Current Issues in Stuttering Research and Practice 0805852026, 9780805852028

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ISSUES IN STUTTERING RESH~ ~~CH AND PRACTICE cu·~~~· H~NT

- - Edited by

NAN BERNSTEIN RATNER University ofMaryland

JOHN TETNOWSKI University ofLouisiana at La/ayette

~ 2006

LAWRENCE ERLBAUM ASSOCIATES, PUBLISHEllS Lo11don Mahwah, New Jersey

j Can1era ready copy for this book was provided by the editors.

Copyright © 2006 by Lawrence Erlbaum Associates, Inc. All rights reserved. No part of this book may be reproduced in an}' forn1, by photoscat, mic1oforrn, retrieval system, or any other means, \\11thout prior written permission of the publisher. Lav.Tencc Erlbaum Associates, Inc., Publishers 10 Industrial A\·ent1e Mahwah. New Jersey 07430 www. erlba u1n.con1 Cover clcsign by Kathryn Hol.tghtaling Lacey

Library of Congress Cataloging-in-Publication Data Current issues in stuttering research and practic~./ edited by Nan Bernstein Rat11er. John 'letnowski. p. c1n. Includes bibliographical references and index. ISBN 0-8058-5201-8 (cloth : alk. paper) ISBN 0-8058-5202-6 (pbk. : aJk. paper) I. Stuttering. I. Ratner, Nan Bernstein. RCf contril1utors to tl1e 2003 ASHA S1)ecial Interest Division 4 (Fluency ai1d Fluency Disorders) Leadersl1i1) Conference. Tl1e Steering Committee of tl1e Division for 2003 consisted of Larry Molt (Coordinator), ~ob Quesal (Associate Coordinator), Cl1ar Bloom, Bill Murphy and Scott Yaruss. We would like to additionally thank tl1e program chairs for tl1e Leadership Conference (Bob Quesal and Scott YarLiss), as well as members of the ASHA staff who helped to make the meeting possible, particularly Michelle Ferket1c. In preparing this sec of proceedings, the Division invited one contributor not on cl1e original co11ference program to submit a chapter. Additional heartfelt cl1anks are also due to Heather Barron, who ably and patiently served as our camera-ready compositor, and to Cathleen Petree of Lawrence Erlbaum Associates for her continued support of Special I oterest Division conference proceedings. Proceedi11gs from tl1e sale of this volume support ASHA's Special Interest Division 4. - Natl Ber11ste1t1 Ratner and john Tett1oivski

v

CONTENTS

1.

Acknowlcdgme11ts

v

Stuttering Treatn1e11t in the New Millen11it1m: Cl1anges in tl1e Tradicio11al Parameters of Clinical Focus

1

Nan Ber11steit1 Ratner & ]oh1'l A. Tetnowski

2.

Co1nmunication-Emotional Model of Stuttering

17

E,d u1c1rd G C11tt1re, Tedra A. Walden, Hayle_y S. Arnold, Corrin G. G1·a/;a1n, Kia 1V. Hartfield, & fan Karrass

3.

An Evidence-Based Practice Primer: Implications and

47

Challenges for the Treatment of Fluency Disorders A1·/e11e A . Pietranton, Ph.D.. CCC-SLP

4.

Measurement Issues in Fluency Disorders KenrietJ; 0. ::,·t. Lottis

61

5.

Early Stuttering: Parent Counseling

87

Nicoli1ie G. Anzbrose, Ph.D.

6.

Treatment of Very Early Stuttering and Parcnt-Aclministered Therapy: the State of the Art

99

Nan Ber1zstei11 Rat11er & Barry G11itar

7.

rfherapcutic Change and the Nature of our Evidence: Improving Our Ability to Help

125

Walt Marining, Pl;.D.

8.

The Treatment of Stuttering: Fro1n tl1e Hub to the Spoke

159

Catl;erine 5i. Montgornery •• vu

• •• VUl

9.

CON1"ENTS

Technical Support for Stuttering Treatment

205

Klt1as Bt1kker

10.

Neuropl1armacology of Stuttering: Concepts and Current Findings

239

Chris(.y L. l11dlow

11.

The Role of Self-Help/Mutual Aid in Addressing the Needs of Individuals Who Stutter

255

Lee Reezies

Author Inclex

279

Subject Index

290

Stuttering Treatment in the New Millennium: Changes in the Traditional Parameters of Clinical Focus Nan Bernstein Ratner Utz1versity of /'rlaryla11d

John A. Tetnowski U t1i1•errity of Lo11isiana at LafaJ•ette

A while back, rhere was a car commercial that boasted, "This is nor your father's Oldsmobile." As we enter the new millennium, the same might be said of stuttering: from multiple perspectives, 01tr view of stuttering, sturtering treatment, and appropriate preparation for rhose who provide stuttering rrearment is cl1anging. In this chapter, we discuss some challenges that face our discipline, to set the chapters that follow into current context.

Is there a growing disconnect between what SLPs actually do and what we think they do? If one goes to the Internet to Ask J eeves'' , "What do speech patl1ologists do?", the top five answers might nor seem surprising. According to the U.S. Department of Labor, Bureau of Labor Star1stics:

Speech-lar1g11age pathologists u ork with people u·ho cannot 1tzake speech sounds. or cannot nzake thenz clearly; those with speech rhyth1n a1td fl11ency proble1ns, s11ch as stttttering; people with voice q1tality jJroble1ns, s11ch as inappropriate pitch or harsh voice; those 111ith proble111s 11nderstanding 1

and prod11cing lar1g11age; those who wish to ittiprove their co1J21nunication skills by 1nodify1r1g an accent; and those ivith cognitive co11trn11nication 1

BERNS'! f:IN RATNER & TETNO\Xi'SKI

2

inipairr1ients, sttch as attention, 1ne1nory, and proble111-solving disorders. They also work u1ith people who have oral 1notor proble1ns cartsing eating and sivallowing difficulties. (U.S Department of Labor, retrieved from www.bls.gov/oco/pdf/ocos099.pdf) Speech Pathology Australia answers the question, "Who do speech patl1ologisrs work with?" by answering:

A speech pathologist's ttiorkload might inc!ttde {We provide here the first five ar1swers}: • giving advice on feeding to a 1nother who has a baby u ith a cleft palate; • working in a child care centre with a gro11p ofchildren who are hare! to 11nderstand; • working ivith a school child who can't understand what his teacher says; • working with a high school student who sttttters; • retraining a teacher who constantly loses her voice to 11se it 1nore effectively ... (Retrieved from www.speechpathologyaustralia.org.au/library/ 1

1 l_FactSheet.pdf)

To provide some sense of how stare speech-language-hearing associations view the profession, we went ro the Illinois Speecl1-LanguageHearing Association (in tribute to Bob Quesal), and found an answer to the following question, "What Do Speech-Language Pathologists Do?":

Speech-lang11age pathologists are specialists trained to ez al1tate, identi/Y and rernediate disorders of com1n1tnicatior1 and su allou•ing. Speech-lang11age pathologists work with people of all ages, front infa11ts to elderly. Speech-lang11age pathologists provide treatme1it to im/Prove lang11age. voice. stztttering. articulation, Jrte?nory and swallozving. [Note tl1e order of the disorders.} 1

1

(Illinois Speech-Language-Hearing Association, retrieved from www.ishail.org) A consumer-oriented pediatric healrb web sire sponsored by the Pfizer company (Kidspeak) informs the public abour what speech-language pathologists do:

These healthcare professionals are educated aJ1d trai11ed to help patierzts 01!erco1ne speech, lang1tage, and sivalloiving disorders. {Childre11 ll'ho see speech'- lang11age pathologists nzay or 11zay not have heari11g proble111s.} These specialists also help treat stuttering, i1oice, and pro111111ciation disorders. (Retrieved from www.kidsears.com/kidspeak.html) Tl1e same sire promi11ently addresses the most common questions parents pose, including, "What should I do if my cl1ild stutters?"

STUTTER.IN(, TRL;A1'~ff:N1 JN THb NEW MILLENNIUM

3

Finally, our professional website (asha.org), in the area of the site providing 1nformat1on for prospective students, answers "Frequently Asked Questions about the Professions":

Sonze Basic Facts ... Speecl1-L1ng11age Pathologists help those who strttter to itzcrease their fl1te11cy; help people who have had strokes or experienced brain trautna to regain lost lang11age and speech; help children and adolescents who have lang11age disorder.r to 11nderstand arid give directions. ask and answer questions, cotzvey ideas, i1nproi;e the lang11age skills that lead to better academic perfonrtance; co11nsel i1tdivid11als and families to ztnderstand and deal with speech and lang11age disorders. (American Speecl1-Lan.g uage-Hearing Association; retrieved from www.asha.org/abouc/news/releases/ fag_careers.htm)

Is

THE ADVERTISING MISLEADING?

The point of what might seem like a tedious exercise in "Googling" is to note that stuttering creacmenr and work with people who stutter are broadly viewed as a primary focus of practice for speech-language pathologists (SLPs). Certainly a consumer seeking information about who to turn to for srutcer1ng treatment is provided wich a sense that fluency is a core professional activity. However, as we note, an emerging problem is the mismatch between perception and the statistics that characterize SLP practice. At the risk of proving the point made by a great anonymous author that, "Numbers are like people; torture them enougl1 and tl1ey'll tell you anything," it is instructive to view tl1e ASHA 2001 Omnibus Survey, specifically the caseload report for speech-language pathologists (American Speecl1-Language-Hearing Association, 2001a). For SLPs in all settings combined, 65% see fluency cases. Tl1is proportion ranked above those who report treating aphasia (27%), dysphagia (37%), and voice (45%). In schools, the proportion of SLPs reporting that they have someone on the caseload who stutters rises to 78%, outranking the disorders just mentioned, as well as Specific Language Impairment (SLI), Pervasive Developmental Disorder (PDD), and children using Augmentative and Alternative Communication (AAC) devices. These numbers seem to provide support for the notion chat stuttering is a disorder that SLPs commonly treat. Bur the numbers combine in interesting ways. In any setting, if the absolute number of individuals seen for particular disorders is queried, the n1ean number of fluency clients seen per SLP falls to the absolute lowest of ail conditions that SLPs treat, at 2.4% of each SLP's

•

BERNSTEIN RATN~H. & TETNOWSKI

4

caseload (schools, 2.5%) of all disorders except "communication effectiveness" (whatever that is ... ). When viewed against caseload statistics, SLPs see more people with hearing disorders than persons who stutter. WHAT DOES ALL THIS MEAN?

An emerging problem with the expanding scope of practice in speech-language pathology (American Speech-Language-Hearing Association, 2001b) is that the lay public expeas SLPs to be able to treat fluency disorders: In job descriptions of SLPs, treatment of stuttering is often one of the top-listed responsibilities. And, in fact, most SLPs in practice do see people in need of treatment for fluency disorders. It is one of the top-ranked disorders seen by ASHA members. However, effective fluency treatment is not a skill that can be learned "on the job," since the absolute number of cases per clinician is among the lowest of all disorders that SLPs see, allowing little opportunity to hone skills. This is unfortunate because several surveys (e.g., Sommers & Carusso, 1995) have shown that stuttering is one of the least understood of all communicative disorders and that SLPs feel less comfortable in treating this disorder than almost any other group. This makes some sense; stuttering is a relatively low-incidence disorder (approximately 1%; Andrews, Craig, Feyer, Hoddinott, Howie, et al., 1983; Bloodstein, 1995). But its effective treatment is complex, as many have noted, and as many of the chapters in this text emphasize. Thus, we have a disconnect between a kind of fiction and reality.

Some emerging realities of'clinical training Popular novelist Tom Clancy once made the comment, "The difference between fiction and reality? Fiction has to make sense." As noted earlier, the reality is that most SLPs are expected to, and can expect to, treat stuttering. But there is an accompanying sense in graduate curricula that it is an uncommon disorder, and thus does not merit a prominent place in the curriculum and clinical training (Yaruss & Quesal, 2002). Tl1e standards for the Certificate of Clinical Competence (CCC) in speech-language patl1ology have progressively loosened the requirements that programs historically impose on their students to obtain clinical and coursework expertise in fluency. These changes have had measurable consequences (Yaruss & Quesal, 2002), and the revised CCCs do insist that programs document the ability of their students to competently provide fluency services. But these standards are amorpl1ous, and their clear implementation is still a matter

STUTTLRIN a trend that questions the nature of effective treatments and the documentation of efficient, successful outcomes following stuttering tl1erapy (Pietranton, chap. 3, this volume). We additionally ask (as we n1easure outcomes), wl1ether such outcomes (and even tl1e basic understanding of what stuttering is) ca11 be linked to a single, comprel1e11s1ve theory that explains tl1is complex disorder (Conrure, chap. 2, tl11s volume). These questions are significant challenges for the 2 lst century. Yet, we are still not even in agreement as co what signifies a valid diagnosis of stuttering (St. Louis, chap. 4, tl1is volume) or what constitutes a successful outcome (Manning, chap. 7, this volume).

How do we get our information today? Clearly, the answers to such questions will form the basis for evidencebased practice 1n fluency disorders that achieves its desired ends. However, if researchers co11verge on diagnostic and tl1erapeutic "best practices," we must still be concerned about how quickly or well tl1is information will reach tl1e practicing clinician. We supposedly live in the "information age," with ever more numerous and enricl1ed so1uces of data. The average home receives l1undreds of television stations, 11or to mention satellite radio in our cars, cellular and satellite telephones on our person at all times, in addition to that greac 1nformat1on source, the Internet. Our access to information is almost limitless, yet how consumers selectively searcl1 011t and interpret this onslaugl1t of information becomes an important challenge. Studies in other professions that have recently endorsed "evidencebased practice" l1ave identified some problems inherent in the multiple potential sources of information that are available to clinicians and patients, as well as concerns about both groups' preferred sources of st1ch information. It is not clear that many practicing professionals possess wl1at we migl1t call "information literacy." For example, Nail-Cl1iwetalu & Bernstein Ratner (in press) 11ote that physicians, nt1rses, and allied healtl1

'

8

Bl'KNS'l l lN RA'l'Nl ·R

& Tt;TNO\\'.' SKI

professionals often obtain information from colleagues, old rexts, and the Internet, ratl1er from rrad1rional, peer-reviewed sources, sucl1 as tl1c professional journals. In particular, both professionals and tl1eir clienrs/parients often begin ci diagnostic or therapeuric inquiry by "Googling." Does the Internet make life easier for the researcher and for rl1e consumer? Or 1s it an unsatisfactory replacement for serious library work and review? A number of issues thwart a simple answer to this question. The presence of paid "ads" that surface in prominent fasl1ion after keyword searches may convince botl1 SLPs and potential consumers tl1at certain proprietary rreacn1ents represent efficac1ot1s and mai11stream solut1011s to the problem of stuttering. The remaining "hits" are no less suspect: tl1ey are likely to contain a mix of personal web pages, tl1erapy vendors, and other nonpeer-reviewed subjective report5, interspersed v.•irh \•alid abstracts of peer-reviewed journal articles and other more reliable sources of "evidence" (Nail-Chiwetalu & Bernstein Ratner, in press). There is no easy solution to the problem of filrering an increasingly large body of information that is increasingly less ''labeled" in terms of scientific value. Clinicians \\ ill need to become ever more expert in keeping up witl1 evolving evidence of !5est therapeutic approache5 while, at the same time, maintain111g a perspective on the types of information that clients are likely to encounter when investigating potential solutions to their symptom complaints. As Bernstein Ratner (200-!) noced, the Internet is likely to provide inforn1acion that is inconsistent witl1 current "best practice" even in the broadest sense f(Jr, tl1ose mugh experience, ho"·ever, emotional rcactivicy• and regulation arc rholtght co exacerbate and maintain instances of stuttering caltscd b)' (2).

Environment

Genetics

D1s·r AL CON 1'RIB UTORS

...,I ••

Speech-I.:anguagc Planning

PROXIAfAL

Producrion

C 0 1~TRIB UTORS

Experience

EXJ\CERBATTON

Emocional Reactivity &. Regulacion

In~tances of

OVERT BEHAVIOR

Sruccering

~--'

1-4~--'

'

20

CONTVRE, WALDEN, ARNOLI), GRAJIAM, lIARTFIELD, & KARRASS

DISTAL, PROXIMAL AND EXACERBATING CONTRIBUTORS

In our opinion, the end-game with any model of stuttering must be stuttering itself. Incumbent on the theoretician, therefore, is the development and explication of some reasoned, motivated account of the events, variables, human characteristics, and so forth that precede, occur during, or follow an instance of stuttering (see Conture, 1990; Yairi, 1997a, for furtl1er description of developmental stuttering, particularly in children). We suggest that it is important to keep one's eye on the prize and not overlook the fact that it is stuttering that differentiates people who do stutter from those wl10 don't. Indeed, such oversight typically Leads us to lose track of whac it is we are crying ro addres.s: Why do people stutter? For previous models of stuttering that made very meaningful attempts to accoL1nt for instances of stuttering, see Bructen and Shoemaker ( 1967) and Kolk and Postma ( 1996). Prior to attempting to address those components that singularly as well as collectively contribute to stuttering, we provide a brief revie\v of current theory of typical speech-language planning and production. Although several models are available for such~ review, we will emplo;• rhac of Levelr and his colleagues (e.g., Indefrey & Levelt, 2000; Levelr. 1989; Levelt, Roelofs, & Meyer, 1999). one of the more widel;· ciced and ofcen experimentally tested models of speech-language planning and production. For example, see Levelt, Roelofs, and Meyer (1999, Fig. 2-1) for a general, graphical depiction of their theory of word production. On average the time course of word production for adult speakers takes abo11t 600 milliseconds (lndefrey & Levelt, 2000), with our findings suggesting thac the speech reaction rime associated with picture-naming responses of preschool children ranges between 1000-1500 milliseconds (e.g., !vfeln1ck, Cont11re, & Ohde, 2003). Within this broad framework. and for the purposes of our current speculation, we are particularly interested in ho\v children who stutter handle and/or develop lexical concepts, lexical items and retrieval/encoding of tl1e pl1onological code associaced \Vitl1 tl1e lexical item. Table 2-1 (adapted from Indefrey & Levelt, 2000, p. 862) makes clear chat cl1ese events, collectively and individually, are very rapid for adult speakers. Here in Table 2-1, we can see some of the possible sires of cerebral localizations and tl1e time windows thougl1t to be associated witl1 various components of word produccion for adult speakers. Again, one is struck witl1 tl1e rapidity of eacl1 of these components of word production as well

c()/\l,\1lJNICA1'H>N-E,\1Cl"J lllNAI. l\11)1·1

TABLE

l)f

Srtl'fTFHJN(~

21

2-l of a11d corlic,1/ regio11s tl1011gl1t lo be i111·olz:ecl i11ith /1rncc:pc • Selection of lexical irem

• Occipital, vencro-mc:duces speech-language ac races beyond ics abilities to do so efficiently, fluencly

24

CONTURF., WALDEN, ARNOLD, GRAHA~f, HARTfolELl), & KARRASS

however, when they "run into" the process of syntactization (e.g., the process by which lexical concepts acquire syntactic categories; Levelt, Roelofs & Meyer, 1999) during rhe second and third years of life. This may create a "collision" that elicits disruptions, hes1tations, and so on, in speech fluency. The confluence of linguistic maturity and increasing complexity of the linguistic components of a child's utterances may create a potent breeding ground for instances of stuttering. By way of analogy, a wobbly three-legged stool may support a 100-lb. individual bur completely collapse under the weight of a 200-lb. person. In other words, genes operate in the context of the environment in which they are expressed, nor as independent, context-free influences. Environmental requirements can and do frequently change. Thus, changing environmental requirements may sometimes adeqttately fit underlying abilities and other times inadeq11ate!y fit underlying abilities. Indeed, in terms of distal contributors, generics may load the gun but the environment seemingly pulls the trigger. Even given the above caveats, there can be little doubt that generics play a role in the onset and development of stuttering (e.g., Ambrose, Cox, & Yairi, 1997; Ambrose, Yairi, & Cox, 1993; Cox, Seider, & Kidd, 1984; Curlee & Siegel, 1997; Howie, 1981~ Yairi, Ambrose, & Cox, 1996). Wl1at is less clear is the nature of generic transmission, the precise genetic and environmental influences that are involved with stuttering, and wl1ctl1er generics play a different role for cl11ldren wl10 recover tl1an for tl1ose wl10 persist. Hopefully, rese~cch during rl1e present decade will bring us mucl1 closer to answering these questions. However, as Yairi and Ambrose (2002) noted, " ... that when a gene (or genes) 1s identified as a factor in a disorder, it may not be kno,vn. at lt·a4it for awhile, what the specific gene actually does: what is it that is inl1er1teN1\L Mc>DfL

r

STUTTER1Nc.

39

ther does it disprove that such difficulties are unrelated to stL1ttering. What is needed, at present, are testable models, sucl1 as tl1at presented in this space, that lead to hypotheses permitting the empirical resting of nontrivial aspects of the model. With a testable model, focused in on a probable var1able(s) tl1at contribute co stuttering, advances in our understanding of developmental stuttering are likely as well as needed. As a result of such descriptive as well as experimental empirical studies, we believe that more than one, but a relatively finite number of, variables will be shown to "cause" stuttering, with some more salient tl1an otl1ers, bL1t with all i11teracting witl1 one a11other and stt1ttering in a myriad of complex but ur1derstandable ways.

Futher empirical studies: Dissociations among subcomponents of speech-language planning Anderson and Contt1re (2000) reported that differences between two standardized measures one of receptive/expressive language and the other of receptive vocabulary were significantly greater for preschool children who stutter than tl1eir normally fluent peers. Bernstein Ratner & Silverman (2000) also found evidence of depressed expressive vocabulary in preschool children who stutter. Whether Anderson and Conture's approach comparing two talker groups in terms of differences in standardized tests constitutes the best approach to "double dissociations" (Bates, Appelbaum, Salcedo, Saygin, & Pizzamiglio, 2003) is of debate. Such dissociation might be seen, for example, when two talker groups (A and B) exhibit differential impairment on two different tasks or tests (1 and 2). For example, talker group A would be impaired on Task 1 bur spared on Task 2 while talker group Bis impaired on Task 2 but spared in Task l. In brief, whether double dissociations in speech-language planning are related co childhood stuttering is presently an open empirical question; however, such imbalances or dissociations have been studied with regard to developmentally language-disordered children who are highly disfluent (Hall, Yamashita, & Aram, 1993) as well as adults with aphasia (e.g., Saygin, Dick, Wilson, Dronkers, & Bates, 2003). Thus, it is intriguing co consider the possibility tl1at at least some children wl10 stutter may exhibit such dissociations. Again, whether children who $[Utter do exhibit such dissociations is an empirical question, but one of seeming relevance to a comprehensive empirical assess-

•

40

CNi"llRE, WALDEN, ARNC)l.0, GRAIJAM, HARTFIELD, & KARRASS

ment of the relation between speech-language planning and childhood . stuttering.

Relation of emotional reactivity and regulation to stuttering Besides difficulties witl1 speech-language planning and production, our model also predicts that there is a connection between emotional reactivity/regulation and exacerbation/maintenance of childl1ood stuttering. Of course, the quantity and quality of sucl1 connections and/or their mere existence is t1nknown. In general, we predict that cl1ildren who stutter will be more highly reactive than children who do not stutter, particularly to moderate and high levels of stimulation. We further predict that children who stutter who exhibit high levels of reactivity will differ from other cl1ildren wl10 stutter 1n terms of various aspects of stuttering. such as freguenC}' and type of stuttering (e.g .• sound !:>yllable repetitions vs. sound prolongations). \'V'hat follows provides some empirical e\·idence with which co assess our speculations regarding emotional reactivity/regulation and cl11ldhoocl stuttering .

....

Empirical evidence for our spect1lation: Emotional reactivity and regulation Those familiar witl1 stuttering, whetl1er fron1 a clinical or researcl1 perspective, will recognize che fact tl1at emot"ons are often discussed in rela, tion to develo1)mental sc11ttering (e.g., Alm, 2004). Indeed, in recent years several em p1rical studies of the cemperan1ental cl1arac ter1stics of children wl10 stutter l1ave been publ1sl1ed (e.g., Anderson, Pellowski. Conture, & Kelly, 2003; Embrechrs, Ebben, Fra11kc, & \'an Je Poel. 2000~ Oyler, 1996; Wakaba. 1997; Wakaba, I1zawa. Gondo, lnquc, & Fujino, 2003). In general, tl1ese findings indicate that cl1ildren \\•l10 srutcer differ from cl1ose \vho clo not stutter 1n specific aspects of their emotional character1st1cs. In specific, children who stutter, wl1en con11,ared co children wl10 do nor. are less adaptive/more reactive to tl1eir en\•ironments and/or environn1ental (f1J.11ge, exhibit l1igl1er levels of sensit1vit}', and seern more likely to 1)ers1st \vith tasks once the task l1as begun. Somewl1at similar resulr5 l1ave been reported w1ch adults, rl1at is, adults \vl10 stt1trer, when compared to ad11lts wl10 do not stutter, have been sl10,vn ro score signifi-

Cc>i\I~tt:NJC:ATlN-Ei\t r H>,AL ML>IJEL ciF STUTTERJN(,

41

cantly l1igl1er on the temperamental trait labeled "nervous" (Guitar, 2003) and 11ave significantly higher trait anxiety (e.g., Craig, Hancock, Tran, Craig, & Peters, 2002). Witl1 rl1e possible exception of Guitar (2003), most of the studies just mentioned have looked at the stable or dispositional aspects of temperament, that is, those temperamental characteristics present in the early years of life that are minimally variable. What these studies of emotions and stuttering have not typically addressed is sit11ationa!ly driven emotional bel1aviors, tl1at is, behaviors that are less than stable, seemingly waxi11g and waning in relation co situational changes and/or demands. In specific, l1ow does the cl1ild who stutters react to situations and what does he or sl1e do to regulate or cope witl1 11is or her reactions? The present writers would like co suggest that these two variables-and their joint effect have significant potential for exacerbating and/or maintaining childhood stuttering. So, although dispositional aspects of emotion may set tl1e overall stage for reactivity towards stuttering, we believe that situationally-related reactivity and regulation are most likely to be associated, dependent on the arousability of a situation and how easily one can cope within tl1e situation. Although the present writers have just begun to assess the relation between emotional reactivity, regulation, and childhood sruttering, earl}' work (Karrass, Walden, Conture, Graham, Arnold, Hartfield, & Scl1wenk, 20()1}) based on relatively large sam1)le of i)reschool children who stutter (ti = 74) and their normally fluent peers (rz -.. 63), indicates cl1at preschoolers who stucrer, when compared to those who clo not stutter, are significantly more reactive, s1gnificanrly less able to regulate their emocior1s, and exhibit significantly poorer atcenr1on regulation. Tl1esc findi11gs suggest tl1at preschool children who stutter are more emotionally reactive co sirt1arional requirements, less .ible to regulate any en1otions tl1e;' do cx1,erie11cc, and less able co flexibly control their attention, for example, sl1ifting their attention from a cl1allenging sr1mul1 co another in cl1c environment tl1ar is less challenging. Taken together, findings suggest that children wl10 stutter exhibit botl1 dis11osicio11al a.s \Veil as situationally-related aspctrs of emotion tl1at may contribute to the problems these children have cstahlishing reasonably fluent s11eech and language. Wl1at 1s not known, bt1c is cl1e focus of our current work, is l1ow the two talker groups cl11ldren who do versus do not stutter res1)011d ro experimental manjpulatio1t~ of emotional

,

42

Cc>N'l URl:, WALDEN, AR.N(JLu, GRAllA~1.

llA1r11·1ULD,

& KARRASS

reaction and regulacion a11N-E,\t and tt:mpt'rament in ind1v1dual~ who sturrerju11rn.7/ oj S/'«(h, wng11age anJ l/t..1,.ing ReJtclY(h, 46. 233-240. Guitar. B ( 1998) ~11111..r111g: An inf(grated apprriat-IJ to 111 nart,rt t.111J lrta/lflflll. B.t.ltimore. MD; \X'ill1.ims & Wilkins Guthrie, E ( 1960) 'J"he />!) tl10/{lf.J oj lranuvg (Rev eel ). Gloutes.rer 1\1 A ~mirh . ' langu n & Bacon. van Lieshout P. 1-ful~rijn, W., & Peters, li . (2004) Searching for the weak link in the speech prnducnon chain of peoplt• who scuccer: a mocor skill approach. In B Maassen, R Kenc, 1-1. Pecers, P van Lieshouc, & W. l lul~cijn (Eds.), S/1"rh 111fJtor control 111 n1Jrnu1/ and di111r,/ere,{ spee:,h (pp. 313-356). OxfocJ , En~land : Oxford Universicy Pr~. Wakaba, Y. (1997 ), Rc.-scan:h nn cemperamenc of sruccering children wich early onsc.·c. In E. C. lieale}' & H . F. r.i. Peters (Eds.), !:>11111tr1ng: Prn(ctdings qf tht :,,,qnJ World c:ongrt!J1 qn f'!N.:n1) CJiior.kri (Vol . 2, pp. 84-8~·) 1'.11mt·gen, The Necht"rlands: Uaiversit)' Press N1Jmegcn . Wl>kaba, Y., lizawa, r.f , Gondo, K .. Int1uc. S., & Fujino, 11. (2003, Augu~t) , Prclin1in,1ry Jlkd) nf e/f«ts of 1;:111f'tr.1111~nt ,barartrristi.s on e.1rl) tkr-elo/111un11Jj"s11111er1ng fhildrrn. Filth Ann11.il lnrtOnt". Ingham , J .C. (2003) Ev1dcnc;e-l>aseJ trt:acmt-oc of i.tuccering: I. Definition and appl1l'"allon ••frJ11n1al of Flutnt) Diwrdcr!, 18(~). l 97 20 ln~cirute of Me:-dic1ne www.iom.edu "' ' Summer Jnscin1te llf Epidem1ology ,mJ The John Hupk1n~ Univt·r,it}' Bloon1berg School of Publu: Healrh B1oscausti1.:s. (2001). ,\fak1n11 h1·,1/1/. ,.in .1t.1/;r: -\ .r111tul .1n,1!)11. nf p.111.111 Ja/tt)' pr.:1::Juo Evidence Rt>porc /Tcchnolo.-;y Assessmcnc . r\ umber •13. AHRQ Publi'-"alion 1'o. 0 l-E058. Jul) 200 l . Agencr for lic-alchcar~ llt>~SLll

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67

egorical, such as male versus female. Typically, there are no assumptions regarding the degree of maleness or femaleness witl1 such categorical measures. The next level is ordinal measures. In rl1is case, there is a sense of more versus less, but the differences between categories are not even. For example, from interviews, we might determine the extent to which stuttering is mild, moderate, or severe. With this ordinal measure, we could rank-order the results from a number of people who stutter, but we cannot assume rl1at the differences between adjacent categories are equal. The next level of measurement involves interval data. In this case, data can be rank-ordered but also have equal differe11ces betwee11 adjacent categories. An example would be 5- or 7-point Likert scale ratings on attitudes toward stucteri11g, assuming that intervals are sl1own as equal. The last level is ratio measurement, which can be rank-ordered, have equal differences between adjacent categories, but additionally, start with a baseline of zero. Frequency of stuttering in percent syllables stuttered (%SS) or stuttered syllables per minute (SS/M) are examples of ratio data. After taking measures, researchers usually need to determine the likelihood their results are due to chance or to the independent influences or variables they have identified. Inferential statistics are used to accomplish this. Ordinarily, different types of nonparametric statistical procedures are used to generalize from data characterized by categorical or ordinal levels of measurement (Siegel, 1956). Parametric statistics can be u.sed to test tl1e significance of the results of ratio level data and most interval data (Schiavetti & Metz, 1997). PRECISION OF MEASURES

Precision refers to the exactness with which something can be measured. Measures should not be reported any more precisely than we can measure them. Can a wristwatch be set to measure milliseconds precisely? Very likely, it cannot. Can a clinician measure the duration of speecl1 segments or pauses precisely with a digital stopwatch that records time in hundredths of seconds~ Again, the answer is "no," because normal ht1man reaction time precludes starting and stopping a stopwatcl1 to measure intervals of time that small. Therefore, it is important that duration measures not be reported in fractions of seconds tl1at represent greater precision than was actually the case. For example, if a clinician measured the duration of a stutter as 5.29 sec with a digital stopwatch, tl1e result should probably be rounded to the nearest half-second) or 5.5 sec.

s·1.

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Lt Morgantown, WV· Populore St. Louis, K. 0, Raphael. 1. 8(21), 4-5; 20 22.

J.,

Myers. F L.• & Bakker, K. (2003) Cluttering updated -\SHA L.'.1Ji:r,

Sr. Lows, K . 0 .. Ruscello, D M .• & Lundeen. C. (1992) Coexistence of communication disorders in schoolchildren. ASHt\ Alonograph1. 27. Starkweather, C. W. (1998) Purposes and concepts related to the development of a resc of fluency. In E. C. Healey & H. P. M. Peters (Eds.), 2nd \Vorld Congress on Fl11e11t) D1.sorder1 proreed111g.r (pp. 442-445). Nijmegcn, The Ncrherlan, F. L. ( 1995 )_Clinical 111anage1nen1 of ch1/clhood st11tler111.~. Austin, TX. Pro-Ed Watson, J. B. (2003). Reimbursement for scuccenog rreacmenc Ace we getong 1tJ Pfrspe1t1ves fin Fl11enry and Fluency 01.lflrders, 13( I), 8-9. W.1tson, J B ( 1987). Profiles of srurrerers' and nonsrutterers' affective, cogn1t1ve, and behavioral commun1cdt10n drticuues Jo11n1al o/ Fluency Di.sorderr. J2. 18H05 Williams, D E ( 1978) Th per minuce of talking rime) Seveney scale of sturcenng Frequency of disfluency types Duration in number of icerac1ons and/or seconds per moment of sruccering Race of speech in word~ or syllables per minute Adaptation Cons1sreocy Anuc1pac1on (prediccion) of scurcering Self-ranng of range of severity S11111erer's Self-Ra11ng of Reac110111 to Speech S1t11ationJ (Johnson. Darley, & Spnescerbach, 195 2) Check!JJJ of S1111Jeru1g Beha1·1ors (Darlc-y & Spriescerbach, 1978) Jou•a Scale of Severity of S11111er111g (Sherman, 1952) Stuttering Prohle111 Profile (Si Iverman, 1980) Speeth S1t11a11on Checkl1rt (llaoson, Gronhovd, & Race, 1981) Percepi1011s of Self Setnantrr 01/ferenttal Task (Kai inowski, Lerman, & Watt, 1987) Crou1e's Protoro/.r (Crowe, Dilollo, & Crowe, 2000) St. Loins Inventory of Life Per.rpecti11e1 and S1111rering (Sc. Louis, 2001)

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Overall Asseis111ent of the Speaker's Experie11ce of St11tter1ng (Yaruss & Quesal, 2002a) Assess111ent Digest and Treatlfltnt Pla11-AdQle1cent and Adu/J Ver1on (Cooper & Cooper, 1985) A1sess111e11t Digest and Treat111ent Plan-Ch11dren1 Ver1on (Cooper & Cooper, 1985) Stocker Probe (Stocker, 1980) K1ddyCAT Con11111fn1cat1on Attitude Test Preschool- Kindergarten (Vanryckeghem & Brutten, 2002) As1es111tent of Fllfency 1n the School-Aged Child (Thompson, 1983) Problet11 Profile for Elt111entary-School-Age Children Who St11t/er Abo111 Talking (Williams, 1978) Phys1c1an's Screening Proredure for Children Who J\1ay Stutter (Riley & Riley, 1989) Checkl11t far Idenuficatzon of Cllfller1ng (Daly & Buroen:, 1999) Naturalness ranngs of speech Tests of articulation Measures of coaruculacion Tests of language (vocabulary/morphology, syntax, semantics, pragmatics) Test and measures of reading Diadochokinesis Rhythmokinesis Measures of respiration Me-.isures of voice Measures of hearing Measures of lateraliry Measures of motor oral moror, gross motor, visual mocor skills Measures of muscle tension Measures of auditory sensation, memory, discriminarion Measures of neuromotor skills or inregriry

Quantitative measures that have been published that permit meaningful normative comparisons or comparison to published data Stutterrng Severity lnllr11111en1 (Riley, 1972, 1994) Syste111at1c Disfl"enry Analysl.l (Campbell & Hill, 1994) The S-Scale (Erickson, 1969) Modified Erirk.son Scale of Co111111un1cation Att1t11der (S-24) (Andrews & Curler, 1974) Perceptions of St11tter1ng lnvenlory (Woolf, 1967) Inventory of Co11111111111tdlio11 A11itudes (Watson, 1987) .... " Fluency Inten11ew (Ryan, 1974) Criterion Test (Ryan, 1974) A-19 Scale for Children Who Stuller (Guitar & Grunes, 1977) Children~r Att1t11des Aho/ft Talking (CAT-R) (De Nil & Brutten, 1991) Ctn111J11111ica1ion A tt1tl(de Teit (Bructen. 1985; Brutten & Dunham, 1989) Self-Efficacy Scaling for Adult Stutterers (Ornstein & Manning, 1985) Se/f-E!ficaCJ Scaling for AdolescentJ \flho Stutter (Manning, 1994) St11ttering Pred1c11on /11str11111ent fRiley, 1981) L'/i }'ears of age, and altl1ougl1 stuttering 1s disti11ct fron1 normal disfluency, tl1ere is great variability in its early expression. Tl1e 011set may be gradual, or it rnay be ~sudden as over a period of hours. It may be mild, moderate, or even severe~ rt may consist of 1)rimarily repetitions, 1)rimarily prolongations, or a combination. Repet1tio11s may contain one or many extra units~ secondary cl1aracteriscics may or may not be present; and cl11ldren may either indicate awareness of tl1e problem \'ery early on or appc-ar oblivious (Ambrose & Yairi. 199-t; Van Riper, 1982). 111stead of dot1bting the parenrs' 1nit1al recognition of stuttering, tl1e counselor can probably confirr11 r1'1eir diagnosis of srtirtering. Perl1aps most importantly, the ne\v ir1formation should con\·ince tl1e clinicia11 char, 1n most c~es, ~)arencs' reports arc quire reliable. Tl1e stutterin.g did nor begin in their ears or in their supposed!)· negatr\e attitt1des. 111 f.tLt, research by Zebrowski a11cl Con tu re.: ( 1989) sl1ows that i)arencs of flt1enc and stttttering children are in very good agreemenr \Vhen rl1ey cire askearenrs played a rolt' in creacin~ or aggravaring initial patterns of srutrering, sucl1 success rares \VOulcl be inconceivable. Tl1e Lidcon1be Pro.~ran1n1e 11as offered tis rl1e opporrt1nity ro bury rl1e misconce1Jrion tl1at adu lt arrent1on co tl1e cl1ild's clistress in spcakin,fS is 1utht'r and child pcC'C'h rares a~ .1 v.1riahlt· 1n stucrering .ind disflul'ncy.)011111.i/ 1/ ,\f>, ch a11,/ ffr.1r1111J. Rt"199). A prt•lirn1narr look .le shume. guilt. anJ scutcerini: In N. licrnsrc111 ll,trner & E. C. I l t~.i.Jcy (Eco: J°"sey-Bass Publ~hers . Murphy. B t l 999) A pttliminary look at shame, b"ll.1 ... anJ stuttering. In N Bcrn~ce1n Ratner & E. C. Healey (Ed5 }. S1r.·r:rr111g f'eJt.arrb """ f>"ai7i,-e: Br1dg1ng 1he gap. t-1:ah\\·ah. NJ : J..a,...·rcncc Erlbaum Assoc1arcs. Neimeyer. R. A o.;. Raskin, J. (2000). c..· 011slrJ1. 188-199. R} .ill, B. P. (2001 ). Progr.1111111eJ thtrap) for sr11ueri11g in ch1/dre11 a11d adu/11. Spring. IL: Charlei- C Thomas Sh.iw, B. F., Elkin, I., Yam.iguch1, J., Olmsted. M., Vallis, T. M . Dobson, K S., Lowery, A . Socskv. S M ., Watkins, J. 'T., &. lmher, S. D. ( 1999). Tht:rapist rating\ in relari(ln ro clinical outtome 1n cognitive thi.-rapr of l\l E [{)'

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3. "What do you cl1ink a scurrerer should do co overcome his or her srurtertng?"

4. "Do yot1 know anyone else who stutters.> WhcJ?"

5. ··oo you l1ave an}' questions abouc srutcer1ng?" A worksl1eet ts provided co keep crack of emorjonal reactions before and afccr eacl1 acr1v1cy as well as hscener reaction . Althot1gl1 eacl1 client ultimarel y ct1ston11zes his self-advert1s1ng St}rle, in tl1e l)eginning we include a few requirements. Because most who scutcer l1ave difficulry saying their names as well as che word "stutter," we ask tl1ac chey say ac least rl1eir first name an~1 f.RY

11ours ac che "normal" level of practice during the course of the intensive program). Some internal scares that can affect our client's speech management can be pl1ysica.l, sucl1 lunteer to ' read Bingo numbers! Join Toastmasters or take a public spel' Srt

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and tl1ey all tell us that it was the best cl1ing chat cot1ld l1ave happe11ed ro them because tl1ey learned tl1ey need never fear a fall again. Tl1ese ex1)eriences teacl1 tl1em chat they are in charge and tl1at tl1ey are empo\vered to make cl1anges.

Mre strategies for support CREATING A SUPPORTl''E ENVIRON.l\tENT

A 11uge part of • Wl1at l1ave been or are currently the benefits of your stuttering? • What might be the downside co greater fl ucncy :> Is cl1ere anything you might be giving up by being a more fluent speaker? • What are tl1e benefi rs of greater fluency? PROCESSING THE LISTS

In order to validate and support feelings about cl1e downside of stutteri11g, each client reads through chis first list. This is later rewritten in the past tense. We spend a great deal more rime processing the ocher lists. Regarding rl1e benefits of stuttering, during group discussion we find that benefits tend to fall into three main categories: • Past benefits such as "getting out of doing reports in school" or "dodging the military." These items tend to have no relevance to the client's present life, so we do not examine these in deptl1. • Contr1buc1on to personality development such as "made me a better listener," ''made me more compassionate," or "made me work harder." We can then ask, "With greater fluency, do you feel that you \vould lose your compassion (nor be a good listener, or work less hard?)" In ocher words, are you risking losing any of these positive attributes because you've developed fluent speecl1? Is tl1ere a consequence co the fluency? • Current benefits, such as "it's provided me w1rl1 a handy reason for n1y failures," "makes me unique," "it's been an excuse nor to do things," · 1r's been a way for me ro know who's a good person and wl1o's not, based on cl1eir response co my s1Jeecl1," or "it's protected me." These are the ones char can sabotage progress coward greater fluency. The clinician must chen gu1·n & Baton . Ambrose, N .. 'l'aira, E.. ~ Cox. N . (I 99.)). Generic aspects of earl} childhood scucrc:ring._/onma/ oj ~f>c.'n·h and Hear111g Rtrt.1rch, 36, 701-706. AnC Hooks Kaufman, B. ( 19avff1r 'fhrr.1py, 31. 547-~66. Woolf, G. ( l 967 ). The assessment of stuttering as struggle, avoidanc;e and expet. tdncy. Bri1tsh ./011r1:.1/ of Dnordcr1 of c·o,,111111n1.-ut1011. 2 L58-177 Wnghr, L. & Ayre, A. (2000). \f'1gb1 & A;re St11t1tr111.~ S•/f-Rat111g Profilt. UniteJ Kingdom. \'7irulow Press Ltd. Yair1. E. (1998). ls the ba5is or scutrerml:! genetic? ASHl\, 4U. 29-32. Yairi. E. & Ambrose, N. (2002) E"is1on focuses on the current fearures of available cecl1nologies •• and Jesirable attributes of technology designed co assist fluency therapy or uc;e of fluent speecl1. Ir is hoped chat this information can facilitate clinicians in making informed decisions about their use for clinical applications, or tl1eir use for improving commun1cat1on in situations known to be difficult for one's fluency clients. Tl1e following section is devoted primarily to rhe most po11ular electronic stuttering reduction devices.

Electronic stuttering reduction devices lNTRODt;CTION

Recently, rl1e producr1on and sales of devices for reducing or eliminating stuccer1ng, primarily by providing altered auditory feedback .1bouc one's speech, appear to have become a profitable market. Despite the fact chat these devices are more reaclil}' available now tl1an before, rl1ey continue to be underrepresented in rl1e stuttering therapy and research liceratt1re. Today, a fairly l11gl11)ercenrage of persons wl10 stutter (PWS) appear co be willing to "rest drive" and spend sizable amounts of money on devices thar they 11ope can make chem fluent speakers Unforrt111ately, for rl1e most part, tl1ey buy these devices without the availability of ob1ecr1ve information about rl1eir qualiry, or effectiveness Jn escabl1sl1ing speecl1

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fluency, and usually without the l1elp of speecl1-language pathologists. Users may be aware of rhe possible limitations of such technologies, but a po"verful attraction of the devices is the ability co "hrt)' sj1eech fl11e11C)" rather than work at it. The clinical literature on fluency disorders does nor address rl1e growing use aning cl1en1 reduce if not eliminate stuttering severity. The reasons why P\X'S are willing ro take chances w1tl1 tl1e devices may be variable. They may possibly be interested in them to l1elp our in selected communication sicuac1ons (e.g. professional presentations, sales, teaching). But, perhaps tile}' expect more: a lifelong elimination of their sturtenug problem. Importantly. the expectations of tl1e effects of stuttering reduction de\'ices in the eyes of PWS depend on the information available to then1, wl1icl1 in most cases is directly from producers, tl1eir v.·ebsites, and poptilar TV or radio programs. When stuttering reduction devices are sold directly to PWS, the 1nformarion on \vhicl1 dec1s1ons are made is unlikely to come from controlled empirical clinical research or speecl1-language parl1ologi~ts. 1

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speaker. An1ong rl1c: manii)ulations ,1vailahle on some de\•ices are rhe opcion of frcc1ue11C}' alrerc0 to $4.900 range, wl1icl1 includes an appointment with an aLidiolog1sr for an ear mold and a session with a speecl1-language pathologist co rece1\'e training in 1cs uc;age. It 'ihould be noted char digital hearing aids witl1our tl1e special funccio11s offered by Speec/;Easy are not mucl1 lower tn price. The aI ()(,)

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NOREPlNEPHRINE REUPTAKE INHIBITORS

Norep1ne1)l1r1nt is another catecholamine neurotransm1trer conrained in specific neurons in the cenrral nervous system as well as in postganglionic sympathetic neurone; in the peripheral nervous system. Reuptake inhibitor~ for norep1nehr1ne were developed as antidepressants and have been used in a few studies in adults who stutter. Imipramine and des1pramine are rwo ex;1mples of this drug class. Desipramine (Norpramin~ ) was used in a blinded study comparing two agents with placebo (Stager, Ludlow, Gordon, Cotelingam, & Rapoport, 1995a). Following treatment, no significant changes were found in syllables stuttered per second or in percent fluency on speech communication tasks; only six OLlt of 16 reported tl1at tl1ey were improved from baseline, but few experienced side effects. Given this poor result, it is unlikely than this class of medications will be proven beneficial in the treatment of stuttering. SEROTONIN SELECTIVE REUPTAKE INHIBITORS (SSRI)

These medications interfere with the action of plasma membrane transporter molecules \vhicl1 are needed for the reuptake of serotonin from the synaptic junction. Because re-uptake is blocked, serotonin increases in the synaptic 1unction leading to increased postsynaptic neuronal excitation. Examples of rh1s drug class include Clomipraine (Anafranil®), paroxotine (Paxil ' ), and fluoxetine (Prozac(f,). A double-blind controlled study of an SSRI included a comparison of both clomipraine (AnafranilLLL Or Sl·J

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disorders and were based on a variety of organizational and 01)erational models. From relatively recent and narrow roots, tl1e self-hel1) movement grew rapidly in the mid-1960s. Some viewed the movement as more of a social than a medical pl1enomenon (Adamsen & Rasmusse11, 2001; Emerick, 1996; Vattano, 1972). Others concluded that most groups lacked the organizational structure, ideology, or desire to be a ''social movement," and were best \1 iewed as an attempt to meet individual needs (Barkman, 1990; Katz & Bender, 1990). In tl1e 1970s, as 11ealth care became less personalized, more specialized and technical, and gated by healtl1 care providers (Borkman, 1997; DamenMortelmans, & Van Hove, 2000), individuals needing support encountered more frustration and there appeared to be an upsurge in antiprofessional sentiments held by many seeking professional services. Such negative attitudes and beliefs continued to grow at the same time that self-help groups began to broaden in scope and activity. Professional services and self-help groups increasingly were viewed as exclusionary and polarized options for individuals seeking help for disabling conditions. Thus, it is not entirely strange that descriptions of self-help groups as "strange subcultures of deviants" and "strictly anti-professional" (Barkman, 1970; Darnen et al., 2000) began to appear in tl1e professional literature. These descriptions were probably an accurate assessment of the beliefs l1eld by many in tl1e professional community and, unfortt1nately, by some even today. However, that attitude only served to support the negative belief held by most of the self-help community regarding professionals. That belief was probably best expressed by former United Scates Surgeon General, Dr. C. Everett Koop, who stated " ... many professionals still believe that transformation, change, and healing are the prerogative of an elite who possess knowledge and techniqt1es bestowed by specialized training" (in Bradberry, 1997, p.393.). Attitudes and beliefs such as these contributed to an atmosphere of "mutual disrespect" that served as a barrier to che development of any meaningful relationship between tl1ese seemingly disparate communities. Fortunately, things began to change in the 1980s. Recognizing tl1e growth and importance of the self-l1elp/support group movement, St1rgeoo General Koop sponsored a National Workshop on Self~Help and Public Healtl1 in 1987. The workshop was

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attended by large numbers of both consumers and professionals. Its proceedings concluded that "health providers alone could nor ease the suffering of people wl10 are physically or mentally ill or addicted." It was recommended that educational programs and practice settings provide practitioners with an increase in knowledge and a change in attitudes about self-help and self-help groups. Specifically relevant to stuttering, the speech pathology community was also urged ro pay attention to tl1e validity of self-l1elp groups by tl1e American Speech and Hearing Association's Director of Consumer Affairs when Koop wrote, a few years later, that:

Constt1ners are becor;zing more interested in taking charge of their own lives. Professionals need to recognize this trend and acknowledge the potential benefits of self-help. (Diggs, 1990, p. 32)

The role of professionals in self-help/support groups Since then, slow but steady progress has been made between many selfhelp groups and their respective professional communities. Distinctions and legitimacy of both experiential and professional knowledge began to be explored (Borkman, 1976, 1990). More recently, researchers have begun to study the structure of different groups and organizations as well as the roles that professionals might play within those strt1ctures to maximize their effectiveness (Ben-Ari, 2002; Wituk, Shepherd, Slav1ch, Warren, & Meissen, 2000). In a recent study condt1cted to assess t'he involveme11t of professionals in different types of self-help groups, Ben-Ari (2002) concluded that attitudinal constructs and age of participants were a critical factor. On a continuum that would place mutual collaboration with professionals on one end, and completely separate roles for the two on the otl1er, he found that 12-step-based groups and groups with a ma1ority of participants under tl1e age of 30 were less likely to choose collaboration with professionals than l1ealrh-orienred groups composed of more mature participants. This 1s not surprising~ given the history and structure of 12-srep _ programs. It is also not surprising chat younger people would be more inclined to prefer a more "closed" model. Tl1e fact tl1at they have joined a self-help group may indicate tl1at traditional modes of therapy have not been effective for them and tl1ey may be resentful that professionals could nor "fix" them. Relevant to stuttering, this 11as certainly been my person-

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al experience as well as my observations over the course of 30 years witl1in the stuttering self-help community. On the other hand, self-help members who were over the age of 30, had higher education, and/or had more experience with self-help were more likely to value collaboration with professionals working in the area of their health concern. This group also had a better understanding and appreciation for tl1e different but equally legitimate roles of self-help and professional intervention. This "open" approach (inclusion of those seeking support and information as well as those who are professionals in the field) has become tl1e more desirable model for most groups (Adamse11 & Rasmussen, 2001; Ben-Ari, 2002). As groups developed a more open approach, questions about the role of professionals in self-help associations began to surface. Through the years, professionals have assumed a variety of roles in the development and maintenance of self-help groups, ranging from original organizer to consultant/advisor (Ben-Ari, 2002; Bradberry, 1997). The level of involvement of professionals is often related to the nature or philosophy of the group. For example, as noted, a 12-step model is less likely to accept professional involvement than a more open health-oriented group (Ben-Ari, 2002). Some groups prefer professionals to be fully integrated participants, while others prefer them to take a less active or consultant role (Adamsen & Rasmussen, 2001). Over the years, studies have shown that professional involvement is on the rise (Ben-Ari, 2002). One stt1dy (Adamsen & Rasmussen, 1992) found that 84% of participants in selfhelp actually request professional involvement. For those working in the area of stuttering, it is interesting to note that these findings are consistent with a survey of members of tl1e National Stuttering Association (formerly the National Stuttering Project), in which 85 % of respondents felt that professionals as well as "others" should be invited to participate in meetings and other association activities (Krauss-Lerl1man & Reeves, 1986). Still, there is active discussion about the role that professionals should play in an "open" self-help group or organization. To some it appears that debating this issue in the general context of self-help or within a specific group is not unlike debating the appropriate treatment of stuttering itself. There does not appear to be a "one-size-fits-all" model. Some groups have been established by a professional who bas helped encourage

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and guide the group toward more autonomy and self-leadership, whereas others l1ave been established solely by nonprofessionals, yet encourage professional attendance and participation. It is important co note that the level of professional involvement is not only dependent upon the attitudes of self-helpers. Some professionals themselves feel uncomfortable in self-help meetings and prefer to take a more distant role as an available consultant (Gregory, 1997). Others appear much more comfortable in meetings, and gain i11sight while still being available co provide information as appropriate. However, professionals need to guard against the potential for inappropriate levels of participation that can turn a group meeting into "groL1p therapy." Although some professionals still view tl1e relationship with self-help groups as antagonistic (Adams, 1990), most see it as a positive and ration.al progression in che evolution of health care Oacobs & Goodman, 1989; Kurtz, 1990; Reissman & Carroll, 1995). Some have even speculated that in 10 to 20 years, self-help groups will become the most favorable choice of treatment for many psycho-pathologies and non-psycl1iatr1c illnesses, or "life predicaments," as some have called them (Adamsen & Rasmussen, 2001; Goodman & Jacobs, 1994). In the end, it is nor a question of whether or not professionals should be involved in self-help groups, but to what extent and in what capacities. Each organization and each group within an organization has certain unique characteristics and needs. Although most self-l1elp/support groups are organized and facilitated by pe~.rs, it is not essential. This is less important to label or restrict roles than it is to understand the goals and needs of the individual group and how self-helpers and professionals can work together co achieve those goals. The key factor is whether the focus is on the sharing of experiential knowledge and support rather than professionally directed therapy.

A closer look at the value and efficacy of self-help groups The positive value and role of self-help for stuttering h,1s been votced by many, particularly in texts devoted to stuttering treatment or clinician training (Bloodsrein, 1995; Manning, 2001; Shapiro, 1999; Starkweather & Givens-Ackerman, 1997; and Yan1ss & Reeves, 2002, to name a few examples). However, tl1ere 11ave been few empirical data available to sup-

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port tl1ese assertions specific to stuttering (Krauss-Lel1rman & Reeves, 1986; Yaruss et al., 2002). Fortunately, there is a significant body of research on self-l1elp groups outside of stuttering tl1at spans many years. This literature l1as demonstrated positive ot1tcomes of self-l1elp group involvement on a variety of different conditions, diseases and disorders. For example, Kyrouz, Humphreys, and Loomis (2000) conducted an extensive review of the research literatt1re on the effectiveness of selfl1elp/mutL1al aid groups rl1at addressed mental healrl1 problems, weight loss, addiction-related recovery, bereavement, diabetes, tl1e welfare of caregivers and the elderly, cancer patients, and t11ose with chronic illnesses. Tl1ey reported on -~ 7 different studies across the range of disorders mentioned earlier. Their review is significant because tl1ey concentrated exclusively on longitudinal studies tl1at compared self-help participants to nonparticipants (controls). Tl1us, tl1ey were able to directly contrast benefits of self-l1elp participation. Although all of the studies showed consistently positive results, one that involved individuals affected by scoliosis, a developmental disorder resulting in an abnormal curvature of the spine, is of particular interest. The condition can be potentially disabling due to pain or physical limitations. Though there is no cure for scoliosis, there are treatments available that help manage the condition. In addition, because of the physical deformity and need for bracing that can only be partially hidden with loose fitting clorl1ing, the disorder can also be emotionally l1andicappi'ng. Thus, given tl1e social stigma felt by many who suffer from this cl1ronic and currently incurable condition, scoliosis seems particularly appropriate for comparison with stuttering. Kyrouz, Humphreys, and Loon1is (2000) summarized tl1e results of the study, conducted by Hinrichsen, Revenson, and Shinn (1985) as follows:

Ad11lts u 1th scoliosis u1ho had 1rndergone bracing or s11rgery and participated in a Sco/ios1s Association self-help group (N = 33) u1ere con1pared to ad1rlts with stntilar treat1nent iuho did not participate ir1 the gro11p (N = 67 ). Co111pared to nonpart1cipa11ts grottp participants repot·ted ( 1) a 11tore positive out!ook on life. (2) greater satisfaction it ith the 1nedicaf care they recei11ed, (3) red11ced psychoso111at1c syrnpto111s. (4) increased sense of 1nastery, (5) increased seif-estee111, and (6) red11ced feelings of shanze and estrange11ient. (p. 84) 1

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1

Another study that involved indjviduals witl1 diabetes fotLnd tl1at patients who attended two or more peer-led support group meetings in a

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year showed significantly better control of their diabetes than those who did not. In addition, attendees showed significantly greater knowledge about their condition (Simmons, 1992). Many other studies in this review had similar outcomes. With the increasing numbers of self-help groups and the mounting evidence of positive outcomes for participants, it would seem that there would be a natural synergy between tl1ese groups and the providers of 11ealth care services. Although there is clear evidence of a trend toward more understanding and cooperation (Adamsen & Rasmussen, 2001; Ben-Ari, 2002), there remains a disconnect between the two culturesone emphasizing the "health" side of the equation and the other emphasizing the "care" side (Banks, 2000). The call for attitudinal changes and incorporation of training programs made by the National Workshop on Self-Help almost 30 years ago has not made much progress in the United States. Wituk et.al. (2000) reported that the incorporation of self-help groups into the training and practices of human services professionals has not reached its full potential. In one study, 50% of graduate students in social work and psychology did not think that self-help groups were an appropriate management setting for mental illness. In another study involving forensic mental health professionals (lee, 1995), it was noted that while 94% of respondents referred patients to AA or NA, only 2 % referred to Recovery, Inc, a well-established mental health self-help organization. Many professionals acknowledge that self-help grou~ are underused (Toseland & ' Hacker, 1985). This is in contrast to the growing number of self-help groups and organizations (Reissman, 2000) and mounting evidence of tl1eir value in improving the lives of people who suffer from any number of diseases and/or disorders. The disconnect may in part be the result of attitudes and beliefs that the two communities self-help and professional developed about each other in the years during which self-help first developed as a movement. It may also be due in part to the lack of understanding by both sides of the complimentary roles that each can play in the "health" and "care" of those affected by personal challenges. Regardless of the underlying cause, it remains apparent that professional education regarding the value of self-help remains a critical strategic need (Constantino & Nelson, 1995 ).

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The history of stuttering self-help in the United States The hisrory of self-l1elp in the stuttering commun1ry l1as generally followed cl1e pacl1 of otl1er self-help organizations clestr1bed above, witl1 tl1e excepcjon of the early 12-srep programs. Tl1ough cl1ere are early reports of people who tUtter garl1ering rogerl1er co sl1are con/ b1' t1TuA1 A11J

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As groups became more organized, began to communicate more frequently, and gather for joint meetings, participants quickly realized that they were not alone in their struggle with stuttering. Tl1ey also found tl1at they were not alone in tl1eir experiences witl1 speech therapy. AlthoLtgh it was reassuring and comforting to find others wl10 shared common experiences, it was also disturbing to learn tl1at many had fallen through the cracks in tl1e delivery system for speecl1 tl1erapy services. Many participants, including son1e in leadersl1ip roles, had significant feelings of hostility directed at the professional community. There was a common feeling tl1at most SLPs knew very little about stuttering or how to treat it and even Less about tl1e impact that it had on the daily lives of those affected by tl1e disorder. Many studies confirmed the validity of many of tl1eir feelings. For example, many SLPs held negative stereotypical and biased views about PWS, did not feel confident treating stuttering, and did not view stuttering as easily responsive to therapy (Shapiro, 1999). Ir was also commonly felt that the profession was not taking any responsibility for failed therapy, but instead tended to blame the client for "not trying hard enough." Consumers were left to feel solely responsible and guilty for continuing to stutter. This hostility, combined with what many consumers perceived as a lack of interest in addressing these concerns or issues, led ro a diminished appreciation of the potential role of speech-language pathologists in consumer organizations. Even though joint meetings were arranged to bring stuttering groups and professionals together, tl1e attitudes and feelings expressed by some of the consumer leadership caused many professionals to maintain a distance (Gregory, 1997). The negative attitt1des and feelings, however, were not limited to consumer leadership. Some SLPs who attended some support group meetings admitted that it was difficult for them to observe severe stutterers who in their opinion "do not take constructive action" and feared that potential clients attending these meetings would not seek professional help (Gregory, 1999). The proclamation from those within the self-help movement that "it's OK to stutter" reinforced tl1e assumption of some SLPs that self-help groups for stuttering were "anti-therapy" and "anti-SLP." However, in a survey of tl1e National Stuttering Project (now tl1e National Stuttering Association) conducted by KraL1ss-Lehrman and

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Reeves (1988), cl1is asst1mprion was not substantiated. Racl1er than \•ie\ving self-help groups as che only option open co chose who felt that traditional speecl1-language pathology had failed them, chose responding co cl1e survey viewed self-help/support groups as meeting ver}1 different needs than thoc;e provided by traditional speech therapy. In face. 75 % of NSP members felt chat their therapy lJad been mildly or very successful. Tl1us, it seems fair co say char while many profec;s1onals view successful cl1erapy in terms of percentages of overt scuttere

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meer1ng. A program in whicl1 members of cl1e group volunteered ro be "1nrerv1ewed" by stt1dents as potential clients has rnec wicl1 very positive responses from students, educators, and participants. Jointly sponsored weekend workshops designed to bring adults and children who stutter, family members, and 1)rofess1onals cogether l1ave made it possible for those ln the community to meer ochers who sl1are J. lOmmon concern, learn more e:1bot1t stt1rtering, a11d become aware of tl1e many resources available co them. A summer flt1e11cy program has been developed by the university for children and parents tl1at incorporates volunteers from the self-l1elp group ancl lS a 1)racr1cal learning experience for gradt1are students. The summer program \V a catalyst for an ongoing montl1ly support group for children and parents facilitated by clinical staff and graduate students. Once again, adults from tl1e local cl1.apter of rl1e NSA are frequent participants and guests. Members of the self-help group L1ave also participated in distance learning classes and programs ar ocher nearby university programs Feedback from self-help members who participate ln these .. teaching" programs l1as been overwhelmi~ly positive. Participants report feelings of personal satisfaction, accomplishment, and purpose by helping young potenttal SLPs develop a better base of knowledge and understanding abour sturter1ng. They also report feelings of improved self-confidence and self-esteem by being able co speak more openly and frankly about their own speech. Feedback from graduate students has been equally positive. Students report an appreciation for the willingness of those who stutter to share their personal stories. Tl1ey also report that experience gained from the varieLy of learning opportunites is simply not possible through a rradi tional teaching model. W1 ch tl1e new ASHA Certification Standards requiri11g botl1 kno\vledge and skills 1n fluency disorders, programs may want to consider foster1 ng the developn1ent of a self-help group on their campus, in their clinic, or in tl1eir community. In addition, because of the range of ages, socioeconom1c, and cultural backgrounds of individuals participating in self-help groups, graduate programs that incorporate these kinds of learning experiences for students can more easily comply w1 tl1 tl1e new ASHA Standard IV-F tl1ac requires experience witl1 diverse populations. There are other examples of Ltniversity programs working with local self-l1elp groups, but unfortunately tl1ey are tl1e exception ratl1cr than the rule.

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With over 250 accredited graduate programs for speecl1-language parl1ology in the United Scates, only a handful are known to sponsor tl1eir own or have an association with a local self-l1elp group for stuttering. With a reported population of people who stutter witl1in each community of approximately 1/2-l % (Bloodstein, 1995), sponsoring or promoting a self-help group could also help to achieve a university's mission of community outreacl1. The long-term advantages of fostering tl1is kind of partnership benefits students, clinicians, chose affected by sturrering, and the • community.

Other challenges in our future Improved training for speecl1-language patl1olog1sts 1s only one of tl1e challenges facing members of both self-help groups and the profession as a whole. Delivering appropriate professional services to chose who need it is another. Tl1e expanding scope of practice coupled \Virl1 increasing case loads have created in schools a situation in which cl1ildren ~·ho stutter (CWS) often fall through the cracks. The 2000 United Staces Census reported char there were 64,928.·734 children in the United Stares between rhe ages of 3 to 18. Using rhe accepted professional prevalence of stuttering at 1% would esumate rhe potential number of children needing clinical services in a school setting at 649,287. In that same year, ASHA conducted a Special Schools Sunyey (200()) in wl1icl1 ic was reported tl1at of the 85,425 ASHA-certified SLPs, 54.6% were employed in a school setting and of those, 84.4%, or rougi'11y .39,365, provided clinical services. In tl1at same survey, it was stated that 2.6 students w1tl1 t1uency disorders were served per clinician. Using the ASHA Survey