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Hagin, Rosa A.Tourette Syndrome & the School Psychologist.Revised.Tourette Syndrome Association, Inc., Bayside, NY.American Legion Child Welfare Foundation, Inc.,Indianapolis, Ind.93

21p.Tourette Syndrome Association, Inc., 42-40 BellBlvd., Bayside, NY 11361-2874 ($3).Guides Non-Classroom Use (055)

MF01/PC01 Plus Postage.Clinical Diagnosis; Consultants; DisabilityIdentification; Educational Testing; ElementarySecondary Education; *Neurological Impairments;*Psychological Services; *School Psychologists;*Staff Role; *Student Behavior; Student Needs;*Symptoms (Individual Disorders)*Tourette Syndrome

This pamphlet alerts school psychologists to theeducational implications of Tourette Syndrome (TS) and providesinformation on: the nature of the disorder and its incidence,diagnostic criteria, etiology, treatment, and considerations intesting and classroom accommodations. TS is characterized as acomplex neurobiological disorder with involuntary motor and/or vocaltics and associated behavior difficulties. Psych "logists canrecognize the symptoms of TS and can guide and support youngsters andtheir families through the critical steps toward definitivediagnosis. As consultants to the school's instructional program,psychologists should consider: direct effects of tics on specifictasks, such as handwritiLg; interferences in attention as studentsattempt to inhibit tics in the classroom; medication effects such asdrowsiness; and interpersonal problems resulting from the symptoms,such as vocal tics. Types of accommodations that may be made in theclassroom include a buddy system for note-taking, opportunity fororal response to tests, extended time on tests, resource roomassistance, tutoring, and special schooling. Psychologists canprovide school personnel, students, and their families with accurateinformation about the nature of TS and new developments. Briefannotations are provided on four videotapes and five :ublications onTS. (Contains 12 references.) (SW)

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U S DEPARTMENT OF EDUCATIONOffice of Educational Research and Improvement

EDUCATIONAL RESOURCES INFORMATIONCENTER (ERIC

p This document has been reproduced as' received from the person or organization

originating it.0 Minor changes have been made to improve

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TouRETTE

SYNDROME

THE SCHOOL

PSYCHOLOGIST

BEST COPY AVAILABLE

"PERMISSION TO REPRODUCE THISMATERIAL HAS BEEN GRANTED BY

TO THE EDUCATIONAL RESOURCESINFORMATION CENTER (ERIC)."

by: Rosa A. Hagin, Ph.D.

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The AuthorRosa Hagin, Ph.D., is Professor Emerita, Graduate

School of Education, Fordham University andResearch Professor of Psychology, Departmentof Psychiatry, New York University School ofMedicine.

Tourette Syndrome Association isprofoundly grateful for the generoussupport of this publication providedby:

Ild

AmericanLegionChild WelfareFoundation, Inc.

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IntroductionPsychologists working in the schools have uniqueopportunities for service to youngsters withTourette Syndrome (TS), a complex neurobiologi-cal disorder with a spectrum of involuntary mo-tor and/or vocal tics and associated behaviors.Education is important for youngsters withTourette Syndrome; it represents a significant re-habilitation strategy that will enable them to real-ize their potential despite the socially stigmatiz-ing symptoms of the disorder. This pamphlet iswritten to alert school psychologists to the educa-tional implications of having TS and to directthem to additional information sources. Increasedknowledge can only enhance the quality of schoolservices to students with Tourette Syndrome.

Nature of the Disorder

For more than one hundred years TS hasbeen recognized as a disorder characterized byinvoluntary, repetitive, stereotypic movements ofmuscle groups, uncontrollable vocal sounds, and,in a minority of cases, repetition of inappropri-ate, obscene words. These movements or tics

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usually appear in childhood between the ages oftwo and sixteen years. Symptoms may includeone or more of the following: eye blinking, facialgrimacing, head twitching, or shoulder shrugging.Tics wax and wane over time with slow changes,so that an old symptom may disappear with anew one replacing it or being added to existingsymptoms. Although previously considered a life-long condition, remissions or marked improve-ment have been observed in late adolescence oryoung adulthood.

While motor and vocal tics are the most obviousTS manifestations, some people with TS regardthem as the least disabling aspects of the disor-der. Attention deficits and hyperactivity may in-terfere with learning. Compulsive behaviors, ob-sessional thinking, irritability, low thresholds forfrustration, and impulsivity may disturb interper-sonal relationships. However, there is great varia-tion in degree, course, and symptoms, with all in-dividuals manifesting their own unique expres-sions of the condition. Because of the broadrange of clinical manifestations, a confirmed diag-nosis may be delayed, and the cause of tics maybe mistakenly attributed to psychological, respira-tory, or ophthalmological conditions. This delay indiagnosis may lead to inappropriate interventionsthat not only may not help, but may exacerbateproblems in the relationships of the youngstersand their families.

Incidence

TS has been traditionally regarded as a low-incidence disorder, although more careful epide-miological studies and increased awareness ofthe symptoms have raised some questions aboutthis view. Cohen, Bruun, and Leckman (1988)

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have estimated that Tourette Syndrome may af-fect one person in 2500 in its fullblown formand perhaps one in several hundred in its milderforms. Epidemiological studies of regionalsamples have demonstrated gender and age dif-ferences in expression of the symptoms. For ex-ample, prevalence rates in the state of North Da-kota were found to be 9.3 per 10,000 for boysand 1.0 in 10,000 for girls under the age of 18years. The gender ratio reported was lower inadults with rates of .77 per 10.000 for adultmales and .22 per 10,000 for adult females.These figures strongly suggest a reduction ofsymptoms during late adolescence and adulthood.The rates of the disorder seem not to vary withrespect to race or ethnicity.

Validity of estimates depends to a great extentupon the awareness by both the public and pro-fessionals. Since there are as yet no clearly iden-tified biological markers, criteria for identificationdepend on clinical observation. The changing na-ture of the symptoms also presents problems forresearchers, particularly with milder cases. Fi-nally, the similarity of some early symptoms ofTS to other conditions such as Transient Tic Dis-order or Attention Deficit Hyperactivity Disorder(ADHD) adds to problems in diagnosis. (Zahner,Clubb, Leckman, & Pauls, 1988)

Diagnostic CriteriaIdentification of the symptoms is not an easy

matter. Therefore it is important for school psy-chologists to be familiar with the diagnostic crite-ria for Tourette Syndrome as outlined in theDiagnostic and Statistical Manual of Mental Disor-ders, 3rd Edition Revised (American. PsychiatricAssociation, 1980):

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1. Both multiple motor and one or more vocaltics have been present at some time duringthe illness, although not necessarily concur-rently.

2. The tics occur many times a day (usually inbouts), nearly every day or intermittentlythroughout a period of more than a year.

3. The anatomic location, number, frequency,complexity, and severity of tics change overtime.

4. Onset before age 21.

5. Occurrence not exclusively during psycho-active substance intoxication or known cen-tral nervous system disease, such as Hunt-ington's chorea and post-viral encephalitis.

EtiologyAlthough clinical research has done much to

advance diagnostic and treatment strategies in re-cent years, the causes of the disorder are un-known. A shift from the early emphasis onpsychodynamic factors to "constitutional" factorsoccurred in 1961 with the successful treatment ofpatients with haloperidol. Neuroanatomical studieshave been inconclusive, but alterations within thebasal ganglia, abnormalities in its major path-ways, or lesions in other brain regions that inter-connect with the basal ganglia are suspected tobe involved. (Singer & Walkup, 1991) Investigatorsbelieve that biochemical abnormalities at locationswithin the brain circuits related to motor func-tions could produce the TS symptoms. Based onthe patients' response to medications, dysfunctionof central neurotransmitter systems has been sug-gested as a cause. In the early 1980's major re-search emphasis was placed on dopaminergic sys-tems and hyper-sensitivity of dopamine receptors.

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Recent studies have shown the etiology to bemore complex.

Evidence from studies of family groups and twinshas highlighted complex genetic factors and gen-der differences in expression of the symptoms.These studies have also documented a substantialrelationship between TS and other conditionssuch as obsessive-compulsive disorder andchronic tics. Pau ls and Leckman (1986) have pro-posed a genetic model of transmission of vulner-ability through a single major autosomal gene.However, genetic vulnerability accounts for only aportion of the expression of the disorder. The fi-nal expression may be a function of gender-spe-cific neuroendocrine factors such as the effect ofandrogens on the developing brain, the presenceof other conditions such as ADHD, pre- or post-natal environmental stress severe enough to acti-vate neurochemical systems, or exposure to phar-macological agents. (Leckman, Riddle, & Cohen,1988)

TreatmentBecause research has shown TS to be a mul-

tiply determined disorder in which genetic vulner-ability, environmental stressors, and emotionalfactors combine to produce neurophysiologicalchanges, treatment must also be broad in scope.Management of the youngster with TS involvesmore than control of tics and vocalizations; it in-volves the understanding of all sources of stress,whether they come from the family, the school,peers, or having the disorder itself.

This understanding has its foundations in compre-hensive, multidisciplinary diagnosis. A comprehen-sive plan of intervention involves educational,

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psychotherapeutic, behavioral, familial and medi-cal components, although all services are not nec-essarily needed on a continuing basis. However,with so many disciplines involved, treatment canbecome fragmented and confusing to the family.Therefore, the designation of a central figure,someone who is available to the family as prob-lems arise and who can take responsibility forensuring that the services needed at a particulartime, are provided, is essential. (Silver & Hagin,1990)

Although medication may reduce the motor andphonic tics, it does not cure the disorder. How-ever, when symptoms are particularly disturbingto the youngster and when they impair socialand educational and/or vocational functioning,the physician has a number of medications tocall upon: haloperidol (Ha idol), pimozide (Orap),fluphenazine (Prolixin), clonidine (Catapres), aswell as several other pharmacotherapeutic agentscurrently under consideration. However, no drugis entirely free of side effects short term ef-fects (cognitive blunting, lethargy, depression,weight gain), long term toxicity, the meaning oftaking medication to the youngster and his family

all these factors must be taken into account ineffective treatment planning.

Behavioral interventions have also been usedwith tics and vocalizations. Behavior approachesincluding massed negative practice, contingencymanagement, relaxation training, self monitoring,and habit reversal have had some success withsome patients, although none has been univer-sally successful. Azrin & Peterson (1988) recom-mend a multicomponent program using several ofthese approaches with specific training in gener-alization which they have found useful with non-responders to medication.

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Alternative therapies, primarily in the nature ofallergy control and nutritional supplements, havebeen reported. In this connection, Bruun (1984)has pointed out that scientific validation of anytreatment requires improvement in symptoms sig-nificantly higher than the 25% of changes inher-ent in the waxing and waning of symptoms thatoccur spontaneously. Controlled studies havedemonstrated a significantly high rate of improve-ment with drugs such as haloperidol, pimozide,and clonidine, but no such results have beendocumented for most alternative therapies.

Clinical Contributions ofSchool Psychologists

As clinicians, school psychologists can contrib-ute substantially to the management of young-sters with TS from the very beginning of the di-agnostic process. Like most people, these young-sters may approach psychological testing withsome degree of anxiety. They may handle thisanxiety very differently from other youngsters re-ferred for psychological services. One common oc-currence is the inhibition of symptoms. It is notunusual for youngsters with TS to control tics forshort periods of time. This cannot continue in-definitely, for eventually tension mounts andfinds motor or vocal expression. Such inhibitionof symptoms could be confusing to psychologistswho base their assessments of a youngster'slearning problems on a limited sample of behav-ior. Limited observation could result in the beliefthat the problem was really a figment of theimagination of a neurotic parent. Such a conclu-sion might result in a recommendation that spe-cial educational services were unnecessary, whenindeed they were badly needed.

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Effective diagnostic service requires the psycholo-gist to allocate adequate time for evaluation andto arrange to see the youngster in a variety ofsettings. By providing for the variations in behav-ior and attention that accompany the disorder,psychologists can help to ensure valid assess-ment of these youngsters' strengths and needs.

In addition to the cognitive implications ofTourette Syndrome, there can be behaviorialproblems associated with the condition. Thesecan be understood when taken within context ofthe youngsters' reactions to confusing symptomsthat result in loss of control of actions (andsometimes thoughts) that are socially disabling.The disorder is unpredictable, with periods of ap-parent remission of symptoms followed by explo-sions of the tics. Frankel (1983) has commentedthat this unpredictability is, in itself, a source ofstress.

A variety of defensive systems may be called intoplay. Social withdrawal, denial, depression, depen-dency, anger, and rage may be common reactionsto the pain and frustration of trying to cope withthe disorder. Often it is in the home where thefull force of these reactions is felt. Skilled clini-cians who understand the relationship of TS tothese reactions can provide empathic support tothe youngsters and their families. For a more de-tailed discussion of associated behavior problems,the psychologist should read Tourette Syndromeand Behavior. (Bruun & Rick ler, 1991) This help-ful resource can be obtained from the TouretteSyndrome Association, Inc.

Diagnostic services should focus on the wholeperson, not just the problems. This means assess-ing the youngster's strengths as well as the ef-fects of the disorder.

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School Psychologists asEducational Consultants

As educational consultants school psycholo-gists can do much to ensure that students withTS enjoy the full benefits of their educationalprograms. These students may experience learn-ing problems at a number of different levels.There may be primary problems implicit in thedisorder itself, as well as secondary effects asthe individual attempts to deal with the impactof the disorder on total functioning. Several fac-tors to consider are:

Direct effects of the tics upon specifictasks (e.g. performing the skilled perceptualand motor actions required in handwriting);

Interferences in attention as the student at-tempts to inhibit the tics in the classroom;

Medication effects, such as the drowsinessor blunting of cognitive processes associ-ated with the use of some medications pre-scribed to relieve symptoms:

Interpersonal problems resulting from thesymptoms (e.g. vocal tics may be perceivedas violations of school behavior standards;motor tics may cause rejection by peers, so-cial isolation, teasing or scapegoating).

Testing Considerations

Because of the attentional problems that fre-quently accompany TS, timed educational test re-sults may underestimate the student's skills. Thisis particularly true when the task requires ex-tended independent work (i.e. conventionalachievement tests). A valid assessment should uti-lize a variety of achievement measures, such ascurriculum-based assessment or such individual

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achievement tests as "Key Math," the "Woodcock-Johnson Tests of Achievement-P.ev!sed," the"Wechsler Individual Achievement Test." Those in-dividual formats help to neutralize the effects ofattentional problems because they are cued bythe examiner and present only a few items at atime. These individual measures are also usefulfor comparison with the results of more conven-tional achievement batteries given as part of theschool's general testing program.

Modifications in the administration of any formalachievement test battery are necessary. Schoolachievement is an area in which students with fSmay excel. Their troubles in demonstrating whatthey know on tests should not keep them fromreceiving the most challenging educational experi-ences they can handle.

Classroom Provisions

Most youngsters with TS learn best in a mod-erately structured classroom, although there areindividual variations. They need the guidance ofclearly articulated directions from teachers, butthey also need some opportunity for freely ex-pressed physical activity. Sometimes, if tics are inthe waxing stage, students may need a place ofrefuge such as a brief time in the school nurse'soffice, a corner of the library, a counselor's office,or any other private area where the expression ofa symptom would not be embarrassing.

As with any school age sample, some youngsterswill have specific learning disabilities. Others mayhave more generalized learning disorders due tothe nature of TS itself and the behaviors associ-ated with it. A broad based assessment of bothstrengths and needs should determine the provi-

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sions necessary to ensure appropriate educationalprogress. The range of accommodations might in-clude:

A buddy system for note-taking

Opportunity for oral response to tests

Extended time on examinations

Use of a tape recorder in lecture courses

Resource room assistance

Tutoring

Special schooling

Mental Health ConsiderationsAs mental health professionals consulting in

the schools, psychologists have the opportunity toinfluence the attitudes of the significant people inthe lives of youngsters with TS. The attitudes ofpeers, teachers, and parents have a profound in-fluence on a successful adjustment to the disor-der. These youngsters may feel isolated frompeople their own age. Sometimes this feelingstems from the youngster's own poor self esteem,but other times, the feelings are indeed a realis-tic perception of the group processes occurring inthe school. Thus, while it is necessary to counselthe youngsters to help them build positive feel-ings about themselves, it is equally impottant towork with their peers and teachers to ensure ac-ceptance within the school community.

Needless to say, this process should be accom-plished with tact. Acceptance should not be basedupon a patronizing emphasis on the disability, butupon honest acceptance of the individual as aperson. Sometimes the bizarre symptoms of TSmake these relationships difficult. As mental

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health consultants, psychologists can help tomodify this situation by becoming positive rolemodels for the children In the school.

Psychologists can serve as sources of informationabout mental health concerns for teachers andother members of the school staff. In this role,they can work with teachers, not only by supply-ing information about the nature of TS and thepresent status of the youngster's treatment, butalso by helping to build positive attitudes amongthe school staff. These school personnel can, inturn, act as appropriate role models for the stu-dents in their relationships, not only with regardto the youngster with TS, but for all people withhandicapping conditions.

Important resources for encouraging attitudechange are the films and videos that are avail-able through the TSA National Office. For ex-ample, the video "I'm a Person Too" features twochildren and three adults from diverse back-grounds discussing their experiences living withthis disorder. This video is a good starting pointfor an orientation discussion with older students.Another film, "Stop it! I Can't," can serve thesame purpose with middle grade children whomay be the classmates of a child with TS. Profes-sional films are available from TSA for inservicetraining of staff members.

School psychologists will have many contacts withthe families of youngsters with TS. These relation-ships can be mutually helpful. Not only can thepsychologist provide understanding and supportwhen the complexities of the disorder affect thefamily, but parents can also be a source of infor-mation invaluable to the busy psychologist whodoes not always have the opportunity to keepabreast of current information on this develop-mental disability.

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Scientific ConsiderationsAs scientists, psychologists have the responsi-

bility for basing their conclusions, interpretations,and recommendations on data. They will recog-nize and avoid shopworn cliches that blame par-ents for any and all problems that children en-counter at school. As scientists, they will remainopen to new ideas and avoid untried "cures" un-til those remedies have withstood the test of sci-entific scrutiny.

As scientists, psychologists also should serve asinterpreters of research. TSA's publications areexcellent sources of information about develop-ments in the understanding and treatment of thiscomplex disorder. As well-informed professionals,psychologists can help disseminate to the peoplethey serve the growing data-base of informationon Tourette Syndrome and its associated condi-tions.

SummarySchool psychologists can play a significant

role in the education of youngsters with TouretteSyndrome:

As clinicians, psychologists can play a keyrole in recognizing the symptoms and inguiding and supporting youngsters andtheir families through the critical steps thatlead toward definitive diagnosis;

As consultants to the school's instructionalprogram, they can help to ensure young-sters with Tourette Syndrome the benefitsof an appropriate education;

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As mental health professionals, they canwork to build positive attitudes towardpeople with developmental disabilities, in-cluding Tourette Syndrome;

As scientists, they can provide school per-sonnel, students and their families with ac-curate information about the nature ofTourette Syndrome and new developmentsin the management of the disorder.

References

American Psychiatric Association. (1987) Diagnostic andStatistical Manual of Mental Disorders (3rd Edition,revised) Washington, D.C.: Author.

Azrin, N.H. & Peterson, A.L. (1988) Behavior Therapy forTourette's Syndrome and Tic Disorders. In Cohen, D.J.,Bruun, R.D., & Leckman, J.F. (Eds.) Tourette's Syndromeand Tic Disorders New York: John Wiley & Sons, 237-57.

Bruun, R. (1984) Commentary on Alternative Therapiesfor Tourette Syndrome. Tourette Syndrome AssociationNewsletter.

Bruun, R. & Rick ler, K. (1991) Tourette Syndrome andBehavior. Bayside, New York: Tourette SyndromeAssociation.

.Cohen, D., Bruun, R., & Leckman, J.F. (1988) Tourette'sSyndrome and Tic Disorders: Clinical Understanding, andTreatment. New York: John Wiley & Sons.

Frankel, M. (1983) Behavioral Problems in TouretteSyndrome. Tourette Syndrome Association Newsletter.

Leckman, J.F., Riddle, M., & Cohen, D.J. (1988)Pathobiology of Tourette's Syndrome. In Cohen, D.J.,Bruun, R., & Leckman, J.F. (Eds.) Tourette's Syndromeand Tic Disorders New York: John Wiley & Sons 103-119.

Pauls, D.L. & Leckman, J.F. (1986) The Inheritance ofGilles de la Tourette Syndrome and Associated Behaviors:Evidence for Autosomal Dominant Transmission. NewEngland Journal of Medicine, 315, 993-996.

Silver, A.A. & Hagin, R.A. (1990) Disorders of Learningin Childhood. New York: John Wiley & Sons.

Singer, H.S. & Walkup, J.T. (1991) Tourette Syndromeand Other Tic Disorders: Diagnosis, Pathophysiology, andTreatment. Medicine, 70, 15-32.

Tourette Syndrome Association, Inc. Catalog ofPublications and Film.. Bayside, NY: Author.

Zahner, G.E.P., Clubb, M.M., Leckman, J.F., & Pau Is, D.L.(1988) The Epidemiology of Tourette's Syndrome. InCohen, D.L., Bruun, R., & Leckman, J.F. (Eds.) Tourette'sSyndrome & Tic Disorders. New York: John Wiley &Sons 79-91.

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A special thank you to Ecological Fibers, Inc. and M & MBindery for their valuable efforts and cooperation in the

publication of this brochure.

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ADDITIONAL RESOURCES

VHS FILMSStop It! I Can't For elementary school ages. Writtento create sensitivity and reduce ridicule among their peers.

I'm A Person Too Prize winning documentary featur-ing five people from diverse backgrounds talking about 'ngwith TS; depicts the broad range of symptoms.

Tourette Syndrome: The Parent's PerspectiveDiplomacy in Action Features E. Collins, Ph.D. and R.Fisher, M.Ed., providing guidance to TS families on schooladvocacy issues.

An Inservice Film For Educators A new aid forteachers to help understand the complexities of teachingchildren with TS. Includes explanation of the complexitiesof TS and suggests interventions that work. AvailableJanuary, 1994.

LITERATURE

Coping with TS--A Parent's Viewpoint E. Shimberg.Covers parental and family acceptance, behavior manage-ment. (Revised 1993)

TS & the School Nurse S. Ort, R.N. Comprehensiveguide to educational, social and medical implications.

Problem Behaviors & TS Drs. R. Bruun, and K.Rick ler. Describes recent research and what is now knownabout the relationship of a variety of behaviors and TS.Contains helpful advice by Emily Kelman-Bravo, CSW, MSabout the management of problem behaviors for familiesand individuals with TS. (Revised 1993)

Discipline and the Child with TS: A Guide for Par-ents and Teachers R. Fisher-Collins, M.Ed., 1993.Helps children redirect impulses and compulsions throughteaching cause and effect relationships. Included are tech-niques and disciplining children without the use of aggres-sion or intimidation.

An Educator's Guide to Tourette SyndromeS. Bronheim, Ph.D. Covers symptoms, techniques for class-room management, attentional, writing and languageproblems.

An up to date Catalog of Publications and Films,including prices, can be obtained by writing to:

TOURETTE SYNDROME ASSOCIATION, INC.42-40 Bell BoulevardBayside, NY 11361

Tel # (718) 224-2999Fax # (718) 279-9596 20

Permission to reprint this publication must beobtained from the national:

Tourette Syndrome Association, Inc.42-40 Bell BoulevardBayside, New York 11361-2874Tel: (718) 224-2999Fax: (718) 279-9596

TSA, Inc. SM/Revised 1993

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