that went shooting up and then fizzled out’ (Wing, L., 2005, personal communication, 25 May). Along with her husband John, with whom she worked at London’s Institute of Psychiatry, Wing was a parent-advocate and a prominent opponent of institutionalisation (Evans, 2017). There are thousands of untold stories from the era of mass institutionalisation, but the use of people with autism and developmental disabilities in medical and drug experiments is one that should not be forgotten. Such abuse was rife from the 1950s forward. The infectious hepatitis trials at Willowbrook, which ran from 1963 to 1966, are relatively well known. In these experiments, which were in some ways analogous to the infamous Tuskegee syphilis experiment on Black men (Jones, 1992), the course of untreated hepatitis was observed to derive information on prevention and treatment. In fact, what was done at Willowbrook was actually worse: the Tuskegee research subjects already had syphilis when they entered the study, whilst the children at Willowbrook were deliberately infected with the hepatitis virus (Rothman and Rothman, op cit.). Eventually this sort of blatant medical experimentation did come in for criticism, but the fact remains that people with autism were not seen as having much value unless they could be ‘cured.’ With a large population of institutionalised children handy whose parents were usually out of the picture or easy to convince that desperate measures were warranted, children and adults with developmental disabilities were therefore used depressingly often in drug trials. Many more were simply given untested psychiatric medications as a possible means of behaviour control. It is instructive, for example, to revisit the history of how lysergic acid diethylamide (LSD-25) was used on children in multiple clinical trials by several researchers. The researcher most closely identified with these trials was Dr Lauretta Bender (1897–1987), who worked at Creedmoor State Hospital in Queens, New  York, from 1956 to 1969. Dr Bender had already used electroconvulsive  therapy  (ECT) on at least 100 ‘schizophrenic’ children as young as age two at New York City’s Bellevue Hospital during her work there from 1930 to 1956 (Bender, 1947), most of whom

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were likely to have actually been on the autism spectrum. As Robert Whitaker and others have substantiated, ECT used in the way Bender did it—typically, a series of 20 daily sessions without anaesthetics or muscle relaxants—produced decreased agitation, aggression and motor activity through induced brain damage (Whitaker, 2002). Mental health advocate Ted Chabasinski has published a powerful account of surviving Bender’s ministrations. He describes life on the children’s ward at Bellevue: At Bellevue, I slept in what seemed to me, small as I was, as a gigantic hallway; cold, echoing at night with strange and frightening noises, with a ceiling as high as the sky. There were windows even up to the ceiling, but they had not been cleaned for many years, and the hallway was always dark, even during the day, even when the sun was shining outside. My bed, furnished with a hard filthy mattress that smelled very bad and an olive drab blanket, was all alone in the hallway … Sometimes Doctor Bender would appear during the day, coming through the elevator door in the middle of the hallway, surrounded by her protectors, many aides who seemed to worship her, or maybe they were just afraid of her, as I was. Sometimes she would pass very close to me, looking at me, but not acknowledging me, as if I didn’t exist. (Chabasinski, 2012)

At the age of six, Chabasinski survived multiple rounds of ECT, as well as repeated rape by an employee, before his release (ibid.). But such appalling lack of care for disabled children was not uncommon at the time—and sadly, somewhere in the world institutionalised autistic children and adults are suffering the same abuse today. Bender also experimented on autistic children using insulin shock via injections of Metrazol and a variety of other medications before embarking on her investigation of LSD-25 and a derivative, 1-methyl-D-lysergic acid butanolamide (UML-491), as therapeutic agents. In 1956, Bender took over the directorship of the children’s ward at Creedmoor State Hospital. Creedmoor had expanded from a small ‘farm colony’ for psychiatric patients from Brooklyn State Hospital to a huge, understaffed facility with around 7000 inmates, 400 of them children under the age of 15. It was in this environment that Bender carried out her drug trials. Her rationale was based on the idea that autism was a deliberate psychic mechanism utilised by the affected child as a reaction to trauma. As Bender wrote, she was ‘hoping to break through the autistic defenses’ using LSD (Bender, 1966, p. 43). However, her findings also

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suggested biological processes at work, and she offered a secondary rationale based on LSD’s possible impact on the serotonin system. The multiple actions of serotonin were poorly understood at the time, and still have not been sufficiently explored as regards the neurotransmitter’s potential role in autism. It is certainly involved in the regulation of sensory perception, however, and the most interesting results from experiments with psychedelics (Fisher, 1997) can be read as explorations of these possible effects. Bender’s experiments on vulnerable children, however, cannot be seen as promising. She tested LSD or UML on about 100 children. The patients received daily doses for months or even years (Herman, 2019). Adam Feinstein (2010) has noted that Bender actually stumbled across considerable evidence for biological causation in the course of her research. As long as psychological theories of causation remained prevalent, however, this information could not contribute to improved practice. And as the 1960s came to a close and the 1970s began, psychological theories about autism had perhaps their moment of greatest prominence. Not only were these views held by top researchers in the field, but autism figured heavily in popular psychological discourse. In particular, influential figures in the emerging humanistic psychology movement, such as Erich Fromm and the anthropologist Jules Henry, used autism as an example of the culturally induced ‘aloneness’ of modern man, which they blamed on the atomisation of modern society. This idea was based on mainstream psychological theories about autism, coupled with an erroneous belief that autism does not occur in ‘primitive’ societies. As Henry wrote: Domestic desertion—leaving a child to cry unattended—is often impossible in tribal societies because tribal peoples do not tolerate a mother’s leaving her child alone this way, and because there are usually plenty of people around to take care of a baby if his mother has to be away. Thus private enterprise regarding babies, and the shutting up of families away from one another in apartments and houses so that the cries of their children cannot be heard by outsiders, is a gift to us from civilization—and so, of course, therefore, is autism. (Henry, 1973, p. 41)

These ideas had an impact outside the academy and the therapist’s office, because humanistic psychology was also one of the foundations of the ‘New Age’ and human potential movements. Ideas about autism therefore made their way into the arena of pop psychology and alternative

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therapies, reaching far more members of the general public—and also finding some troubling expressions. For example, Robert Zaslow, a researcher whose work on autism was cited by New Age child-development writer Joseph Chilton Pearce, developed a method of confrontational and even violent ‘rage-reduction therapy’ known as the Z-Process. Although Zaslow himself eventually lost his licence to practise, his ideas were further developed by numerous others— and have not disappeared, as the existence of a 2010 book on ‘treating’ autism using the Z-Process demonstrates. Holding Therapy, a methodology usually credited to Dr Martha Welch (1988), closely resembled Zaslow’s Z-Process. Welch drew on the same late 1960s studies on autism as Joseph Chilton Pearce. Indeed, her name first surfaced in a contribution to Autistic Children: New Hope for a Cure (Tinbergen & Tinbergen, 1983), based on the research into birds that Pearce built the conclusion to the first chapter of his book Magical Child around (Pearce, 1977, pp. 16–17). As the name implies, Holding Therapy involved holding a child, forcefully, at length and often against his or her will. Practitioners encouraged mothers to scream at their unresponsive children, and some used a simulated repeat journey through the birth canal (also a central feature of the Z-Process method) or stimulated regressive behaviour as therapeutic tools (Mercer, 2013). The underlying concept was that autism was some sort of extreme reaction to the trauma of birth itself, or even to some form of pre-birth trauma. Uta Frith (op cit.) described it as ‘a rather pernicious type of therapy,’ but it was just one of many ‘miracle cures’ to emerge from this particular nexus of ideas. Variations of this abusive practice have popped up around the world at regular intervals. It is completely unscientific and has proven deadly in a number of cases. In the world of autism treatment, New Age thinking is most directly exemplified by the work of Barry Neil Kaufman (1942–). Author of several books on both autism and self-actualisation, Kaufman’s ideas are based on the work of psychotherapist Bruce diMarsico, who taught what he called the ‘Option Philosophy.’ In keeping with the core ideas of humanistic psychology, diMarsico suggested that the way to helping others reach their potential began with absolute acceptance. However, he said, the therapist should then move on to question any belief systems that appear to be holding the patient back, encouraging them to jettison beliefs that are causing unhappiness (diMarsico, 2010). One of the autism world’s most successful entrepreneurs, Kaufman’s success was based on promising a ‘miracle cure’ via his book Son-Rise (1976) and a therapy called the

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Son-­Rise Program. Kaufman also taught a self-actualisation method called the Option Process. One of the core features of many New Age notions about autism (and other forms of illness and distress) is that it emerges from being out of balance with nature or is deliberately invited in by the sufferer to address a need in this life, or perhaps a previous life. Old ideas about spirit possession as a cause of autism have also made a modern appearance in New Age clothing, especially in the guise of the so-called Indigo Child (Waltz, 2009). As with the more mainstream ABA and TEACCH approaches, Kaufman’s programme exemplified another trend that would feature prominently in the next stage of the history of autism: the rise of parents of autistic children as the ultimate ‘autism experts’ and as primary therapists. In the next chapter, the key role of parents in the social and medical history of autism will be explored in greater detail.

Notes 1. ‘Jimmy Jones’ is a composite identity based on accounts collected for the Cardiff People First organisation’s Ely Hospital project; my 2011 interview with John Clements, a former clinician at Ely Hospital; and other accounts of life in British long-stay hospitals, particularly Hubert and Hollins (2006). 2. Willowbrook was a large institution for people with developmental disabilities in New York. Investigative journalists working with concerned staff and parents revealed the extent of neglect, abuse, and unethical medical experimentation that took place there (which are discussed elsewhere in this book). This well-publicised news story contributed greatly to the pace of deinstitutionalisation in the US. 3. Lest the reader think that the world has moved on, similar conditions exist in institutions outside Western Europe and North America. In 2012 one of my students described an identical use of donated toys as decorations in an institution in Pakistan she had visited, a charity-funded facility in which autistic children were living.

References Abrams, L. S., Kim, K., & Anderson-Nathe, B. (2005). Paradoxes of treatment in juvenile corrections. Child & Youth Care Forum, 34(1), 7–25. https://doi. org/10.1007/s10566-­004-­0879-­3 Autism National Committee. (1995). Abuse uncovered in death at BRI: Victimisation of 19-year-old Linda Cornelison called ‘inhumane beyond all reason.’ The Communicator, 6(1). Retrieved March 29, 2012, from http:// www.normemma.com/advocacy/lcorneli.htm

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Bender, L. (1947). One hundred cases of childhood schizophrenia treated with electric shock. Transactions of the American Neurological Association, 72, 165–168. Bender, L. (1966). D-Lysergic Acid in the treatment of the biological features of childhood schizophrenia. Diseases of the Nervous System, 27, 43–46. Braukmann, C. J., Fixsen, D. L., Phillips, E. L., & Wolf, M. M. (1975). Behavioral approaches to treatment in the crime and delinquency field. Criminology, 13(3), 299–331. Butler, I., & Drakeford, M. (2005). Scandal, social policy and social welfare (2nd ed.). The Policy Press. Chabasinski, T. (2012) A child on the shock ward. Mad in America. Retrieved June 2, 2023, from https://www.madinamerica/2012/07/a-­child-­on-­the-­ shock-­ward/ Chance, P. (1974, January). ‘After you hit a child, you can’t just get up and leave him: You are hooked to that child’: A conversation with O. Ivar Lovaas about self-mutilating children and why their parents make it worse. Psychology Today, pp. 76–84. Davidson, W.  S., & Wolfred, T.  R. (1977). Evaluation of a community-based behavior modification program for prevention of delinquency: The failure of success. Community Mental Health Journal, 13(4), 296–306. https://doi. org/10.1007/BF01422531 Department of Health and Social Security. (1969). Report of the committee of inquiry into allegations of ill-treatment of patients and other irregularities at Ely Hospital, Cardiff. HMSO. diMarsico, B. (2010). The Option Method: The myth of unhappiness. Collected works of Bruce diMarsico on the Option Method and attitude, Vols. 1–3. Dialogues in Self Discovery. Evans, B. (2017). The transformation of social life and the transformation of autism in the 1960s. In The metamorphosis of autism in Britain (pp. 189–247). University of Manchester Press. Feinstein, A. (2001). Interview with Professor Gary Mesibov. Looking Up, 2(10). Retrieved February 12, 2012, from http://www.lookingupautism.org/ Articles/GaryMesibov.html Feinstein, A. (2010). A history of autism: Conversations with the pioneers. Wiley-Blackwell. Fisher, G. (1997). Treatment of childhood schizophrenia utilizing LSD and psilocybin. Newsletter of the Multidisciplinary Association for Psychedelic Studies, 7(3), 18–25. Gadbois, S. (2001, November 8). Re: Genie—The latest (as of October 2001). TIPS (Teaching in the Psychological Sciences) List. Retrieved February 12, 2012, from http://www.mail-­archive.com/[email protected]/msg06590.html

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Gibson, M. F., & Douglas, P. (2018). Disturbing behaviors: Ole Ivar Lovaas and the queer history of autism science. Catalyst: Feminism, Theory, Technoscience, 42(1), 1–28. Gillberg, C. (2003). Clinical child neuropsychiatry. Cambridge University Press. Greenfeld, K. T. (2009). Boy alone: A brother’s memoir. HarperCollins. Gresham, F. M., & MacMillar, D. L. (1998). Early intervention project: Can its claims be substantiated and its effects replicated? Journal of Autism and Developmental Disorders, 28(1), 5–13. Henry, J. (1973). Pathways to madness. Vintage Books. Herman, E. (2019) Lauretta Bender, 1897–1987. The Autism History Project. Knight Law Center, University of Oregon. Retrieved December 31, 2022, from https://blogs.uoregon.edu/autismhistoryproject/people/lauretta-­ bender-­1897-­1987/ Hubert, J., & Hollins, S. (2006). Men with severe learning disabilities and challenging behaviour in long-stay hospital care: Qualitative study. British Journal of Psychiatry, 188, 70–74. Hutchinson, C. (2012, January 24). Looking back at Ely Hospital: Staff ruled every aspect of life. South Wales Echo. Retrieved February 5, 2012, from http:// www.walesonline.co.uk/cardiffonline/cardiff-­n ews/2012/01/24/ely-­ hospital-­staff-­ruled-­every-­aspect-­of-­life-­91466-­30187831/ Ito, R. (2004, April). The phantom chaser. Los Angeles, pp. 50–57. Jeness, C.  F. (1975). Comparative effectiveness of behavior modification and transactional analysis programs for delinquents. Journal of Consulting and Clinical Psychology, 43(6), 758–779. https://doi.org/10.1037/h0078109 Johnson, C., & Crowder, J. (1994). Autism: From tragedy to triumph. Branden Publishing Company. Jones, J. H. (1992). Bad blood: The Tuskegee syphilis experiment. The Free Press. Kaufman, B. N. (1976). Son-rise. Warner Books. Lovaas, O.  I. (1981). Teaching developmentally disabled children: The ME book. Pro-Ed Inc.. Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9. Lovaas, O. I. (2000). Clarifying comments on the UCLA Young Autism Project. Families for Early Autism Treatment (FEAT) CT.  Retrieved February 13, 2012, from http://www.ctfeat.org/articles/LovaasRebut.htm Magiati, I., Charman, T., & Howlin, P. (1997). A two-year prospective followup study of community-based early intensive behavioural intervention and specialist nursery provision for children with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 48(8), 803–812. Maurice, C. (1993). Let me hear your voice: A family’s triumph over Autism. Ballantine Books.

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Osteen, M. (Ed.). (2007). Autism and representation: A comprehensive introduction. Routledge. Pearce, J. C. (1977). Magical child. Bantam New Age Books. Rimland, B. (1991). Vitamin B6 vs fenfluarmine: A case study in medical bias. Autism Research Review International, 51(1), 3. Rothman, D. J., & Rothman, S. M. (2005). The Willowbrook Wars: Bringing the mentally disabled into the community. Transaction Publishers. Rymer, R. (1993). Genie: A scientific tragedy. HarperCollins Publishers. Schopler, E. (1993). The anatomy of a negative role model. In G. G. Brannigan & M.  R. Merrens (Eds.), The undaunted psychologist: Adventures in research (pp. 173–186). Temple University Press. Tinbergen, N., & Tinbergen, E. (1983). Autistic children: New hope for a cure. Routledge. Waltz, M. (2008). Autism=Death: The social and medical impact of a catastrophic medical model of autistic spectrum disorders. The Journal of Popular Narrative Media, 1(1), 13–24. Waltz, M. (2009). From changelings to crystal children: An examination of ‘New Age’ ideas about autism. Journal of Religion Disability & Health, 13(2), 114–128. https://doi.org/10.1080/15228960802581511 Welch, M. G. (1988). Holding time. Simon & Schuster. Whitaker, R. (2002). Mad in America: Bad science, bad medicine, and the enduring mistreatment of the mentally ill. Basic Books.

CHAPTER 7

Parent-Blaming, Parent Power and Research

As the 1970s moved forward, many adults like Ely Hospital’s Jimmy Jones remained on locked wards, but far fewer children were being shunted into long-stay institutions. In any case, there had always been some families who resisted the advice to institutionalise. For example, in a small coastal village in England, the Edge family struggled to keep their autistic son Michael at home during the 1960s. It was help from friends and relatives, and eventually support services started by the National Autistic Society (NAS), that made this possible (Stevens, 2011). Before a small boarding school for autistic children was opened by the NAS in Kent, Michael was cared for by his family, briefly also attending a school for the deaf, even though he had no hearing impairment. As an adult, he lives in an NAS group home. Understandably grateful for the support the parent organisation provided, his parents became avid fundraisers for the charity (ibid.). According to historian James W.  Trent (1996), who has charted the history of ideas about intellectual disabilities, parent organisations focused on these conditions first came together in the US and the UK in the 1950s, largely in response to a series of post-war exposés about conditions in residential facilities. At the same time that middle- and upper-class parents were being told to ‘put away’ their disabled children, the available institutions were being revealed as dangerous, even deadly. Poor and working-class parents rarely had a choice in the matter.

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Economic and social changes had given rise to widespread institutionalisation and also played a role in increased parent activism. Families often faced housing shortages after the Second World War, and they were expected to be increasingly mobile and willing to work flexible hours from the 1950s forward. More mothers were also working outside the home, despite concurrent maternalist cultural pressure. Citing the work of Elaine Tyler May on the ‘reproductive consensus’ that characterised the post-war baby boom on both sides of the Atlantic, Trent writes that ‘as adult fulfilment in the 1950s became more and more a matter of successful parenting, parents who had retarded children were not just a little suspect’ (ibid., p. 239). Families became more isolated from their communities and from other relatives, making the job of caring for a child with a disability in the home even more difficult. Trent cites such well-respected authorities as Dr Benjamin Spock and Good Housekeeping’s Dr Emmett Holt as advising ‘parents who could not cope to put their retarded children away and forget about them’ (ibid., p.  241). He adds that in response to these views, existing institutions, particularly the state schools in the US (not actually schools per se, but residential facilities analogous to the UK’s Special Care Units), began to admit children and infants in much greater numbers. Of course, because of parent-blaming this imperative applied doubly to families trying to cope with autism, and it remained the standard advice for the next three decades. Actor William Christopher and his wife Barbara described their experience at the Neuropsychiatric Institute at UCLA in 1977 as follows: The following day we met with the psychiatrist. He recommended that we get rid of Ned. We had tried with Ned, but he had gone as far as he could go. We had adopted this child; we had reached into the barrel and pulled out a rotten apple. It was time to realize this and to relinquish him to the state. Then we could get on with working on our own lives. And besides, if we relinquished him, we would be able to write him out of our will; we would have no more financial responsibility. Ned was classically autistic. Ned had no future. His only strong point was that he was good-looking and likeable. Had he said anything to upset me? Here was a Kleenex. (Christopher & Christopher, 1989, p. 101)

Note the references in this narrative to the economic imperative to jettison their disabled child. However, parents of autistic children found themselves in a terrible double bind: because of their children’s

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behavioural differences, and even more so because the dominant discourse claimed that autism could be cured through psychotherapy, children with autism were sometimes barred from placements that were available to other children with developmental disabilities. It was also more difficult for parents of autistic children to organise and push for home-based services and schools that would allow them to avoid institutionalisation, due to the stigma attached to them by the ‘refrigerator mother’ hypothesis. It was the early 1960s before autism-specific parent organisations appeared. The NAS in the UK was the world’s first. NAS founding member Helen Green Allison (1923–2011) wrote that about one-third of the early NAS, then known as the Society for Psychotic Children, derived from a broadcast she made on the BBC’s ‘Woman’s Hour’ programme on 18 October 1961. The remaining membership was drawn from parents of children at her son’s school or parents who had attended a conference on ‘The Psychotic Child’ sponsored by the National Society for Mentally Handicapped Children (Allison, 1988). Further growth for the nascent parent organisation came through newspaper articles, starting with a 1962 story called ‘Children in Chains’ in the Evening News. It was written in the style of most charity appeals of that time, concluding with: A newly formed Society for Autistic Children has set to work to awaken the nation to the claims of these sad, lost little souls … It is easy to feel pity for the child physically crippled … Can’t we feel pity too for the baby whose mind is locked? And urge, by weight of public opinion, that the nation should provide the keys that will, in the light of today’s knowledge, unlock it? (Frame, 1962)

This charity narrative of autism uses the ‘lock and key’ metaphor already extensively employed in professional literature. It is overlain with an appeal for pity, solidarity and resources. The appeal’s goal, the metaphor indicates, is finding a cure: a key to unlocking the mind of the autistic child. The text is accompanied by photos of two attractive autistic children. Adults with autism were nowhere present in the conversation about autism in the 1960s, except as anonymous figures warehoused out of sight with the rest of society’s rejects or a worrisome figure to motivate parents. Mike Oliver (1990) has identified the pity-charity discourse of disability as based on an ideology of individualism and as perpetuating narratives of personal tragedy and dependency. Appeals for pity and charity are a

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common feature of discourse about disability and are not unique to autism. These early narratives did not seek social inclusion, probably because it was simply not perceived as an option. They asked only for some form of practical assistance and perhaps for relief from the burden of stigma. They indicate that parents were trapped by the prevailing discourse of disability, not only by that specific to autism. Parent groups provided a place where family members (mostly mothers) could speak freely, without fear of stigma, and find both support and assistance. As Allison explained, ‘We … shared our practical experiences with our children and sick jokes which only we could appreciate—“we put him down for Ealing at birth”’ (Allison, op cit.). (The North London suburb of Ealing was the home of the first autism-specific school in the UK, opened by the NAS in 1965.) They also represented a form of ‘circling the wagons,’ with parents turning their backs on a medical establishment that demonised them and looking to each other for help. Their discourse, as revealed to the author in interviews and as found in published parent narratives and parent group newsletters, was marked by a deep distrust of the mainstream medical community and of psychology and psychiatry in particular. It was tremendously difficult for parents faced with the circumstances that prevailed during this era to respond in any other way while still retaining a sense of personal dignity and purpose. Some could not cope, even in this limited way: it is an open secret that a number of mothers of autistic children committed suicide in the 1960s and 1970s (Rimland, B., 2000, personal communication, 9 May; Simpson, 2002). It is worth noting that although organising helped to relieve parents’ ‘burdens,’ both practical and social, their adoption of medicalised notions about autism and the pity-charity model placed persons with autism themselves in an object position within this new parent discourse. On the other hand, meeting other parents without the mediation of articles like Frame’s Evening News story, however objectionable the language used may seem today, was not easy. Children with disabilities were not entitled to special education services until the 1970s, and few day centres existed, so most families that had not chosen to institutionalise their child were literally coping alone. In addition, psychologists actively discouraged parents from getting together. In 1968, an anonymous mother sent a letter to the NAS newsletter, Communication, recounting her experience of her son’s diagnosis:

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The scene: an eminent physician’s consulting room. The situation: I now know the awful truth about my son and in a long three-minute silence it gradually sinks in that there will be no kind of relief, that instead I shall have to go home and try twice as hard, although I had fancied myself at the end of my tether. I ask: ‘Are there any other autistic children, other mothers, with whom I could get in touch so we may exchange experiences of management of our children?’ Yes, I was told, but they wouldn’t be the kind of people I would like to meet. (‘Antigone,’ 1967, p. 31)

By 1968, the NAS was not alone. Corresponding societies had appeared in the US, Ireland, Australia, France, Norway and Denmark; Dutch and German parents were also meeting (National Autistic Society, 1968). These groups put their efforts into distributing information and provided services that the educational and medical establishment would not. In many countries, these services eventually included schools, day centres and residential communities: faced with insurmountable barriers to gain access to state services, parents were forced to create, fund and run their own. Stigma had a huge effect on fundraising, however. As Allison wrote regarding the NAS, ‘the nation did very little’ in response to its appeals: ‘although we increased our membership from 63 in June 1962 to several hundred in 1964, practically no donations came in’ (Allison, op cit.). Allison donated a spare room in her home for an office, other parents gave their time and typing skills, and to actually fund services they were forced to cash in their own insurance policies and take out second mortgages on their homes. In 1970, the NAS paid its costs by selling Christmas cards; collecting and redeeming used postage stamps, trading stamps, cigarette coupons and tin foil; running a charity shop in London and putting out collection boxes, in addition to collecting school fees from parents (National Autistic Society, 1970). It is only in the twenty-first century that fundraising connected to autism took off, as the final chapter of this book will examine—and although parents have been harnessed to front that effort, it has done surprisingly little to meet their practical needs. As this account of the NAS’s beginnings indicates, there was also a class dimension to parent activism. Parents already struggling with poverty had no houses to re-mortgage, no insurance to draw on, no way to pay private special school fees. For middle- and upper-class parents, the arrival of a disabled child might catapult them down the socioeconomic ladder, but

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many families had nowhere to fall. Poor and working-class families, and especially those from marginalised ethnic groups, continued to face going it alone or placement of their children, often forced, in the worst sort of public institutions. As in the UK, in every country where special education and social care services for disabled children have been instituted, it has been parents who drove the process. In the US, for example, highly organised parents spearheaded a movement that eventually resulted in laws mandating appropriate special education services, starting with the Education for All Handicapped Children Act in 1975, and culminating in the Individuals with Disabilities Act (IDEA) in 2004 (Valle, 2011). However, legislation has not levelled the playing field in any country where similar processes have taken place, and in some ways it has cemented an individualised, adversarial relationship between parents and professionals. Confronted with a system that they are constantly told has limited resources, access to which is controlled by professionals with a licensed and salaried power base, parents faced a personal fight on behalf of their child. As Priya Lalvani and Chris Hale put it: The answer to why parents, even parents with access to extensive resources, must unrelentingly fight the system to advocate for their children’s needs is that, while the law provides access to adaptive and remedial education services, signaling compliance with legal guaranties, it is structured in ways that contain difference and maintain professional authority and is entrenched in institutional discourses which sanction ability-based segregation for students with disabilities, based on ideologies of separate but equal. (Lalvani & Hale, 2015, p. 32)

These authors, and others who have analysed the role of parent-­ advocates in disability education and care, point to the fact that reliance on individual advocacy efforts actually maintains the status quo, including all its baked-in inequities, preventing systemic change (ibid.). While organised groups of parents have achieved a certain amount of systemic change since the 1970s, entrenched interests and ableist value systems continue to exert control over what options are offered, how these can be accessed and who is permitted to access them. Individualised parent-advocacy also feeds what critics like Broderick and Rocigno (2021) call the ‘Autism Industrial Complex’ (p. 77), which encourages them to advocate for the purchase of, or to purchase directly, services and products to ‘help’ or normalise their child. This issue will be

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discussed in greater detail in later chapters. For now, it is important to consider how the ‘autism parent’ was socially constructed through specific kinds of narratives, and what these narratives can tell us about the impact of this role.

Parent Narratives of Autism There are thousands of published accounts of autism by parents, including those in electronic form and those that have been disguised as clinical accounts by practitioners writing about their own children. Parent narratives can be roughly divided into two categories: pathographies (‘illness narratives’) and accounts of using a specific type of therapy. Many texts of the second type are advocacy or instructional literature, although they may also include elements of illness narrative, while most pathographies will also address therapies used. For example, Catherine Maurice’s Let Me Hear Your Voice (1993) explains about and advocates for ABA, but also tells one family’s story in narrative form, whilst William and Barbara Christopher’s 1989 book is primarily a family story centred on an illness narrative, but touches on a variety of treatment approaches tried with their autistic son, including the Doman-Delacato method, sensory integration and medication. According to Trent, the ‘parent narrative’ model can be traced back to American novelist Pearl S. Buck’s 1950 book, The Child Who Never Grew, which discussed her life with her daughter Carol. Carol had severe intellectual disabilities, which were later found to be the result of PKU. Buck’s book was excerpted in popular magazines and sold well. Many titles with a similarly confessional character followed, with film star Dale Rogers’s Angel Unaware in particular becoming a best-seller in 1953 (Trent, op cit.). Avdi et al. (2000) have examined how parents construct the ‘problem’ of autistic spectrum disorders during the assessment and diagnostic period. They note that parents must engage with the discourses of ‘normal development’ and ‘disability,’ as well as with the medical model of autism, themes that can always be traced in parent narratives. Another area that these authors touch on briefly is the social effect of autism on the family, including stigmatisation of parental identities as well as of the child with autism. Many parent narratives actually have coping with this ‘stigma by association’ at their core, pushing coping with autism itself to a secondary position within the narrative.

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The issue of stigmatisation and disability has been explored by sociologist Erving Goffman, who noted that it affects individuals in multiple domains and that there are multiple responses to it. One of the most common is to try to correct the ‘defect’ that gives rise to the stigma. In the case of parents of autistic children, the ‘defect’ is either their own parenting or something within their child, depending on the prevailing view of autism that they encounter, so being hard at work to be a better parent or to make him or her normal is a compensatory activity. As Goffman wrote, ‘whether a practical technique or fraud is involved, the quest, often secret, that results provides a special indication of the extremes to which the stigmatized can be willing to go, and hence the painfulness of the situation that leads them to these extremes’ (Goffman, 1986, p. 9). He went on to cite the example of popular (but useless) remedies for deafness in the early years of the twentieth century, which sold on the back of the stigma then attached to hearing impairment (ibid.). The more rigid the category of ‘normal’ social identity is in a society, the more difficult it is to evade the perception of some discrepancy between who a person is and who he or she should be. ‘This discrepancy, when known about or apparent, spoils his social identity; it has the effect of cutting him off from society and from himself so that he stands a discredited person facing an unaccepting world,’ Goffman suggested (ibid., p. 19). The experience of ‘spoiled’ social identity is a powerful motivator, perhaps even more so when there is a belief that the status of normalcy can be regained. David E.  Gray, an Australian researcher, has also documented parent ideas about autism within personal narratives related in a clinical setting. He noted that these are culturally based, with roots in core cultural myths—for example in the case of some of the working-class Australian parents Gray worked with, the myth of the ‘Aussie battler’ was influential (Gray, 1994, p. 112). Parents are also influenced by their beliefs about the cause of the condition. In keeping with Goffman’s concept, he found that parents who believed that they were to blame for their child’s autism were those most likely to work towards a ‘cure’ rather than changing systems to accommodate their child’s needs. The experience of stigma, too, varies from person to person. Mothers in Gray’s study seemed to feel it more strongly than fathers, particularly mothers of severely affected children and of younger children (ibid.). This likely reflects the maternalist bias in modern Western society, in which mothers are seen as having the primary responsibility for their children’s health, wellbeing and social acceptability.

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From the 1960s forward, parent narratives have provided crucial fuel for parent-advocacy movements, eventually changing the face of autism research and provision. One of the first of these, The Siege: The First Eight Years of an Autistic Child (1967), was written in part as a deliberate response to Bettelheim’s work, with which it is chronologically congruent. It was intended to present a rational, well-researched counterpoint to his book The Empty Fortress—although the symmetry of the titles was an accident, it was a fortuitous one (Park, 2001). Author Clara Claiborne Park (1923–2010) walked the reader through her daughter Jessy’s first years, from birth to the first inkling that there was a ‘problem,’ to diagnosis, and to such treatment and education as was available to a well-off, professional family at the time. She eventually decided that what Jessy needed most is respect for her personal integrity, support for her special talents and assistance with those tasks she found difficult (ibid.). Putting forward her own case in The Siege was a powerful factor in holding on to Park’s sense of personal worth, as well as an act of advocacy for her child and others with autism. Park was a university English lecturer and essayist, so her prose was fluid and sometimes even poetic. She also had a keen eye for detail, focusing on the kinds of events that interest parents of ‘typical’ children as well as on her child’s unusual behaviours—this made her work accessible to a wider group of readers. She was forced to confront unexpected realities, however, including stigmatisation and the exclusionary discourses of ‘normalcy’ and autism. Park’s account of being a parent subjected to psychiatric interrogation may be the most powerful part of her narrative. In the following excerpt, she describes how she and her husband reacted to a particularly long, unpleasant and unhelpful diagnostic process: We walked slowly down the steps of the homelike building that had turned out to be a model of Kafka’s Castle. We had come prepared for bad news; we had expected to leave shaken and upset and drive back immediately. Instead we could only laugh helplessly, and went and spent a lovely afternoon in a museum. It was only gradually that we began to feel angry and resentful, to react as intelligent adults, not as obedient children in the hands of those wiser than we. Our powers of indignation reawakened—indignation at this pleasant, passive, blandly inconsiderate institution, at their incredibly casual scheduling, which multiplied difficulties and intensified anxiety, at the attractive, softly smiling social worker whom the passage of time had made forget the number of my children, at the cloudy, gently

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evasive old man who would tell us nothing unless we surprised him into it. We fed information into that computer for ten days. And when we were finally allowed to press the button, the light didn’t even go on. (ibid., p. 141)

It was Park’s willingness to confront the powerful psychiatric establishment head-on that made The Siege a best-seller amongst parents of autistic children and also opened the eyes of others to their situation. Its publication has often been credited as a watershed event in the history of autism— quite a claim for what is essentially a personal narrative with no miracle cure at the end. However, whilst a great deal of descriptive information about Jessy and her development is included in Park’s volume, The Siege is Park’s own story much more than her child’s. Joan Martin Hundley’s The Small Outsider (1971) was a similar catalyst for parent-advocacy and support in Australia, was also widely read in the UK and would have reached a greater range of readers through an abridged Readers Digest Condensed Books edition published in 1980. Hundley was less ‘literary’ in style than Park and perhaps less sentimental. She discusses her engagement with the medical model of autism, which she found lacking, and with disability stigma as it applied both to her son David and to her family. Unlike Park, Hundley was a working-class woman: a folk musician, a stenographer-turned-housewife whose husband worked for the prison service. Most often, she encountered stigma in the context of her young son’s behaviour in the community. Hundley discusses comparing her son with his siblings and other children, and trying to construct a way of seeing him as ‘normal’ but different—but notes that condemnation by outsiders made this shift extraordinarily difficult. When her child’s behaviour did not fit the norm, both David and his family could be ostracised. Following an account of a very public fracas involving her son, she wrote: How could I go on? How could I face a lifetime of staring faces every time I took David out? The embarrassment was already hard for [his sister] Ellen to take. What sort of future was there for her with such a child in the family? (ibid., pp. 78–79)

Hundley’s choice of metaphors is also interesting: as the title indicates, she saw her child as a ‘stranger’ more than as ‘severely handicapped,’ a label applied to him by others. Like most parents who have written their own stories, she used professional and special education jargon

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occasionally, but Hundley also demonstrated a keen effort to understand her child’s differences through empathy. In one section, she described a dream that she felt gave her added insight: I dreamt I saw the fear step away from his body and stand alone, like a shadow of himself. His own body stood stiff and silent like a wooden doll, and I stepped into the shape of the fear. I became one with the fear, his sensitive self; I felt as he does and saw with his eyes. I saw human beings through one eye in the forehead of the fear; I saw a narrow vision of the world. And through one ear I heard disjointed sounds coming and going. I saw a world peopled with strange moving shapes, human beings, shapes that didn’t stay in one place but kept moving out of my range of vision … I heard the voices of human beings—strange chattering noises coming out of holes in their heads, distorted heads. … Sometimes there was a blackness, a nothing all around me, and I felt afraid, and I reached out and clung to something solid, a piece of furniture that stayed in one place. Then I heard music and was comforted. I like the music because it followed recognizable patterns and I knew what to expect of it. Then I heard a voice saying, ‘You are a nothing.’ And I tried to answer, but I couldn’t speak; I could only think, and I thought, ‘I am not a nothing. I don’t know what I am, but I can feel and think, so I am not a nothing. I am, just different.’ (ibid., pp. 158–159)

As the writings of adults with autism later revealed, Hundley’s intuition about the inner experience of autism was surprisingly prescient. The ability to feel not pity, but empathy, to conceptualise her child as ‘just different’ rather than as ‘a nothing’ marked Hundley’s narrative out from many others, as did her engagement with ideas that approached a social model of autism. One of the final sections in her book concerns the shrinking boundaries of ‘normal’ behaviour, and the disastrous consequences of medicalising and even criminalising the behaviour of people with autism and others whom she described as socially awkward, such as individuals with intellectual disabilities (ibid.). However, most parent narratives look not to acceptance of difference but to medical or therapeutic solutions, if not cures. For example, the Christophers told their son Ned’s story with great sensitivity, but also in terms of cures attempted, parent activism and, eventually, institutionalisation. One can contrast a dream they report about their son with Hundley’s above to see the difference:

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In [our] dreams Ned walks toward us. He looks handsome and healthy, as he always does. But when we greet him, he begins to talk, freed of the bonds of his disease; he is free of random movements, free of the confusion and pain that surround him much of the time. In these dreams he grows up and has the pains and pleasures of a normal person; he marries and has kids of his own to dream about and to worry about; he drives a car and has a job and makes his own decisions. But for the most part we confine our dreams to the realities that we can try to affect. The autism committee meets, and we continue our discussion of ideas for a model project: a comprehensive twenty-four-hour-a-day program with a highly trained staff helping a small group of young autistic adults (yes, Ned is an adult, although it is hard for us to think of him as such) to manage their own lives. (Christopher and Christopher, op cit., p. 216)

As Avdi, Griffin and Brough note, most research into the effect of a child’s disability diagnosis on family members relies on the paradigms of ‘loss’ and ‘stress reaction’ (2000b, p. 251). Researchers assume that having a disabled child will be perceived as a loss and/or as a stressful change in the family dynamic. These paradigms are enmeshed with modern ideas of what it is to be a ‘normal’ person. The Christophers (ibid.) conceive of normalcy for their son as encompassing both relief from symptoms that seem to trouble him personally (‘confusion and pain’) and also a remedy for his perceived lack of a normal social and economic role. These ideas coexist with a drive to accept what cannot be changed, to improve services and to advance social inclusion for people with autism, although the parents still cannot quite see their son as ‘an adult.’ These internal narratives don’t come out of nowhere, of course: they arise from parents’ socioeconomic circumstances, the (lack of) help and resources they encounter, the attitudes of others about their child’s disability. As actors on the popular TV show M*A*S*H, the Christophers had financial means and social connections beyond most parents’ dreams. Nevertheless, they still encountered low expectations, lack of inclusive pre-school and school services, and a dearth of adult services that could support their son’s trajectory towards greater independence (Warger, 1986). All parent narratives of autism deal with these paradigms of loss and/or stress, and many also identify quite clearly the effects of the dominant discourse of disability and the specific medical discourse of autism. Some,

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like the narratives of Hundley and Park, respond to this awareness with activism and active rebuttal of stigma; others, like Catherine Maurice’s book Let Me Hear Your Voice (1993), respond by embracing the medical model and seeking a ‘cure.’ These narratives can be as cruel to parents as those that, like Park’s, come without a built-in happy ending. In his memoir of growing up with an autistic sibling, Boy Alone, Karl Taro Greenfeld (2009) devoted an entire section to a sort of ‘dream sequence’ in which he describes his autistic brother Noah having a surprising leap forward in function as an adult: starting to speak, working and even starting a romance. As if to make a comment on the false hope offered by the many cure narratives he must have seen over the years in books, films and articles, Greenfeld then abruptly reveals that this section was a trick intended to shatter the credulity of the reader. Despite trying everything from ABA to special diets, Noah remained severely autistic and, as an adult, was trapped in an underfunded and dangerous care system within which he had been beaten, raped and neglected. Most parent narratives of autism, like the Christophers’ account, express an ambivalent position, with neither the tone of omniscient certainty that pervades so many medical case studies or cure-focused stories nor the abject narrative of loss that the pity-charity discourse of disability might lead one to expect. Avdi, Griffin and Brough found contradictions characterised most parent narratives, with parents ‘holding multiple, ambivalent and often apparently conflicting meanings in their talk’ (ibid., p. 251). One key fact shines through in these narratives: no matter how positive and hard-working parents were, without adequate services and supports they were on their own and overwhelmed. Personal resources could be depleted, for families of means like those of Park, Christopher and Greenfeld, and for others as well. For example, years after the relatively hopeful The Small Outsider was published, when her son was 15, Hundley was forced to admit him to a mental institution because she could no longer handle his aggressive behaviour at home alone (Bell, 1982).

From Parent Activism to Parent-Driven Research There are several significant differences between the clinical accounts of autism introduced in Chap. 4 and parent narratives. The most obvious of these is whose voice is heard. In parent accounts, that voice is usually, but not always, the mother’s, although the words of professionals they have

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seen and those of their children are often also included. It is a rare parent account that gives the child primacy, however. The assumption is almost always that there is something wrong with the child, and the parent must now solve the puzzle or find a way to cope. Another primary difference is where the finger of blame is pointed. Knowing that you are ‘on trial’ for damaging your child is a hideous experience. A person who finds themselves on the receiving end of such accusations has three potential responses: the soul-killing response of accepting blame, the more satisfying response of finding someone or something else to blame, or the highly problematic response of refusing either the diagnosis itself or the baggage that comes with it. Since even now the medical, social care and educational systems constantly tell parents that their autistic child is abnormal and must be fixed or controlled, few parents can allow themselves to accept their children as they are, seeking out and using only those interventions that are ethically sound and respect the child’s innate personhood. The other two paths available diverge in direction, but both begin with the medical model of disability. Autism has been defined by the medical model as pathological, as have been the families of people with autism, and attempts to trouble these definitions have met with strong resistance from the start. For parents, responding to blame has generally meant accepting the medical model’s most basic narrative: the premise that people with autism are abnormal and need to be ‘fixed.’ This dominant discourse, created by combining the specific narrative of autism with the more general narrative of disability, sets up and perpetuates a false dichotomy. The choice it presents is cure or institutionalisation, with the latter equated with a sort of death. As Clara Claiborne Park wrote in a second book detailing her daughter’s journey into adulthood: We could not leave Jessy to her empty serenity. We would not, as was often recommended in those days, institutionalize her ‘for the sake of the other children,’ to spend her days somewhere in a back ward, rocking. We would keep her with us, entice, intrude, enter where we were not wanted or needed. (Park, 2001, p. 10)

In a study of parent narratives of autism posted on the Internet, Amos Fleischmann found a common pattern to the way that some parents cope with a child’s diagnosis of autism. For these parents, autism was seen as a challenge to be overcome and, as she writes, these ‘parents … perceived

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themselves not as victims but, rather, as one parent put it, as “daring mountain climbers”’ (Fleischmann, 2004, p. 35). By placing themselves as heroes rather than villains or victims in their personal narrative, these parents were making an effort to ‘unspoil’ their social identity. The lavishly illustrated book Autism Heroes: Portraits of Families Meeting the Challenge (Firestone, 2007) is one of many that makes the adoption of this heroic role explicit. What the role of self-appointed hero may mean for those they seek to rescue is an open question. Wolf Wolfensberger (1934–2011) put forward a strategy for coping with having a devalued social identity called ‘social role valorisation.’ Its goal is to enhance the image of the devalued person as well as their individual competency, based on the idea that these steps can improve their chances of getting a positive response from the larger society and therefore help them find a valued position in the community (Wolfensberger, 1983). Although Wolfensberger initially aimed his work at helping people with intellectual disabilities themselves, it can be used to describe or guide strategies used by any societally devalued group. For parents who experienced devaluation due to their stigmatised association with autism, ensuing social isolation and also frequently loss of income, one of the few routes towards social role valorisation was becoming a parent-advocate, someone who fights the system. Parent-advocates gain status within the community of parents of children with autism, but being seen as a ‘mother from hell’ elicits negative reactions from authority figures, so this can be a problematic choice. Becoming an effective parent-advocate takes a great deal of time and effort. One needs to learn the language and processes required to obtain a diagnosis and the tactics that unlock access to education and services (Smith-Ying et al., 2022). Once these basic goals are achieved, constant vigilance and stamina are required to make sure services are delivered and to communicate effectively with each new professional and system encountered. The results that parent-advocates get are also coloured by their socioeconomic circumstances, ethnic background and language proficiency. Families from minority ethnic backgrounds are still far less likely to successfully navigate the systems that lead to diagnosis or high-quality education and therapeutic services (Papoudi et al., 2021); in the early days these families were almost invisible in the ranks of parent-advocates. If gaining access to what your child needs requires a fight, not all families enter the

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battlefield equally equipped. For families that in any way do not fit the typical mould—for example disabled parents, families from alternative subcultures or LGBTQ parents—engaging with these systems carries additional baggage (Gibson, 2019; Silverman et al., 2009). For these families, being seen to be an effective (but not ‘aggressive’) parent-advocate or parent-therapist can make the difference between encountering suspicion or even losing your child through social-services investigation, and being accepted as a ‘normal’ parent. Although this was not the case in the 1970s, today many special education systems expect parents to participate in formal decision-making processes alongside teachers and special education professionals; when they disagree with decisions made, parents may have to move towards (reluctant) advocacy (Rossetti et al., 2021). In these formal systems parents are outnumbered by professionals, and only families with greater means can pay for autism experts or lawyers to even the odds. Some therapies that were first applied to autism in the 1970s, such as ABA and the Doman-Delacato/‘patterning’ method, demand up to 40 hours per week of direct, one-to-one work with a child; many others, like TEACCH, also expect strong parental engagement. Unless a family has unlimited means, this work is carried out by parents (usually mothers) in the home; indeed, the clinicians who developed these therapies wanted parents to be those most involved with direct service provision, working under the supervision of professionals. These new therapies presented another route towards social role valorisation, that of parent-therapist. The autism parent-therapist tends to find favour in both the autism parent community and society at large. Visible devotion to one’s child is highly valued almost anywhere, and positive feedback for one’s efforts as a parent-­ therapist is built into the therapeutic system used. Any gains the child makes will be interpreted as an achievement by the parent. A third possible route towards social role valorisation was that of parent-­researcher. This role has actually been crucial to autism research, from the late 1950s forward. Many parents of autistic children become well-known researchers, including Lorna Wing (1928–2014) and Paul Shattock (1945–) in the UK, and Bernard Rimland (1928–2006) in the US. Because mainstream funders were reluctant to do so, a great deal of autism research has also been funded by parent organisations. Parents have had no choice but to engage with the dominant medical discourse of autism in whatever way they could: it targeted them directly, especially in the Bettelheim era, and its impact was felt in every part of

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their lives. For those who chose to pursue or continue careers in medicine, psychology or education, publicly adopting the parent-researcher role could lead to being devalued as professionals by their peers. In a 1967 article, Lorna Wing attempted to address ‘the Bettelheim problem’ without naming names: The recent series of books on autistic children reflect the two kinds of approach. Some of them take a factual and practical approach, viewing autism as it fits into the general picture of childhood handicap. In contrast to this is what might be called the romantic approach, which tries to make a dramatic and entertaining story out of a problem, even if this means playing down or ignoring some of the facts which do not easily fit the aesthetic whole. (Wing, 1967, p. 53)

For Wing and others, their parent-researcher status included laying claim to expertise based on their personal experience rather than in spite of it. ‘I’ve always been a rebel, always said what I thought,’ Wing said in an interview with the author, but she acknowledged that there was pressure from ‘one or two people’ at work to keep her head below the parapet. ‘My daughter was born in 1956 and diagnosed in 1958–1959. When I started back in the early 1960s, apart from a very small group of people, it was all psychoanalytical parent-blaming,’ she added, but ‘most of the people I knew were the people who got together in 1962 to form [the NAS], and they were all “toughies”’ (Wing, L., 2005, personal communication, 25 May). Speaking up and researching were acts that could potentially replace negative stigma, at work and in the community, with a badge of courage. Wing was for many years the professional face of the NAS. She considered herself lucky to have been working at the Institute of Psychiatry (IoP) in London, where a scientific approach was preferred to a psychological one. ‘People like Mike Rutter, the pioneers in those days, they were all scientists but not psychoanalysts,’ she said. ‘There were a couple of psychoanalysts on the staff, but I didn’t think much of them!’ (ibid.). Bernard Rimland, a California research psychologist and parent of an autistic son, played an important role in research on the other side of the Atlantic—particularly in the area of alternative and complementary medicine—and in parent organising as well. In 1956, Rimland and his wife Gloria became the parents of Mark, an autistic child. Based on his close-up observation of autism, Rimland was forced to reject both his own training and Bettelheim’s theories in particular. Like many parents have since then, he began to research on his own.

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‘My concern led me to the library,’ Rimland wrote 30 years later, ‘where I found the works of Leo Kanner … I found the field chaotic; a comprehensive review was needed to pull together what little was known. The level of scholarship was abysmal. Murky psychoanalytic interpretations masqueraded as truth. Authors built incoherent theories on dubious interpretations of isolated events’ (Rimland, 1981). In 1964, he published his findings in the form of a book, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, a seminal collection of autism-related medical research accompanied by an extensive bibliography. In Infantile Autism, Rimland included studies that related to many areas of what he and others had observed about children and adults with autism. Topics that seemed to him to be of particular interest were not psychological but physical, such as reports of possible differences in immune system function, visual processing and biochemistry, as well as physical anomalies that might provide evidence regarding prenatal development (Rimland, 1964). These were clues, not definitive statements as to the aetiology of autism or the best responses to it. But taken as a whole, this set of data from a variety of disciplines created a strong case with which to begin prosecuting prevalent psychological theories. Richard Pollak has described Infantile Autism as a ‘resistance manual’ and Rimland as a ‘guerrilla leader’ (Pollak, 1997, pp. 281–282). It is an apt title for a man whose natural role seems to have been that of professional maverick. Rimland founded the National Society for Autistic Children (NSAC), later renamed the Autism Society of America (ASA), a year after his book was printed, and no doubt his personal characteristics have informed that otherwise mainstream organisation’s openness to alternative approaches. Karl Taro Greenfeld notes that as with the NAS, the ASA had to use sympathetic press contacts to alert prospective members: Rimland even used Life magazine’s reader enquiries section after an article about ABA appeared to ‘seed his first mailing list for the nascent Society of Autistic Children’ (Greenfeld, op cit., p. 66). It was partly Rimland’s willingness to pursue alternatives that kept him outside the mainstream, however. It’s not that he didn’t try to engage with the best-known theorists—Pollak documents a series of approaches made to Bettelheim and rebuffed (Pollak, op cit., pp. 280–281)—but he found a warmer welcome amongst the proponents of the ‘orthomolecular psychiatry’ approach espoused by Linus Pauling, which involved using megadoses of B vitamins and other nutrients. As a result, Rimland’s

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research was poorly funded and haphazard, and did not make its way into well-known medical journals. Parents, however, became his strongest champions: he was one of them, he spoke in a language that they understood and, from his position within what soon became the world’s largest organisation of parents of children with autism, he had their ear. In many ways, Rimland was the father of biological autism research, even though most of his own ideas about appropriate treatment modalities have been disproven. Developmental psychologist Uta Frith, today one of the world’s best-known autism researchers, said ‘the book that impressed me particularly at the time of my PhD was Bernard Rimland’s,’ as it offered ‘suggestions of how psychological experiments could answer some of the deep questions raised by autism.’ Frith, who was after her degree a member of the same research unit at the Institute of Psychiatry as Lorna Wing, added that Rimland’s contribution inspired British researchers like Beate Hermelin, Neil O’Connor and Michael Rutter to take a closer look at autism and to design rigorous experiments that became the foundation for a developmental neuropsychiatry approach to the condition (Frith, U., 2005, personal communication, 5 May). Bettelheim and many others dismissed Rimland’s ideas, however, on the basis that he was the parent of an autistic child and therefore suspect. ‘Other researchers often disregard the parent-researcher as unable to be objective,’ noted Frith, who deplored this attitude (ibid.). Bettelheim devoted several pages of The Empty Fortress to ‘refuting’ Infantile Autism, with particular attention to Rimland’s statements about the lack of evidence for a psychological aetiology. Psychological research and methods should continue to prevail, Bettelheim said, despite the fact that they ‘may turn out to be painful to parents’ (Bettelheim, 1967, p. 404).

Research Progress: Diagnosis and Interventions In the 1960s, there were two major alternatives to psychotherapy-based practices regarding autism: operant conditioning/ABA (then available only in a few clinical settings) and experimental drugs or ECT, as described in the previous chapter. Other practices, such as the Doman-­ Delacato/‘patterning’ method or methods pioneered through Alfred Strauss’s Cove schools for ‘brain-injured children,’ all ‘came from elsewhere’ (Eyal et al., 2010, p. 148). If autism could be conceived of as a form of brain injury, more closely allied with mental retardation or cerebral palsy, the adherents of these therapies felt it could be possible to stimulate

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or redirect the developing brain. Some of these methods suggested that autism was not only biological but could have a sensory-­perceptual component, but still defined it as a ‘disorder’ to be eliminated (ibid.). The development of speech therapy, physical therapy and occupational therapy for persons with physical disabilities and then developmental delay eventually impacted autism as well. One of the first works to specifically discuss therapeutic approaches to the sensory difficulties of autistic children was Sensory Integration and the Child by occupational therapist Jean Ayres (1920–1989.) Published in 1972, Ayres’s work laid the foundations of a school of treatment—sensory integration—that proved helpful to many persons with autism. However, as with many other interventions, it was based more on personal experience and anecdote than systematic research. It also assumed that changing the child was the way to go, rather than changing the uncomfortable environment and adapting methods for teaching and care. In the 1970s, in both the US (with the Education for All Handicapped Children Act in 1975) and the UK (via the Education [Handicapped Children] Act in 1970) all children with disabilities finally gained the right to a state education. This affected more than just school attendance. Parents began using special education law to gain state-funded access to quasi-medical services like physical therapy, occupational therapy, sensory integration, speech therapy, augmentative communication devices and ABA for their autistic children. It was, and has continued to be, an uphill battle. This factor was particularly important for American parents, unique then and now in the Western world in lacking a publicly funded national medical or care system that might provide at least some limited services for disabled children. Gil Eyal and his co-authors (op cit.) note that one social change that has had a key impact on autism was its gradual (and still incomplete) removal from the domain of psychiatry, along with many other developmental conditions, including intellectual disabilities. This would play a crucial role in the rising rate of diagnosis from the 1970s forward. Whilst Bernard Rimland and some others had taken great pains to delineate autism as something separate from intellectual disability, Lorna Wing was calling for the overlap between autism and other conditions to be recognised as early as 1972. As deinstitutionalisation and the normalisation paradigm became the rising trend around other developmental disorders in the 1970s and 1980s, these waves began to lap at the traditional diagnostic and treatment systems around autism as well. If autism was not a

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psychiatric disorder, might not children with autism benefit from services like speech therapy that were now being made available to other disabled children (Eyal, op cit.)? The diagnostic category was relatively fluid, and access to diagnosis and services always had certain geographic biases that permitted cross-fertilisation between ‘fields’ in childhood disability. For example, in the early 1970s autistic children in the Philadelphia area were more likely to encounter the Doman-Delacato method because a facility existed in their vicinity that provided it, whilst a similar child in rural Britain might instead be offered speech therapy, as this was becoming more widely offered through the National Health Service. Indeed, the conjecture that therapies developed for other neurological conditions might also have utility for children with autism came at exactly the right time, as occupational therapy, speech therapy and physical therapy (amongst many other treatment modalities) became more professionalised and increasingly available in school and community settings. It was in the 1970s and 1980s that these professions began to develop practices geared specifically towards autism. A new focus on communication as something that takes place between people rather than a function of individual speech production was one such helpful change in speech therapy (Duchan, 1984). Using tools like the ABA-derived Picture Exchange Communication System (PECS) (Bondy & Frost, 1994) and programmes that stressed pragmatics, such as MacDonald and Carroll’s social partnership model of communication (1992), speech therapists were able to offer practical and effective tools to help children with autism communicate. Today, these services are also available to many autistic adults in the Global North and some in the Global South.

The Importance of Diagnosis One thing that both parents and reputable researchers knew was that until a solid definition of autism was accepted by the medical community, no research results could be seen as reliable. Without this step, accurate and reliable comparison studies could not be set up, and individuals like Bruno Bettelheim could continue to represent patients as ‘autistic’ who were not, resulting in false claims of cures and results that could not be replicated. This process took a surprisingly long time. The first Diagnostic and Statistical Manual of Mental Disorders (DSM) of the American Psychiatric Association (APA), a numbered list of diagnostic criteria that enabled US

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psychiatrists to achieve some agreement on diagnostic categories for billing and other purposes, placed autism as a mere symptom of ‘schizophrenic reaction, childhood type’ in 1952 (Grinker, 2007). Leo Kanner and child psychiatrist Leon Eisenberg (1922–2009) published their own criteria for autism in 1956 as a way of clarifying Kanner’s earlier observations, but their definition was not accepted or widely used during the period of psychotherapy’s ascendency. The first autism prevalence study did not occur until 1966, when epidemiologist Victor Lotter (?–1988) established a baseline against which later prevalence rates have been measured. Lotter found that 4.5 out of 10,000 children between the ages of 8 and 10  in the British county of Middlesex met a relatively strict definition of autism. He used only two major criteria, as set by child psychiatrist Mildred Creak (1898–1993): pathological preoccupation with certain objects and insistence on preservation of sameness (Lotter, 1966). Clinical psychologist Tony Charman (1961–) has noted that if broader, more recent criteria had been used, the rate would have been around 20 out of 10,000 (Charman et al., 2009). However, when the DSM-II was published in 1968, infantile autism still appeared only as a sub-category of childhood schizophrenia. Already this position was under attack, both from the Institute of Psychiatry circle and from others who asserted that childhood schizophrenia was a dubious category that seemed over-applied to children who were quite different from each other (Eyal et al., op cit.). Israel Kolvin (1929–2002) provided the evidence needed to separate autism from schizophrenia in 1971, by demonstrating that those children who indeed were later diagnosed with schizophrenia as adults did not have autistic behaviour as children. It would be Michael Rutter who dealt childhood schizophrenia the final blow, however, declaring in a 1972 conference paper that the diagnosis had ‘outlived its usefulness’ (p. 315). Whilst Bettelheim and many others stuck to their psychological theories despite emerging evidence about neurocognitive differences, Leo Kanner did not. In 1969 he made a public apology to the Autism Society of America for his contribution to the ‘refrigerator mother’ hypothesis (Feinstein, 2010, p. 99). But as Eustacia Colvin, mother of autistic animal behaviour researcher Temple Grandin, notes, ‘Psychiatrists, as a group, didn’t recognise the shift, nor did they apologise for the pain they’d caused. Instead, they stepped quietly aside, allowing the term “infant schizophrenia” to fade discreetly away’ (Cutler, 2004, p. 208).

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In 1971, Leo Kanner became the first editor of the Journal of Autism and Childhood Schizophrenia—later the Journal of Autism and Developmental Disorders (JADD)—which tended to champion developmental, neurocognitive and medical approaches rather than psychotherapy. When Kanner stepped aside in 1974, Michael Rutter and Eric Schopler shared the editor’s seat (Springer, 2012), and this combination of attention to special education as well as clinical perspectives helped the field move forward at a slightly faster pace. Another interesting aspect of JADD was its inclusion of a regular column by two past presidents of the Autism Society of America, both parents, one of whom was Clara Claiborne Park. This placed the parent perspective ever closer to the heart of clinical investigation. A particular landmark in medical research was a twin study by Susan Folstein and Michael Rutter. Published in 1977, it demonstrated that autism almost certainly had a genetic component: in identical twin pairs where one had autism, so did the other twin in 32 per cent of cases, whereas in fraternal twins the number of autistic pairs was 10 per cent. Both rates were far above the typical population distribution, but the high rate of matches amongst identical twins was particularly convincing. However, at that time genetics was still in its infancy, so it took many years to make use of this discovery (see Chap. 10) Also in 1977, the Autism Society of America’s scientific board published its own official definition of autism, but it would be three more years until ‘autistic disorder’ was finally defined in the third edition of the DSM. The DSM-III definition included one criterion that was intended to draw a clear line between autism and schizophrenia (American Psychiatric Association, 1980). The other criteria drew on a concept that had emerged from epidemiological work by Judith Gould and Lorna Wing at the Institute of Psychiatry: the triad of impairments. Gould and Wing had used the Camberwell Register1 to find 914 children out of 35,000 under-15s in this area of South London. From this cohort made up of children who had been in contact with the social, education or health services, they screened 132 children who had severe intellectual disabilities and also had impairment in social behaviour, in verbal and non-verbal language, and/or engaged in repetitive (stereotyped) activities, such as spinning objects. They found that ‘mutism or echolalia, and repetitive stereotyped behaviours were found in almost all the socially impaired children,’ whilst these were rarely seen amongst children with intellectual disabilities who did not also have social impairment (Wing &

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Gould, 1979, p. 11). The triad of impairments in social communication and social behaviour, and presence of repetitive activities, has since become the bedrock of almost all subsequent autism research. It takes reliable diagnostic criteria to create reliable instruments for screening and diagnosis. Once the triad of impairments concept was codified, these began to appear and/or to be further refined. Wing had developed the Handicaps Behaviour and Skills schedule for use in the Camberwell study (National Autistic Society, 2012a), which was the foundation for the later Diagnostic Interview for Social and Communication Disorders (DISCO) (Wing et al., 2002). The DISCO was developed at the Centre for Social and Communication Disorders, which Wing and Gould set up with their colleague Carole Murray under the auspices of the NAS (National Autistic Society, op cit.). Other major diagnostic tools soon included the Childhood Autism Rating Scale (CARS), based on the TEACCH work of Eric Schopler as well as concepts borrowed from Kanner and Creak, and first made available in 1980 (Schopler et al., 1980); the Autism Diagnostic Observation Schedule (ADOS) (Lord et al., 1989) and the Autism Diagnostic Interview (ADI and later a Revised version, the ADI-R) (Le Couteur et al., 1989), both of which Michael Rutter played a part in creating. Often used in combination by researchers and clinicians to improve reliability, these instruments made the diagnostic process less arbitrary. Nevertheless, these measures still relied on subjective measures of behaviour that was judged against an undefined norm. The ADI, for example, involves a clinician asking parents about their child’s behaviour and then rating it according to the following criteria: 0 = ‘Behavior of the type specified in the coding is not present’ 1 = ‘Behavior of the type specified is present in an abnormal form, but not sufficiently severe or frequent to meet the criteria for a 2’ 2 = ‘Definite abnormal behavior’ 3 = ‘Extreme severity of the specified behavior’ 7 = ‘Definite abnormality in the general area of the coding, but not of the type specified’ 8 = ‘Not applicable’ 9 = ‘Not known or asked’

A complex system is then used to decide whether enough ‘abnormal’ behaviour exists in three areas keyed to the triad of impairments to support a diagnosis (Rutter et al., 2003).

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Significant changes were made in 1987 in the DSM-III-R (American Psychiatric Association, 1987) and again when the fully revised DSM-IV was released ten years later. The DSM-IV actually tightened the definition of both ‘autistic disorder’ and the allied ‘pervasive developmental disorders’ group of diagnoses (American Psychiatric Association, 1994), while in 2013 the DSM-V further specified various triad of impairments-linked criteria and cemented the idea of autism as a ‘spectrum’ disorder, removing Asperger’s syndrome as a separate diagnosis (American Psychiatric Association, 2013). Despite the availability of normed tools for diagnosis and agreed guidelines, however, it remains difficult to this day for families who think a child may be on the autism spectrum to access diagnostic services. Wing and Gould’s NAS diagnostic centre, the Centre for Social and Communication Disorders is now known as the Lorna Wing Centre, and today it tends to serve individuals with more complex needs. Run-of-the-mill diagnosis usually takes place in the local community (National Autistic Society, 2012b). The age of typical diagnosis in the Global North has certainly trended younger, with ‘classic’ autism usually recognised by age three or four, and autism without significant developmental delay as early as age seven or eight in many areas. Early diagnosis is closely associated with more pronounced ‘autistic’ behaviour, urban or suburban location, access to regular health care and especially with higher economic status (Mandell et al., 2005; Thomas et al., 2012). However, there is a substantial group of adults, particularly those who have additional conditions or who did not come from a white, middle-­ class family, who either are never diagnosed or receive a diagnosis in adulthood (Brugha et  al., 2011). Diagnosis of girls and women is another problematic area, quite possibly because the diagnostic tools themselves were developed with and tested on mostly male subjects (Navarro-Pardo et al., 2021). There was an assumption since the 1940s that there are far more males than females with autism. Today, it seems more likely that autistic females present differently (Sturrock et al., 2021). Outside of high-income countries in the Global North, diagnosis remains very difficult to obtain, especially in rural areas, for people from marginalised groups and for adults. Well-translated tools are often lacking, as is clinical expertise. World Health Organization-sponsored efforts to improve diagnosis are beginning to change this situation, but there remains much work to be done (Zeidan et al., 2022).

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There is also reason to be concerned with rapid diagnostic increase in countries where adequate services and supports do not exist. As in the UK and US decades ago, it is parents who are shouldering the burden in under-resourced countries like Ethiopia, opening their own schools and day centres, helping each other because reliable state services are not yet available (Befkadu et al., 2022; Tilahun et al., 2016). Commercial entities active in autism services in the Global North can now be seen to be circling, and their methods may be neither culturally appropriate nor affordable. Indeed, as autism as a concept makes inroads into new areas, it brings with it the same ideas about normative development and behaviour that have pathologised autistic people in Europe and the Americas. One can ask if these are a beneficial export or a colonial practice in the field of psychology.

Creating a Behavioural and Cognitive Profile The Institute of Psychiatry (IoP) in London was a hotbed of basic clinical psychology research in the 1960s, and its staff proved to be the most influential group when it comes to modern understandings of behaviour and cognition in autism. Uta Frith started at the IoP as an intern on a behaviour therapy project in 1964 (Bishop, 2008). Michael Rutter (1934–2021) took up a post there the following year, where he soon made his name by challenging John Bowlby’s interpretation of research data on maternal deprivation and childhood problems (UCL Centre for the History of Medicine, 2012). This was a major contribution to the nature versus nurture debate that also encompassed autism. As noted, Lorna Wing was also at the IoP, where she led the Medical Research Council Social Psychiatry Unit and set up the Camberwell Register (Bishop, op cit.). This tool would soon play a crucial role in the epidemiology of autism. Judith Gould was one of several young clinicians who collaborated with Wing. Amidst this heady research environment, Frith soon found that Neil O’Connor (1919–1997) and Beate Hermelin (1919–2006) were carrying out relevant psychology experiments in another part of the Institute (Bishop, op cit.). As Dorothy Bishop writes, Frith: ... freely admits that her own conviction that we should look for brain bases rather than family origins was based more on hunch than on evidence.

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Fortunately, she found herself in an environment where there was sympathy for this hunch, and she was encouraged to do studies of basic perceptual and cognitive processes that might give a clue as to what distinguished these children from others. (ibid., p. 18)

The eventual results of Hermelin and O’Connor’s experiments (1970) lent credence to the idea that children with autism had a cognitive profile unlike that of typically developing children: they were receiving, processing and/or interpreting information differently, and this was due to some difference between the brains of autistic and typical individuals. Despite opposing theories and Frith’s own diversion to research into dyslexia, slow but steady progress was made throughout the 1970s at the IoP and by others influenced by its work. Indeed, Frith’s return to autism research in 1982 included mentoring some of the next generation’s most influential researchers, including Tony Attwood (1952–), Simon Baron-Cohen (1958–) (Bishop, op cit.), and Frances Happé (1967–). The IOP team and their collaborators developed three crucial insights: people with autism often have difficulty with an ability called ‘theory of mind,’ generally have a cognitive style characterised by weak central coherence and may have related difficulties with executive functioning. Theory of mind is crucial for social understanding and communication: it is the ability to understand our own mental states and to use this and other information to predict what might be going on in the minds of others (Baron-Cohen, 1995). People with autism often develop an understanding of complex systems, including predicting the behaviour of others, using their intelligence. However, this process can take longer, and for those also affected by intellectual disabilities, this understanding may be impaired or impossible. Cognitive processing that combines information about details into a useful whole shows strong central coherence, which the superior detail-focus in autism appears to make harder (Frith & Happé, 1994; Shah & Frith, 1993). Executive functioning is the ability to plan appropriately to achieve a desired goal, including being flexible enough to respond quickly to changing situations (Ozonoff et al., 1991). All these cognitive processes are connected, so difficulties or strengths in one area tend to spill over to another. The reason research into autistic cognition was important is that it provided an explanation for many of the areas where function was seen to be atypical. In light of this information, one could understand inflexibility of

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behaviour as a sensible response to problems in knowing what will happen next or perceive difficulty coming up with strategies to cope with change instead of deliberate mulishness. Cognitive research has also revealed areas where people with autism function very well indeed. Both kinds of data can be used to change the way education is delivered and to provide supports that help individuals navigate everyday life with less anxiety. For example, picture-based task schedules use relative strengths in visual processing to help some autistic people know in advance how an activity is structured, and enable them to work through it step-by-step without having to ask for help. Staff working with a person with autism now have a rationale for saying out loud what they are thinking rather than expecting the person to guess. These are relatively simple steps, but as any educator or parent who has tried them will say, they go a long way towards improving communication between people with and without autism. Although many other brain-based conditions went under the microscope, so to speak, with advances in brain imaging and brain tissue analysis in the 1970s and 1980s, this was much less frequently the case with autism. Margaret Bauman and Thomas Kemper’s study, which found ‘abnormalities’ in tissue sections taken from the brain of just one 29-year-old man with autism and seizures, was one article often cited by others as showing that there might be something to pursue (Bauman & Kemper, 1985). Unlike cerebral palsy or epilepsy, however, autism is not associated with a higher rate of early death, so most tissue studies involved accident or suicide victims who happen to have had autism. Autistic children are also difficult to manage in EEG or brain-scanning procedures, and life experiences (such as impoverished educational environments or long-term medication use) may cause brain differences to emerge in adulthood that were not innate. As the following chapters will note, new technologies are permitting a closer look inside the brains and DNA of living people, although questions must be asked about the purpose and use of these forms of data collection. Feuding between educational theories marked the 1980s and 1990s, and has continued. Families for Early Autism Treatment (FEAT), a parent group that advocated for ABA, worked hard to get the word out about ABA in the US through a network of local affiliates, parent pressure and lawsuits. However, school districts tended to opt for either so-called eclectic programmes (which sometimes meant no programme at all) or the less intensive TEACCH model. In response, ABA advocates worked to get

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their method validated as the only ‘evidence-based’ approach to autism in all 50 states, allowing some parents to get coverage for ABA programmes through their health insurance or Medicaid, a Federal health insurance programme managed at state level (Broderick & Rocigno, 2021, p. 78). As mentioned previously, most of the evidence presented was actually single-­child, single-task case studies. Both the TEACCH and ABA approaches have been criticised by outside parties for not providing adequate outcomes data to allow families, school districts and other interested parties to make a clear decision. Rita Jordan (1941–), then head of the first university-level programme set up to train autism-specialist teachers at the University of Birmingham in the UK, was one of several prominent special education experts who questioned the ‘recovery’ claims sometimes made for ABA (Jordan & Jones, 1999). Subsequent research has noted that although appropriate special education and speech therapy have the highest correlation with progression towards independence and optimal function (far more so than any medical or quasi-medical therapies), the evidence base for most educational methods in use is still relatively poor (Parsons et al., 2009). Often it is parental pressure more than science or logic that determines how children with autism are taught or what additional services they receive. That means that the beliefs held by parents, and the amount of social capital they can bring to bear on education and care systems, have a very real impact, as will be further explored in Chap. 8. Today, far more children and adults with autism have been diagnosed than was the case in the 1960s and 1970s, and they are much more visible because they are found in schools and community-based services rather than hidden away at home or in segregated institutions. A number of investigators have found evidence that any seeming increased prevalence of autism between Lotter’s 1966 study and the time of this writing is actually due to improved diagnostic techniques, increased availability of diagnostic services and, perhaps most importantly, ‘diagnostic substitution’ of autism for or in addition to intellectual disability (e.g. Eyal et al., 2010; King & Bearman, 2009). However, the increased rate of diagnosis had an unexpected effect of driving parental and societal worries, eventually leading to vastly increased funding for very specific forms of autism research (see Chap. 10). Deinstitutionalisation and improvements in diagnosis and education also had another unforeseen consequence: autistic adults were finally able to speak for themselves in the debates that previously raged around them,

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but without their direct input. Chapter 9 will show how this development has operated in an arena already marked by conflicts between professional views, and between professionals and parents.

Note 1. The Camberwell Register had been established in 1964 by the Social Psychiatry Research Unit, which was based at the Institute of Psychiatry. It was a data-collection mechanism that made it possible to locate and follow patients over time.

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CHAPTER 8

Parents Behind the Wheel: Danger Ahead?

As shown in Chap. 7, the role of parent-researcher was crucial in autism services and research: indeed, without the commitment of parent-­ researchers like Lorna Wing and Bernard Rimland, it would have taken even longer to break Freudian psychology’s stranglehold on autism, and crucial legislation to open up education for autistic children might have languished for many more years. ‘There is a great advantage in being a parent-researcher: much deeper understanding and passionate involvement,’ said researcher Uta Frith. ‘However,’ she warned, ‘being a parent doesn’t automatically qualify you to be a researcher. They need to be gifted scientists’ (Frith, U., 2005, personal communication, 5 May). Her cautionary statement illustrates a reverse side of the parent-researcher story, one that is rarely addressed. By definition, parent-researchers are parents who have accepted a medical model of autism. Whilst helping their child and others like them is a powerful motivation, social role valorisation is often also part of the picture. This is not necessarily a negative process—when you have been devalued or even demonised, it can be a critical form of self-defence. However, it can drive credulity and overzealousness as well as dedication. This has also been the case for the much larger group of parents who have taken on the role of parent-advocate and/or parent-therapist. While parent-researchers were by definition people with scientific training, usually working in an environment where there were colleagues to compare notes with, and standards about designing experiments, evaluating results © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 M. Waltz, Autism, https://doi.org/10.1007/978-3-031-31015-7_8

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and publicising findings (though not always, as Rimland and a few others worked mostly outside of formal research institutions), parent-advocates and parent-therapists were typically very much on their own. It became common for parents of autistic children to talk about ‘doing their own research,’ coming to conclusions based on half- or misunderstood scientific articles, unable to evaluate the claims and expertise of self-proclaimed experts, and cobbling together theories that they then shared with other parents. Parents talked online about having ‘an experiment of one’ with their child, trying multiple possible interventions in succession or all at once, coming to rapid conclusions and immediately sharing their assumptions. In recent years this has been further complicated by the increased number of ‘predatory’ journals, which have the appearance of providing peer-reviewed research results but are actually pay-to-publish schemes. Parents of autistic children were also operating under a heavy load of stigma and hugely stressed because they were usually without any formal forms of support. In the 1980s and 1990s, for example almost no American parents of autistic children could access reliable full-time education for their child, not to mention after-school care, respite care or formal parent training outside of therapeutic subcultures like ABA, which were hugely expensive. In local parent groups and online, there was frequently a sense of urgency and competition: pressure to be seen to be trying everything possible before the developmental ‘window of opportunity’ closed. As Michelle Dawson, an adult with autism whose criticism of the medical model now informs her own work as a researcher in Canada, has written: Bettelheim’s worst and most enduring crime was to create an extreme: to push the pendulum up so high on one side that after its release it swung with a vengeance to the opposite extreme and stuck there … Once accused by Bettelheim of being the cause of autism, parents are now seen as its heroic and tragic victims. Taking advantage of the leeway society accords to heroes and martyrs-to-a-cause, they have rejected accountability to autistics, and they have taken control of the research and public agendas. A catastrophic view of autism means that any scrutiny of the parents’ claims is not only unlikely, it is assumed to be reprehensible … With the happy and proud collaboration of governments, courts, researchers, service providers, and funding bodies, parents have succeeded in removing autistics from the vicinity of any important discussions or decisions. (Dawson, 2003)

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When parent-researchers, parent-therapists and parent-advocates accept the false cure/death dichotomy set up by the medicalised discourse of autism, they can become complicit in the ‘othering’ of people with autism and the pathologisation of what it means to be autistic. If one accepts the medical model of autism alongside these beliefs about autistic people, it is far too easy to accept that when it comes to treating autism, the ends justify the means. One of the reasons that ABA, allied behaviourist methods and the Doman-Delacato method had such appeal for parents is that they brought parents into the system instead of locking them out. The cost to people with autism was not considered, only whether these therapies could bring autistic children closer to a normalised ideal. This would, not incidentally, minimise stigma attached to their parents. One unspoken problem with parent-run therapy programmes is that when they fail—and they do, in the sense of not achieving a ‘cure,’ although more compliant behaviour or skill improvement may result—it is, again, the parents’ fault. They will be told, or will feel, that they have not carried out enough ‘patterning’ exercises, failed to structure their discrete trials properly, did not start early enough, and so on. Indeed, few parents of children with autism are ever made aware that many behaviourists actually do blame them for their child’s condition, as a belief in development as a direct result of behavioural conditioning, rather than of innate staged processes, is core to behavioural psychology (e.g. see Ribes & Bijou, 1996). Parents can become enmeshed in therapeutic matrices that attempt to provide an explanation for all aspects of their child’s health and behaviour, whether these are based on behaviourism, medication regimes, dietary approaches or a bizarre belief that autism is caused by parasites in the digestive system. Approaches that claim scientific backing have especially strong appeal to parents whose social identity has been systematically devalued, because they gain confidence and power by association with scientists. Approaches that promise ‘normalcy’ at the end are the most valuable of all. Purveyors and adherents of therapies often cohere into subcultures of their own, which at times can be all-encompassing. In a critical article about the rise of psychotherapeutic subcultures, Benjamin Beit-Hallami (1987) identified the criteria that characterise them. ‘The first problem of a new subculture is recruiting members, and the second one is gaining legitimacy’ (p. 479). These processes can be seen in activities like the professionalisation of practitioners, the adoption of ‘brand-names,’ seeking

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coverage in popular media, and development of a shared language, values and practices (ibid.). All these markers can be observed in the therapeutic cultures that have arisen with respect to autism. Within them, particular ideas about autism and people with autism circulate, and specific kinds of power and influence are accumulated and deployed. For example, behaviourists Steve Holburn and Peter Vietze described ABA as a ‘subculture’ or ‘culture,’ and framed the person-centred planning paradigm then being introduced in education and care settings as a clash of cultures with ABA practitioners. It described the ‘developmental disabilities community’ as a ‘market’ for ABA and discussed what behaviourists would need to do to survive in a changed system where clients, rather than practitioners or parents, might themselves call the shots (Holburn & Vietze, 2000). Within the subculture of parents using so-called biomedical approaches (diet, vitamins, supplements and a wide variety of fringe therapies), fortunes have been spent on useless, misinterpreted and sometimes falsified lab tests, special foods and unhelpful treatments. Lack of knowledgeable support from medical professionals and lack of practical help in schools and the community have been prime drivers behind this phenomenon. For example, Lisa Ackerman, founder of The Autism Community in Action (TACA, originally known as Talk About Curing Autism), explained her journey into the ‘biomedical treatments’ subculture after her son’s diagnosis in 1999: Following that fateful visit with the neurologist, we visited many other professionals, including medical doctors, speech pathologists, audiologists, and behaviorists. The list seemed endless. The common message we were given; Autism has no hope, no cure. In fact, the first three medical doctors recommended that my family find ‘institutional placement’ for Jeff who was the ripe old age of 2½ years at the time. Refusing to give up on our son, my husband and I spent hundreds of hours talking to any and all parents of a child diagnosed with autism, reading dozens of recommended books, watching countless hours of educational videos, and of course, surfing the internet constantly. We were determined that our beloved son would grow far beyond his label and that he would have a future that was wonderful and amazing despite his autism diagnosis. Early on, the most important step for us was to GET BUSY. It was up to us, HIS PARENTS, to make a difference for his future. (Ackerman, L, 2022, emphasis in original)

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TACA is just one of many groups that has formed a specific subculture focused on one or more ‘biomedical approaches’ to autism. It links parents with doctors willing to recommend such measures; can match them with a ‘TACA mentor’ (a parent already in the subculture who will explain how ‘biomedical approaches’ are done); suggests labs that claim to investigate blood, urine, stool and hair samples sent in by parents; and suggests approaches to the interpretations these labs provide. It runs a conference where vendors of ‘biomedical’ products can reach parents directly and hooks parents together through a website, Facebook and other social media, and a mobile app. Within this system, parents will be told that children with autism can ‘recover’ by using ‘biomedical approaches’ to address an interlinked ‘cycle’ of virus, bacteria, parasite and fungus overgrowth, leading to oxidative stress, leading to immune dysfunction, leading to methylation defects and on around the circle of interlinked impacts (TACA, 2014). This view of autism constructs autistic people as ‘sick’ rather than as having a neurodevelopmental condition and positions quasi-­ medical treatments as the logical response. In a quick browse through documents linked to TACA’s website in 2023, parents would find recommendations for everything from subcutaneous injections of methylcobalamin (a form of B12) to avoiding amalgam tooth fillings. Some of the linked practitioners and labs have been sued, often successfully, but within this subculture such lawsuits and accusations of ‘quackery’ are seen as evidence that helpful practices are opposed by a large and powerful mainstream medical lobby. Both parents and practitioners can end up identifying so strongly with a method-based subculture that it becomes potentially harmful. For example, TEACCH founder Eric Schopler discussed the cult-like inner workings of Bettelheim’s Orthogenic School in a reflection on completing his student practicum under Bettelheim’s supervision. Describing Bettelheim’s interaction style as ‘autocratic bullying,’ Schopler said, ‘His dramatic ability to involve counsellors emotionally with him promoted their compliance toward him and their bonding with the children’ (Schopler, in Brannigan & Merrens, 1993, pp. 171–185). In a more recent example, the mother of a child who had been enrolled in the Boston Higashi School1 reported that fellow Higashi parents were encouraged to write letters attacking state officials investigating any claims of abuse. ‘It became like a cult for parents,’ she said, after becoming disillusioned when her own son was seriously injured at the school (Armstrong, 2002, p. 1).

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Living Through the ‘Autism Wars’ In the 1980s and 1990s, ABA and TEACCH were the best-known ‘brand-­ name’ approaches. Beyond that, parents of autistic children or less able autistic adults were on their own. Those with means might also seek the services of speech, physical and occupational therapists; those with less means in the US often tried to get these services written into their child’s Individualised Education Plan (IEP). At the same time, they faced extremely negative portrayals of life with autism in medical literature and parent narratives, and in the media, as will be explored later in this chapter. Once parents began connecting through Internet mailing lists and parent organisations, they encountered support, but they also encountered powerful sales pitches. As parent Shannon De Roche Rosa writes: I admit that being exposed to that era’s sensationalistic and negative media messages about autism made me vulnerable to false-hope-based cure hawkers, and that I put my son through ‘treatments’ that were a waste of time and money. I will never stop being ashamed of how, under the guidance of a medical doctor who convinced me and my husband that he could ‘treat’ autism, I subjected my autistic preschooler to a full autism quackery barrage: innumerable supplements and dietary restrictions, pseudoscience ‘electrical field’ treatments, vitamin B12 injections, and even preparation for chelation… (De Roche Rosa, in Kapp, 2020, pp. 155–156)

De Roche Rosa’s experience was a common one, because the very communication channels that had connected parents across geographical boundaries for the first time had also become a feeding ground for rogue doctors, unlicensed ‘diet experts,’ supplement-salespeople and purveyors of gadgets. In many cases parents themselves were part of the marketing plan, either through encouragement to post about products or practitioners in exchange for samples or discounts, or through recruitment into multi-level marketing (MLM) schemes that rely on parent-to-parent sales. Alternative ‘biomedical’ practitioners also dominated the ever-expanding sales floors of parent-focused conferences. Especially in the US, there has long been a significant market for alternative medicine. Some of it is helpful and harmless, such as massage therapy from a trained practitioner for stress-reduction or strained muscles. Some of it is useless and harmful, such as the chelation treatments (purported to remove heavy metals from the body) mentioned by De Roche

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Rosa, which can lead to serious harm and death (James et  al., 2015). Other practices are simply unproven and costly. Many of the practitioners that have poured into the ‘autism market’ were already active in other areas of dubious practice, often claiming to specialise in care for people with diagnoses such as fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis  (CFS/ME), allergies or anti-ageing, all also areas where current medical science comes up short. Chiropractors and naturopaths in many US states have similar legal status to medical doctors, and some used this to claim expertise in autism—an area well outside of their training—thereby gaining new clients. Whatever therapeutic method was in the news, whether it was use of a hyperbaric oxygen chamber or injections of stem cells, one could be sure that someone, somewhere was claiming it was helpful for children with autism. A few of the practitioners involved were ‘true believers,’ convinced that they had stumbled onto a treatment modality that doctors, for some inexplicable reason, did not want you to know about. Most were flat-out quacks and charlatans. The author can offer as an example of the latter an unlicensed ‘dietician’ who advertised her ‘miraculous’ services on the Autism_L mailing list (see Chap. 8) in the 1990s via posts from ‘parents’ that she had actually written herself. Active in forums for anti-ageing medicine under a partner’s name and also marketing to patients with CFS/ME through yet other channels, she certainly was not alone. As with purveyors of behavioural therapies, these practitioners encouraged the creation of alternative treatment subcultures, using the same tools that Beit-Hallami (op cit.) observed in the psychotherapy subculture: ‘professionalisation,’ adoption of ‘brand-names,’ seeking coverage in popular media, and development of a shared language, values and practices. In 1995, a large group of these practitioners and allied companies coalesced under the name Defeat Autism Now! (DAN). Bernard Rimland, who had always had an eye for alternative medicine after his rejection by mainstream psychology and psychiatry, helped hugely to publicise DAN— his endorsement was important, because not only did he have great respect amongst parents for his early research efforts and founding the ASA, but his Autism Research Institute (ARI) had one of the largest mailing lists of autism parents. Families had been drip-fed a steady stream of stories about alternative therapists through ARI’s newsletter over the years. DAN’s origins were with Rimland, Dr Jon Pangborn, who had worked with him to develop a multivitamin formula called SuperNuThera and also ran a lab

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service that claimed to test for deficiencies, and Dr Sidney MacDonald Baker, who was and is highly active in promoting ‘detoxification’ approaches to allergies and so-called environmental disorders. DAN generated a bizarre ‘treatment protocol,’ an annual conference that was heavily marketed to parents, and good incomes for many of the alternative practitioners involved. It circulated a list of so-called DAN Doctors, who promised its approaches would ‘recover’ autistic children. It also gave someone who was then a mainstream medical doctor in the UK, Andrew Wakefield, his entry point into the autism marketplace in the US. Wakefield’s now-discredited research linking the measles/mumps/ rubella (MMR) vaccine with autism and gastrointestinal disorders (Wakefield et al., 1998) has since become one of the best-known studies in the field, for all the wrong reasons. Wakefield’s work was championed by parent groups and spread widely through Internet mailing lists; he still has many supporters despite retraction of his 1998 study by the Lancet over significant concerns about research ethics, conflict of interest and falsification of data (Godlee et al., 2011). The author was present at Wakefield’s initial address to the first Defeat Autism Now! Conference in the US, and so had a ringside seat to see how his message was delivered and received. Wakefield began by laying claim to expertise through his affiliation with a well-known research hospital in the UK. Next, he encouraged attendees to view autism as a disease state by showing slides of ‘abnormal’ gut membranes of children whose cases he had handled—lay members of the audience would not have been able to interpret the meaning of these rather murky slides, but Wakefield helpfully provided his own explanation, claiming he had identified a ‘new’ gut pathology linked to autism. He then linked this pathology to childhood vaccination. The rest is, unfortunately, history. Wakefield and his DAN compatriots took their message directly to parents and offered ‘biomedical treatments’ that purported to address the problems they claimed caused autism. Buoyed by the support of celebrities like Jenny McCarthy, though derided by scientists, these media-savvy practitioners tapped into the pervasive cure-or-catastrophe model of autism. It was a response, if a misguided and dangerous one, to the lack of hope, options and support experienced by the families of autistic children in mainstream medicine and social care. And for years it went from strength to strength: the 2012 version of AutismOne, a combined conference with McCarthy’s organisation Generation Rescue, was advertised under the slogan ‘Our Children Get Better.’ It included presentations from Andrew

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Wakefield and Dr Jeffrey Bradstreet on ‘Environmentally influenced immune-behaviour-cognitive dysfunction’ and ‘Taking therapies to the next level,’ and four and a half full days of presentations on alternative health practices, special education law and more (AutismOne, 2012). Its 2022 conference included a massive slate of sessions on topics ranging from a talk on vitamin D and autism to anti-vax speaker Del Bigtree (AutismOne, 2022). The words ‘do your own research’ now have associations that are familiar far beyond the world of autism. The ‘Autism Wars’ created a groundswell of anti-establishment, anti-mainstream-medical feeling among parents, reflected in media coverage of such views and dropping immunisation rates (Motta & Stecula, 2021), and in higher than ever use of ‘alternative’ therapies. There is a direct line between the way parents of autistic children faced with a lack of mainstream options for education and care were instead met with anti-vaccination propaganda and pro-DIYmedicine sales pitches, and the anti-science pronouncements (and in some cases, violence) that troubled many countries during the international medical and societal crisis caused by the Covid-19 pandemic. That’s because parent-­ focused anti-vaccine websites like The Age of Autism (founded in 2007 by the late Dan Olmstead) and rogue practitioners like Wakefield have been purveying a conspiratorial world view that demonised organisations like the World Health Organization and the US Centers for Disease Control for years, reaching and politicising a wide audience. It should surprise no one that the same voices that claimed autism as a disease state that doctors inexplicably didn’t want to cure are prominent amongst those raised to call Covid a scam. Both Wakefield and The Age of Autism continued to pump out Covid-denial stories and false tales of ‘Sudden Adult Death Syndrome’ as this book went to press (as documented by, for example, Berezow, 2020). Indeed, the antiparasitic preparation ivermectin had been marketed to parents of autistic children for years before people convinced that Covid vaccination is a death-plot by ‘Big Pharma’ began ingesting it en masse (e.g. Lloyd-Thomas, 2014). It was just one more item on the list of ‘biomedical treatments,’ along with administration of the gastrointestinal hormone secretin, chelation and the off-label use of chemical-castration drug Lupron. The latter was a particularly egregious case, in which a father-and-son team touted a testosterone-suppressant drug used for chemical castration as a treatment for autism (Tsouderos, 2009). Although Dr Mark Geier’s medical licence was eventually challenged and suspended in all US states,

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it took two years from when the story first broke in media for that process to even begin (Mills & Callahan, 2011). In the meantime, and since, the Geiers and others selling similarly untested and questionable treatments have been feted at events like the AutismOne conference in the US, and many have amassed a huge personal fortune by preying on desperate parents. Whether the treatments suggested to parents are alternative or mainstream, the message from society still seems to be that autism is aberrant and therefore must be eradicated if possible. Countering this is not an easy task: Deaf people have experienced the same issues due to the development of cochlear implants and ensuing pressure on parents of hearing-­impaired children to have them fitted, which many Deaf people feel denigrates their own (sign) language and cultural forms of creativity and communication (Spencer & Marschark, 2003). Today, autistic people and their families in the Global North, and increasingly in the Global South as well, are up against neoliberal economies that take a ‘market-based’ approach to service provision. Public services everywhere are being slashed, and human rights have little bearing on access to markets or what markets may offer. In the Global South, where public services have often never been available, the ‘biomedical treatment’ approach continues to grow even as many parents in the Global North have realised that it offers false hope. ‘Treatments’ like bleach enemas and dietary supplements are affordable, and documents like the DAN Protocol live on in websites catering to families in places like the Philippines, Indonesia and South Africa. Here, the sales pitch that ‘it comes from America’ can also be a powerful persuader. In many countries, government involvement is moving towards only providing limited financial support for the poorest, who are expected to choose from the few options made available to them in education, support and health care—and in autism, the focus on curing rather than living well with autism has from 1943 forward meant that options are in short supply. In education as well as health care, there is a push for ‘evidence-based practice,’ and the evidence sought is for normalising not the presence of disabled people in the wider world, as Wolf Wolfensberger pushed for decades ago, but for applying interventions that will somehow make disabled people themselves more normal. Families are now encouraged to see autism as a personal tragedy that can and must be overcome, largely through their own efforts. Their disabled child is a product to be improved and presented to the marketplace

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through interventions that shape him or her to fit available roles; their duty is to make him, in the term often used in the discourse of ABA, ‘indistinguishable from his peers.’ This drives parents to resort to desperate measures. Through these practices, the family home becomes a new form of institution, with parents the unpaid therapeutic workforce and autism a set of undesirable characteristics that may prevent their child (and by extension, the parents themselves) from realising their full productive potential. Parents who resist this directive may be seen as suspect or even as abusive; people who have autism and are not cured are portrayed as a drain on the public purse (Ganz, 2007; Knapp et  al., 2009), a further reason to pursue cure or prevention at any cost. As Broderick and Roscigno have written, ‘It is difficult to escape the consumption of (a) autism itself as commodified and circulated in media and popular culture, and (b) its corollary interventionist cultural logic’ (2021, p. 79.)

Autism in the Media If the autism therapy and ‘biomedical treatment’ subcultures just described were in part a reaction to lack of help and support for stressed families, they were also driven by a drumbeat of highly negative portrayals of autism over the previous decades. These could already be observed in the original medical case studies, but professional literature was not reading material for typical parents. Mass media images and texts were, and remain, the most typical introduction to autism for non-professionals. One clear lesson from the social model of disability is that while impairment is a physical fact, disablement is bound up in the everyday attitudes and actions of non-disabled people, societies and governments. Culture plays a key role in attitude formation and in the social construction of both ‘disability’ generally and specific disability categories such as autism. Indeed, the figure of autism, if not its lived reality, has proved irresistible to fiction writers, filmmakers and television producers. At times these portrayals have been closely bound up in the social history of autism, creating or reflecting certain images of and ideas about people with autism, increasing awareness of autism, and encouraging or discouraging various responses to autism. No examination of autism in our heavily mediated society would be complete without considering the impact of film, television and other media images, such as online content and advertising.

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Melissa Bee, an adult with autism who ran an online support site, wrote a very useful overview of autism in film over 20 years ago. She accused the media of misrepresenting autism in directly harmful ways. ‘How autism is seen in the media and on film is very important in how the autistic population as a whole is viewed, understood and treated by lay persons and professionals alike,’ she said, noting that film portrayals had so far exhibited characters with autism as ‘mentally defective, abnormal … freaks, rejected by their families, sent away as children to institutions of some kind and with an obvious lack of care, love and respect afforded normal human beings’ (Bee, 2000). What Bee said of films can be extended to many past representations of autism in popular video and print media as well. In addition, recent years have seen the arrival of a new, fearful set of representations, where people with autism are presented as actively evil and monstrous, or are linked with evil forces in some way. These practices tie representations of people with autism to representations of others with disabilities. As Leonard Kriegel suggests: The world of the crippled and disabled is strange and dark, and it is held up to judgment by those who live in fear of it. The cripple is the creature who has been deprived of his ability to create a self … He is the other, if for no other reason than that only by being the other will he be allowed to presume upon the society of the ‘normals.’ He must accept definition from outside the boundaries of his own existence. (Kriegel, in Gartner & Joe, 1987, p. 33)

A good case can be made that the character of Benjy in William Faulkner’s The Sound and the Fury (1929) was the first to embody autism in a fictional narrative, but of course, it predates Kanner’s terminology. Benjy’s way of perceiving the world meshes closely with that expressed by adults with autism, in that he pays closer attention to detail than the big picture, is overwhelmed by competing sensory information, finds it difficult to understand the articulations of others and finds it almost impossible to articulate for himself. In some ways, however, this is a far more sensitive portrayal than many that would come after. Far from presenting Benjy’s tale as ‘signifying nothing’ as the Shakespeare-derived title nods to, Jenny Kendrick writes, ‘In its construction of Benjy, Faulkner’s novel gives a character with learning difficulties an equal opportunity to present a view, to be a focaliser, to have a voice and with it, to give, and have, significance’ (Kendrick, 2004).

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This was an unusual approach: more typically, characters with autism have significance in the plot of popular print and film media only as they relate to non-disabled characters. They may act as a foil for the improvement of the non-disabled individual or function as the hinge of a plot about something quite other than the life of the person with autism. The earliest example the author has found of the use of autism as a named disability in fiction—named as ‘childhood schizophrenia,’ the term then used interchangeably with autism—is the character of Manfred Steiner in Philip K.  Dick’s Martian Time-Slip (1964), which is another exception to this rule. Dick’s oeuvre often deals with characters who trouble the boundaries of what it means to be ‘normal,’ quite probably because he had experienced unusual mental states himself (Dick was diagnosed as schizophrenic and had a number of visionary or psychotic events over the course of his life.) In Martian Time-Slip, Manfred Steiner,  an autistic child, has been tagged for state-mandated death, but others suspect the child has untapped paranormal powers and try to communicate with him through a machine. Through the person of Steiner, Dick explores what it means to be ‘a person who could not live out the drives implanted in him by his society,’ unable to fully access ‘the reality of interpersonal living, of life in a given culture with given values’ (Dick, 1964, p. 64). It is clear that this is a status the author is familiar with and sympathetic to. More typical of this time, and of many novels in subsequent decades, is An Act of Loving (Russell, 1967). This book, which fits well within the popular ‘family saga’ or ‘domestic drama’ genre, describes the difficulties involved in trying to care for a severely autistic child. In the end, the father shoots his wife and son and turns himself in to the police. Not only the child with autism but his mother were seen as worthy of death, in keeping with theories about causation prevalent at the time. Death (or institutionalisation, which with its connotation of permanent removal from everyday human affairs was painted as analogous to death) is frequently the end for characters with disabilities in fiction. This is also true for fictional characters with autism, even though the condition does not shorten the lifespan. For example, the novel Family Pictures by Sue Miller (1990) covers the life of a family that includes a child with autism. Much of the action revolves around the difficulty of caring for the child, with narratives from the perspective of several different family members but never from that of the child himself. Eventually he is institutionalised, then dies—after which his mother shouts, ‘I’m free!’ and his sister finally finds marital fulfilment. Brenda Daly (1992) has written that the real topic

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of Family Pictures is mother–daughter conflict and the effects of patriarchy on family relationships, without acknowledging the impact of portraying the allegedly central character of Russell as an agencyless cardboard cut-­ out around which the mother–daughter drama revolves. Disability studies researcher Paul Darke found that film plots concerning disability almost always reduce it to a personal tragedy and try to wrap up with an easy solution to the problem at hand. ‘The better world in disability films is when we, in the world of film fictions, die peacefully and quietly or are taken on by dedicated individuals: saintly nurse like figures usually,’ he said. ‘Poverty and humiliation are nowhere to be seen, the true characteristics or social status of disabled people is ignored to provide cheap and cheerful fun for the able-bodied audience’ (Darke, 1995). Much the same can be said for mainstream novels that deal with autism, with few exceptions. That said, on any list of novels that include characters with autism, science fiction and speculative fiction titles would predominate. Many of these employ characters with autism as a way to explore ideas about humanness, much as other authors might use robots, cyborgs, androids or aliens. If, as Keith Piper (2001) has written, ‘the android’s concealed mechanical body makes it a metaphor for the other, able to masquerade as a member of the dominant norm … [it] can thus be seen as activating metaphorical anxieties about such spectres as the infiltrator, the fifth columnist, the “red under the bed,” the closet-dwelling sexual other, the “international Jew,” and the “white nigger”,’ people with autism cut an even more troubling figure in narratives exploring the boundaries of humanness. They have been represented as ‘not quite human’ in quasi-­ medical narratives like ‘Joey the Mechanical Boy’ (Bettelheim, 1967), but unlike the ‘human-like’ android, which can at least be revealed as a manufactured creation, characters with autism are ‘inhuman’ only in the sense of being defined as such by dominant notions of normalcy—and such portrayals can themselves act to cement these notions. Not all such characters may be intended purely as metaphor, of course. Just as depictions of cyborgs, androids and robots in print and film fictions also address our uneasy relationships with the machines and computerised systems that share our planet, these depictions of autism may at times be explorations of our uneasy relationship with people who have autism or other neurological differences. Other writers are responding to interests rooted in their own lives, as even in science fiction many novels have autobiographical elements. It is

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apparent that there is a high prevalence of autism among the most vocal fans of science fiction, and this is one fiction genre where fans and writers are frequently the same people. For example, many science fiction conventions now include Asperger syndrome/autism panels alongside panels for women and people of colour. These panels act as forums for education and discussion of topics important to subgroups within ‘fannish’ culture. At science fiction conventions, part of their purpose is also discussion of science fiction depictions of autism. It should not be surprising, therefore, that if one is in search of characters who have both autism and agency, science fiction offers an array of choices that bypass the usual literary clichés of disability-as-abjection and disability-as-metaphor. One book that exemplifies the representation of autism in this genre is Elizabeth Moon’s The Speed of Dark (2002). Moon, the mother of an autistic child, writes from the point of view of Lou Arrendale, an adult with autism whose skill at pattern recognition has led to a job that he enjoys. In fact, his whole department at work is made up of people on the autism spectrum. When a new supervisor arrives who insists that they must all accept a ‘cure,’ Arrendale is forced to make a dangerous decision. Moon deals directly with the dilemmas posed by difference in a conformist society and the social construction of disability. Arrendale’s narrative can be compared with narratives in feminist fiction that trouble patriarchal assumptions by asserting a threatening tendency towards self-­ awareness and potential opposition despite outward acceptance of social norms. For example, Arrendale thinks while waiting to be evaluated by the company psychiatrist that ‘everything that in my life that I value has been gained at the cost of not saying what I really think and saying what they want me to say’ (Moon, 2002, p. 1). He later acts on this knowledge in ways that surprise those in power. Even representations of autism in low-budget ‘genre’ novels, such as several books in the Star Trek novelisation series, usually manage to escape from the storylines that theorists like Kriegel would lead one to expect. Some novels link autism with troubling ‘special’ powers and/or evil. This strain could be traced back to Dick’s Martian Time-Slip, if not for the way that all of his characters tend to be troubled by notions of reality and unreality. One is never sure if unusual perceptions in a Dick novel are being discussed as something unique to the character who evinces them or something that all humans could tap into if they removed their blinders. Doris Lessing’s The Fifth Child (1988) and its sequel Ben, in the World

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(2000) portray the malign influence on a ‘perfect’ family of a changeling-­ like autistic child and his life as a rejected, animal-like homeless man who eventually commits suicide to evade abuse in strange medical experiments. In lighter fictions like Kathryn Lasky’s Home Free (1985), links are made between autism and magical abilities, such as time travel, with the requisite magical ‘cure’ at the end. Stephen King’s The Regulators (written under the pseudonym Richard Bachman) is more problematic. In this tale, an autistic boy, Seth, becomes the conduit for an evil presence that makes video nasties come true on his suburban street. It’s full of statements like the following: ‘That’s the hell of autism, isn’t it? You always wonder, you never really know, they’re broadcasting but God hooked them up with a scrambler’ (Bachman, 1996, p. 88). The child kills his entire family before the first hundred pages are through, and the situation only gets worse from there. One popular novel from outside the science fiction genre counters this trend: Mark Haddon’s The Curious Incident of the Dog in the Night Time (2003) has a narrator whose features many readers have identified as those of Asperger syndrome, Christopher Boone. Haddon, who had worked with disabled children before starting his writing career, has said that he identifies strongly with the narrator: I think [Christopher Boone] mirrors the position of a writer, of me, because I think most writers feel like they’re on the outside looking in much of the time. But we all feel that sometimes. All of us feel, to a certain extent, alienated from the stuff going on around us. And all of us at some point, rather like Christopher, have chaos entering our lives. We have these limited strategies we desperately use to try to put our lives back in order. So although in some senses he’s a very odd and alien character, his situation is not that far removed from situations we’ve all been in at one time or another. (Haddon, in Welch, 2003)

Boone is an intriguing and sympathetic character, perhaps because Haddon’s intent was to capture the universality of feeling alienated and apart from the world rather than painting a portrait of someone who is wholly ‘other.’ It is rare and notable for an author to point directly to ways that the experiences of people with autism are fundamentally similar to those of others. Much more recently there have been several depictions of autism in popular fiction that capitalise on the cultural fascination with the condition

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in a way that more closely approximates the ‘neurodiversity’ discourse. The best-seller The Rosie Project (Simsion, 2013) and its 2015 and 2019 sequels by Australian author Graeme Simsion exemplify this trend. Simsion’s protagonist Don starts out as an eccentric genetics professor using odd methods in his search of true love. Don’s story continues in subsequent books through marriage and parenthood, where he continues to be unusual but, importantly, functional, kind and funny. When publicising the third instalment of the series, Simsion told a reporter that in his view, ‘autism is another legitimate way of being, with its own strengths and weaknesses that we all have. It’s a difference, not a disease’ (Bulsiewicz, 2019). Even more recently, a few fictional portrayals of women with autism have begun to appear, as in Simsion’s final book and in Talia Hibbert’s Get a Life, Chloe Brown (2020). Seemingly positive portrayals may end up having a cultural impact in the same way their negative precursors did. However, popular authors also tend to deliver stereotypes, which can be a problem if the general reading public takes them to be representative of reality. As an autistic book reviewer has written about Simsion’s series: The protagonist, Don, is cut from the same cloth as Hugh Dancy’s Adam in the eponymous film, Sheldon from The Big Bang Theory and the protagonists of The Good Doctor and Atypical. All portray clueless, quirky white male geniuses to represent autism. … Personally, I would like portrayals of autism in fiction to be considerably less special. I want portrayals of autistic people who are neither exceptionally gifted savants nor human maelstroms who destroy their families’ lives. I want to read about autistic characters who are as nuanced and complex as all people are. (Luterman, 2019, n.p.)

In their extensive study of British television, Images of Disability on Television (1992), Guy Cumberbatch and Ralph Negrine summed up their findings as follows: ‘The portrayal of characters with disabilities in feature films tends to be through stereotypes, and that the most commonly used stereotypes are the disabled person as a criminal or only barely human or someone who is powerless and pathetic’ (p.  137). In addition, Haffter (1968) emphasised the long-standing use of intellectual disability and autistic-like behaviour as verbal and visual shorthand for evil and demonic influences in TV and film, alleging that it is a holdover of the changeling myths discussed in Chap. 2. As regards autistic characteristics specifically, a light-hearted article on 23 top horror-film bogeymen in Empire magazine

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revealed that 21 per cent are mute, with few of these portrayed as actually deaf (Richards, 2002). Film representations of autism have not strayed far from the strictures described by Cumberbatch and Negrine. From the 1969 Elvis vehicle A Change of Habit (Graham, 1969) on forwards, the ‘miracle cure’ narrative has often taken centre stage in films about autism. Any number of curative technologies have been applied on-screen, from the love of an animal in Run Wild, Run Free (Sarafian, 1969) to the incomprehensible primal scream breakthrough experience in The Who’s Tommy (Russell, 1975, based on the group’s 1969 concept album). Methods are frequently shown on film—the ‘rage reduction therapy’ sessions in A Change of Habit feature ‘Z-Process’ creator Robert Zaslow playing himself and are particularly cringe-making—and in most cases aetiology is expressed in Bettelheimesque terms. The protagonist of Tommy, for example, becomes ‘deaf, blind and dumb’ after witnessing a murder (Pete Townshend, who composed the original rock opera, has made it clear in interviews that the plotline for Tommy was inspired by a relative’s autism and his own experiences of childhood sexual abuse—e.g. see Resnicoff, 1989). The ‘miracle cure’ narrative in films about people with autism certainly did not diminish greatly over the years. As Melissa Bee (2000) noted, films like House of Cards (1993) and Molly (1999) continued to be made that portray autism as a condition that can be completely cured with the right intervention. The Dustin Hoffman/Tom Cruise film Rain Man played a major part in the greater media attention and public awareness given to autism from the late 1980s onwards. Released in 1988, Rain Man was the fictional story of a spendthrift yuppie’s discovery of an institutionalised, autistic savant older brother who stood between him and his inheritance, and eventually of his own capacity for brotherly love. Hoffman’s sensitive portrayal of an autistic adult was based on painstaking research. Rain Man stands in stark contrast to previous film representations of people with autism, although it has had both negative and positive effects. As researcher Stuart Murray said in a Radio 4 interview: Rain Man established several themes that became central to subsequent representations of autism. Firstly, autistic characters are frequently paired with neurotypical characters who are in some way troubled, isolated or eccentric, and the space between the two becomes one in which an idea of what it means to be human is then explored. (Murray, 4 October 2004)

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This is similar to the use of autism in mainstream fiction narratives like Family Pictures, mentioned earlier, or Dean Koontz’s 2002 thriller, By the Light of the Moon. Many Hollywood narratives of autism that are not about miracle cures depict people with autism who have savant skills, such as Raymond Babbitt’s prodigious calculating abilities in Rain Man. In actuality, while such skills are more common in people with autism than in the general population, they do not characterise them as a whole. ‘More than anything in such plots, the autistic character is used as a narrative device, as a way of solving a riddle or pointing to a problem,’ says Murray. ‘What comes over time and time again is the desired humanising presence of the autistic figures: it is the antisocial and egocentric Tom Cruise character in Rain Man and the renegade Bruce Willis in Mercury Rising who learn and are changed by their encounter with autistic difference’ (op cit.). In these narratives, once the problem of the non-autistic character has been solved, the autistic character can be disposed of. In Rain Man, for example, the trajectory of the story is ultimately the moral development of Raymond’s neurotypical brother Charlie. One could legitimately argue that in many ways Charlie is more ‘autistic’ in the metaphorical sense than Raymond. But once Charlie has broken through his own extreme self-­ centredness, Raymond himself returns to the institution. It is implied that there is now a connection between the brothers and Charlie will visit now and then—this is not quite the institutionalisation-as-death ending. But Raymond’s potential life as a full human being with agency in the outside world has certainly come to an end. Typically, films that have autism as a central subject take their cue from either medical or parent narratives, sometimes literally. Rain Man is significant due to the involvement of adults with autism themselves, although their participation occurred through the mediation of parents. Bernard Rimland acted as a technical advisor on the film, and his son Mark Rimland was one of three autistic adults who acted as models for Dustin Hoffman’s performance. Unfortunately for people with autism, Hoffman’s Raymond Babbitt has become the image of autism that most other people know best. Many now assume that all people with autism have savant skills and/or intellectual disabilities, and that most live in institutions. As Bee (2000) put it, ‘even Bernard Rimland in later years remarked that to be believable on the big screen he had to amalgamate all the worst possible features of three

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people to make Raymond, but people still believe that Raymond reflects what autism really is.’ Another trend has been placing autism in a horror context. The first of these employed an indirect connection: in Exorcist II: The Heretic (1977), the formerly possessed Regan uses telepathy to ‘cure’ an autistic child, possibly by calling out demons. Later examples are more direct. In Bless the Child (2000), an autistic girl abandoned by her drug-addict mother has special powers that put her in touch with divine forces. When her mother and a cult-leader boyfriend return to claim her, she becomes the focus of a fight between good and evil. The made-for-TV movie Rose Red (2002), based on a Stephen King story, portrays a young woman with autism as being psychic and capable of telekinesis, leaving her open to evil forces in a haunted house. In other horror films, such as Relative Fear (1994), people with autism are shown as strange, evil and murderous (in this particular film, a plot twist at the end reveals that the autistic child is not the real killer, but this follows well over an hour of leading the audience down that path). These films, like the spate of horror novels that take a similar narrative journey, are an expression of a more general societal unease about autism. Whilst people with behaviours we now associate with autism have been ‘othered’ from the very beginning of discourses about difference, it is only in the last few decades that the condition has been described as an epidemic: a spreading disease to be feared, a disease that ‘steals’ children away as fairies or demons were once believed to do. The fear engendered by these representations may well be taking corporeal shape on the horror-­ film screen, much in the way that, according to Susan Sontag (2001), fear of HIV/AIDS has been expressed in several horror-film narratives. A few films have attempted to take an autistic viewpoint or to present sympathetic and realistic characters with autism. The eponymous Temple Grandin (2010) brought the autistic animal scientist’s story to television screens, Snow Cake (2006) presented Sigourney Weaver as a grieving autistic parent and Mozart and the Whale (2005), a love story about two adults with Asperger syndrome (based on real-life couple Jerry and Mary Newport), mixed humour with a bit of drama. Star Josh Hartnett has said that he attended support groups for adults with autism as part of his preparation for the role. The film’s tagline—‘They don’t fit in. Except together.’—suggests the film’s direction. Jerry Newport, who had some involvement in the film during production, says he is pleased with the result:

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From what I have seen, [they] have performed a miracle in bringing to the screen what goes on inside anyone who has Asperger Syndrome or whose autism is high functioning enough for them to be part of an adult group. After one scene, when I visited the location, I was tempted to say to the director, Peter Naess, ‘I think we need to adjust the cast’s medication.’ I knew they were actors but they made me feel at home. (Newport, 2004)

Newport credits Rain Man with starting his own investigation of Asperger syndrome, which eventually led to diagnosis and increased self-­ understanding (ibid.). How people with autism receive and interpret representations of autism, whether on film or in other media, is a worthy subject for further investigation. So far, the most positive and yet realistic representations of autism may have been two short documentaries produced for the BBC, ‘My Family and Autism’ (2003) and ‘My Autism and Me’ (2011). In the words of its narrator, teenager Luke Jackson, who has Asperger syndrome, the first film’s message is that ‘other people may consider me—and other people with AS—disabled in some way, but to me Asperger’s Syndrome is a gift. I am very proud to be who I am. Always remember that difference is cool’ (Jackson, 2003). In the second, a very engaging young autistic presenter, Rosie King, introduces viewers to the lives of herself and her more severely affected brother. These documentaries have been widely acknowledged by people with autism as sensitive, honest and educational, but these are not necessarily the attributes film-goers look for when choosing entertainment at the neighbourhood cineplex. In 1995, Lennard Davis wrote that ‘the cinematic experience, far from including disabilities in an ancillary way, is powerfully arranged around the management and deployment of disabled and “normal” bodies’ (p. 153). Over the past 40 years, the bodies of people with autism have frequently been deployed in this fashion, but the amount and type of these representations has varied. It seems that autism has had two ‘moments’ on the fictional-media stage: one in the late 1960s, when it was also being employed by pop psychologists, and one that began in the late 1980s with Rain Man and that has continued up to the time of this writing, with more nuanced and hopeful portrayals like that of autistic teenager Sam Gardner on Atypical (Netflix, 2017–2021). One must ask, why the interest in autism now? In the online journal Literary Kicks, Levi Asher (2005) muses that ‘autism might be the metaphor for our new millennium, or at least our

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new millennium’s first decade.’ In an essay that brings Sontag’s writing on AIDS as the metaphor that characterised social anxieties in the 1980s to bear on Mark Haddon’s novel, he adds: The autistic response is a response many of us have used in certain situations. Block out the intruder. Strangers are dangerous. Touch is bad. Change is scary. Barriers are important. Mysterious forces control us, and only our routines and our rituals keep us safe. (Asher, op cit.)

This idea of autism as a metaphor for an increasingly fragmented, disconnected and dissociative society is interesting, but it is also based on a poor understanding of autism as it is actually experienced. As Asher and those who commented on his Literary Kicks piece noted, however, it’s a metaphor that is in increasing use: neologisms that refer to it include ‘post-­ autistic economics’ and ‘momentary autism,’ both of which have entered the wider discourse in recent years. However, this use of autism as a metaphor is actually just a return to the work of Erich Fromm and others who spoke of modern, technological society in terms of ‘schizophrenia’ or ‘autism’ many decades ago. Another writer, Harvey Blume of MIT, suggested a different reason for pop culture’s recent romance with autism: Certainly it is in the nature of media to fasten on, churn through, and exploit difference today, on Oprah (or The X-Files) as once upon a time in the live extravaganza produced by P.T. Barnum. But I submit there is more to it than media gluttony. The media is stuck on autism because of the zeitgeist. And the zeitgeist, in turn, at least for now, seems never to stray too far from the Internet … the mental processes of autistics can stand in as symbols of the associative hyper-linking graphic chaos of the World Wide Web. (Blume, 2004)

Blume went on to consider the possibility that these representations are actually closely related to representations of cyborgs, but with the difference that they suggest human beings are themselves changing to meet new technologies. We aren’t being rewired per se, we are perhaps discovering that some of us are already differently wired, and coming to value that difference—or being frightened or intrigued by these newly revealed differences, as the case may be. Some might argue that these narratives of autism are only fiction, after all, and deserve little serious attention. Leaving aside the many questions

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that have been asked in previous chapters about the ‘truthfulness’ of medicalised accounts of autism and even of mediated first-person accounts, this kind of dismissal is problematic. Maria Truchan-Tataryn (2003) has argued that like the representations of Asians and Arabs explored in Edward Said’s Orientalism (1979), fictional portrayals ‘slip out of imaginary discourse to shape the perception and reception of real individuals with disabilities and, in turn, translate into policy which further defines and confines lives and lifestyles’ (Truchan-Tataryn, op cit., p. 207). For most people, autism becomes ‘storied’ and understood through its depiction in popular culture, not through the pages of medical texts, parent narratives or websites like thinkingautismguide.com. For example, in an examination of how Hollywood depictions of the Vietnam War produced certain ‘truths,’ certain ways of thinking about the war, cultural studies scholar John Storey pointed to how specific discourses that become part of a society’s ‘regime of truth’ may exert power. In the case of these film narratives, a particular discourse migrated from popular culture to political rhetoric and ideology, replacing or reinterpreting other discourses (Storey, in Grainge, 2003, pp. 99–119). Sometimes the way disability is narrativised in film and other popular culture products is part of a deliberate attempt to change the nature of public discourse. Darke (1999) and others have pointed out in detail how film representations of disability in Nazi Germany were employed to change public opinion about murdering people with disabilities. Darke directs the reader’s attention to Ich Klage An (I Complain), a 1941 film in which a disabled young woman begs the State to kill her and becomes a heroine when she succeeds. He notes that popular culture products are aimed not just at the wider public but at people with disabilities themselves. They make a difference in how people feel about themselves, as well as what we believe about and do to others. Truchan-Tataryn (2003) looked at possible links between representation of disability in Canadian literature and ‘a eugenic strain’ (p. 209) within it being expressed as regards the so-called mercy killing of Tracy Latimer, a 12-year-old with cerebral palsy, in 1993. In 2001, the Autism Society of Canada reported that 50 per cent of the disabled children murdered by their parents in the previous five years were autistic (Simmermon, 2001), so if Truchan-Tataryn’s analysis is correct, perhaps the labelling of people with autism as unworthy of life has had some truly horrific effects. Certainly, the Quebec Autism Society finds this view sympathetic: Danielle

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Blais, a mother who murdered her six-year-old autistic child, was later hired as a parent representative by that organisation (Hayes, 2006). It is especially concerning when organisations that profit from retailing particular views of autism get involved in producing TV or film portrayals. The NBC family drama Parenthood (2010–2015), for example, featured a central character, Max, who was a child with Asperger syndrome. As one of the show’s writers was the parent of a child with autism and a supporter of Autism Speaks, the charity featured prominently in at least one episode of the show and on the network’s website promoting it (NBC, 2012). Episodes were also given an autism-themed write-up by two ‘experts’ that put forward messages such as the idea that children with Asperger syndrome require thousands of dollars of expensive therapy, and Asperger syndrome was something Max needs to ‘overcome’ (ibid.). Charities and purveyors of therapeutic interventions have also sought the services of major film directors like Alfonso Cuarón (2009) to amplify their messages, medical training programmes use popular films in teaching (Conn & Bhugra, 2011) and autistic adults critique narratives produced about them and create their own (e.g. Cross & Bowers, 2004, 2006). Film and television have also proved an especially potent vehicle for spreading specific ideas about autism outside of the English-speaking world. For example, in India several films featuring autistic characters have appeared, including Barfi! (Basu, 2012) and My Name is Khan (Johar, 2010). In China, Ocean Heaven (海洋天; Xue, 2010) and Destiny (喜禾; Zhang, 2016) have been central to public discussions about autism. The South Korean TV series Extraordinary Attorney Woo (이상한 변호사 우영 우, In-shik, 2022) was created with participation from Korean autism organisations. Lead character Young-Woo, formerly a non-verbal autistic child, is now an adult autistic savant whose skills help her to solve tricky legal cases. It has sparked both controversy and interest in South Korea, where autism remains highly stigmatised, and latterly became an international hit on Netflix (Young, 2022). It would be wrong to expect that all representations of people with autism should be positive, worthy, accurate documentary-style projects: if autism is simply part of the human condition, then an autistic villain, hero or shopkeeper are all possibilities. There are valid reasons for interrogating the content of fictional representations, however, whether they are intended to depict the reality of autism or to operate as metaphor. Foremost among these is the impact of these narratives on societal beliefs about and practices around people with autism, which surely derive more from popular media than from medical texts.

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Note 1. The Boston Higashi school is the US outpost of the Higashi School, a private special education venture based in Japan. It uses group-based education methods, including frequent group exercise.

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In-shik, Y. (dir.). (2022–). Extraordinary Attorney Woo (이상한 변호사 우영우) [TV series]. ENA. Jackson, L. (2003, July 30). Live chat with Luke & Jacqui Jackson. Ouch! [TV series]. Transcript retrieved March 29, 2012, from http://www.bbc.co.uk/ ouch/features/my-­family-­and-­autism-­4.shtml James, S., Stevenson, S.  W., Silove, N., & Williams, K. (2015). Chelation for autism spectrum disorder (ASD). Cochrane Database of Systemic Reviews, 5(5), CD010766. https://doi.org/10.1002/14651858.CD010766.pub2 Johar, K. [dir.]. (2010). My Name Is Khan [film]. Dharma Productions. Kapp, S. K. (Ed.). (2020). Autistic community and the neurodiversity movement: Stories from the Faultline. Springer Nature/Palgrave Macmillan. https://doi. org/10.1007/978-­981-­13-­8437-­0_12 Kendrick, J. (2004, Winter). Signifying something: Images of learning disability in fiction for children. Disability Studies Quarterly, 24(1). Retrieved March 28, 2012, from http://dsq-­sds.org/article/view/846/1021 Knapp, M., Romeo, R., & Beecham, J. (2009). Economic cost of autism in the UK. Autism, 13(3), 317–336. Koontz, D. (2002). By the light of the moon. Bantam. Lessing, D. (1988). The fifth child. Vintage Books. Lessing, D. (2000). Ben, in the world. HarperCollins. Lloyd-Thomas, P. (2014, June 3). Ivermectin for parasites, but as a PAK1 inhibitor for autism, cancer and leukemia? [blog post], Epiphany ASD. Retrieved January 4, 2012, from https://www.epiphanyasd.com/2014/06/normal-­0-­false-­ false-­false-­en-­us-­x-­none.html Luterman, S. (2019, June 18). Book review: The Rosie Result crafts foolish caricatures of autism. Spectrum News. Retrieved January 16, 2023, from https://www.spectrumnews.org/news/book-­r eview-­r osie-­r esult-­c rafts-­ foolish-­caricatures-­autism/ Miller, S. (1990). Family pictures. HarperCollins. Mills, S., & Callahan, P. (2011, May 4). Board: Drug therapy for children with autism was risky. Chicago Tribune. Retrieved January 17, 2023, from https:// www.chicagotribune.com/lifestyles/health/ct-­m et-­a utism-­d octor-­g eier-­ watchdog-­20110504-­story.html Moon, E. (2002). The speed of dark. Orbit. Motta, M., & Stecula, D. (2021). Quantifying the effect of Wakefield et al. (1998) on skepticism about MMR vaccine safety in the U.S. PLOS One, 16(8), e0256395. https://doi.org/10.1371/journal.pone.0256395 Murray, S. (2004, October 4). The A-Z of Autism [Radio broadcast]. You and Yours. BBC Radio 4. Transcript Retrieved January 17, 2023, from http:// www.bbc.co.uk/radio4/youandyours/yy_20041004.shtml NBC. (2012). Parenthood: The experts speak. Retrieved March 28, 2012, from http://www.nbc.com/parenthood/the-­experts-­speak/

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Newport, J. (2004, Fall). One good Asperger movie can make a difference. On the Spectrum. Retrieved March 28, 2012, from http://www.aspires-­relationships. com/articles_one_asperger_movie_can_make_a_difference.htm Piper, K. (2001). Notes on the mechanoid’s bloodline: Looking at robots, androids and cyborgs. Art Journal, 60(3), 96–98. Resnicoff, M. (1989, September). Godhead revisited: The second coming of Pete Townshend. Guitar Player, pp. 66–84. Ribes, E., & Bijou, S.  W. (Eds.). (1996). Recent approaches to behavioral development. Context Press. Richards, O. (2002, December). How to make the perfect bogeyman. Empire, p. 104. Russell, R. (1967). An act of loving. Vanguard Press. Russell, K. (dir.). (1975). Tommy [Film]. Robert Stigwood Organisation. Sarafian, R. C. (dir.). (1969). Run wild, run free [Film]. Meadway Productions. Simmermon, L. (2001). Notes. Retrieved January 17, 2023, from http://www. ftlcomm.com/ensign/education/autism/notes.html Simsion, G. (2013). The Rosie Project. Penguin Books. Sontag, S. (2001). Illness as metaphor and AIDS and its metaphors. Picador USA. Spencer, P. E., & Marschark, M. (2003). Cochlear implants: Issues and implications. In M.  Marschark & P.  E. Spencer (Eds.), Oxford handbook of deaf studies, language and education (pp. 434–450). Oxford University Press. Storey, J. (2003). The articulation of memory and desire: From Vietnam to the war in the Persian Gulf. In P.  Grainge (Ed.), Memory and popular film (pp. 99–119). Manchester University Press. TACA. (2014). Starting medical intervention: For parents of children diagnosed with autism’ [presentation]. TACA. Retrieved January 2, 2022, from https:// www.yumpu.com/en/document/read/27022047/download-­a-­pdf-­of-­the-­ presentation-­here-­taca Truchan-Tataryn, M. (2003). Life sentences or sentences of death? Disability in Canadian literature. In J. Gifford & G. Zezulka-Mailloux (Eds.), Culture and the state: Disability studies and indigenous studies (pp.  207–218). University of Alberta. Tsouderos, T. (2009, May 21) ‘Miracle drug’ called junk science: Powerful castration drug pushed for autistic children, but medical experts denounce unproven claims. Chicago Tribune. Retrieved January 17, 2023, from https:// w w w. c h i c a g o t r i b u n e . c o m / l i f e s t y l e s / h e a l t h / c h i -­a u t i s m -­l u p r o n -­ may21-­story.html Wakefield, A., Murch, S. H., Anthony, A., Linnell, J., Casson, D. M., Malik, M., Berelowitz, M., Dhillon, A.  P., Thomson, M.  A., Harvey, P., Valentine, A., Davies, S. E., & Walker-Smith, J. A. (1998). Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. The Lancet, 352(9123), 234–235. Note: This article has been retracted by the journal.

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Welch, D. (2003) The curiously irresistible literary debut of Mark Haddon. Powells. com. Retrieved January 17, 2023, from http://www.powells.com/blog/interviews/the-­curiously-­irresistible-­literary-­debut-­of-­mark-­haddon-­by-­dave/ Xue, X. (dir.). (2010). Ocean Heaven (海洋天) [film]. Edko Films Ltd. Young, J. Y. (2022, September 4). In South Korea, a hit show brings autism into the spotlight. New York Times. Retrieved January 3, 2023, from https://www. nytimes.com/2022/09/04/world/asia/south-­korea-­autism-­extraordinary-­ attorney-­woo.html Zhang, W. (dir.). (2016). Destiny (Xi He) (喜禾) [film]. Huahao Film & Media.

CHAPTER 9

Autism Self-Advocacy: Achievements and Challenges

In 1990, Bruno Bettelheim committed suicide. Although he had not been an active practitioner in the autism field for some years, it seemed as though this event finally gave critics a chance to step out from his shadow. What followed was more than the reappraisal of a life’s work that usually follows the death of a prominent person: it was a public excoriation, including revelations that Bettelheim had falsified his personal and educational background, and published distorted and fabricated research (Pollak, 1997). Importantly, adults who had attended Bettelheim’s school/treatment programme as children were able to speak out and be heard for the first time. When glowing obituaries appeared in Commentary, the Chicago Reader and other publications, several adult former patients wrote letters to their editors noting that the man eulogised was not the Bettelheim they knew and that their true stories had not been told (e.g. see Angres, 1990). Until such voices were audible, those interested in the history of autism had only the views of parents and professionals to consider. The emergence of autistic people as actors with agency in the history of autism is relatively recent, and autism remains contested territory. This chapter will explore their attempts to influence debates and practices, and to create spaces within which autism is seen as difference rather than damage. It will also consider the impact of popular culture, high-profile charity

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and government campaigns focused on ‘curing’ autism, and increasingly medicalised discourses within health care, education and parenting.

From Contact to Communication Access to the letters pages of national magazines brought former Orthogenic School residents into the open, but autistic adults had already begun to play a part in the debates around autism, albeit slowly. Some connected as individuals online via Internet progenitors like BITNET, ArpaNet and computer Bulletin Board Systems (BBSes) in the 1980s; the advent of the Internet and World Wide Web would later make this form of communication accessible to people outside academic and technical networks. Communication via computer worked especially well for some autistic people, as messages and responses could be typed rather than spoken and as much time could be taken as needed. Early on, the largest and best-known online meeting place was the Autism Listserv (Autism-L), which was started by a parent, Roy Kopp, and a psychology professor at St John’s University, Dr Robert Zenhausern, in 1992. List management was transferred to an autistic adult, Carolyn Baird, in 2000 (Baird, 2000). Today, mailing lists, thousands of personal and group websites, and social media communities from Facebook to Weibo connect hundreds of thousands of parents, clinicians and autistic people around the world. But as one early subscriber has written about Autism-L: Back in early 1994, my husband and I hooked a modem up to our computer and subscribed to a BBS so we could learn more about how to help our autistic daughter, then seven years old. The first thing we did was to subscribe to the Autism Listserv, then run under St. John’s University. It was an eye opener. Not only were we able to connect with other parents who had been there and done that, we were also able to connect with autistic adults who were finding each other for the first time, and building a strong, vibrant autistic community. (Reznek, 2011)

In the same way that published parent narratives had given parents shared references with which to counter professional discourses, the emergence and sharing of personal narratives was a crucial part of building a nascent autistic culture. This has happened in print, online, through shared experiences in schools and services, and through conference organising and attendance.

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The first autobiographical book by an autistic adult in English was Emergence: Labeled Autistic (1986), written by Temple Grandin (1950–). It stressed sensory-perceptual differences in autism, but the author was also quite accepting of the need to achieve near-normalcy through education and therapy. Nobody Nowhere (1992) by Australia-born Donna Williams (1963–2017) again prioritised sensory issues over the areas covered by Wing and Gould’s triad of impairments, but also discussed abuse suffered by autistic children and adults. In addition, Nobody Nowhere helped to jump-start autistic self-­advocacy. In the year her book was published, Williams came to the US on a promotional tour, during which she met two more autistic adults, Kathy ‘Xenia’ Lissner Grant (1965–) and Jim Sinclair (1961–). The three had gotten in touch through a pen-pal list run by a parent group (Sinclair, 2005), More Advanced Autistic People (MAAP). From this meeting eventually emerged Autistic Network International (ANI), the first organisation started by and for autistic people. Initially ANI had its own pen-pal list and a printed newsletter that was mailed out to members, Our Voice. Sinclair had tried previously to get a network together through parent groups, without finding much support from that quarter. Indeed, as autistic adults first began to become regular attendees at parent conferences and participants in parent-focused mailing lists in the early 1990s, they were not universally welcomed. Temple Grandin had attended and then spoken at ASA conferences by the late 1980s, but such meetings were still organised largely around the needs and interests of parents. Sinclair wrote: It seems that one autistic person at a time—and preferably a passive one— might be welcomed as an interesting novelty or an amusing diversion or possibly even a valuable source of information and insight. But autistic people organizing together, autistic people pursuing our own interests rather than furthering the interests of parents and professionals—suddenly we were perceived as a threat. (Sinclair, op cit.)

When autistic people were invited in, it was often on a one-sided basis. Parents pumped them for information, expecting them to act as what Sinclair came to call ‘self-narrating zoo exhibits’ but not to have views of their own about important issues. ‘It is not the curiosity most autistic people object to. It is the expectation that we are obligated to answer, and the constant—and sometimes impossible—nature of the questioning,’ one

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anonymous Internet poster wrote. ‘Autistic people have lamented the tendency for others to interrupt our discussions of human rights or other political topics, in order to ask us about our toilet training or sexual histories’ (‘Zifendorf,’ 2002). As communication moved away from primarily printed materials or occasional contact at conferences and onto the Internet, initially using email lists developed for parents, this tendency was exacerbated. In response, Sinclair noted, ‘An increasing number of forum messages began to consist of peer communication between autistic people. Private email correspondences also developed among autistic people who had initially made contact on the forum.’ An internal ANI list (ANI-L) was launched in 1994 (Sinclair, op cit.). Two years later, Martijn Dekker (1974–), who was based in the Netherlands, set up the Independent Living on the Autistic Spectrum (InLv) list, which was originally accessed via a dial-up BBS. Dekker had intended the list to be a centre for activism, but found that it evolved instead into a forum for information and support. As his analysis of how people made use of InLv has substantiated, autistic adults talking to each other online resulted in the emergence of new priorities for research and support. For example, InLv discussions flagged up issues that were likely to prevent autistic women from being diagnosed as often as men. InLv posters also focused on issues of greater interest to autistic people than to parents or professionals, such as problems with auditory processing, multitasking and face-blindness (prosopagnosia), difficulties with time-­ keeping and completing projects (‘autistic inertia’), strengths in focus on details and interests, and key differences in communication style (Dekker, 1999). Many of these factors are only now receiving some attention from professional researchers, and little of this research is aimed at helping autistic people use, compensate for or route around them. Instead, research tends to focus on determining what neural processes or structures might underlie these phenomena, always overlaid with the assumption that difference is problematic. As examples, readers could examine two studies that are nearly 20 years apart: Schultz et  al., 2003, and Knight et al., 2022 (see References). For many autistic adults, a key document in autism culture was Sinclair’s essay ‘Don’t Mourn for Us’ (1993). ‘It wasn’t until 2006, when I first read Jim Sinclair’s essay on the Internet, that I felt there was someone out there who has similar ideas to me,’ said Damian Milton (1973–), an autistic adult with a PhD in educational theory and practice. ‘Now 10 years

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later and with a nine-year-old autistic son, I look back and see that this lack of connection was disabling me, that keeping autistic people away from each other was a really damaging thing’ (Milton, 2012, personal communication, 1 March). A clear parallel can be made to the way professionals previously discouraged contact between parents, and the increased power and effectiveness of parent-advocates once their efforts were combined. ‘Don’t Mourn for Us’ was first published in Our Voice and then delivered as a presentation to the joint 1993 conference of the Autism Society of America and Autism Society Canada in Toronto. It was a manifesto aimed at parents and engaged directly with the pervasive narrative of ‘mourning’ for the normal child they had expected. This is something that typical parent literature often still discusses as an expected stage in adjustment (e.g. see Autism Speaks, 2022). It asked parents and professionals to value autistic people for who and what they are, rather than seeing them as broken or faulty. Sinclair suggested that having autism is like being from another culture, and perhaps even deeper than that, as cultural components like language are largely learned but autism is innate. He nevertheless acknowledged the challenge this poses for parents (and, by extension, professionals): ‘Push for the things your expectations tell you are normal, and you’ll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you’ll find a world you could never have imagined’ (Sinclair, 1993). This seems like a common-sense message, but parent-run groups and parent-activists were on the ascendency in the 1990s, particularly in the US and Canada. Similar groups founded by parents of children with other developmental disabilities (e.g. the National Down Syndrome Congress and The Arc, formerly the National Association for Retarded Children) had long ago moved past lobbying for segregated services or ‘cures,’ largely due to parents seeing their adult offspring become powerful self-­ advocates. In the 1990s and 2000s, this was not the case in major autism organisations. In fact, the largest force in the autism field in 2012, Autism Speaks, still had no autistic adults on its board, did not fund self-advocacy projects and had a reputation for refusing to engage with any criticism of its priorities by autistic people. Rather than funding or advocating for the service improvements and supports autistic children and adults need to lead successful and more independent lives, Autism Speaks has poured most of its millions into research that its critics accused of having eugenic goals (see Chap. 10).

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It is instructive to compare the mission statements of The Arc and Autism Speaks from this time period: The Arc promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes … The Arc believes in self-determination and self-advocacy. People with intellectual and developmental disabilities, with appropriate resources and supports, can make decisions about their own lives and must be heard on issues that affect their well-being. (The Arc, 2012) We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals. (Autism Speaks, 2012)

Autism Speaks quickly became the third-largest funder of autism research (‘Sullivan,’ 2009) and influenced the priorities of the largest funder, the US government, through strategic lobbying. As a result, the vast majority of research funded has been concerned with what causes autism and how it should be ‘treated,’ rather than how to improve individual outcomes through education, public policy, combating discrimination and improving support for autistic people and their families (ibid.). Other major autism organisations in the US have similarly focused on state-by-state battles to ensure that health insurance covers ‘treatments’ such as ABA. It is extraordinarily difficult to challenge this juggernaut, as Michelle Dawson (1961–), a Canadian woman with autism who was then a postal worker, found when a group of parents went to court to force the Canadian government to pay for ABA as a quasi-medical treatment for autism. Dawson took the unprecedented step of submitting an Intervenor’s Factum, a brief written to challenge the litigants’ key assumptions (Dawson, 2004a). It was a well-reasoned, well-written and ultimately devastating critique of an approach to autism that focuses on the needs and goals of parents rather than of autistic people, which she later added to through in-depth research (Dawson, 2004b). Dawson was blunt, a characteristic that is common in autism. She said exactly what she thought of ABA and of the ‘cure or death’ dichotomy that underlay the parents’ arguments. She noted that since the stated

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objective of ABA is to eradicate autism, and as autism is intrinsic to the being of people so diagnosed, that means either eradicating who they actually are or forcing them to pretend that they are someone else. Dawson presented her case as an argument that autistic people, not just their parents, were worthy of having their human rights respected and should not be subjected to treatment that would be ethically suspect if applied to others. As she wrote, the parents’ case rested on a horrifying premise: ‘Implicit in these proceedings is the notion that autistics are inhuman, and must be therefore made human. It is only then that their rights will have been respected’ (Dawson, 2004a). For her efforts, Dawson was attacked by quite a few parents and professionals. For example, James Mulick, a prominent psychologist who ran the Ohio Autism Recovery Project, a programme that used ABA, wrote: People who have had difficulties making a living are not considered experts in economics. People who have psychiatric disorders are not considered experts in psychiatry. Why is this? This is because learned fields are not, we should hope, based on idiosyncratic experiences and personal biases alone, but rather on a demonstration of acquired knowledge and on experience of effectively working in the learned discipline … [Dawson] impressed me as a person who had managed to convince someone in her government that she had a disability, and who lived off that status, but the disability she did have had perhaps been mislabeled. Malingering comes to mind. Personality disorder comes to mind. (Mulick, 2004)

But Mulick was wrong: in other areas of disability practice, including psychiatry, person-centred planning and client-led services were already becoming standard (if not universal) practices. Today, client participation is mandated in many services. Twenty years ago, in the world of autism, however, the authoritative voice so familiar from older medical case studies was quickly raised to tell a competent adult that only ‘normal’ people have opinions that count, authorities know what’s best for you and anyone who disagrees should be defamed and silenced. The difference was that parents had now raised themselves to the same level of authority once reserved by professionals and so joined in the chorus. Dawson’s response to this attack was restrained and eloquent: I may risk my employment or my liberty by honestly stating who I am. I will as a matter of course be left out of the entire public, legal, political, and

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scientific discourse about myself. If I object to this, my character and sanity will be called into question. After all, I’m autistic. My role is limited to telling my story then leaving the room while the real people get down to business. I need to be told that all the work I do will always be completely compromised by my diagnosis. My work will only be used to verify my symptoms. Then it will be dismissed. If I should have any ideas in areas that count, like research and the law, I will need to have them promoted by persons who are not so ruthlessly disabled by prejudice, intolerance, and ostracism. (Dawson, 2004c)

From Communication to Activism The difficulty Dawson pointed out was not unique. It binds together the history of autism with the histories of various developmental, sensory and psychiatric disabilities. When the organisation that would eventually become The Arc was founded in 1950, it was run solely by parents and professionals, and its priorities were theirs: improving conditions in state institutions, training medical professionals to work with people who have intellectual disabilities and eventually vocational rehabilitation programmes (Segal, n.d.). It took time for this to change. Altered priorities were pushed through the efforts of a growing self-advocacy movement represented by groups like People First, which trained and prepared people with intellectual disabilities (including some with autism) to have their own say. It helped greatly that by the beginning of the 1970s The Arc had enthusiastically accepted Wolf Wolfensberger’s normalisation concept and was actively campaigning for the closure of large institutions (ibid.). The social model of disability arrived via disability activists in the UK not long after (UPIAS, 1975), adding further impetus to the idea of partnering with the people that The Arc purported to serve when discussing policy and provision. As mentioned earlier, the social model separated impairment from disability, which the Union of the Physically Impaired Against Segregation (UPIAS) and the subsequent disability rights movement have defined as disadvantage, restriction or oppression of people with impairments caused by physical and institutional barriers to access, social exclusion and stigma. This distinction gives disability groups a clear focus for their efforts. Because the strong stigma attached to autism through the long-lasting parent-blaming discourse set it off from the mainstream, however, these currents have been slower to make an impact. They are doing so now.

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‘I wouldn’t have had the attitude towards the National Autistic Society or even the University [I attended] if I hadn’t been pre-armed with the social model,’ stated Laurence Arnold (1955–), who was the first autistic adult to join the National Autistic Society (NAS) board of trustees in 2003. Like many autistic adults who do not have intellectual disabilities, Arnold was diagnosed in midlife. He had for many years been a carer for his physically disabled mother, who was active in disability rights campaigns in their hometown of Coventry in England. This meant he had the social model on hand to help him come to terms with the position his diagnosis placed him in after her death: to see disability as a system of external barriers rather than an internal fault. ‘This is an advantage I have over some other autistic advocates, that they haven’t come up through a communal struggle with other disabled people in that way,’ he said (Arnold, 2012, personal communication, 8 March). One criticism often levelled at the self-advocacy movement by parents is that relatively able and articulate adults like Arnold and Dawson should not deign to speak for those who are less able. ‘It’s funny that nobody ever talks about that problem with other disabilities—for instance, there are some very articulate people who use wheelchairs and there are some other wheelchair users who have intellectual and communication disabilities of all sorts, but they clearly have some needs in common,’ Arnold says. ‘In the cerebral palsy world there was a presumption that someone is chosen to speak because they could communicate better by virtue of having less of a speech impairment—I’ve seen people say “you do it because people will listen to you”’ (ibid.). Other critics have noted that when ‘you don’t speak for my severely disabled child’ is used to silence more able autistic adults, it ironically comes from someone with no personal experience at all of being autistic—nor does it acknowledge the number of autistic adults who are themselves parents, not infrequently of autistic children, and therefore have a unique parents’ perspective from which to contribute as well. Of course, there are issues when only a few autistic adults have a seat at the table, Arnold added. At the NAS, however, autistic self-advocates now make up 25 per cent of the board and many more serve on the organisation’s council and in other roles. This has not yet been replicated in many other autism organisations. ‘The debates are somewhat different now than they used to be when I was alone,’ Arnold said. ‘Our viewpoint is coming across not just from one person but from several. This gives it validity as it

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can be seen as not just one hothead with a chip on his shoulder. You also get the fact that we aren’t a monolithic society, that we do have our own debates within our own subculture’ (ibid.). The results of autistic adults emerging as a crucial part of policymaking are already tangible in the UK. ‘Where I was very instrumental in making a change was pushing [the NAS] to amend the constitution, which was unfair to autistic members—we weren’t equal to parents,’ Arnold said. ‘Obviously there was work to be done for that to convince the membership as a whole to vote for it. None of us [autistic trustees] would be voted into place without the parents’ support, so there has been a change in the attitudes of a lot of the parent-members who are concerned about their adult or soon to be adult children’ (ibid.). Arnold was also a staunch critic of the organisation’s ‘standard charity type’ media campaigns and pushed for adult issues to take a central place on the NAS agenda (ibid.). The ‘I Exist’ campaign (National Autistic Society, 2008), which was produced in consultation with hundreds of autistic adults, foregrounded lobbying to improve access to much-needed educational, mental health and support services. This informed the Autism Act 2009, which was followed by a national strategy to improve the lives of autistic adults through changes to a variety of UK state systems in 2011. It is important to note that autistic self-advocates are not only those who do not have additional intellectual disabilities. Projects like the National Autistic Taskforce ensure that autistic adults, including those in need of support to communicate, can have a say in what the national organisation Scottish Autism advocates for and the kinds of direct services it provides (National Autism Taskforce, 2021). This autistic-led project also produced an excellent guide to quality care settings and practices for autistic people (National Autism Taskforce, 2019). In the US, where change tends to come in response to more overt political pressure, a different form of activism has emerged. There are autistic self-advocates involved in many local groups, such as chapters of People First, as well as a vocal national organisation, the Autistic Self Advocacy Network, founded by Ari Ne’emen and Scott Robertson in 2006. Ne’emen (1988–), who later served on the National Council on Disability as well as for several years as president of ASAN, stated: Our goal is nothing less than full participation and full representation. When anyone is talking about autism, setting policy about autism, considering doing research about autism, [or] preparing to engage in service or programme delivery, autistic people should be involved—and not just in token

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amounts but with real representation and real ability to influence the outcomes.

He noted that making policy on women’s health care or African-­American issues would not be done today without the involvement of those affected. And as for the idea that articulate autistic individuals cannot speak for those who are less able, he added: What concerns me is that sometimes that perspective is utilised not to make an argument that there should be broader representation or to do more to reach individuals with more severe degrees of impairment in one area of life or another, it’s a way of attacking the idea of self-advocacy altogether or, even worse, the whole area of rights and dignity for people with low levels of ability. (Ne’emen, 2012, personal communication, 17 March)

Ne’emen’s own nomination to the National Council on Disability was opposed by Jonathan Shestack of Cure Autism Now (CAN), amongst others (Harmon, 2010).

From Activism to Policymaking One area where ASAN has been highly visible is in countering charity images and government medical research programmes that present autism as a terrifying epidemic that threatens children and families, which can only be addressed through finding a cure (or, more ominously, through ‘prevention’ via prenatal testing and widespread selective abortion, as has occurred with Down syndrome). Older parent organisations like the NAS and the ASA are often now over-shadowed in the public eye by Autism Speaks, founded in 2005 and thereafter absorbing other groups, such as Cure Autism Now and the National Alliance for Autism Research, that shared its agenda. These mergers and Autism Speaks’s high-powered fundraising campaigns have created a mega-organisation that now operates internationally. A typical charity appeal that reflects this mindset reads: But a cure for autism remains elusive. That is why we at Cure Autism Now continue to ask, Is this really the best we can do for our children? Is this the best we can do for those children and adults who have been stolen from us by this enigmatic thief of a disorder? How can we rescue them, and help them to realize their full potential as members of society?

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It’s time to triple our efforts, to make finding the cause or causes of autism a national priority just as we did with polio in the 1950s and the AIDS virus in the 1980s. (Cure Autism Now, 2005; emphasis in original)

The appeal to pity, charity and science seen in the NAS’s original 1962 newspaper campaign is still there, but the medicalisation of autism is explicit in this text. Furthermore, such appeals succeed because they promise to solve the ‘problem’ of autism by finding curative technologies and applying them to individuals rather than by reshaping society. As in the example above, these texts often tie autism directly to deadly medical conditions: in this case, polio and AIDS. Although organisations like Autism Speaks, of which CAN is now a part, have tempered their discourse in recent years, many self-advocates feel it is strictly window-dressing, not unlike the way some services have used social model of disability rhetoric whilst withdrawing necessary services for disabled people. It would take a complete about-face regarding where such organisations put their money and effort to turn that impression around. Another way that non-autistic people sometimes try to motivate action is with appeals based on the ‘cost’ of autism. These are invariably misleading, based as they are on assumptions that autistic people are passive recipients of public and family care, never working or paying taxes. Over a decade ago, Martin Knapp and colleagues concocted an ‘economic cost of autism’ estimate of £2.7 billion yearly for children, plus £25 billion for adults (Knapp et al., 2009)—to provide a comparison, this would be equal to about half of the annual secondary school costs for all British children or half the nation’s military budget. This unlikely figure was created by multiplying incomplete and inaccurate prevalence and level of intellectual disability statistics by an ‘average annual costs of services’ that included the cost of lost productivity due to disability—even though for the majority of autistic adults, unemployment has more to do with disability discrimination than autism itself, even though most autistic people in the UK receive very little in the way of special services. Even at the high end, the estimate was off, with the authors assuming that almost no autistic children would be in hospital settings. In fact, there are currently 165 autistic children stuck in British  long-stay psychiatric hospitals and a far greater number languishing in other forms of hospital care, such as ‘assessment units,’ where many stay for years—this kind of care is indeed quite expensive, and the number of autistic adults  in such settings is much higher (National Autistic Society, 2022).

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An even wilder estimate was published by anti-vaccination gadfly Mark Blaxill and colleagues in 2022, which suggested that current costs were $589 billion per year in the US and set to rise to $5.54 trillion by 2060. Using a metaphor that rather obviously places living with autism as a disaster, Blaxill called this the ‘autism tsunami’ (Blaxill et al., 2022, p. 2627). This time, autistic self-advocates and critical scientists were quick to respond, questioning the authors’ facility with accurate epidemiological statistics and cost estimation, as well as their juxtaposition of ‘costs’ and ‘prevention’ (Luterman, 2021, n.p.). This mindset creates a frightening environment for people who have autism: as Arnold noted, research priorities of cure-focused groups ‘don’t bother with such things as education, because the problem won’t be there long enough as they’re going to cure you’ (Arnold, op cit.). On closer investigation, most such charity or provider campaigns cement the idea of giving to the named charity or cause as the solution to the ‘problem’ of autism: whilst wrapped up in the guise of ‘autism awareness,’ they are largely exercises in brand awareness (Waltz, 2012). Ne’emen adds that the sometimes strident campaigning style of the American self-advocacy movement and these fear-based appeals are very much interrelated. ‘We’ve been responding to an immanent and dangerous threat, in the same way the Deaf community grew and really mobilised in response to the threat posed by Alexander Graham Bell and the American eugenics movement,’ he said. ‘Responding to that medicalised discourse of autism requires putting forward a clear and compelling vision of what autistic people need and want, and building a stronger autistic culture and community, as well as cultivating allies across the wider disability rights movement’ (Ne’emen, op cit.). Part of that process is more able autistic people training for and taking on professional roles. Their perspectives are often significantly different from those of non-autistic professionals. Arnold’s work in the charity sector, Dawson’s contributions to research and Ne’emen’s growing prominence as a political spokesperson are just three examples. As Wenn Lawson, an Australian with autism who is now a psychologist and social worker, said: ‘the answers to so many situations seem so apparent to me even though I find it hard to cross a road or do my own shopping! I guess I just say it like it is from my own experience and this isn’t clouded by any emotional/social or other expectation’ (Lawson, 2012, personal communication, 18 March).

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Autistic self-advocates are currently active across the globe, and not only via online forums. In India, for example, the charity Action for Autism holds regular trainings to help its clients become active citizens able to stand up for their rights (Action for Autism, 2022). In the Netherlands, self-advocates developed their own autism research priorities and vet research proposals for the national scientific research funding body, ZonMW. Self-advocacy or other forms of service user/patient participation are built into most disability-focused programmes financed by the World Health Organization and other international NGOs. American and European NGOs with extensive self-advocacy experience are also providing support and funding to help build the practice abroad: for example, The Arc recently provided a fellowship to an autistic university student from China to attend their annual conference, where she learned about supporting people with autism and/or intellectual disabilities to advocate for their needs and access citizenship rights such as voting (Miller, 2019). Self-advocacy organisations now exist in almost every high-income country (HIC), from Australia (Annear, 2019) to Ireland (National Platform of Self Advocates, 2023), and there are efforts in most low- and middle-income countries (LMICs) as well. In LMICs economic problems can work against the efforts of self-advocates, but this is also an issue for autistic adults in HICs (Petri et al., 2021). Indeed, self-advocacy can be most important in low-resource settings, where self-help and mutual aid efforts may be crucial for meeting basic needs in the absence of reliable state support. Charity and public support for disabled people’s organisations would go a long way towards ensuring that autistic people, regardless of their intellectual capabilities, can be active participants in all decisions made about their lives. This should include decision-making about research agendas and practices, support needs and services, and issues regarding health care, employment and education. This requires representation within government bodies, charities, schools and services, and political parties. To learn more about the inspiring story of autism self-advocacy and many more important achievements of self-advocates to date, the author can highly recommend the book Autistic Community and the Neurodiversity Movement: Stories from the Frontline, edited by autistic academic Steven Kapp and available free of charge online (Kapp, 2020). The future of autism self-advocacy seems brighter now than it once was, simply because it is part of a groundswell, attached to the much larger disabled people’s movement. There remains reason for concern, given the

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biomedical or genetic/genomic orientation of major research funders, but major employers, universities and civil society organisations are waking up to the value of including autistic adults. And the need for societal change is clear: for example, even amongst university graduates with autism, employment statistics are dire (Lorenz et al., 2021); autistic people and their family members continue to face discrimination and poor-quality services and supports. More attention to changing that dynamic will help not only autistic adults but also the family members who currently find themselves in the position of picking up the pieces.

References Action for Autism. (2022). Self advocacy programme. Action for Autism. Retrieved January 16, 2023, from http://www.autism-india.org/self-advocacy-­ programme.php Angres, R. (1990, October). Who, really, was Bruno Bettelheim? Commentary, 90(4), 26–30. Annear, K. (2019). Self-advocacy: From the personal to the political. Reframing Autism. Retrieved January 16, 2023, from https://reframingautism.org.au/ self-­advocacy-­from-­the-­personal-­to-­the-­political/ Autism Speaks. (2012). Mission. Retrieved March 23, 2012, from http://www. autismspeaks.org/about-­us/mission Autism Speaks. (2022). Autism and your family. Autism Speaks. Retrieved January 16, 2023, from http://www.autismspeaks.org/autism-­and%2D%2Dyour-­family Baird, C. (2000). Autism list FAQ. Australian Public Access Network Association. Retrieved March 3, 2012, from http://kildall.apana.org.au/autism/autismlistfaq.html#a3 Blaxill, M., Rogers, T., & Nevison, C. (2022). Autism tsunami: The impact of rising prevalence on the societal cost of autism in the United States. Journal of Autism and Developmental Disorders, 52(6), 2627–2643. https://doi. org/10.1007/s10803-­021-­05120-­7 Cure Autism Now. (2005). Is this the best we can do for the children? Cure Autism Now. Retrieved May 25, 2005, from http://www.cureautismnow.org/ support/index.jsp Dawson, M. (2004a). The Auton case: The intervenor’s factum. Retrieved January 17, 2023, from https://www.sentex.ca/~nexus23/naa_sup.html Dawson, M. (2004b) The misbehaviour of behaviorists: Ethical challenges to the Autism-ABA industry. Retrieved January 17, 2023, from https://www.sentex. ca/~nexus23/naa_aba.html Dawson, M. (2004c). Being told or being told off?: Reciprocity at the diagnostic interview. Retrieved January 17, 2023, from https://www.sentex. ca/~nexus23/naa_bto.html

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Dekker, M. (1999). On our own terms: Emerging autistic culture [conference paper], Autism99. Retrieved January 17, 2023, from http://www.autscape. org/2015/programme/handouts/Autistic-­Culture-­07-­Oct-­1999.pdf Harmon, A. (2010, March 27). Nominee to Disability Council is lightning rod for dispute on views of autism. New York Times. Retrieved January 17, 2023, from https://www.nytimes.com/2010/03/28/health/policy/28autism. html#:~:text=Ne%27eman%2C%20the%2022%2D,Mr Kapp, S. K. (Ed.). (2020). Autistic community and the neurodiversity movement: Stories from the frontline. Springer Nature/Palgrave Macmillan. https://doi. org/10.1007/978-­981-­13-­8437-­0_12 Knapp, M., Romeo, R., & Beecham, J. (2009). Economic cost of autism in the UK. Autism, 13(3), 317–336. Knight, E. J., Krakowski, A. I., Freedman, E. G., Butler, J. S., Molholm, E., & Foxe, J.  L. (2022). Attentional influences on neural processing of biological motion in typically developing children and those on the autism spectrum. Molecular Autism, 13, 33. https://doi.org/10.1186/s13229-­022-­00512-­7 Lorenz, T., Brüning, C. R., Waltz, M., & Fabri, M. (2021). Not a stranger to the dark: Discrimination against autistic students and employees. Advances in Autism, 7(1), 2056–3868. https://doi.org/10.1108/AIA-­10-­2019-­0036 Luterman, S. (2021, August 11). Contentious study prompts backlash from autism researchers. Spectrum News. Retrieved January 16, 2023, from https:// www.spectrumnews.org/news/contentious-study-prompts-backlack-fromautism-researchers Miller, H. (2019) The importance of self-advocacy: From China to the Arc’s National Convention. The Arc. Retrieved January 16, 2023, from https://thearc.org/ blog/the-­i mportance-­o f-­s elf-­a dvocacy-­f rom-­c hina-­t o-­t he-­a rcs-­n ational-­ convention/ Milton, D. (2012). On the ontological status of autism: The ‘double empathy problem.’ Disability & Society, 27(6), 883–887. Mulick, J. (2004, April 12). This taken seriously by the court in Canada is an outrage. Schafer Autism Report. Retrieved March 19, 2012, from http://health. groups.yahoo.com/group/-­AuTeach/message/2332 National Autistic Society. (2008). I exist: The message from adults with autism. NAS. Retrieved March 29, 2012, from http://www.autism.org.uk/TDAA National Autistic Society. (2021). The All Party Parliamentary Group on Autism. NAS.  Retrieved January 17, 2023, from https://www.autism.org.uk/what-­ we-­d o/campaign/england/how-­w e-­w ork-­w ith-­p arliament/all-­p arty-­ parliamentary-­group National Autistic Society. (2022). Number of autistic people in mental health hospitals: Latest data. NAS. Retrieved January 16, 2023, from https://www.autism. org.uk/what-­we-­do/news/autistic-­people-­in-­mental-­health-­hospitals

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National Autistic Taskforce. (2019). An independent guide to quality care for autistic people. Retrieved January 14, 2023, from https://nationalautistictaskforce. org.uk/wp-­content/uploads/RC791_NAT_Guide_to_Quality_Online.pdf National Platform of Self Advocates. (2023). The National Platform of Self Advocates. NPSA. Retrieved January 16, 2023, from http://thenationalplatform.ie/who-­we-­are/ Petri, G., Beadle-Brown, J., & Bradshaw, J. (2021). ‘Even a self-advocate needs to buy milk’: Economic barriers to self-advocacy in the autism and intellectual disability movement. Scandinavian Journal of Disability Research, 23(1), 180–191. https://doi.org/10.16993/sjdr.738 Pollak, R. (1997). The creation of Dr. B: A biography of Bruno Bettelheim. Simon & Schuster. Reznek, K. (2011, May 17). LISTSERV Stories. L-Soft Inc. Retrieved January 17, 2023, from http://www.lsoft.com/news/listservstory.asp#stories Schultz, R. T., Grelotti, D. J., Klin, A., Kleinman, J., van der Gaag, C., Marois, R., & Skudlarski, P. (2003). The role of the fusiform face area in social cognition: Implications for the pathobiology of autism. Philosophical Transactions of the Royal Society London Biological Sciences, 35(1430), 415–427. https://doi. org/10.1098/rstb.2002.1208 Segal, R. (n.d.). The Association for Retarded Citizens. The Arc. Retrieved March 19, 2012, from http://www.thearc.org/page.aspx?pid=2342 Sinclair, J. (1993). Don’t mourn for us. Our Voice, 1(3). Retrieved March 16, 2012, from http://web.archive.org/web/20090329155049/ http://web. syr.edu/∼jisincla/dontmourn.htm Sinclair, J. (2005). Autism Network International: The development of a community and its culture. Autism Network International. Retrieved March 16, 2012, from http://www.autreat.com/History_of_ANI.html ‘Sullivan’ [pseudonym of Carey, M.J.]. (2009, July 21). Autism research funding: Who is paying and how much? Left Brain Right Brain: Autism news science and opinion. Retrieved January 17, 2023, from http://leftbrainrightbrain.co. uk/2009/07/autism-­research-­funding-­who-­is-­paying-­and-­how-­much/ The Arc. (2012). Mission statement. The Arc. Retrieved March 19, 2012, from http://www.thearc.org/page.aspx?pid=2345 Union of the Physically Impaired Against Segregation. (1975). Fundamental principles of disability. The Disability Archive. Retrieved December 30, 2022, from https://disability-­studies.leeds.ac.uk/wp-­content/uploads/sites/40/library/ UPIAS-­fundamental-­principles.pdf Waltz, M. (2012). Images and narratives of autism within charity discourses. Disability & Society, 27(2), 219–233. https://doi.org/10.1080/0968759 9.2012.631796 ‘Zifendorf’. (2002, December 20). Self-narrating zoo exhibit. Retrieved January 17, 2023, from https://everything2.com/title/self-­narrating+zoo+exhibit

CHAPTER 10

Genetics, Genomics and the Medical Model of Autism

On 31 August 2021, Cambridge University announced the UK’s largest genetic study of people with autism to date, Spectrum10K, which was to collect data from 10,000 autistic people and their family members over a period of 10 years. Ten days later, recruitment to the new study, and the study itself, were paused (Baron-Cohen, 2021). This almost never happens in the research world: it was an event so surprising that it garnered major news coverage (e.g. Sanderson, 2021; Chapman, 2021) and caused a social-media firestorm. The response of autistic adults to Spectrum10K and its impact presented a break in how autism genetic/genomic research has been carried out to date. A boycott petition quickly gathered over 5000 signatures, with backing from critical autism researchers (Sanderson, op cit.). However, this moment also reflected wider societal developments related to genetic research, the (mis)use of genetic data, privacy and support for the concept of neurodiversity. To what extent did these changes parallel general changes in medical research ethics (i.e. institutional or legal requirements for informed consent, patient benefit or privacy), and to what extent did they represent responses to the specific demands of autistic research subjects (i.e. autism-specific support for informed consent, concerns about use of genetic data in prenatal testing or community research priorities)?

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The answers to these questions lie not in a sudden reaction to a specific study but to opposing shifts in practice and viewpoints that have developed over decades. As shown in previous chapters, autism research has frequently breached ethical norms. Although over the last 30 years genetics and genomics gradually became the hottest topics in autism research (Pellicano & Stears, 2011; Sweileh et al., 2016; Quick et al., 2021), this development was not supported by most autistic people themselves. Their knowledge of past poor ethical practice, concerns about misuse of genetic data, and desire for research funds to be put to different uses, gave rise to discontent (Milton, 2014). Pellicano and Stears also noted the lack of direct therapeutic benefit to autistic people who donate genetic data and the lack of indirect therapeutic benefit to other autistic people (2011). The resulting impasse is a real-world example of the conflict described by medical historian Ian Miller (2018) between the view that conditions like autism are socially constructed and the predominant medical model of disability. Eugenics has proven to be a persistent and seductive concept, so whenever developments emerge in biomedical research, Miller argues, it is important to watch for new forms of eugenics that may be carried within them. Biomedical ‘progress’ is often presented in terms of cost-savings rather than lives improved or saved, and this focus can erase the impact on actual persons. All the ‘autism awareness’ campaigns in the world are not enough to prevent many biomedical researchers from measuring human difference against the norms presented during their medical education, and making decisions based on placing lower values on lives lived with differences or impairments. This is an issue for all people with disabilities (Wolbring, 2001; Kavanaugh, 2020), but it is especially problematic when dealing with a socially constructed, subjectively diagnosed category like autism.

From ‘Epidemic’ Rhetoric to a Renewed Medical Model of Autism The improvements in diagnosis outlined in Chap. 7 resulted in much higher rates of identification than were once the case. Whereas autism was seen in the 1960s as an extremely rare condition, prevalence estimates of 1 in 100 persons (Centers for Disease Control, 2005) are now common worldwide, and the Centers of Disease Control (CDC) in the US places the current rate at 1 in 44 children (Maenner et al., 2021). Higher diagnostic rates have often been mistaken for higher prevalence rates, but this

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is an artefact of improved diagnostic services and measures, and of diagnostic substitution. In the past, the majority of persons now seen to fit the diagnostic criteria for autism went undiagnosed. The current criteria are both broader and more specified. Also, where a person might once have carried only a label of intellectual disability, an autism label may now be applied instead or in addition to this (Eyal et al., 2010). Diagnostic substitution is influenced not just by more medical knowledge about autism but also by mediated cultural beliefs. Parents today are encouraged by charity and media images to see autism as something potentially curable, whereas most accept that intellectual disability is not and is instead something to be accommodated. In a socio-political environment where families are often expected to shoulder the cost and practicalities of lifelong care, this difference is crucial. An autism label may attract additional funding for special education, for example, giving families and educators hope that they can provide extra help at school or specific services that promise to ‘normalise’ autistic children. Of course, the possibility of some recent environmental factor that could contribute to actual higher prevalence cannot be absolutely discounted, and new candidates pop up with frequency. Potential proposed causes have ranged from selective mating via the ‘Silicon Valley Effect’ (Silberman, 2003) to endocrine-disrupting chemicals in common plastics (Miodovnik et al., 2011), but so far, all such links that have been properly investigated have turned out to be mere speculation. Nevertheless, the language of ‘epidemic’ and ‘global health crisis’ retailed by parent groups, charities and some clinicians proved powerful in releasing significant research funding, with the Combating Autism Act of 2006 in particular moving research efforts into high gear in the US. This Federal law authorised spending $950 million over five years on epidemiological surveillance and basic research, as well as funding state screening programmes for developmental disorders, amongst other key provisions. It represented the single largest new investment in autism research in history and can be compared to the massive increase in funding for research on brain-based conditions and mental ill health in the 1990s, called the ‘Decade of the Brain’ by the National Institute of Mental Health in the US. The Combating Autism Act was re-authorised in 2011, continuing a high level of funding for the next three years (Library of Congress, 2011). In 2019, it was rebranded as the Autism Collaboration, Accountability, Research, Education and Support (CARES) Act, which authorised $369.4

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million in Federal spending each year through 2024 (Interagency Autism Coordinating Committee, 2019). The Autism CARES Act expanded its attention to the needs and wellbeing of autistic adults. It also sought additional to expand representation of autistic adults on the Interagency Coordinating Autism Committee from two to three persons, but increased the numbers of parent and ‘autism group’ representatives by the same number (Diament, 2019). The funding released by these laws has impacted education, care and support, but the lion’s share of research money has gone into genetic research—and especially genomic research. Genetics is the study of genes and how they are transmitted from one generation to the next, while genomics refers to the study of all of a (type of) person’s genes and how they relate to one another and the environment. This chapter therefore sketches a brief history of genetic and genomic autism research, with a focus on changes to research ethics practices. Ethics procedures are meant to protect patients1 when they become research subjects. Understanding how and why research processes have changed in the autism research field provides a lens through which to view the tensions between the medical and social models of autism, and the various forces that exert power over the production and use of biomedical knowledge. Research for this chapter was based on examination of publicly available consent forms and information packages for participants, published descriptions of research projects ethics procedures and other key sources. The intention is to illuminate any differences in autism genetic research ethics practices between the US and UK, where the vast majority of autism research is funded and managed, during the past four and a half decades. This information has been contextualised with reference to related external events.

Medical Ethics: A Moving Target In research, responsibility of researchers to state or religious authorities has shifted towards responsibility to patients in general, then towards responsibility to the specific patient they are treating. According to Baker (2014), this change has taken four centuries and is still incomplete—the ‘stickiness’ of long-standing ethical norms remains. In the US, medical ethics regarding patients and regarding research subjects diverged in the early part of the twentieth century, when the American Medical Association (AMA) declined to include medical

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researchers under its code of ethics; the same decision was made in the UK (ibid.). For many years, this left ethics procedures up to researchers themselves, often influenced by biased views of the ‘worth’ of specific patient groups based on characteristics like race, class, gender or disability. While in Europe the Nuremberg Code of 1947 had considerable influence on the development of medical ethics procedures, this was not really the case in the UK (Hazelgrove, 2002) or US (Advisory Committee on Human Radiation Experiments, 1995). Medical historian Robert Baker (2014) points to the Kefauver-Harris Act of 1962, precipitated by thalidomide-­linked birth defects, as a watershed moment in the US, as was a study in which live cancer cells were injected into persons without their fully informed consent. These and other ethical breaches were also highlighted in an influential UK article by Henry Beecher (1966), which began conversations about improving British practices. From the 1960s forward, multiple US agencies began to develop codes of practice that included requirements for institutional review boards to certify that proposed research met government guidelines. Practitioners’ organisations also began to move towards including research ethics in their codes of practice. However, when the World Medical Association released the Declaration of Helsinki in 1964, the AMA did not endorse any of the enforcement mechanisms it mandated, including peer review of proposals (Baker, op cit.). For persons with autism, the founding principle of medical research review boards also turned out to be problematic. Review boards were informed that clinical trials should serve the public good and that new therapies could be tested on humans if ‘ordinary modes of practice have been attempted without success’ (Beecher, 1970, p. 218). But as readers will now know, there were no successful ‘ordinary therapies’ in medicine for autism. Psychotherapeutic measures had proved to be a dead end. While Bernard Rimland’s 1964 book had collected multiple studies indicating that autism was inborn and might have a genetic origin, he had been ignored by the medical establishment. Researchers working in or with institutions had access to large populations of patients with autism, and the lives of these patients were undeniably grim and costly. Without recourse to any recognised medical care or cure options, any clinical trial proposal met the criteria set for experimentation on human subjects, in both the UK and US. When coupled with the literal dehumanisation of autistic patients (Waltz, 2008), this meant that research like Lauretta Bender’s experiments

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(see Chap. 6) was not seen as problematic in the very new field of medical ethics. In fact, Bender’s trials were never even submitted for medical review (Silberman, 2015, pp. 208–209). The same rationale—that while taking genetic samples might have detrimental effects on the autistic patient or others like them, it could be justified for ‘the greater good’—was used when the first large-scale twin study (Folstein & Rutter, 1977) was launched. As noted in Chap. 7, this marked the beginning of genetic research in autism. Folstein and Rutter determined that if one identical twin has autism, there was an 80 per cent chance that the other will as well; with fraternal twins, the ‘risk’2 was 40 per cent. The authors concluded that autism resulted from an interplay between genetic inheritance and environmental factors, including biological hazards during pregnancy and childbirth (op cit., p. 310). This finding has not changed in 44 years, despite years of autism genetic research in between (Zeliat, 2021). Rutter and Folstein’s work was supported by a grant from the Medical Research Council (MRC) in the UK, but there was no mention of an informed consent procedure in the article that announced their results. Nor would that have been typical in the mid-1970s UK.  Although the Royal College of Physicians (RCP) said in 1964 that all clinical trials should be approved by a medical ethics committee, there was no oversight mechanism until 1991 (Kerrison & Pollock, 2005), and no enforcement mechanism until the UK Ethics Committee Authority was formed in 2004, in response to the European Union Clinical Trials Directive (ibid.). At the time of the RCP statement, the MRC placed verbal consent as standard, and the notion of ‘informed’ consent was contested (Hedgecoe, 2009). Largely as a result of these arguments, which played out in a series of articles and letters in the British Medical Journal, amongst other places, but also in response to developments in the US, between 1966 and 1972 all teaching hospitals and at least 70 per cent of other hospitals in the UK did set up some sort of Research Ethics Committee (REC). The Patients Association, a lay advocacy group formed in the 1960s, also pressured the MRC to include laypeople on RECs. However, in the early 1970s the typical ‘lay’ REC member was a hospital secretary (ibid.). In Rutter and Folstein’s twin-pair research, any consent would have been proxy consent: parents were likely asked to give oral consent to the blood draws, physical exam and psychological testing involved in the study. It is also likely that little thought was given to possible future misuse of genetic data, as chromosomes were not karyotyped (karyotyping

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provides deeper information about the chromosomes on each gene), and blood was used only to determine whether the twin-pair was identical or fraternal. Proxy consent has historically been employed in most genetic research in autism, simply because over 90 per cent of autism research involves children (Nicolaides et  al., 2019).3 All medical ethicists recognise that proxy consent is acceptable regarding life-saving treatment, but for routine or preventative procedures or for medical research, the situation is less clear-cut. Sonja Charles (2016) illustrated one response, suggesting in a commentary on a case involving an autistic adult that performing any invasive procedure (in this case a Pap smear) requires providing information that the patient can understand and avoiding the use of restraint (anaesthesia) or subterfuge. An opposing view on the same case was presented by Stephen Corey and Peter Bulova (2016), who instead validated the use of anaesthesia as restraint and assumed that the patient could not give (or refuse) consent. In these two texts, assumptions about autism and disability are clear: crucially, whereas Charles noticed that the patient responded to a doctor’s question with a hand gesture, Corey and Bulova did not. Because of this, Charles started from a position of assumed competence (Donnellan, 1984), where consent could be obtained if information is provided in an accessible format and the patient’s comfort needs are met, whereas Corey and Bulova stated bluntly that ‘patients with severe developmental disabilities can require restraining for activities of daily living such as meals, medications, shots, and bedtime’ (Corey & Bulova, 2016, p. 375; emphasis added). Here we see an excellent example of how attitudes and assumptions about disabled people can colour medical ethics decisions. Attitudes and assumptions about autism also help to explain why increased medical understanding has so far produced knowledge in neuroscience and genetics that is of great interest in terms of basic science but of little practical benefit to people with autism.

Genetic/Genomic Autism Research After Folstein and Rutter Following the trajectory of autism genetic/genomic research is complex; the timeline depicted in Fig. 10.1 can help to place the events that will be described in this section in context with external developments that were crucial to the development of this type of research.

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Fig. 10.1  Timeline of autism genetic/genomic research

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Autism genetic/genomic research is easier to understand in light of two key societal developments. The first of these is the publication of three revisions of the Diagnostic and Statistical Manual of Medical Disorders (DSM) (American Psychiatric Association, 1980, 1994 and 2013; these revisions are marked on Fig. 10.1, each of which changed the diagnostic criteria for autism, as noted in Chap. 7. The 1994 and 2013 DSM revisions broadened and further specified the autism diagnostic category, respectively. The second development was the multi-phase Human Genome Project (HGP phases are marked on Fig. 10.1), a massive international effort to ‘map’ the entire euchromatic human genome. The HGP released large amounts of government funding for basic genetic research and fostered development of research processes and tools. The HGP launched in 1990, ended in 2003 and reached its final goal in 2021. Defining autism as a specific medical condition in the 1980 DSM-III was necessary to place it as a mainstream subject for study; ten years later, the HGP created the environment within which autism-specific genetic research could be carried out: trained staff, well-equipped labs, powerful software tools and knowledge of ‘normal’ genetic sequences. Between these larger milestones there were a number of autism-specific developments, including changes to national policy and legal frameworks regarding autism in both the US and UK, and the development of a powerful private autism research fundraising and lobbying mechanism in the US. In both countries, key pieces of national regulatory legislation were also passed. In the UK, these include the Data Protection Act 1998, the Human Tissues Act 2004 and the Clinical Trials Regulations 2004 (Kerrison & Pollack, 2005); in the US the picture was more complicated due to its Federal structure, but the 21st Century Cures Act of 2012 was especially important (Lupkin & Findlay, 2016). Each of these laws contained provisions specific to genetic research or (genetic) patient data. There have been countless related developments at universities, research organisations, and national research funding and coordination bodies like the MRC in the UK and the National Institutes of Health (NIH) in the US. Importantly, at each step the stated impetus for more genetic autism research was almost never its potential benefit for living patients but cost-­ reduction for society (e.g. Buescher et al., 2014; Klin, 2018). Finally, research developments do not take place independent of wider societal change. The rise in autism self-advocacy, the concept of

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neurodiversity, and movements for patients’ rights, disability rights and genetic privacy all have the potential to shape research bioethics policies and practices. * * * Between 1977 and 1990, very few autism-related genetic studies took place in the US or UK, although some work was carried out in Canada, Sweden, Denmark and Taiwan. A ‘state of the art’ paper looking at this period (Wassink et  al., 2001) listed a small number of single-subject or small-scale studies, most of which targeted single-chromosome abnormalities, such as Fragile X syndrome, that can overlap with autism (e.g. Watson et al., 1984). These authors mentioned two key developments in the US context: an epidemiological study at UCLA (Ritvo et  al., 1990) and a consecutive case series study at the University of Michigan (Weidmer-­ Mikhail et al., 1998). In fact, Folstein and Rutter’s (1977) findings had directly inspired the establishment of the UCLA Registry for Genetic Studies in Autism in 1980, which specifically sought to recruit twin pairs (Jorde et al., 1990). The UCLA registry also collaborated with the Utah Genealogical Database to trace kinship relations between autistic people. This study indicated a high degree of familial aggregation (ibid.; Ritvo et al., 1990). As in other studies during this early era of genetic research, the UCLA team collected genetic data but also used other methods to establish familial relationships. As Wassink et al. (2001) noted, autism genetic research during this period focused on clinical sub-populations referred for chromosomal karyotyping, typically children with additional health issues such as seizure disorders, or facial or physical abnormalities. This limited the applicability of findings to the wider autistic population, which also became considerably broader with the 1994 DSM-IV revision. Funding was exceedingly hard to come by. The National Alliance for Autism Research (NAAR) was started by a small group of East Coast US parents in 1994 to try to address this situation. NAAR focused on biomedical research by starting a brain bank, then fundraising for genetic investigations. A contemporaneous article by one of NAAR’s founders, psychiatrist Eric London, who was also the parent of a young autistic child, provides a flavour of the view of autism that informed the organisation. He used adjectives like ‘bizarre’ to describe autistic people and stated that autism ‘is every bit as devastating as the worst of the psychiatric

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diseases’ (London, 1997, n.p.). London stated that NAAR was modelled after other organisations founded much earlier that had successfully raised and directed funding for biomedical research into conditions like schizophrenia. NAAR achieved tangible success relatively early. Using direct appeals to affected families and communicating with them via its own newsletter, The NAARative, it raised $1 million in a relatively short period of time (ibid.) These funds were targeted to fund a brain tissue bank, research into language and early brain development, epidemiology (an area where it worked closely with the CDC) and pharmacology. Of these initiatives, the brain bank eventually became NAAR’s main focus. The first large-scale genetic database project related to autism began in 1997, with the Autism Genetic Resource Exchange (AGRE). AGRE was founded by Cure Autism Now (CAN), another parent-run organisation set up one year after NAAR. CAN originally tended towards dietary, metabolic and vaccine-related explanations for autism. Genetic research represented a departure, and at first some potential research partners were reluctant to sign on, concerned that an organisation founded by parent-­ activists with somewhat contrary views might not be able to manage a high-tech genetics project, even though its founders were wealthy and well-connected. However, it persisted and also made links between US and UK genetic researchers and autism researchers for the first time (Singh, 2016). CAN directly contributed to the view that the financial cost of autism was an important reason to jump-start research. It sponsored a study that claimed that the annual cost of autism in the US was then a staggering $13.3 billion (Cure Autism Now, 1997). However, such studies tend to be innately flawed, as they are based on the assumption that most autistic children receive costly special education services, that most parents have access to expensive programmes like ABA and that most autistic adults are either in institutional care or receiving extensive community support. None of these assumptions are correct. CAN also hired lobbyists to draft autism legislation and cultivated contacts in the US Senate to insert it into spending bills (ibid.). However, perhaps CAN’s most enduring contribution was its support for the so-called vaccine hypothesis of autism, which fed into existing underground currents of vaccine scepticism amongst parents. CAN co-­ founders Portia Iversen and Jon Shestack used their communication channels with concerned parents and their direct link to members of the US

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government to amplify the theory that vaccines caused autism. Initially, their idea was that some vaccines contained miniscule quantities of a form of mercury (thimerosal) used as a preservative, which acted to cause brain damage. Over time, this transformed into a multifaceted folk belief, which still is held by vast numbers of people long after thimerosal was removed from vaccines and multiple studies disproved any link (Gabis et al., 2022). As discussed in Chap. 8, this conspiratorial viewpoint provided an easy target to blame. It also proved to be a winning formula for fundraising, and within a few years, CAN had an operating budget of $10 million per year (Ne’emen, 2007b). CAN and NAAR were knocking at an open door. By the millennium, Michael Rutter had identified genetic research as a key area where progress was likely (Rutter, 1999). He accurately predicted that development of more precise and novel methods of genetic investigation than were available at the time of his groundbreaking but limited initial study would drive improved understanding—as Rutter pointed out, knowing that autism had a genetic component had already been influential in closing off psychological explanations. However, as autism is a heterogeneous condition, with more than one cause and a wide spectrum of expression, genetics cannot result in either an absolute diagnostic instrument or a cure. There would be no discovery of an ‘autism gene.’ In 1999, Rutter did list genetic counselling as a possible clinical benefit, allowing parents of affected children to make informed decisions. Other researchers focused on finding out what specific genetic differences might be doing to autistic people’s brains and bodies. A series of studies examined over- or under-growth of connective systems within the brain, brain structures at the cellular level and brain development more generally (e.g. Casanova et  al., 2001; Herbert et  al., 2004; Courchene et al., 2007). Research following infant siblings of children with autism and examining their brain development and behaviour found signs of differences in neural connectivity via white-matter tracts in siblings who later fit the diagnostic criteria for autism (Wolff et al., 2012). Unfortunately, neurological research that interrogates the concept of the normal, or more accurately ideal, human brain is rare: the identification of difference is not the same thing as the identification of disease. Potential genetic markers in cord blood (Nelson et al., 2001) were also research targets, and still more studies pinpointed how multiple genetic differences may combine to produce differences in brain development through copy number variations (CNVs) and gene expression (Chow et al., 2012).

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Jennifer Singh has ably chronicled the key events of this era of autism genetic research in her 2016 book, Multiple Autisms: Spectrums of Advocacy and Genomic Science. Her focus is on documenting the link between parent-­advocates and the rise of genetic research. However, her arguments regarding autism as a biosocial community are not always convincing. Richard E.  Ashcroft suggests, and the author’s own experience as an autism researcher (and parent) confirms, that the link people with autism (and ‘autism families’) feel with each other is not a sense of ‘biological citizenship’ based on shared genetics. As Ashcroft states, ‘it is more often mediated through a common focus on the lived experience of autism, a medical diagnosis attached to experiences, behaviour, institutions and life chances’ (Ashcroft, 2017, p. 249). Other researchers have also challenged this account, suggesting that alternative narratives of ‘biological citizenship’ have been created by autistic people themselves via the concept of neurodiversity (e.g. O’Dell & Brownlow, 2015). CAN’s AGRE project was aggressive about outreach and commercialisation, with mapping the ‘autism genome’ as its stated goal. After the first human chromosome was sequenced in 1999 as part of the Human Genome Project, this became a real possibility, and AGRE rolled out whole genome scanning (WGS) and a technique known as finemapping as more precise tools became available. Parents were recruited as participants with appeals to furthering research on autism and, as the sponsoring organisation’s name suggested, the possibility of developing a cure. Confidentiality was not enumerated in the parent materials that are now available. Consent for sampling was proxy consent only, and part of the deal was unlimited reuse, including for commercial products like AGRE’s own DNA data, cell lines and serum samples, which it sold to interested researchers. That said, for the first time in the project materials examined during research for this book, both independent and site institutional review board (IRB) oversight was mentioned in some recruitment letters (although the details of IRB advice are unknown). AGRE continues to operate, now under the umbrella of Autism Speaks (AS). The following period saw major advances in autism genetic research. As two well-known researchers wrote: ‘driven by remarkable advances in genome science, the search for genes that enhance the risk of autism has escalated over the past five years’ (Fischbach & Lord, 2010, p. 192). One of the most significant developments was the 2004 launch of the Identifying Autism Susceptibility Genes funding stream, using funds raised by NAAR for pilot projects in genetics, and run by the National Institutes of Mental

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Health (NIMH). This project was part of a larger NAAR effort that, coming hot on the heels of the 2003 end of the Human Genome Project, was called the Autism Genome Project. While NAAR’s Autism Genome Project presented itself to the public as an American endeavour, it actually involved collaboration between the US and UK researchers. However, it was also during this period that some differences can be seen to emerge between US and UK policy and practice—up to a point. The UK started the next large-scale database of autistic people, the DasIne database (http://daslne.org/) at the University of Newcastle in 2003. Its focus was on children, and the plan was to develop information about prevalence, age at diagnosis, education and early intervention, and also to tackle parent-identified problems such as sleep and eating issues. These issues, not genetic research, were its primary goals. This list of priorities matched those of the National Autism Plan for Children (Le Couteur & NIASA, 2003), also launched that year in England, and the database team developed durable relationships with local parents and policymakers. Most research was done via questionnaires and surveys. Two years later came the first truly large-scale US database project, the Simons Foundation Autism Research Initiative (SFARI), which began the Simons Simplex Collection (SSC). This project set out to collect genetic, clinical and neurobiological data on 3000 families with at least one autistic child. The focus of the SSC was to uncover copy number variants (CNVs) that might be linked to autism (Fischbach & Lord, 2010). Like the efforts of CAN and NAAR, SFARI was funded by private philanthropy. However, the Simons Foundation had developed strong links with mainstream genetic researchers, and along with the founding of the related Interactive Autism Network (IAN) project at the long-established Kennedy Krieger Institute in 2006, SFARI represented the moment that autism genetic/genomic research really entered the mainstream. The big money also arrived at around the same point with the 2005 debut of Autism Speaks (AS), a fundraising behemoth that eventually absorbed both CAN and NAAR.  As had been the case with NAAR, its founders had high-level media and government connections, and AS lobbied hard for a Federal government bill that would turn on the government funding tap for autism research. The resulting Combating Autism Act of 2006 was partly written by AS lobbyists and released almost $1 billion for autism research. Genetic research was heavily prioritised by the NIH and NIMH, which managed most of the ensuing funding, and also by Autism Speaks itself, which has continued to build and distribute a

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huge private research-funding war chest. Between 2007 and 2011 alone, AS spent around $2.6 million on lobbyists who targeted the US Federal government (Itkonen & Ream, 2013). AS often also took over smaller projects that looked likely to succeed, such as the Canadian American Research Consortium ASD  (autism spectrum disorders) (CARC-ASD) Genetics of Autism Spectrum Disorders project. CARC-ASD recruited on both sides of the US-Canada border and was the earliest project for which the author could obtain full research ethics documentation. The project used proxy consent only and promised no personal benefit. It appealed to parents to contribute to learning about the genetic causes of autism, potential subgroups and, in later years, additional environmental determinants of autism. Blood, saliva or cheek swab samples were collected with promises that genetic and other data would be stored under codes rather than names (‘anonymised’). There was no discussion of potential risks, and materials for parents were written at a high level of difficulty,4 with some information unclearly written. This was not typical of other genetic research project materials for participants at the time. Confidentiality of genetic data was already a hot-button issue when the CARC-ASD study began, with numerous articles appearing in the press related to confidentiality of genetic data in electronic health records as well as genetic research data. The Federal Privacy Rule and Security Rule had been put in place via the Health Insurance Portability and Accountability Act of 1996 (HIPAA). But just a few years later, stated Amy L. McGuire and colleagues: As numerous health information databases and electronic record platforms become linked and interoperable, reidentifying individuals whose health information has been ‘de-identified’ according to Privacy Rule standards becomes more plausible. The inclusion of genetic/genomic test information into the EHR increases the possibility that a person can be identified unequivocally on the basis of a few genetic variants. (McGuire et  al., 2008, p. 496)

In other words, at this point the possibility of true confidentiality was already gone—and yet CARC=ASD still promised parents that ‘no one will ever be able to link your samples or any results to you or your family’ (CARC-ASD Research Registry Subjects Consent Form, p.  3), and some autism genetic researchers continued to promise confidentiality for several more years.

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As SFARI’s activities ramped up in the next decade, its research materials for participants responded partially to this challenge. Its 2011 materials state: We will take standard precautionary measures to protect confidentiality. However, it is possible that a breach of confidentiality (i.e., a loss of privacy) could occur and insurance companies or current or potential employers would acquire the genetic information obtained from this study. Currently, laws are being considered to address the confidentiality of genetic information, but there is little or no legal protection at this time against discrimination on the basis of genetic information. (University of Michigan Autism and Communication Disorders Center, Molecular and Family Genetics of Autism and Autism Spectrum Disorders/Simons Simplex Collection consent package, p. 6)

This statement comes closer to disclosing potential participation risks, but suggests that the problem lies with health insurers or employers,5 rather than relating it to societal discrimination or individual privacy. Again, initially only proxy consent was used for the project, so parents gave consent for minor children or vulnerable adults without offering the affected individual a chance to determine their own preferences regarding future risks. However, this set of materials for SFARI was written in much more accessible language, and it was the first study seen during research for this book that promised to use an NDAR number to ‘de-identify’ information. NDAR was the National Database for Autism Research, an NIH-­ funded databank that was one of the first tangible results of the Combating Autism Act of 2006. It leveraged on data already collected by NAAR, CAN’s AGRE project and SFARI, guided by a strategic plan that called for at least 90 per cent of autism genetic research, regardless of funding source, to place its data in NDAR.  To avoid possible duplicates, since some families had taken part in more than one research project, the NDAR number was created. This was the precursor of the NIH’s standard coding system for all genetic research, the Global Unique Identifier (GUID), introduced in 2016. The GUID system is now the cornerstone of BRICS, a suite of web-based informatics tools for sharing and collaborating on research involving large genetic/genomic datasets (National Institutes of Health, 2022). In other words, multiple technological developments affecting all genetic/genomic research have their roots in procedures developed for autism genetic/genomic research.

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Between the Combating Autism Act of 2006 and its successor, the Autism CARES Act of 2014, Autism Speaks became the go-to source for funding, internships, collaborators and policy advice regarding autism genetic/genomic research. Unfortunately, it did not always live up to the highest standards. For example, AS often funded studies in Canada rather than the US, at least partly because US standards were being harmonised with the EU’s much stricter General Data Protection Regulation (GDPR) during this period, while Canadian confidentiality and data-sharing rules were considered lax and therefore easier to work with (Thorogood, 2018). It also did not publish research ethics materials until the MSSNG project in 2011, a collaboration between AS, Verily Life Sciences (then Google’s health informatics arm, now part of its parent company, Alphabet Inc.) and other partners that aimed to collect genetic data from 10,000 participants. These materials were written at a university reading level and stated that collected data would be available for unlimited reuse. Notably, however, a consent form template in a set of the documents provided to participating MSSNG researchers acknowledged deeper privacy risks: Although we will implement numerous safeguards to ensure the confidentiality of your child’s data and sample, including the use of strict coding methods, there is always a remote risk that your child’s identity may be identified based on information in the MSSNG Database when put together with other information that may be willingly or unwillingly in the public domain. Your child’s genome is unique to your child, much like his or her fingerprints. Experts advise that it is technically possible for a person to be identified based solely on the person’s genomic information. This risk increases when other information about the person is made available together with genomic data. (Autism Speaks, MSSNG consent form template, 2011, p. 11)

As of 2016, much of the MSSNG project data (WGS of 5102 people with autism and 6079 family members) had already been made freely available online via the Google Cloud. During this same period, it was another Google-linked company, 23andMe (South San Francisco: 23andMe Inc.; founded 2007), and an older competitor, Ancestry (Lehi, Utah: Ancestry.com LLC; founded 1996) and providing genetic testing since 2012, that created the most obvious opportunities for breaking confidentiality of MSSNG data. The UCLA Registry for Genetic Studies in Autism had already demonstrated in 1985, using the crudest of linkage studies, that it was fairly easy to link the records of related persons who have autism or an autistic family

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member. Since many users of DNA geology services like 23andMe and Ancestry upload their test results to open-source sites like GEDMatch (San Diego, CA: GEDMatch Inc.), and since genetic test data became a much more common part of imperfectly protected Electronic Health Records (EHCs) and criminal justice system databanks during the same time period, the chances of a damaging data breach linking ‘confidential’ datasets and personal identifying information on the basis of unique genetic patterns were and remain high. * * * As autism research pivoted towards a focus on genetics/genomics, something else was also happening: the rise of autism self-advocacy, as discussed in Chap. 9. The Autistic Self-Advocacy Network (ASAN, US-based but with many international links) was actually founded in response to the perceived dangers of the Combating Autism Act of 2006; the Act also mandated creation of an Interagency Autism Coordinating Committee that included a person with autism. This was a first at Federal level in the US. By 2008, an autistic person—ASAN founder Ari Ne’emen, in fact—was also named to the National Council on Disability. This sparked controversy (Harmon, 2010), but Ne’emen proved to work well in this mainstream, cross-disability role. However, while autistic people serving in policy roles had already been mainstreamed in the UK at this point, it has remained rare in the US. As Ne’emen stated in an address to the Interagency Autism Coordinating Committee (IACC): ‘We are usually the last to be consulted on autism policy; the autistic community should be the first to have input into policymaking about our own futures’ (Ne’emen, 2007a). In the UK, by contrast, the Autism Act 2009 (National Archives, 2009) was written in collaboration with autistic people (including autistic autism researchers) and pertained mainly to diagnostic and service changes. Because most UK medical research takes place in cooperation with the NHS, this also impacted research directions. In the US, UK and internationally, organisations like ASAN and independent self-advocates began to challenge genetic autism researchers on multiple points from 2008 forwards. Areas of contention ranged from confidentiality, to the potential use of genetic data for eugenics (such as prenatal testing), to the ethical basis for research that cannot benefit any living person with autism. This was not a unique phenomenon: while

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people with very rare genetic diseases may in fact be quite sanguine about the use and reuse of their genetic data, considerable disquiet remains amongst disabled people and the general public about potential misuse (e.g. Parens & Asch, 1999; Joly & Dalpe, 2021). Even for those who have willingly taken part in genetic/genomic studies, there is a range of opinion about sharing and reuse (Goodman et al., 2016), and many participants are not well informed about potential risks. Social media has provided another key forum for interrogating the purpose and risks of genetic/genomic research, and ever since, researchers can expect to hear from activists online as well as offline. For example, autistic Twitter user ‘Myth’ responded to a MSSNG announcement with the following sarcastic message: MSSNG: We’re collecting data on Autism Genes for … treatment, yeah. for personalized ‘treatment.’ So we can Understand Autism Better. There’s definitely no motivation to say, eradicate autism. nope. this data definitely wouldn’t be used for, like, eugenics, absolutely not. (‘Myth,’ Twitter, 10 December 2019)

As social media and policy-level interventions increased, and laws emerged in many countries to address genetic ‘data creep,’ researchers slowly began to acknowledge the concerns of autistic people. For example, when the Simons Foundation announced an even larger database programme that would include 50,000 participants, SPARK, in 2020, consent forms finally met the ‘simple English standard’ and included versions specifically for autistic adults. However, this study also created new ways for data to escape and be matched with individual identifiers, as participating families could share data via an ‘app’ with therapists and other practitioners. While independent and site-based oversight was explicitly mentioned and participants could now opt in or out of specific kinds of data reuse, it was clearly expected that most coded data would be shared with collaborators and outside researchers. Ironically, the study whose sudden closure opened this chapter— Cambridge University’s Spectrum10K—came closest to addressing community concerns in some ways. Its ethics materials were written in plain English, sufficient information about most risks was provided (including in EasyRead format for individuals with intellectual disabilities) and an assent form for children was included. Assent forms ensure that minors or people deemed to lack the legal right to consent are informed about the

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nature and purposes of research they are asked to participate in and agree to take part. Crucially, the Spectrum10K study promised to consult an advisory board that would include autistic adults and parents. However, risks were still minimised—and most importantly, the study was partly funded by US-based entities and permitted sharing data with external and commercial partners, which critics saw as opening the door to eugenics and other forms of misuse (e.g. Boon, 2021).

Conclusions Very large datasets are now being assembled that contain WGS data from people with autism and their families: MSSNG (10,000 ‘autism genomes’), SPARK (genomic data from 50,000 families) and Spectrum10K (with 10,000 potential participants). In 1977, an anonymised DNA sample could not yet be used to identify an individual. Today it can, thanks to the proliferation of genealogy databases, DNA sampling in the criminal justice system, and pervasive use and retention of patient-linked genetic data in medicine. Genetic research can never again be truly anonymous, and consent forms that promise anonymity or downplay risk do not provide participants or their proxies with accurate information to support fully informed consent. In addition, researchers themselves cannot accurately predict what uses genetic data might be put to in future. So although Simon Baron-Cohen has stated that he opposes the use of genetic data to create prenatal diagnostic testing for autism (2020, n.p.), if his study data is available for reuse, that risk remains. It is clear from articles written about the gap between researchers and research subjects in their understanding and concern about bioethics (e.g. Hsu, 2020) that practices are slowly responding to new ways of using patient data, but in autism genetic/genomic research, however, this has been very slow indeed. The best documented set of research criteria developed with autistic people (Nicolaides et al., 2019) was based on participatory research projects carried out between 2006 and 2018 in the context of research projects with autistic participants. These authors state: ‘Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters’ (op cit.,

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pp. 1–2). Examination of evidence collected for this book suggests that in genetic/genomic research, the voice of autistic patients has so far had little influence beyond improving accessibility of medical ethics documents. The changes seen so far may serve the needs of researchers more than those of autistic people themselves, by removing barriers to participation in studies. The core of the problem is a mismatch of research priorities between autistic people and biomedical researchers. In modern biomedical research, there has been for many years a movement to involve patients in clinical trials; ‘participatory’ methods, such as co-creation of interventions with end users, is an established practice in social sciences research. Part of the reason is cost: looking just at medication development, pharmaceutical firms spend millions to develop new drugs, few of which ever reach market. Social sciences research is labour-intensive and also requires significant resources. Pharmaceutical firms have resources that far outstrip those of researchers who develop new techniques in areas like special education, speech therapy or community support, but all want their work to be cost-effective. When patients or end users are involved in research from the very start, by setting priorities and ensuring that research projects that do go forward are geared towards meeting real-world needs, the results are much more likely to be viable (and perhaps even marketable, although profit from improved service or support provision is usually indirect, for example seen years later in higher employment levels or less need for welfare benefits). Organisations like the UK’s James Lind Alliance have helped to support priority-setting exercises with many different groups of patients, including people with autism (e.g. see James Lind Alliance, 2016). There have also been many well-organised independent efforts, such as the autistic-led Onderzoeksagenda Autisme (OZA) autism research agenda project in the Netherlands (van den Bosch & Weve, 2019) and the European Council of Autistic People’s multi-nation survey on research priorities (2022). Priority-setting exercises that include patients are not without problems. When they set out to satisfy multiple stakeholders, such as people with autism, parents, teachers and other practitioners, and researchers, results can be skewed towards the needs of the most powerful actors. People with autism themselves occupy the least powerful position in research, so their priorities may be devalued. This is a persistent problem with biomedical research exercises that focus on multiple stakeholders, because those directly affected by a health condition actually have a greater

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‘stake’ than any other group, but may find that in these processes other stakeholder groups’ views are balanced against theirs as if the stakes were equal. In addition, participants in priority-setting exercises may not be fully representative of stakeholder groups, because the methods used tend to favour people who are already involved in autism or autism parent organisations, have reliable Internet access and have good communication abilities (Roche et al., 2021). It is also important to recognise that stakeholders’ needs do not always coincide—nor do they necessarily have to. Parents of autistic children have specific support needs, for example, and these differ from the needs of autistic adults. Attention to conflicts between the needs of parents and children, parents and adults, and so on, need to be closely examined, to ensure that the needs of non-autistic persons are not allowed to override those of directly affected autistic people. A systematic review covering many such priority-setting exercises (ibid.) identified major differences between stakeholder groups, with parents and professionals favouring early identification (including genetic research) and interventions or treatments, while autistic people themselves favoured research focused on areas like skill development and inclusion. For years, US and UK autism researchers have worked closely together, and many links and partnerships continue. As shown in earlier chapters, when Freudian or behaviourist psychology approaches prevailed in the US, the pragmatic approach of clinicians like Uta Frith and Lorna Wing was crucial to ensure that basic research continued and was translated into effective support. However, the rise of genetic/genomic autism research can be seen to gradually open up a gap between the two countries in terms of research practices and priorities. This gap appears to have its roots in earlier processes. Autism is considerably more medicalised in the US than in the UK, as exemplified by the need for a medical label to obtain special educational needs support in school. The much larger amounts spent on quasi-medical ‘autism therapies’ by US families also indicate a more medicalised view of the condition (Buescher et al., 2014). Medicalisation of autism does not account completely for the differences, however. The amount of money poured into autism genetic/ genomic research under the Combating Autism Act and Autism CARES Act, as well as the existence of a large, well-financed private research funding sector, has attracted researchers from outside of the autism field who see opportunities to do cutting-edge work on interesting aspects of genetics/genomics. Researchers involved in these processes have become

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‘stakeholders’ in priority-setting themselves, and their priorities can become entrenched through mechanisms like availability of research funding or even journal ‘impact factor’ measures, which encourage researchers to favour one journal over another. For instance, although it had existed less than ten years at the time of this writing, the journal Molecular Autism, which focuses on genetic, genomic and biomedical autism research, has passed the Journal of Autism and Developmental Disorders (JADD, founded in 1971, impact factor 4.345). With an impact factor of 6.476, Molecular Autism is also rapidly gaining on the highest-rated autism journal, Autism (founded in 1997, impact factor 6.684).6 For the lay reader, journal impact factors are esoteric, but for researchers they are about the status and ‘reach’ of publications: researchers need to be seen to publish in and be on the editorial boards of ‘top’ journals to satisfy employers or find better posts. JADD and Autism are both interdisciplinary, publishing articles on social inclusion, special education, staff training needs and other key topics in autism, as well as research with a biomedical or genetic/ genomic focus. Finally, even though the first autism self-advocacy organisation to target research organisations was ASAN, self-advocates have historically had less access to researchers, funders and policymakers in the US. In the UK, by contrast, autistic self-advocates have had a regular channel to Members of Parliament (MPs) via an advisory group for the All Party Parliamentary Group on Autism (APPGA) since 2000 (National Autistic Society, 2021). The National Autistic Society (NAS) has had autistic board members and employees for over two decades. Their concerns about autism genetic research have frequently been raised with the APPGA and are reflected in the NAS’s own stance. By contrast, Autism Speaks has only briefly had an autistic advisory board member, author John Elder Robison, who resigned due to its ‘destructive’ campaign materials (Diament, 2013, n.p.); the Simons Foundation has involved autistic adults in priority-setting exercises but not at Board level. Genetic testing is also much more widespread in the US and can be obtained from a variety of private providers. By contrast, in the UK 99 per cent of genetic testing takes place in NHS facilities (OECD, 2021), almost always as part of a diagnostic process. Prenatal genetic testing (PGT) for autism is widely available from clinical services in the US (Chen et  al., 2015) but is considered controversial in the UK. Although PGT for autism can only provide an indicator of ‘risk’ rather than a definite prenatal diagnosis—after all, there are no genetic tests that can identify or rule out

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autism—it represents the first tangible result of genetic autism research and is a legitimate reason for concern. Beyond the US-UK nexus, this type of genetic testing is much less regulated. In India and China, for example, there are many companies that openly (and misleadingly) offer PGT ‘for autism.’ It is clear that the UK and its citizens take a more conservative approach to not only the societal use of such research but also genetic/genomic research itself. UK autism genetic researchers are also more defensive about accusations of commercialisation of their research, which is likely linked to the fact that most is carried out in NHS-linked facilities using public funds. No private research funding mechanism in the UK approaches the power of Autism Speaks, and an overt genetic/genomic research agenda would be unlikely to survive negative publicity. Spectrum10K, for example, accentuated potential real-world benefits rather than genetics/ genomics in its announcements to the public. From 1977 to 2021, the resources expended on autism genetic/ genomic research have soared in the US, predominating over other research topics. It has certainly risen in the UK as well, although not to the same degree. However, research is increasingly international in nature, and this can be seen in collaborative efforts such as the Autism Genome Project and Spectrum10K. The differing prominence of autism genetic research in the US and UK likely reflects the relative power of autistic self-advocates in setting research priorities. This can be demonstrated by looking at participation of autistic persons at policy level in the US and UK: in the US, the presence of one autistic person on a Federal policy taskforce was seen as controversial, whereas in the UK such participation is mandated, if often imperfectly executed. However, the sheer volume of funding available in and from the US may be a key factor in overriding the priorities of self-advocates. Now that the ‘autistic genome’ has been extensively sequenced, the genie cannot be put back into the bottle. The next set of choices will be about determining how this information can be used. There are already many worrying signs of just how such data could be employed, ranging from misuse in criminal trials to giving discrimination a ‘scientific’ basis (Sabatello & Juegst, 2019). In an ableist world, such concerns are well-founded. The medicalised view of autism that predominates in the US militates for prenatal genetic testing (and prevention through abortion or embryo selection, if these practices remain legal), development of autism-specific

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medications and, potentially, genetic engineering as ‘solutions’ for autism.7 The social-model view of autism, which is stronger in the UK, presents a contrast. There are also worrying signals from elsewhere about the impact of this medical model of autism. By definition, human differences with their roots in a huge number of combined genetic differences are not something that can be fixed with gene therapy. Such methods may eventually fulfil their promise for single-gene conditions like Tay-Sachs disease, but even if one found it a desirable outcome, this will not occur with autism. This can potentially lead to some very dark places. In the Netherlands, euthanasia is a legal choice for persons with health conditions that cannot be cured— including autism. In an examination of nine cases (out of far more) where autistic people have requested euthanasia in the Netherlands, all were seen as subject to ‘unendurable suffering,’ their lives judged to be ‘hopeless,’ and they were given permission to die via assisted suicide (van Veen, 2020). But was it something inherent in autism itself, or the often extremely poor quality of care, support and acceptance provided to autistic people that caused this suffering—or perhaps our current lack of effective help for sensory-perceptual difficulties, which were at the base of several cases? And to what extent did the relentlessly negative medical view of life with autism contribute to these individuals’ feelings of hopelessness or the opinions of medical professionals involved? As several members of this group also had intellectual disabilities and/or had been sectioned, there are also questions to be asked about their ability to request and consent to this most final of medical procedures. In these circumstances, autism research that addresses the priorities of autistic people can be seen as literally a matter of life or death. How people live with autism is also important—and in recent years much more has become known about the lifelong impact of some ‘autism therapies’ that are chosen by parents or funded by government services. This can include increased rates of post-traumatic stress disorder (PTSD) and other forms of harm (see Kupferstein, 2018; Reframing Autism, 2022; Neumeier & Brown, 2019). Many adults with autism are now living with the impact of having been a parental ‘project’ that did not succeed in a cure, giving rise to personal trauma and damaged relationships. And as has been mentioned earlier in this chapter, focus on treatment of children means that research into adult services and supports has been neglected.

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Could the UK’s historically different approach to autism research once more pull the US back from a potentially negative course, as it did between 1970 and 1990, or will the lure of lavish research funding be too much to resist? The more critical autism studies strain has gained more traction in the UK, but many US researchers are also pushing for change. Will emerging players in genetic/genomic research, such as China and India, apply very different value systems to the results they achieve? Only time will tell, with the relative power of self-advocates and changing societal views regarding autism as key factors in the power struggle between seeing autism as socially constructed and the medicalisation of autism. The emergence of people with autism as participants in the creation, furtherance or amelioration of discourses and practices around autism does not represent an end stage. Nor does the seemingly unstoppable juggernaut of genetic/genomic research, and the very different ideas about autism that it represents. Bodies, identities, rights and the way these are perceived and controlled will continue to be contested, as they are in other areas of impairment and difference. The emerging concept of neurodiversity is crucial to bridging this divide (Singer, 1999). It seeks to place the autism spectrum within the human spectrum, alongside other areas of human diversity such as race and gender and their accompanying discourses of rights, freedoms and cultural choice. At the same time, economic changes appear to be narrowing the space for difference within neoliberal capitalism and in increasingly autocratic states. This may prove to be the most important field of battle and underlies many of the current controversies in medicine, education and disability/human rights. The future of autism is entangled in these wider debates. It is easy to point out the many ways in which current systems disable those who struggle with communication and social understanding: low expectations that lead to low aspirations, the poor quality of much special education and disability care provision, and the rising importance of ‘affective labour’ (the sale and purchase of emotional states, real or simulated) in the workplace (Hardt & Negri, 2004), to name just three key factors. These have impact beyond the boundaries of autism, and so the way forward will require moving past these boundaries as well, by making common cause with other disabled people and similarly disadvantaged population groups. However, it is often quite hard to step back to see this wider context while dealing with personal or local barriers.

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Most of what is contested about ‘autism’ is actually about symbolic maps: maps of ‘symptoms’ or differences that we may choose to call a ‘disorder,’ maps of socioeconomic activities constructed around normative personhood and ways of being atypical that seem to contest these. These are maps of power structures as well as brain structures. Mistaking the map for the territory it describes is one of the oldest fallacies in human reasoning, and it is an easy one to fall into when the map is so fascinating in its variations and constantly changing nature. This is the main reason that sections of this book have focused on the narratives that people—clinicians, parents, people with autism, the media—create to explain autism to themselves and the world. Stories are how we blend facts, suppositions, worries and experiences into something we can understand: they create meaning and suggest responses. It is this author’s view that recognising and working from strengths, and valuing the rich and varied lived experiences of people currently designated as ‘on the autism spectrum,’ are the first steps into the actual territory of autism for those of us not already situated there from birth. This journey, like all ventures into human realities, will challenge prevailing notions of dependence, interdependence and independence, as well as widely held views about normalcy. It’s been a long, strange journey, as the stories told in this book demonstrate. The next steps will be equally interesting, with potentially liberating or limiting consequences for all of us.

Notes 1. Autistic people are not normally ‘patients,’ as autism is not a disease state, but in the context of biomedical research they and other disabled people are positioned as such. This simple shift can automatically put them in the position of subjects to be acted on by clinicians, rather than independent actors with agency and rights. 2. Genetic studies of autism make liberal use of the word ‘risk,’ but in keeping with the author’s view of autism as a normal human variant and with the preferences of the autistic community, its usage is problematic. 3. This remains the case, despite the fact that the majority of people with autism are adults. 4. The difficulty level of materials for research participants was calculated using the Gunning fog index, a standard measure of readability. For near-universal readability, a fog index of 8 or below is needed, which correlates with a middle-school reading comprehension level. If materials are being prepared

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for people who may have intellectual disabilities, established guidelines such as the EasyRead or ‘simple English’ standard should be followed. 5. The two are closely related in the US context, as health insurance is often obtained through one’s employer. Employees who have a (family member with a) pre-existing condition may experience employment discrimination as a result. 6. Impact factor data accessed from Web of Science (Chandler, AZ: Clarivate Inc., https://access.clarivate.com/), 3 January 2023. 7. Given the number of genetic differences now known to be associated with autism, this is highly unlikely, but it is sometimes mentioned by both campaigning groups and genetic/genomic researchers as a potential outcome.

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Afterword: A New Politics of Autism?

I have often thought that my own personal history has been inextricably linked to the history and changing discourse regarding autism. Born in 1973, it was not until 2004 that I started to identify with being autistic, as my son was soon after this time to be diagnosed (which led to my own subsequent diagnosis of autism in 2009). Before this time, I had been cast adrift from any sense of autistic community and culture, and felt largely alone as I sought greater understanding of my own and others’ ‘dispositional diversity’ (as I conceived of it at the time). Upon identifying as autistic, the first autistic person that I sought contact with was Jim Sinclair, after which I joined the Autistic Network International (ANI) mailing list. In these earlier days of autistic community, the culture felt somewhat small and spread across many countries, albeit largely from the Global North. My own emergence as an autistic scholar-activist coincided with the rapid growth of identification and diagnosis in autism that had been brought about by the broadening of the diagnostic criteria. As I once warned a manager at a large autism charity in the early 2010s, the large numbers of young people being diagnosed were soon to reach adulthood and, linked to the huge rise in social media use and culture, would lead to a rapid growth in support for the neurodiversity movement and related concepts and politics. I am glad to say that this prediction was an accurate one, to the extent that it could be said that the neurodiversity and autistic © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 M. Waltz, Autism, https://doi.org/10.1007/978-3-031-31015-7

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rights movements have reached something of a tipping point regarding public recognition. A clear example of changes in the politics and narratives regarding autism can be seen in responses to the film Music (Sia, 2021). This film depicted a young autistic woman with intellectual impairment and was even described by its creator as ‘Rain Man, but for girls.’ The film was almost universally derided by critics, not only for its representation of autism but also for uncritically depicting prone restraint (among many other issues). Both prior to and post-release, criticism from autistic people on social media was abundant. Unlike in many similar cases in previous years, however, media articles about the film were directly talking about these criticisms within a broader framework of the neurodiversity movement and quoting arguments from autistic people regarding representation. The inclusion of such voices in the debate would have been almost unthinkable when I first became involved in the politics of the autism world. The philosopher Ian Hacking once commented that autistic people were ‘creating the language in which to describe the experience of autism, and hence helping to forge the concepts in which to think autism’ (Hacking, 2009, p. 1467). Many years previously, Donna Williams (1996) had suggested that the entire history of autism had been judged from the outside by its appearances to non-autistic people, rather than how it was experienced by autistic people. Whilst still derided by some who would seek to minimise the influence of the neurodiversity movement, the qualitative experience of being autistic that had hitherto been erased or manipulated has been increasingly finding its own outlets, with an ever-increasing number of autistic artists, bloggers, activists and academics. This has not only helped to provide autistic-led community spaces (both virtual and in-person), and a new narrative regarding autism and what it is to be autistic, but a reconceptualisation of autism theory and related practice. Perhaps the most pernicious misrepresentation that has come to define historical conceptualisations of autism is that autism can be fundamentally viewed as a pathological deficit in sociality and social being. Ever since the earliest theoretical musings of Kanner and Asperger, autistic people have been described using a ‘machine-like metaphor’ (Milton, 2014), somewhat situated outside of social life and influence. To this day, diagnostic tools and practice are still embedded in this way of framing autistic people (Timimi et al., 2019), and yet this framing has come under intense scrutiny and criticism from autistic people (and beyond)—my own

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conceptualising and coining of the ‘double empathy problem’ (Milton, 2012) being a case in point. Here autistic people are described as fully social beings, and the social disjuncture between autistic and non-autistic people is framed as a mutual, interactive, and socially situated issue. In recent years there has been growing empirical evidence to support this idea that the theory of autistic mind often held by non-autistic people can sometimes leave a lot to be desired. If autism is not to be seen as primarily a ‘social disorder,’ then what exactly is at the core of the autistic experience? Many would suggest one should look at autistic cognition as key to the autistic difference. Traditional theories of autistic cognition, such as executive dysfunction theory, have suffered similarly to notions of a deficit in theory of mind, by seeing autism only in terms of a pathological deviance from expected norms of development. Alternative conceptualisations have been proposed by autistic scholars, one example being that of monotropism (Murray et al., 2005), which has at its foundation the autistic use of interest and attention. Both the ‘double empathy problem’ and monotropism theory have also found parallels in more general theory from the cognitive sciences (Bervoets et al., 2021). Alongside such developments in how we think and talk about autism, has also come the realisation of what has been missed. Although the sensory experiences of autistic people do appear throughout the history of clinical descriptions of autism, it was not until the most recent iteration of theDiagnostic and Statistical Manual of Mental Disorders (DSM) that sensory differences were added to the diagnostic criteria. Thought of in the past as neither unique to autism nor explanatory of autistic ways of being, such differences are now taking up their rightful place at the centre of accounts and practices. Despite the successes of autistic people and the broader neurodiversity movement, the power within the autism world is still held by parent-led organisations and professional onlookers. Yet, as the last chapter of this book attests to, the contested playing field has become more fraught. There has also been a significant pushback against the successes of the neurodiversity movement. Neurodiversity itself is often misrepresented, and one could say manipulated, as what autistic philosopher Robert Chapman has described as ‘Neurodiversity-Lite,’ where the language of the neurodiversity movement is co-opted. There have also been calls from parent-led lobby groups for the use of the category of ‘profound autism.’ Despite the lack of coherence in this term and how it could be applied to

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anyone’s benefit in practice, it is being used to try and push back against participatory efforts within autism research. As Mitzi Waltz has so eloquently described towards the end of this book, the contested nature and politics of autism will continue. However, the voices of autistic people are now a part of the lexicon and landscape of the autism world, and these voices will not be going away anytime soon. They will only become stronger in their influence. In recent years we have also seen collaborations between autistic people, parents and professionals, often with autistic people occupying key roles in the development of campaigns, projects and events. It is not only autistic people who can share similar ideas regarding a socially situated model of disability and embodied diversity. It is perhaps in such formations that a new politics of autism can begin to emerge. University of Kent, Kent, UK

Damian Milton

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Index1

A ABA, see Applied Behavioural Analysis Abberley, Paul, 78 Abraham, Karl, 47, 48, 65 Acquired epileptic aphasia, 9 Affective labour, 228 Aichhorn, August, 46 Allison, Helen Green, 123–125 Al-Razi, Abu Bakr Zakariyya, 18 American Orthopsychiatric Association (AOA), 45, 46 American Psychiatric Association (APA), v, 55, 141, 143, 145, 211 Anders, Thomas F., 84 Anti-seizure medication, 9 Applied Behavioural Analysis (ABA), 70, 105–110, 117, 127, 133, 136, 138–141, 148, 149, 156–158, 160, 190, 191, 213 abuse and, 108 aversives and, 108

class and, 109 ethnicity and, 109 gender and, 109 The Arc, 189, 190, 192, 198 Armstrong, David E., 44, 159 Arnold, Laurence, vi, 193, 194, 197 Asperger, Hans, 47, 54–58, 61, 67, 68, 74, 145, 175 Asperger syndrome, 169, 170, 174, 175, 178 Asylums, 30, 35, 36 for children, 32 moral panics and, 43, 45 socioeconomic influences on, 32 See also Autism, institutional care and; Subnormality hospitals Attachment Disorder, 92 Attachment theory, 92 Attention deficit hyperactivity disorder (ADHD), 13 Attwood, Tony, 147

 Note: Page numbers followed by ‘n’ refer to notes.

1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 M. Waltz, Autism, https://doi.org/10.1007/978-3-031-31015-7

275

276 

INDEX

Augmentative communication, 140 Australia, autism in, 128, 130 Autism, 57 advantages of, 13 in ancient Greece, 15 anti-vaccination movement and, 163 in Arabia, 18 asceticism and, 14 in Babylonia, 14 behaviourism and, 69–70, 109, 157 biomedical theories, 77, 206, 225 ‘biomedical treatments’ and, 158–160, 163 case studies of, 59, 64–68, 76 changeling myths and, 20, 171 charity discourses of, 123, 124 charity narratives of, 178, 197 in China, 18 class and ethnicity, 36, 73, 125, 145 cognitive theories of, 111, 147, 239 colonialism and, 146 comorbid conditions, 12 developmental neuropsychiatry approaches to, 139 diagnosis of, 23, 34, 57, 100, 134, 141, 209 diet and, 18 in early Christianity, 15 in early Islam, 15 in early Judaism, 14 education and, vi, 64, 77, 95, 105, 107, 111, 155, 164, 186, 190, 197, 205, 225, 228 electroconvulsive therapy (ECT) and, 114, 139 epidemiology of, 142, 143, 212 ethnicity and, 74 in Europe, 20, 21 families and, 30, 54 film, television and literary representations of, 165–168, 170, 172, 174, 175, 178

gender and, 67, 145 genetics and, 12, 203, 204, 206, 208–220, 222, 224–226, 228, 230n7 herbal remedies and, 18, 19 hunter-gatherer societies, 12 in India, 14, 18 ‘Indigo Children’ and, 117 infanticide and, 15 institutional care and, 22, 107, 213 insulin shock and, 114 Internet and, 20, 58, 134, 158, 176, 186, 188, 193 and Islam, 20 LSD and, 113, 114 medical concepts of, 71 medical ethics and, 208, 209 medicalisation of, 196, 224, 228 medical model of, 77 medication and, 73, 112, 114, 127, 139, 148, 163, 209, 227 metaphors of, 123, 130, 168, 169, 175, 176, 178, 197 in the Middle Ages, 17, 18 monasteries and, 18 mothers and, 90, 128, 142 narratives of, 178 negative portrayals of, 165, 169 neoliberalism and, 96, 164 ‘New Age’ concepts of, 115–117 New Age ideas about, 115 parent-advocates and, 135, 157 parent narratives of, 127, 129, 133, 134 parent-researchers and, 136, 155 parents and, 63, 85, 95, 96, 123, 124, 127, 129, 134, 149, 174 parent-therapists and, 136, 172 post-traumatic stress disorder and, 227 prehistoric era, 11 prenatal genetic testing and, 225

 INDEX 

prevalence of, 142, 149, 168, 196, 204, 211, 216 psychoanalytic theories of, 90 psychological concepts of, 58, 76, 77, 137 psychological theories of, 48, 76, 78, 104, 115 religious concepts of, 11, 17 religious notions of, 16 in the Renaissance, 17 research priorities in, 223 in Roman empire, 16, 19 seizures and, 14, 18, 107, 148, 212 self-stimulating behaviours (stimming) and, 48 sensory-perceptual differences and, 140 socioeconomic change and, 96 socioeconomic influences on concepts of, 21, 29, 35, 132 spirit possession and, 117 supernatural concepts of, 17, 19 supernatural notions of, 20, 25 therapy subcultures and, 159, 161, 176 treatment of, 11, 14, 15, 19, 46, 58, 64, 73, 75, 76, 109, 116, 140, 141, 159, 160, 163, 164, 190, 209, 221, 227 vaccination and, 162 vaccines and, 76, 162, 213, 214 visual processing strengths in, 148 witchcraft allegations and, 17 Autism Act 2009, 194, 220 Autism CARES, see Autism Collaboration, Accountability, Research, Education and Support (CARES) Act Autism CARES Act of 2014, 219, 224 Autism Collaboration, Accountability, Research, Education and Support (CARES) Act, 205

277

Autism Diagnostic Interview (ADI, ADI-R), 144 Autism Genetic Resource Exchange (AGRE), 213, 215 Autism Genome Project, 216 ‘Autism Industrial Complex,’ 126 Autism Research Institute (ARI), 161 Autism Society Canada, 189 Autism Society of America (ASA), 138, 142, 143, 189, 195 Autism Speaks, 178, 189, 190, 195, 196, 215, 216, 219, 225, 226 Autism spectrum, v, vii, 13, 14, 24, 31, 33, 34, 42, 44, 105, 107, 114, 145, 169, 228, 229 Autism-L, 161, 186 Autistic, v–vii, 6, 12–14, 16–18, 24, 34, 35, 44, 58, 63, 65, 67, 69, 72, 75, 83, 84, 91–93, 95, 103, 106–110, 112, 114, 117, 117n3, 121–125, 127, 128, 133, 136, 137, 139–143, 145–148, 155–157, 159, 160, 162–164, 166, 167, 169–178, 185–199, 203–205, 207, 208, 212–216, 219–227, 229n1, 229n2, 237–240 adults, vi, 67, 76, 132, 141, 149, 160, 172, 173, 178, 185–189, 193, 194, 196, 198, 199, 203, 206, 209, 213, 221, 222, 224, 225 cognition, 147, 239 culture, v, 186, 189, 197 disorder, 57 spectrum disorders, 127 symptoms, 9, 74, 90, 93 Autistic Network International (ANI), 187, 188, 237 Autistic Self-Advocacy Network (ASAN), 194, 195, 220 Axline, Virginia, 85–90, 111

278 

INDEX

B Baron-Cohen, Simon, 13, 147, 203, 222 Bedlam, 30, 99–117 Behaviour, 7 Behavioural disorders, 45 Behaviourism, 69–70, 99–117 parents and, 175 Behaviourists, 69, 70, 104–109, 111, 112, 157, 158 Bender, Lauretta, 113, 114 Bettelheim, Bruno, 46, 75, 76, 83–85, 88, 90, 92–95, 103, 110, 129, 136–139, 141, 142, 156, 159, 168, 185 impact of, 84 Blair, Hugh, 21, 22, 30 Bleuler, Eugen, 46, 47, 57 Bowel problems, 7 Bowlby, John, 46, 49, 92, 146 Brother Juniper, 17 C Calomel, 7, 8, 10n2 Camberwell Register, 143, 146 Cameron, Eugenia S., 61 Canadian American Research Consortium ASD Genetics of Autism Spectrum Disorders project (CARC-ASD), 217 Cave art, 13 Chabasinski, Ted, 114 Changeling, 19, 20, 169 Chelation, 160, 163 Chemical castration, 163 Child development, 23, 34, 38, 44, 45 Child Guidance movement, 35, 44–47, 53, 61, 64, 85–90, 94 class and, 85, 89 diagnosis and, 48

Childhood, v, 19, 31, 37, 44–47, 53, 63, 65, 74, 84–87, 90, 92, 107, 109, 141, 142, 167, 172 Childhood Autism Rating Scale (CARS), 144 Childhood schizophrenia, 83, 142 Child psychiatry, 53, 54, 88 Child psychology, 53, 77, 86, 87, 104, 107 Children, 32 institutionalisation of, 32 Child study, 86, 87 China, autism in, 178 Chomsky, Noam, 70 Chromosomal syndromes, 72 Clements, John, 100, 102–104, 117n1 Cognitive profile, 146–150 Coles, Robert, 78 Combating Autism Act, 224 Combating Autism Act of 2006, 205, 216, 218–220 Combating Autism Act of 2011, 205 County Asylums Act, 32 Creak, Mildred, 144 Cretinism, 24 Cure Autism Now (CAN), 195, 196, 213, 215 D Darwin, Charles, 35, 36 Dawson, Michelle, 156, 157, 190–193, 197 Defeat Autism Now! (DAN), 161, 162 Degeneracy, 36, 37, 40–42, 45, 46 Degeneration, 100 Dehumanisation, 108, 109, 168, 191, 207 Deinstitutionalisation, 31, 117n2, 140, 149

 INDEX 

Dekker, Martijn, 188 Deprivation, 48, 92, 146 Developmental disabilities, 31, 32, 36, 39–41, 48, 110, 113, 117n2, 123, 158, 189, 190, 209 Developmental scales, 87 Diagnostic and Statistical Manual of Mental Disorders (DSM), v, 141, 239 DSM-II, 142 DSM-III-R, 145 DSM-IV, 145, 212 Diagnostic Interview for Social and Communication Disorders (DISCO), 144 Dickinson, Dr William Howship, 1, 2, 4–9, 9n1, 33, 44 Disability film, television and literary representations of, 168, 171, 175, 177 forced sterilisation, 36 (see also Eugenics) immigration laws and, 36 medical model of, 77, 130, 134, 204 religious attitudes towards, 17, 39 rights, 193, 212, 228 rights movement, vi social model of, 78, 165, 192, 193, 196 stigma and, 24, 41, 42, 130 superstition and, 2 Disabled, 5, 9, 12, 18, 20, 22, 30, 31, 33, 35–37, 42, 43, 55, 56, 75, 86, 100, 103, 106, 109, 114, 121, 122, 125, 126, 132, 136, 140, 141, 164, 166, 168, 170, 171, 175, 177, 192, 193, 196, 198, 209, 221, 228, 229n1

279

confinement of, 17, 22, 24, 30 segregation of, 17 Dolnick, Edward, 84, 85 Doman-Delacato method, 127, 141, 157 Down syndrome, v, 33, 72, 195 Down, Dr John Langdon, 33–35, 44 Drugs, 73, 77, 112–114, 163, 223 DSM-II, 142 DSM-III-R, 145 DSM-IV, 145, 212 E Earlswood Asylum, 33 Echolalia, 61, 63, 143 Education, 23 Education (Handicapped Children) Act, 140 Education for All Handicapped Children Act (1975), 126, 140 Eighteenth century, 11, 21, 22, 31 Eisenberg, Leon, 142 Electroconvulsive therapy (ECT), 113 Electroencephalography (EEG), 39, 148 Ely Hospital, 99, 106, 117n1, 121 Ely Report, the, 101, 102 Enlightenment, the, 9, 11–25 Epilepsy, 6, 7, 9, 12, 14–16, 18, 32, 35, 36, 39, 47, 148 See also Seizures Eugenics, vi, vii, 36–38, 55, 56, 86, 197, 204, 220–222, 227 diagnosis and, 56 institutionalisation and, 37 murder and, 55, 56 race and, 36 sterilisation and, 56 Evans, Gwen, 67 Executive functioning, 147

280 

INDEX

F Families for Early Autism Treatment (FEAT), 110, 148 Feeble minded, 37, 41, 42, 53, 86 Feinstein, Adam, 54, 57, 66, 75, 76, 111, 115, 142 Folklore, 11, 19 Folk myth, 19 Fölling, Asbjörn, 71 Folstein, Susan, 143 Foucault, Michel, 16, 17, 43, 57 France, autism in, 76 Frankl, George, 61 Freud, Sigmund, 35, 38, 47, 65, 92 Freudian, 47, 57, 65, 66, 71 Freudian psychology, 75 Frith, Uta, 21, 58, 68, 111, 116, 139, 146, 147, 155, 224 Fromm-Reichmann, Frieda, 88 G Galen, 19 Galton, Sir Francis, 36, 37 Genetics, 12, 35, 37, 40, 63, 71–73, 77, 96, 143, 171, 199, 203–229, 229n2, 230n7 ‘Genie,’ 107 Genomics, 209 Gladys, Groves, 89 Global South, diagnosis in, 145 Gould, Judith, 143, 146, 187 Grandin, Temple, 65, 142, 174, 187 Gray, David E., 128 ‘Great Confinement,’ the, 43 Great Ormond Street Hospital, 1, 9n1, 10n2 Greenfeld, Karl Taro, 107, 133 Greenfeld, Noah, 107, 133 Grinker, Roy, 13, 14, 95, 142 Groves, Ernest, 89 Guthrie, Robert, 71

H Hall, G. Stanley, 86 Happé, Frances, 147 Heilpädagogik, see Special education Hermelin, Beate, 139, 146 Holding Therapy, 116 Holy fools, 17 Hospitalism, 48, 49 Human Genome Project, 211 Human potential movement, 115 Hundley, Joan Martin, 130 I Idiot savant, 34 Independent Living on the Autistic Spectrum (InLv), 188 India, autism in, 95, 178 Individuals with Disabilities Act (IDEA), 126 Industrialisation, 29 Institute of Psychiatry (IoP), 113, 137, 139, 146 Institutional care, 22, 43, 77, 107, 213 Institutionalisation, 31, 34, 36, 41–44, 48, 64, 75, 77, 88, 99, 105, 113, 122, 123, 131, 134, 167, 173 abuse and, 33, 36, 69, 100, 113, 114, 133 class and, 146 diagnosis and, 47 eugenics and, 56 institutions, 40 socioeconomic influences on, 42 Intellectual disability, 12, 16, 19, 23, 24, 32, 35–37, 44, 47, 58, 59, 71, 72, 87, 100–102, 107, 121, 140, 147, 149, 171, 173, 192, 194, 196, 198, 205, 221, 227, 230n4 IQ tests, 87 Itard, Jean-Marc Gaspard, 22–24, 39–41

 INDEX 

J Jackson, Luke, 175 Johns Hopkins University, 54, 86 Jones, Kathleen, 53, 85, 86, 89 Jordan, Rita, 149 Journal of Autism and Developmental Disorders (JADD), 143 K Kanner, Leo, 24, 53–66, 68, 69, 73–76, 88, 91, 92, 94, 103, 107, 108, 138, 142–144, 166, 238 Kanner’s autism, 58, 92 Kaufman, Barry Neil, 116 Klein, Melanie, 47, 48, 65, 68, 76, 90, 92, 93 object relations, 93 Kolvin, Israel, 142 Kraepelin, Emil, 46, 47 Kushner, Howard, 39, 40, 57, 71 L Latin America, autism in, 76 Lawson, Wenn, 197 Learning difficulties, 12, 24, 33, 34, 42, 43, 71, 100, 102, 103, 108, 166 Lissner, Kathy, 187 Lorna Wing Centre, 145 Lotter, Victor, 142 Lovaas Institute West, 105 Lovaas, Ole Ivar, 69, 103–110 Feminine Boy Project, 109 M Madhouses, 31 Mahler, Margaret, 90–93 Symbiotic psychosis, 91 Maudsley Hospital, 102, 103

281

Maurice, Catherine, 108, 133 Medical model of autism, 155, 157 Medical model of disability, 77, 133, 134, 204 Medical profession, 5 Medical research ethics, 207 legislation and, 211 Medicinal herbs, 11 Mental hygiene movement, 44 Mental illness, 7, 24, 31, 32, 36, 37, 40, 43, 46, 68, 73 Mercury chloride, 7, 8, 10n2 Mesibov, Gary, 110, 111 Metabolic disorders, 72, 77 Meyer, Adolph, 86, 87 Meyer, Mary Potter, 88 Milieu therapy, 46 Milton, Damian, 188, 189, 204, 238, 239 MMR vaccine, 162 Modern medicine, 6, 16 Monotropism, vi Montessori, Maria, 24, 41 MSSNG project, 219, 221 Mutism, 143 Mutism, selective, 54 N Nadesan, Majia Holmer, 44, 87, 93 National Alliance for Autism Research (NAAR), 195, 212, 213, 215 National Autism Plan for Children (UK), 216 National Autistic Society (NAS), vi, 121, 123–125, 137, 138, 144, 145, 193–196, 225 ‘I Exist’ campaign, 194 National Database for Autism Research, 218 National Institute for Mental Health, 91

282 

INDEX

National Institution for DeafMutes, 23 Ne’emen, Ari, 194, 195, 197, 214, 220 Neural connectivity, 214 Neurodevelopmental, 83, 159 Neurodiversity, vii, 170, 203, 212, 215, 228, 237–239 New age, 20, 116, 117 Nineteenth century, 5, 20, 22, 25, 30, 31, 36, 39, 42, 87 Non-verbal, 8 Normalcy, 16, 44, 77, 108, 128, 129, 132, 157, 168, 229 Normalisation, 140 O Occupational therapy, 24, 42, 73, 140, 141 O’Connor, Neil, 139, 146 Oliver, Mike, 77, 78, 84, 123 Operant conditioning, 23, 70, 105 Applied Behavioural Analysis (ABA); Behaviourism Orthopedagogy, 47, 48 See also Special education P Park, Clara Claiborne, 129, 134, 143 Parker, Beulah, 93 Pathographies, 127 Pattern recognition, 12, 169 People First, 117n1, 192, 194 Phenylketonuria (PKU), 71, 72, 127 Physical therapy, 24, 73, 140, 141 Piaget, Jean, 45 Picture Exchange Communication System (PECS), 141 Play therapy, 75, 84, 111, 112 Porter, Roy, 17, 21, 24, 31

Prisons, 31 asylums and, 31 developmental disabilities and, 32 mental illness and, 31 Prosopagnosia, 188 Psychiatry, vi, 24, 38, 39, 53, 54, 57, 67, 71, 73, 87, 112, 124, 140, 161, 191 biological, 77 child, 87, 88 orthomolecular, 138 Psychology, 25, 35, 36, 38–40, 45, 46, 53, 57, 59, 69, 70, 83, 84, 86, 87, 89, 102, 104, 107, 111, 115, 124, 137, 146, 155, 157, 161, 186, 224 behaviorist/behaviourist, 69, 104, 224 child, 87, 104 Freudian, 65, 69, 75, 83, 90, 155, 224 humanistic, 115, 116 industrial, 70 supernatural concepts and, 25, 38 Psychometric intelligence tests, 42 Psychotherapy, 46, 83, 88, 94, 110, 111, 123, 139, 142, 143, 161 Pullen, James Henry, 33 Pullen, William, 33 R Rain Man, 172 Religious belief, 11, 17 Rimland, Bernard, 85, 112, 124, 136–140, 155, 156, 161, 173, 207 Robert Zaslow, 116 Robison, John Elder, 225 Romantic primitivism, 17 Royal College of Physicians (RCP), 6, 208 Russia, 41, 75, 76

 INDEX 

Russia, autism in, 74, 75 Rutter, Michael, 103, 104, 111, 137, 139, 142–144, 146, 208–222 S Sacks, Oliver, 84 Sanger, Margaret, 37 Savant syndrome, 13 Schizophrenia, 46, 57, 58, 63, 73, 83, 88, 92, 142, 143, 167, 176, 213 childhood (see Childhood schizophrenia) Schizophrenogenic mother, 88 Schmidt, Vera, 41 Schopler, Eric, 95, 110, 143, 144, 159 Secretin, 163 Séguin, Edouard, 24, 41 Seizures, 7–9, 14, 18, 37, 38, 107, 148, 212 See also Epilepsy Self-advocacy, 189, 193–195, 197, 198, 211, 220, 225 Sensory differences, 23, 239 Sensory impairments, 32 Sensory integration, 23, 24, 127, 140 Sensory-perceptual differences, 91, 187 Sensory-perceptual issues, vi Serotonin, 112, 115 Seventeenth century, 10n2, 11, 17, 45 SFARI, see Simons Foundation Autism Research Initiative Shaman, 13 Shattock, Paul, 6, 9n1, 72, 136 Sign language, 18 Silicon Valley Effect, 205 Silverman, Chloe, 84, 136 Simons Foundation Autism Research Initiative (SFARI), 216 Sinclair, Jim, 187–189, 237 Skinner, B.F, 69, 70, 105, 108

283

Social Darwinism, 35–37 Social model of autism, 131, 193 Social model of disability, 78, 165, 192, 196 social role valorisation, 135 Son-Rise, 117 South Korea, autism in, 95, 178 Special education, v, vi, 24, 35, 41, 42, 48, 64, 74, 77, 99, 101, 104, 105, 107, 121, 124, 126, 130, 136, 140, 143, 149, 163, 179n1, 205, 213, 223, 225, 228 parents and, 126 Spectrum10K study, 203, 221, 226 Speech therapy, 18, 42, 73, 77, 105, 140, 141, 149, 223 Spirit possession, 20 Spitz, Rene, 48 Stereotypical behaviours, 60 Stigma, 24, 35, 41, 42, 123–125, 127, 128, 130, 133, 137, 156, 157, 192 Subnormality hospitals, 99, 101 Sukhareva, Grunya, 74 Symbiotic psychosis, 91 T Tavistock Clinic, 92 TEACCH, see Treatment and Education of Autistic and related Communication handicapped CHildren Theory of Mind, 147, 239 Therapist-as-priest, 112 Tourette syndrome, 37, 39, 40, 59, 61, 63, 71 Treatment and Education of Autistic and related Communication handicapped CHildren (TEACCH), 110–111, 117, 136, 144, 148, 149, 159, 160 Tréhin, Paul, 13

284 

INDEX

Trephination, 11 Triad of impairments, 143–145, 187 Triplett, Donald, 60 Tustin, Frances, 64, 90, 92, 93 U UCLA Neuropsychiatric Institute, 104 Universal grammar, 70 University of Vienna, 47, 54 V Victorian, 9n1, 30, 35, 44, 85 Victorian England, 2, 29 Victorian era, 1, 5, 16, 29, 85 Vygotsky, Lev, 41 W Wakefield, Andrew, 162, 163 Watson, John B., 69

Weak central coherence, 147 Welch, Martha, 116 The Wild Boy of Aveyron, 23 Williams, Donna, 187, 238 Willowbrook scandal, 102, 113 Wing, Lorna, 111, 113, 136, 137, 139, 140, 143–146, 155, 187, 224 Winnicott, D.W., 93, 95 Wolfensberger, Wolf, 135, 164, 192 Workhouses, 22, 29–49 Wylie, Philip, 94 Y Young Autism Project, 105, 106, 108 Z Z-Process, 116