tic-related school problems

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DOI: 10.1177/0145445505279383 2005; 29; 876 Behav Modif

Leslie E. Packer Tic-Related School Problems: Impact on Functioning, Accommodations, and Interventions

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10.1177/0145445505279383BEHAVIOR MODIFICATION / November 2005Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL

Tic-Related School Problems: Impact onFunctioning, Accommodations, and

Interventions

LESLIE E. PACKERNorth Bellmore, NY

Children with Tourette’s syndrome (TS) are statistically overrepresented in special educationclasses; however, the extent to which tics contribute to such placement is unclear. In this article,the results of a survey of parents or guardians of 71 children and adolescents with TS aredescribed within the broader context of discussing the impact of tics and educational practices.One half of the respondents reported moderate to significant tic-related academic impact, and48% reported moderate to significant tic-related peer problems. Peer education and in-schoolcounseling were generally not offered nor provided. In the minority of cases where behavioralinterventions for tics were reported, contingent aversive consequences were reported to be inef-fective or counterproductive, while positive reinforcement for modifying tics reportedly pro-duced some successful results. The identification of research-validated academic accommoda-tions and increased involvement of school psychologists are suggested as necessary andpotentially helpful supports for students with TS and their teachers.

Keywords: Tourette’s syndrome; tics; peer problems; accommodations; special education

Current research indicates that Tourette’s syndrome (TS) may bemore prevalent in children and adolescents than previously recog-nized. For example, in a study of more than 1,500 public school chil-dren and adolescents, Kurlan, Fett, Parry, Boettrick, and Como (2001)found that 18.5% of students in regular education had tics and 3.1%met DSM-IV diagnostic criteria for TS when the significant distress orimpairment criterion was excluded. Even higher rates were found inspecial education, where 23.4% of the students had tics and 7.8% metdiagnostic criteria for TS.

876

Correspondence concerning this article should be addressed to Leslie E. Packer, Ph.D., 940 Lin-coln Place, North Bellmore, NY 11710; e-mail: [email protected]

BEHAVIOR MODIFICATION, Vol. 29 No. 6, November 2005 876-899DOI: 10.1177/0145445505279383© 2005 Sage Publications



Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL 877

The overrepresentation of students with TS in special education(SpEd) reported by Kurlan et al. (2001) has been reported in otherstudies as well. Previous investigators have found that 26% to 28% ofchildren and adolescents in SpEd had tics, and that children with TSwere 5 times more likely than their peers without TS to require SpEdservices (Comings & Comings, 1987; Comings, Himes, & Comings,1990; Kurlan, Whitmore, Irvine, McDermott, & Como, 1994). Theirfindings are consistent with reports from clinical settings or recruitedsamples that indicate significant rates of school and behavior prob-lems in children and adolescents with TS (Abwender et al., 1996;Carter et al., 1999; Erenberg, Cruse, & Rother, 1986; Hagin & Kugler,1988; Kurlan et al., 1991; Packer, 1997; Singer & Rosenberg, 1989;Singer, Schuerholz, & Denckla, 1995).

Because students with TS appear to be statistically overrepresentedin SpEd, identification of the specific problems that lead to placementcould have important practical implications for educators and treatingclinicians. Possible problems responsible for placement includelearning disabilities or neuropsychological factors, the presence ofcomorbid conditions, and tic factors. Although an extensive review ofthe literature on each of these possible factors is beyond the scope ofthis article, brief overviews are provided.

LEARNING DISABILITIES AND NEUROPSYCHOLOGICAL IMPAIRMENT

Research on the relationship between TS and learning disabilities(LD) has yielded somewhat conflicting results. Some of the discrep-ancies may be explained by factors such as differences in testing con-ditions, the type of control groups employed, and differences in howLD were defined and determined. For example, although some studiesfound significant impairment in reading, spelling, mathematics, andwritten work (e.g., Burd, Kauffman, & Kerbeshian, 1992; Hagin,Beecher, Pagano, & Kreeger, 1982), other studies found no evidenceof increased rates of LD under untimed test conditions (Gallina, 1990;Hagin & Kugler, 1988) or when IQ-matched controls were used as thecontrol group (Schultz et al., 1998). These findings have practicalimplications for school psychologists, as they suggest that studentswith known or suspected TS should also be tested under untimed con-ditions as part of the process of determining whether there is any LD.



878 BEHAVIOR MODIFICATION / November 2005

Another factor that appears to explain some of the discrepantresults between studies is the presence of comorbid conditions. Forexample, Schuerholz, Baumgardner, Singer, Reiss, and Denckla(1996) found no increased rate of LD in children and adolescents withuncomplicated TS but did find an increased rate in children who hadTS with comorbid attention-deficit/hyperactivity disorder (ADHD).Earlier studies that did not compare groups of children with TS-ADHD to children with TS-only or ADHD-only may have overesti-mated any relationship between TS and LD. Thus, although mathe-matics and written language appear to be the most likely areas ofweakness for students with TS, the rate of math and written languageLD may turn out to be consistent with the base rate in the general pop-ulation when more controlled research is available (for reviews of theliterature on TS and LD, see Como, 2001; Walkup et al., 1999).

Neuropsychological studies of TS have also produced conflictingresults, with one notable exception. In their helpful review of the liter-ature, Schultz, Carter, Scahill, and Leckman (1999) concluded thatalthough children and adolescents with TS generally perform withinnormal limits on tests of neuropsychological functions, a significantsubset of children with TS experience impairment in visuo-motorintegration (VMI). Impairment in VMI may contribute to the signifi-cant handwriting difficulties many children with TS experience andfor difficulties in copying from the board. School psychologists con-ducting psycho-educational evaluations of students with known orsuspected TS should not only routinely screen for VMI impairmentbut may need to provide accommodations for VMI impairment inother parts of the evaluation.

COMORBID CONDITIONS

Most children and adolescents seen in TS specialty clinics andreferred samples have comorbid conditions that may contribute toacademic or behavioral problems in school. ADHD, obsessive-compulsive behaviors or full obsessive-compulsive disorder (OCD),sleep disorders, and mood disorders have been reported in higher thanexpected rates in children and adolescents with TS, although esti-mates on the extent of comorbidity between TS and these other condi-



tions have varied considerably (see King & Scahill, 2001; Scahill,Tanner, & Dure, 2001; Zohar et al., 1999, for discussions of method-ological difficulties in estimating prevalence and implications of sam-pling methods). Because ADHD and OCD are generally accepted asthe two most common comorbid or associated conditions, they arediscussed below; however, it is important to note that mood disordersor other problems may also contribute significantly to a student’sschool difficulties.

As noted in the section on TS and LD, one possible impact ofcomorbid ADHD may be to increase the rate of LD in children withTS; however, there is evidence to suggest that comorbid ADHD mayalso increase the need for SpEd for other (non-LD) reasons. For exam-ple, Abwender et al. (1996) reported that after excluding children withTS who were diagnosed with LD, 33% of the remaining 108 childrenwith TS in a tertiary clinic sample experienced significant school dif-ficulties (defined as grade retention and/or placement in SpEd). Fur-ther analysis of the data revealed that in the absence of LD, ADHDwas the sole significant predictor of school difficulties. Neither thepresence of tics nor the self-report measure of mental energy spentsuppressing tics had any systematic relationship to school difficulties.These findings were supported by Spencer and colleagues, who foundthat when children with TS-ADHD were compared to those withADHD only, the two groups did not differ from each other on mea-sures of cognitive impairment, academic impairment, or placement inSpEd. ADHD symptom severity correlated with placement in SpEd;however, tic symptom severity was not correlated with placement,supporting the suggestion that TS was not contributing to the child-ren’s placement in SpEd (Spencer et al., 2001; Spencer et al., 1998).

Obsessive-compulsive behaviors or full OCD are also commonlycomorbid with TS. Children with OCD are significantly more likely toexhibit VMI impairment and may have other types of executive dys-function, although relatively little neuropsychological research hasbeen conducted on children with OCD (de Groot, Yeates, Baker, &Bornstein, 1997; Schultz et al., 1999). A priori, interference fromobsessive thoughts and/or compulsive rituals would seem to pose asomewhat obvious risk factor for school problems; however, noresearch has specifically looked at the placement of students withOCD, and the results of two studies that do provide some quantitative




data do not support a hypothesis that OCD is a significant factor inplacement in SpEd (Abwender et al., 1996; Silver, 1984). In light ofthe small sample sizes in the existing studies, it remains possible thatOCD contributes significantly to placement in SpEd; however, it mayturn out to be the case that as disabling as OCD can be, many childrenwith uncomplicated OCD may need only cooperation between theschool personnel and any private therapist and/or someaccommodations.

TICS AS A SOURCE OF SCHOOL PROBLEMS

Even if tics or TS might not increase the need for SpEd, tics mightimpair functioning in the classroom or lead to peer rejection. No sur-veys of school personnel have been conducted; however, in an unpub-lished study on the impact of TS on school functioning, Hagin andcolleagues recruited parents to complete a survey published in theTourette Syndrome Association Newsletter. The survey addressededucational settings, sources of support, and specific educationalpractices. Some of the major results included reports by parents that(a) having a refuge to go to (at the children’s discretion) when their ticsbecame severe was an important accommodation; (b) many of theirchildren experienced a sense of isolation and occasional outright peerrejection; (c) almost all of the children reportedly had handwritingproblems; and (d) testing conditions were very important for olderyoungsters (Hagin, Beecher, Pagano, & Kreeger, 1980, as cited in Sil-ver & Hagin, 1990). Although the Hagin et al. (as cited in Silver &Hagin, 1990) survey provided interesting insights as to parental per-ceptions of their children’s experience, it provided no information asto whether academic functioning improved if tics remittedspontaneously or because of treatment.

In addition to potential impairment involving specific academicactivities, peer relationships may also be impaired by tics. A numberof studies have indicated that (a) children with tics are more likely toexperience peer problems, and the peer problems are because of, atleast in part, the presence of tics; (b) children with tics are more likelyto be rated significantly lower on social acceptability measuresbecause of the tics; and (c) peer problems may not correlate with tic




severity (Bawden, Stokes, Camfield, Camfield, & Salisbury, 1998;Boudjouk, Woods, Miltenberger, & Long, 2000; de Groot, Janus, &Bornstein, 1995; Edell & Motta, 1989; Friedrich, Morgan, & Devine,1996; Jagger et al., 1982; Nomura, Kita, & Segawa, 1992; Spenceret al., 1998; Stokes, Bawden, Camfield, Backman, & Dooley, 1991).Unfortunately, it is not clear to what extent peer education, a common-sense intervention for tic-related peer rejection, is utilized in schools.Likewise, it is not clear if improvements in tic symptoms result in adecrease in peer problems.

Given the aforementioned concerns with respect to the impact ofschool programming on the educational experience of children withTS, the current survey was conducted to provide data in three areas.First, the survey was conducted to obtain parental perceptions of howchildren’s tics might impair specific academic activities and to deter-mine the impact of tic improvement on academic functioning. Sec-ond, the survey sought to obtain parental or guardian impressions onthe issue of whether peer relationships improved if tics improved sig-nificantly or remitted. The third purpose of the survey was to deter-mine how school personnel attempted to respond to tic-related prob-lems and to determine the perceived effectiveness of these strategies.

METHOD

PARTICIPANTS

Parents or guardians of school-age children or adolescents withtic disorders were recruited via parent-focused, Tourette’s-relatedInternet Usenet groups, various Tourette’s-related mail lists anddiscussion forums, and the investigator’s Web site (www.tourettesyndrome.net). Participation was not restricted to those withInternet access, and some respondents learned about the study whentheir local chapters of the Tourette Syndrome Association, Inc. men-tioned it in their newsletters or local support group meetings. Respon-dents completed a survey (described below) and returned it by e-mailor regular mail. Of 41 e-mail replies and 35 mail replies, fiveresponses were unusable. The resulting sample consisted of reports by




69 respondents on 71 children and adolescents; one respondentreported on more than one child.

PROCEDURE

Respondents were asked to complete a 15-page survey thatincluded structured and open-ended questions about tic symptomsand history, tic impact on school experiences with respect to academ-ics and peer relationships, and any perceived changes in academicfunctioning or peer relationships that occurred if tics had remitted.Other questions in the survey related to the use of peer education andin-school counseling as support services, environmental accommoda-tions provided to the children, attempts by school personnel to modifythe children’s tics, and changes in placement because of tics. Becauseno attempt was made to obtain direct measures of school functioningor tic severity, all results must be interpreted as reflecting the respon-dents’ perceptions of their children’s experiences.1

RESULTS

The material in this section has been organized into subsectionsthat describe the sample characteristics and tic onset and course, theimpact of tics on academic functioning, the impact of tics on peer rela-tionships, and school-based strategies in response to tics.

SAMPLE CHARACTERISTICS AND DESCRIPTIONOF TIC ONSET AND COURSE

Of the 69 respondents, 63 indicated that they were the child’s bio-logical mother, 4 indicated that they were the adoptive mother, 1 wasthe grandmother and legal guardian of the child, and 1 was the child’sbiological father. The respondents came from 27 different states,Puerto Rico, Canada, the United Kingdom, Australia, and Peru.

The 52 children and 19 adolescents reported on comprised 62 boysand 9 girls who ranged in current age from 6 years 6 months to 17years 8 months, with a mean age of 11.13 years (SD = 3.00). Six of thechildren had diagnosed tic conditions or TS without any other diagno-




ses, while the remaining 65 children were reported to have comorbidconditions. Consistent with reports from TS specialty clinics, ADHDand OCD or OC behaviors were the most commonly reportedcomorbid conditions: 37 children and adolescents were reported tohave ADHD, and 34 were diagnosed with obsessive-compulsivebehaviors or OCD. Environmental allergies (n = 25), learning disabil-ities (n = 23), speech and/or language problems (n = 15), and mooddisorders (n = 13) were also reported, and although not a formal diag-nostic term, 14 respondents indicated that their children had “rageattacks.” Other conditions had reported frequencies of nine or less.Because most of the children reportedly had diagnoses in addition toTS, the term TS+ will be used to indicate children who have TS pluscomorbid or associated conditions (Packer, 1995).

The modal age of tic onset was 6 to 7 years, and all children in thissample experienced their first tics by age 12. Consistent with previousstudies (e.g., Bruun, 1988), eye-blinking tics were the single mostcommonly reported first tic. Coprolalia (the involuntary utterance ofsexually inappropriate or socially taboo expressions) was reportedlyexperienced by 15% of the children at some point in the course of theirdisorder, while echolalia (repeating what someone else has just said)was reported for 32% of the children and copropraxia (sexually inap-propriate touching or gestures or socially taboo gestures) wasreported for 24% of the children.

When asked about the course of their children’s tics, 19% of therespondents reported a major improvement in tics; 28% reportedsome improvement; 30% reported no improvement, and the remain-ing 23% reported a worsening of tics over time.

IMPACT OF TICS ON ACADEMIC FUNCTIONING

In response to open-ended questions asking them to describe thenature of any impact on academic activities, respondents specificallymentioned eye tics (19 cases) and other head/neck/arm tics (12 cases)as interfering with reading. Simple motor tics of the eyes, head, neck,and upper extremities were cited as interfering with handwritten workin 30 cases. Some respondents commented that their children were sofrustrated or distracted by their tics that they generally avoided start-ing any handwritten work or reading or were more generally nega-




tively affected across all academic subjects and activities. Althoughvocal tics were not cited as sources of interference with specific aca-demic subjects, some respondents did report significant impact ofvocal tics on their children’s academic functioning. The single mostcommonly reported impact of vocal tics was avoidance of readingaloud or asking questions in class because of embarrassment over thevocal tics or fear of peer rejection (n = 6).

When asked to describe the severity of tic impact on academicfunctioning on a 5-point scale where 1 = no impact, 3 = moderateimpact, and 5 = significant impact, 50% of the respondents indicatedthat their children experienced moderate to significant impact of ticson academic performance, and an additional 24% reported mildimpact. Because of the nature of the sampling method and the fact thatno objective measures of impact were obtained, it is possible thatthese rates are overestimates for the general population. It is interest-ing to note, however, that in a sample where one might expect morereports of significant impact, one half of the sample reported noimpact or only mild impact of tics.

The reports of tic impact on reading and handwriting activities byrespondents in the current survey were consistent with parentalreports in the Hagin et al. (1980) survey; although in contrast to theprevious survey’s finding that almost all of the children had handwrit-ing problems, only 42% of the respondents in the current survey spe-cifically mentioned handwriting problems in response to open-endedquestions asking them to describe tic-related impact. Part of the appar-ent discrepancy in findings between the surveys may be because of theinstructions in the current survey asking the respondents to confinetheir reporting to tic-related interference only. In the classroom, a stu-dent with TS-ADHD, TS-OCD, or TS-ADHD-OCD may experiencehandwriting difficulties because of ADHD and OCD symptoms aswell as any TS-related impairment (Mavrogiorgou et al, 2001; Tucha& Lange, 2001). If respondents had been asked to simply indicatewhether their children had handwriting deficits or impairment, it ispossible that there would have been many more reports of handwritingproblems.

If tics or TS do not significantly impair academic functioning, thenone might hypothesize that significant improvement in tic status




would have no or little impact on academic functioning. In the currentsample, 19% of respondents reporting significant improvement in ticsalso reported significant improvement in academic functioning thatthey attributed to the improvement in tics. An additional 11% reportedthat there had been improvement in academic functioning that wasprobably not because of the improvement in tics. In the remainingcases where tic status had reportedly improved significantly, therespondents reported either no academic improvement (32%) or noacademic improvement because of persisting comorbid conditions(38%). These results are in general agreement with studies describedearlier (Abwender et al., 1996; Spencer et al., 1998) and with theresults of another parental survey that found that parents of childrenwith TS+ viewed LD and ADHD as more significant problems thantics (Dooley, Brna, & Gordon, 1999).

IMPACT OF TICS ON PEER RELATIONSHIPS

Respondents were asked a number of global and specific questionsabout how the children’s tics affected peer relationships. In responseto a global question asking them to use a 5-point scale to indicate howmuch impact their children’s tics had on peer relationships (apart fromany comorbid conditions), 48% of the respondents reported moderateto significant impact and an additional 31% reported mild impact.When asked about tic-related teasing and tic-related peer rejection,approximately one third of the children were reportedly never teasedor rejected by peers in school solely because of their tics, while theremaining children were either teased a bit but never rejected (29%),teased a lot but never rejected (10%), rejected a bit (18%), or rejected alot because of their tics (10%).

The 28% tic-related peer rejection rate is significantly higher thanthe rate of peer teasing and bullying in the general population(Olweus, 1993); however, because of the nature of the samplingmethod and the fact that there was no objective verification of respon-dents’ reports, it is possible that the obtained rate overestimates tic-related peer rejection for the general population of students withuncomplicated TS or TS+. It is also possible, however, that in anactual classroom setting, children with TS+ might experience even




higher rates of peer rejection when rejection associated with symp-toms of comorbid conditions are considered in addition to the tics.

Respondents were also asked whether peer relationships improvedif tics remitted significantly. Just as a subset of children reportedlyexperienced improvement in academic functioning when tics remit-ted, 19% of the children (although not always the same children)reportedly experienced improved peer relationships when their ticsremitted significantly. An additional 26% of the children reportedlyexperienced improved peer relationships that the respondents did notattribute to tic improvement.

SCHOOLS’ RESPONSES TO TICS

If one half of the respondents reported that their children experi-enced moderate to significant academic impairment from their tics,and if most of the children were reported to have associated orcomorbid conditions that might also impair academic functioning,one would expect to see a majority of children referred for SpEd orreceiving accommodations. Out of the 67 U.S. children, 34 werereported to be classified under the Individuals with Disabilities Edu-cation Act of 1997 (IDEA) as eligible for SpEd. Five additional chil-dren who were not classified as SpEd had accommodation plans under§504 of the Rehabilitation Act of 1973, and yet other children report-edly received accommodations for their tics although no formal planwas developed.2 These data, then, are in agreement with reports fromtertiary care settings that indicate that children with TS+ have highrates of school problems.

Respondents were asked a number of specific questions about theschool’s responses to their children’s tics in terms of (a) accommoda-tions for tics, (b) peer education, (c) in-school counseling, (d) tradi-tional behavioral interventions to modify tics, and (e) change in place-ment. Each of these is discussed below.

Accommodations. Appropriate and effective school-based accom-modations are strategies or modifications that “level the playing field”for the student, in that (a) they enable the students to derive benefitfrom activities comparable to benefit derived from peers who do not




have the disabling or interfering symptoms and (b) they enable the stu-dents to perform in a way that allows them to demonstrate their knowl-edge or skills without giving them an advantage over peers who do nothave the disability-related symptoms. If accommodations seem indi-cated, consultation with the student (if appropriate), the child’s par-ents, and the treating clinicians should be arranged.

For the current sample, 72% of the children reportedly receivedaccommodations specifically for their tics. Table 1 provides a fre-quency distribution of the reported accommodations or strategies.The mean number of accommodations per student was 4.47 (SD =4.08), after excluding the strategy of ignoring tics, which is not con-sidered an educational accommodation within the generally accepteddefinition of accommodation. As can be seen in Table 1, ignoring ticswas the most frequently employed strategy, while the most commonaccommodations reported were giving the student permission to leavethe room, allowing extended time for class work and tests, use of pref-erential seating, testing in a separate location, allowing the student touse a word processor, and reducing homework.

The final column in Table 1 indicates the number of respondentswho identified a particular strategy or accommodation as being thesingle most important strategy or accommodation. Respondents inthis survey generally agreed with respondents in the Hagin et al. (citedin Silver & Hagin, 1980) survey as to what accommodations or strate-gies were particularly helpful. Although the absence of objective mea-sures in both studies precludes firm conclusions as to the actual effec-tiveness of ignoring tics for these children, the results of another studyindicate that talking to children about their tics may lead to a tic exac-erbation (Woods, Watson, Wolfe, Twohig, & Friman, 2001). Thus,even if ignoring tics might not reduce tics, the parental reports may bequite correct that it is a useful strategy to employ because it mightprevent a worsening of tics.

Extended time was also reported to be an important accommoda-tion by respondents in both surveys, and there is some empirical sup-port for it, as mentioned earlier (Gallina, 1990; Hagin & Kugler,1988). Extended time for tests, class work, and homework may benecessary because of a variety of TS-related reasons: (a) VMI impair-ment-related handwriting problems, (b) VMI impairment-related




problems in copying from the board, (c) tic-related interference withhandwriting, (d) distraction because of premonitory urges, (e) tic-related interference with reading, (f) time pressure-related stress thatmay increase tics, and (g) medication side effects, to name but some ofthe possibilities.

Even if an accommodation is empirically validated for groups ofchildren with TS, however, it is important to note that its effectivenessneeds to be determined for the individual student. Many children withTS reportedly receive accommodations; however, there are no datasuggesting that school personnel objectively determine whether anyparticular accommodation is needed or effective for a particular stu-dent. This issue is not specific to students with TS and appears to be awidespread concern. For example, one review of the literature indi-cates that there has been little research on the effectiveness of many


TABLE 1Reported Classroom Strategies in Response to Tics

Accommodation or Strategy n Single Most Important

Teachers ignore tics 43 11Permission to leave the room, as needed 36 9Preferential seating 27 4Extended time on class work 27 0Extended time on tests 23 5Word processor 18 5Test in a separate location 18 2Reduced homework 17 3Extended time on homework 14 0Calculator 12 0Reduced amount of handwritten work 9 0Test answers recorded in any manner 6 0Permission to eat lunch other than in cafeteria 6 0Scribe 5 0Tape recorder 4 0Excused from particular activities or classes 4 0Books on tape 2 0Someone to read to the student 2 0Leaving class early to avoid hallway congestion 1 0Othera 3 0

NOTE: The number of students receiving each type of accommodation or strategy as reported byrespondents (n) and the number of respondents who indicated that it was the single most impor-tant accommodation or strategy for their children’s academic functioning.a. One student was allowed to carry a water bottle with him at all times, another student wasallowed to stand at his desk instead of sitting, and a third child was allowed to suck hard candy.



accommodations provided by schools, and that students are oftengiven ineffective accommodations (Fuchs, Fuchs, Eaton, Hamlett, &Karns, 2000).

In addition to the potential for implementing ineffective accommo-dations when there is no assessment of their effectiveness for the indi-vidual student, another potential problem arises when ineffective orno-longer-necessary accommodations are provided. In the absence ofresearch on the impact of accommodations on peer relationships, it ispossible that the more accommodations given to a child, the more thechild might view himself or herself as different, and the more the peersmight view the child as different, a situation that might contribute toany peer rejection or sense of isolation the child might feel. For exam-ple, consider what might happen when a teacher sends a student to aseparate location for testing without any determination that testing inthe alternate location actually improves test performance for the child,reduces stress for the child, or improves peer relations for the child (asmight be the case if peers had been complaining about distraction dur-ing tests because of the child’s vocal tics). The child with TS mayresist going to another location, and in cases where peers are not com-plaining about a child’s tics, the peers may resent the fact that the childwith TS is getting special treatment. When thinking about how to helpstudents, then, the potential benefit(s) of any accommodations orinterventions must be weighed against any possible risks that the chil-dren may feel different, “broken,” or incompetent, or that the childrenmay be stigmatized by isolating them from their peers.

Peer education. Respondents were asked whether they had everrequested a peer education program or if one had been provided iftheir children were experiencing tic-related peer difficulties. Twentyparticipants reported that they had never requested one, nineresponded that they had requested one but that the school had not pro-vided it, and nine reported that the school provided one. Thus,although almost one half of the children were reportedly experiencingmoderate to significant tic-related peer problems, schools providedpeer education programs for only 13% of the sample.

For the nine cases in which peer education programs were pro-vided, three participants reported that the programs were effective inreducing peer teasing and/or peer rejection, five participants reported




that the peer education programs were somewhat helpful, and one par-ticipant reported that the program was not effective. Because of thesmall sample size, the absence of a standardized peer education pro-gram, and lack of objective data, no firm conclusions can be drawnfrom the current study as to whether peer education would make a sig-nificant difference in reducing teasing or peer rejection; however, astudy by Friedrich et al. (1996) and my experiences (Packer, 1997)suggest that a peer education program might be of at least somebenefit.

In-school counseling. Respondents were asked whether their chil-dren received in-school counseling with the school psychologist orsocial worker if or when the children were experiencing significantdifficulty in school because of their tics. For the subset of respondentsthat responded to this question, 9% indicated that counseling was pro-vided and helpful, 60% reported that they were never offered counsel-ing, 9% reported that they had requested counseling and had beendenied the service, 4% reported that they were told that no counselingwas available in their children’s schools, 4% reported that the schooldid offer counseling but declined the service, 13% reported that coun-seling was provided but did not help, and one parent reported that thefamily was referred to a private therapist.

Walter and Carter (1997) suggested that the school psychologisthas a valuable role to play when it comes to behavior modification oftics because school psychologists are ideally positioned to collectnecessary information to help develop a plan and then to monitor it forefficacy. School psychologists also have a valuable role to play inother ways, however. They support the teacher in service of the childwhen they educate parents about the child’s disability and how to dealwith school-related issues in the home, when they educate the teacherabout the nature and impact of a child’s disability, when they advisethe teacher of accommodations that might be needed in the classroomor in homework demands, when they advocate for the child to secureneeded related services and supports if the child has been referred forspecial education, and when they provide counseling to help a studentcope with school-related problems. Given the extent of problems thechildren and adolescents were described as experiencing, the relativeabsence and/or ineffectiveness of in-school counseling is troubling.





Although it is tempting to dismiss the reports from respondents in thecurrent survey as reflecting referral bias, other reports provide somesupport for a concern about the extent to which school psychologistsare prepared and able to meet the needs of students with tics and TS.For example, findings that the majority of children with TS are notdiagnosed in their school settings (e.g., Burd & Kerbeshian, 1992)might indicate that school psychologists are not recognizing symp-toms of TS when they observe students or evaluate them prior toplacement in SpEd. Even if school psychologists were to identify chil-dren and refer them for treatment or for diagnostic consultation, how-ever, responses to the current survey suggest that children may beunderserved in those areas where there is an inadequate supply ofappropriately trained school psychologists to provide counseling andsupport services to the student and to the teacher.

Attempts to modify tics. In considering whether to accommodatetics or attempt to modify them, Cohen (1990) suggested that school-based interventions are appropriate (a) when a child is falling behindacademically, (b) when tics are so forceful or frequent that theydirectly interfere with learning or participation in classroom activi-ties, (c) when the child has no friends or is suffering significant peerproblems because of their tics, and/or (d) when the child’s self-esteemis jeopardized. In the current survey, 75% of respondents indicatedthat school personnel did not attempt interventions to modify theirchildren’s tics, 21% of the respondents reported that some attempt hadbeen made, and 4% were uncertain. When asked what specific strate-gies had been tried to modify their children’s tics, 15 respondentsreported 11 different strategies that had been tried. For some children,more than one strategy had been tried, yielding 28 different attemptsfor 15 children.

Table 2 shows the reported strategies and their outcomes. The onlystrategy that was reported to have any positive outcome involvedrewarding the children for trying to modify the tic(s). All other strate-gies reportedly produced neutral or negative outcomes, although therespondents did not provide data as to whether so-called negative out-comes meant a worsening in tics, more emotional behavior, or someother problem. Inspection of the tabled data reveals a contin-gency × outcome relationship such that interventions employing posi-



tive contingencies were associated with either neutral or positive out-comes, while interventions using aversive contingencies all yieldedreportedly negative outcomes. Discreetly signaling the students thatthey were ticcing reportedly produced negative outcomes in somecases and had no effect in other cases. The relationship between typeof contingency (negative, neutral, positive) and outcomes (negative,neutral, positive) was significant, χ2(4, N = 28) = 20.75, p < .001,Cramer’s C = .65.

For the most part, the reported interventions listed in Table 2 are notbased on techniques that have been validated as being effective fortics, such as habit reversal techniques (Clarke, Bray, Kehle, &Truscott, 2001; King, Scahill, Findley, & Cohen, 1999; Piacentini &Chang, 2001), which raises a concern about whether teachers whomay not be knowledgeable about tics or validated techniques for ticsare implementing interventions without guidance from school psy-chologists. Burd and Kerbeshian (1987) found that a small but signifi-cant number of children with TS may respond to response-cost or


TABLE 2Frequency and Reported Effectiveness of In-School Behavioral Inter-

ventions to Modify Tics

Outcome

Behavioral Strategy Negative Neutral Positive

Negative consequencesPublicly pointing out tics or commenting on them 4 0 0Keeping child in at recess for ticcing 3 0 0Sending child from room 3 0 0Sending child to building administrator 2 0 0Withholding field trips 1 0 0

Neutral or ambiguous consequencesDiscreetly signal child when ticcing 3 4 0

Positive consequencesReward for modifying tic 0 1 2Reward for competing response 0 2 0Reward for decreasing ticcing 0 1 0Home reward for decreased tics in school 0 1 0Home reward for modifying tic in school 0 1 0

NOTE: Behavioral interventions implemented by classroom teachers, as reported by the child’sparent or guardian.



punishment-dependent behavior programs with tic exacerbations andincreases in behavioral problems, and the respondent’s reports in thecurrent survey provide anecdotal support for this concern.

Because most tics of TS may wane or disappear within a matter ofweeks, implementing a behavioral approach is usually not required. Inmost cases, supporting the child, the teacher, and peers in acceptingthe situation and working creatively around the tic may be the mosteffective strategy and may help foster children who are more resilient.In those cases where a behavioral approach is appropriate (e.g., incases of chronic tics that interfere with functioning, and/or where thechild’s tic jeopardizes placement in the program or significantly jeop-ardizes peer relationships), school personnel should consult with thechild’s parents, the child’s treating professionals, and the child (whenappropriate) in developing the plan. School psychologists who canassist the teacher in developing interventions based on positive rein-forcement and research-validated interventions for tics may increasethe effectiveness of the intervention and may help prevent a worseningof the student’s symptoms.

Change in placement. If tics or TS contribute significantly to place-ment in SpEd, then one might expect to see a number of reports indi-cating that children’s placement had been changed solely or primarilybecause of their tics. For the current sample, four respondents (6%)indicated that tics had been the sole or a primary factor in a change inplacement: One child was hospitalized, one child was placed in a com-bination of regular education and SpEd classes, a third child was sentto another school for a self-contained SpEd program, and the fourthchild was placed on home instruction. In light of the referral bias ofthis sample toward cases of TS plus comorbidity and more severeproblems, if 6% of the current sample had their placement changedsolely or primarily because of their tics, then the estimate for the gen-eral population is likely to be lower. These data, then, appear to be ingeneral agreement with previous findings by Abwender et al. (1996)and Spencer et al. (1998) that TS may not be a significant factor inSpEd placement.




SUMMARY OF MAJOR RESULTS

Approximately three fourths of the children described by arecruited sample reportedly experienced some degree of tic interfer-ence in academic functioning. Simple motor tics involving the eyes,head and/or neck region, and upper extremities were reported as inter-fering with reading and handwritten work for many children, whereasvocal tics were more likely to interfere with reading aloud and partici-pation in class discussions. When tics remitted significantly, 19% ofthe children reportedly experienced improved academic functioningand improved peer relationships; however, for the majority, academicand peer problems persisted.

School personnel tried to ignore tics and/or attempted to accommo-date tics in the majority of cases. Extending time, allowing the child toleave the room, preferential seating, and reducing homework wereamong the most common accommodations that respondents per-ceived as important and helpful. Peer education and in-school coun-seling were usually not provided as supports. Attempts to modify chil-dren’s tics via behavioral interventions were reportedly unsuccessfulor counterproductive when aversive consequences were employed,but attempts to modify tics through positive consequences for alteringtics reportedly produced some success.

DIRECTIONS FOR THE FUTURE

Tics are the cardinal feature of TS; however, they may be the leastof a student’s problems in school (Packer, 1997). In the absence ofresearch using children and adolescents with uncomplicated TS, nofirm conclusions can be drawn about whether TS significantlyincreases the need for SpEd; however, the results of parent surveysconsistently suggest that students with tics or TS often need accom-modations in the classroom and support in developing peer relation-ships. Although parents in two surveys that were conducted more than20 years apart provided almost identical reports in terms of what par-ticular strategies or accommodations are helpful, controlled research




using objective measures to assess the effectiveness of specificaccommodations or strategies might help school personnel avoid pro-viding students with ineffective accommodations and might identifyother effective accommodations. For example, if a student has hand-writing difficulties that may affect math calculations, does turninglined paper sideways to provide column guides significantly increasethe accuracy of the calculations or are other accommodations moreeffective? Similarly, extended time appears to be an appropriateaccommodation for tic-related interference in reading; however, arethere other techniques or accommodations that might also beeffective?

Studies on the long-term outcome of TS indicate that the majorityof children and adolescents with TS will eventually experience com-plete or significant remission of their tics (e.g., Leckman et al., 1998).In the interim, however, school personnel and parents need strategiesfor helping the children cope with their tics or work around them inacademic activities and peer interactions. Hopefully, the results of thecurrent survey will stimulate more controlled research on school-based accommodations and increase awareness of the need for bothmore training of regular education teachers and more involvement ofschool psychologists.

NOTES

1. A copy of the complete survey is available from the author at www.tourettesyndrome.net/survey.doc.

2. Under IDEA, a student who has been determined to be eligible for special educationreceives a specially designed program of instruction and related services. The goals, objectives,related services, and supplemental aids and services are then incorporated in a written Individu-alized Education Program (IEP). Children who are found ineligible for special education but whorequire accommodations because of their disability to have equal access to or benefit from theireducational program may get a written accommodation plan (504 Plan or Individual Accommo-dation Plan). Because an IEP also lists any accommodations the student is to receive, childrenclassified under IDEA generally do not get a separately written 504 Plan, even though classifica-tion under IDEA qualifies them as eligible for protection under §504 of the Rehabilitation Act of1973.




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Leslie E. Packer, PhD is a NYS-licensed psychologist specializing in neurobehavioraldisorders. Currently in independent practice treating children and adolescents withTourette’s syndrome and its associated conditions, she also serves as a consulting psy-chologist to school districts and as a special consultant to the New York State AssemblyEducation Committee.




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