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Behavior Modification

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Tic-Related School Problems: Impact on Functioning, Accommodations, and Interventions


Leslie E. Packer
Behav Modif 2005; 29; 876
DOI: 10.1177/0145445505279383

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http://bmo.sagepub.com/cgi/content/abstract/29/6/876

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

Tic-Related School Problems: Impact on


Functioning, Accommodations, and
Interventions
LESLIE E. PACKER
North Bellmore, NY

Children with Tourettes syndrome (TS) are statistically overrepresented in special education
classes; 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 are
described 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, and
48% reported moderate to significant tic-related peer problems. Peer education and in-school
counseling were generally not offered nor provided. In the minority of cases where behavioral
interventions 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 and
potentially helpful supports for students with TS and their teachers.

Keywords: Tourettes syndrome; tics; peer problems; accommodations; special education

Current research indicates that Tourettes syndrome (TS) may be


more 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 or
impairment criterion was excluded. Even higher rates were found in
special education, where 23.4% of the students had tics and 7.8% met
diagnostic criteria for TS.

Correspondence concerning this article should be addressed to Leslie E. Packer, Ph.D., 940 Lin-
coln Place, North Bellmore, NY 11710; e-mail: lpacker@tourettesyndrome.net
BEHAVIOR MODIFICATION, Vol. 29 No. 6, November 2005 876-899
DOI: 10.1177/0145445505279383
2005 Sage Publications

876

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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 other
studies as well. Previous investigators have found that 26% to 28% of
children and adolescents in SpEd had tics, and that children with TS
were 5 times more likely than their peers without TS to require SpEd
services (Comings & Comings, 1987; Comings, Himes, & Comings,
1990; Kurlan, Whitmore, Irvine, McDermott, & Como, 1994). Their
findings are consistent with reports from clinical settings or recruited
samples 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 overrepresented
in SpEd, identification of the specific problems that lead to placement
could have important practical implications for educators and treating
clinicians. Possible problems responsible for placement include
learning disabilities or neuropsychological factors, the presence of
comorbid conditions, and tic factors. Although an extensive review of
the literature on each of these possible factors is beyond the scope of
this 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 how
LD were defined and determined. For example, although some studies
found significant impairment in reading, spelling, mathematics, and
written work (e.g., Burd, Kauffman, & Kerbeshian, 1992; Hagin,
Beecher, Pagano, & Kreeger, 1982), other studies found no evidence
of increased rates of LD under untimed test conditions (Gallina, 1990;
Hagin & Kugler, 1988) or when IQ-matched controls were used as the
control group (Schultz et al., 1998). These findings have practical
implications for school psychologists, as they suggest that students
with known or suspected TS should also be tested under untimed con-
ditions as part of the process of determining whether there is any LD.

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878 BEHAVIOR MODIFICATION / November 2005

Another factor that appears to explain some of the discrepant


results between studies is the presence of comorbid conditions. For
example, Schuerholz, Baumgardner, Singer, Reiss, and Denckla
(1996) found no increased rate of LD in children and adolescents with
uncomplicated TS but did find an increased rate in children who had
TS 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 of
weakness for students with TS, the rate of math and written language
LD may turn out to be consistent with the base rate in the general pop-
ulation when more controlled research is available (for reviews of the
literature on TS and LD, see Como, 2001; Walkup et al., 1999).
Neuropsychological studies of TS have also produced conflicting
results, with one notable exception. In their helpful review of the liter-
ature, Schultz, Carter, Scahill, and Leckman (1999) concluded that
although children and adolescents with TS generally perform within
normal limits on tests of neuropsychological functions, a significant
subset of children with TS experience impairment in visuo-motor
integration (VMI). Impairment in VMI may contribute to the signifi-
cant handwriting difficulties many children with TS experience and
for difficulties in copying from the board. School psychologists con-
ducting psycho-educational evaluations of students with known or
suspected TS should not only routinely screen for VMI impairment
but may need to provide accommodations for VMI impairment in
other parts of the evaluation.

COMORBID CONDITIONS

Most children and adolescents seen in TS specialty clinics and


referred samples have comorbid conditions that may contribute to
academic 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 than
expected rates in children and adolescents with TS, although esti-
mates on the extent of comorbidity between TS and these other condi-

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Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL 879

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 as
the two most common comorbid or associated conditions, they are
discussed below; however, it is important to note that mood disorders
or other problems may also contribute significantly to a students
school difficulties.
As noted in the section on TS and LD, one possible impact of
comorbid ADHD may be to increase the rate of LD in children with
TS; however, there is evidence to suggest that comorbid ADHD may
also increase the need for SpEd for other (non-LD) reasons. For exam-
ple, Abwender et al. (1996) reported that after excluding children with
TS who were diagnosed with LD, 33% of the remaining 108 children
with 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, ADHD
was the sole significant predictor of school difficulties. Neither the
presence of tics nor the self-report measure of mental energy spent
suppressing tics had any systematic relationship to school difficulties.
These findings were supported by Spencer and colleagues, who found
that when children with TS-ADHD were compared to those with
ADHD only, the two groups did not differ from each other on mea-
sures of cognitive impairment, academic impairment, or placement in
SpEd. 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-
rens placement in SpEd (Spencer et al., 2001; Spencer et al., 1998).
Obsessive-compulsive behaviors or full OCD are also commonly
comorbid with TS. Children with OCD are significantly more likely to
exhibit VMI impairment and may have other types of executive dys-
function, although relatively little neuropsychological research has
been conducted on children with OCD (de Groot, Yeates, Baker, &
Bornstein, 1997; Schultz et al., 1999). A priori, interference from
obsessive thoughts and/or compulsive rituals would seem to pose a
somewhat obvious risk factor for school problems; however, no
research has specifically looked at the placement of students with
OCD, and the results of two studies that do provide some quantitative

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880 BEHAVIOR MODIFICATION / November 2005

data do not support a hypothesis that OCD is a significant factor in


placement in SpEd (Abwender et al., 1996; Silver, 1984). In light of
the small sample sizes in the existing studies, it remains possible that
OCD contributes significantly to placement in SpEd; however, it may
turn out to be the case that as disabling as OCD can be, many children
with uncomplicated OCD may need only cooperation between the
school personnel and any private therapist and/or some
accommodations.

TICS AS A SOURCE OF SCHOOL PROBLEMS

Even if tics or TS might not increase the need for SpEd, tics might
impair 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 and
colleagues recruited parents to complete a survey published in the
Tourette Syndrome Association Newsletter. The survey addressed
educational settings, sources of support, and specific educational
practices. Some of the major results included reports by parents that
(a) having a refuge to go to (at the childrens discretion) when their tics
became severe was an important accommodation; (b) many of their
children experienced a sense of isolation and occasional outright peer
rejection; (c) almost all of the children reportedly had handwriting
problems; and (d) testing conditions were very important for older
youngsters (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 childrens experience, it provided no information as
to whether academic functioning improved if tics remitted
spontaneously or because of treatment.
In addition to potential impairment involving specific academic
activities, peer relationships may also be impaired by tics. A number
of studies have indicated that (a) children with tics are more likely to
experience peer problems, and the peer problems are because of, at
least in part, the presence of tics; (b) children with tics are more likely
to be rated significantly lower on social acceptability measures
because of the tics; and (c) peer problems may not correlate with tic

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Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL 881

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; Spencer
et 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 a
decrease in peer problems.
Given the aforementioned concerns with respect to the impact of
school programming on the educational experience of children with
TS, the current survey was conducted to provide data in three areas.
First, the survey was conducted to obtain parental perceptions of how
childrens 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 on
the 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 with


tic disorders were recruited via parent-focused, Tourettes-related
Internet Usenet groups, various Tourettes-related mail lists and
discussion forums, and the investigators Web site (www
.tourettesyndrome.net). Participation was not restricted to those with
Internet access, and some respondents learned about the study when
their 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-mail
or regular mail. Of 41 e-mail replies and 35 mail replies, five
responses were unusable. The resulting sample consisted of reports by

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882 BEHAVIOR MODIFICATION / November 2005

69 respondents on 71 children and adolescents; one respondent


reported on more than one child.

PROCEDURE

Respondents were asked to complete a 15-page survey that


included structured and open-ended questions about tic symptoms
and history, tic impact on school experiences with respect to academ-
ics and peer relationships, and any perceived changes in academic
functioning or peer relationships that occurred if tics had remitted.
Other questions in the survey related to the use of peer education and
in-school counseling as support services, environmental accommoda-
tions provided to the children, attempts by school personnel to modify
the childrens tics, and changes in placement because of tics. Because
no attempt was made to obtain direct measures of school functioning
or tic severity, all results must be interpreted as reflecting the respon-
dents perceptions of their childrens experiences.1

RESULTS

The material in this section has been organized into subsections


that describe the sample characteristics and tic onset and course, the
impact of tics on academic functioning, the impact of tics on peer rela-
tionships, and school-based strategies in response to tics.

SAMPLE CHARACTERISTICS AND DESCRIPTION


OF TIC ONSET AND COURSE

Of the 69 respondents, 63 indicated that they were the childs bio-


logical mother, 4 indicated that they were the adoptive mother, 1 was
the grandmother and legal guardian of the child, and 1 was the childs
biological 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 boys
and 9 girls who ranged in current age from 6 years 6 months to 17
years 8 months, with a mean age of 11.13 years (SD = 3.00). Six of the
children had diagnosed tic conditions or TS without any other diagno-

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Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL 883

ses, while the remaining 65 children were reported to have comorbid


conditions. Consistent with reports from TS specialty clinics, ADHD
and OCD or OC behaviors were the most commonly reported
comorbid conditions: 37 children and adolescents were reported to
have ADHD, and 34 were diagnosed with obsessive-compulsive
behaviors or OCD. Environmental allergies (n = 25), learning disabil-
ities (n = 23), speech and/or language problems (n = 15), and mood
disorders (n = 13) were also reported, and although not a formal diag-
nostic term, 14 respondents indicated that their children had rage
attacks. Other conditions had reported frequencies of nine or less.
Because most of the children reportedly had diagnoses in addition to
TS, the term TS+ will be used to indicate children who have TS plus
comorbid or associated conditions (Packer, 1995).
The modal age of tic onset was 6 to 7 years, and all children in this
sample experienced their first tics by age 12. Consistent with previous
studies (e.g., Bruun, 1988), eye-blinking tics were the single most
commonly reported first tic. Coprolalia (the involuntary utterance of
sexually inappropriate or socially taboo expressions) was reportedly
experienced by 15% of the children at some point in the course of their
disorder, 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) was
reported for 24% of the children.
When asked about the course of their childrens tics, 19% of the
respondents reported a major improvement in tics; 28% reported
some 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 the


nature of any impact on academic activities, respondents specifically
mentioned 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 work
in 30 cases. Some respondents commented that their children were so
frustrated or distracted by their tics that they generally avoided start-
ing any handwritten work or reading or were more generally nega-

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884 BEHAVIOR MODIFICATION / November 2005

tively affected across all academic subjects and activities. Although


vocal tics were not cited as sources of interference with specific aca-
demic subjects, some respondents did report significant impact of
vocal tics on their childrens academic functioning. The single most
commonly reported impact of vocal tics was avoidance of reading
aloud or asking questions in class because of embarrassment over the
vocal tics or fear of peer rejection (n = 6).
When asked to describe the severity of tic impact on academic
functioning on a 5-point scale where 1 = no impact, 3 = moderate
impact, and 5 = significant impact, 50% of the respondents indicated
that their children experienced moderate to significant impact of tics
on academic performance, and an additional 24% reported mild
impact. Because of the nature of the sampling method and the fact that
no objective measures of impact were obtained, it is possible that
these rates are overestimates for the general population. It is interest-
ing to note, however, that in a sample where one might expect more
reports of significant impact, one half of the sample reported no
impact or only mild impact of tics.
The reports of tic impact on reading and handwriting activities by
respondents in the current survey were consistent with parental
reports in the Hagin et al. (1980) survey; although in contrast to the
previous surveys 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-ended
questions asking them to describe tic-related impact. Part of the appar-
ent discrepancy in findings between the surveys may be because of the
instructions in the current survey asking the respondents to confine
their reporting to tic-related interference only. In the classroom, a stu-
dent with TS-ADHD, TS-OCD, or TS-ADHD-OCD may experience
handwriting difficulties because of ADHD and OCD symptoms as
well as any TS-related impairment (Mavrogiorgou et al, 2001; Tucha
& Lange, 2001). If respondents had been asked to simply indicate
whether their children had handwriting deficits or impairment, it is
possible that there would have been many more reports of handwriting
problems.
If tics or TS do not significantly impair academic functioning, then
one might hypothesize that significant improvement in tic status

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Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL 885

would have no or little impact on academic functioning. In the current


sample, 19% of respondents reporting significant improvement in tics
also reported significant improvement in academic functioning that
they attributed to the improvement in tics. An additional 11% reported
that there had been improvement in academic functioning that was
probably not because of the improvement in tics. In the remaining
cases where tic status had reportedly improved significantly, the
respondents reported either no academic improvement (32%) or no
academic improvement because of persisting comorbid conditions
(38%). These results are in general agreement with studies described
earlier (Abwender et al., 1996; Spencer et al., 1998) and with the
results of another parental survey that found that parents of children
with TS+ viewed LD and ADHD as more significant problems than
tics (Dooley, Brna, & Gordon, 1999).

IMPACT OF TICS ON PEER RELATIONSHIPS

Respondents were asked a number of global and specific questions


about how the childrens tics affected peer relationships. In response
to a global question asking them to use a 5-point scale to indicate how
much impact their childrens tics had on peer relationships (apart from
any comorbid conditions), 48% of the respondents reported moderate
to 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 teased
or rejected by peers in school solely because of their tics, while the
remaining children were either teased a bit but never rejected (29%),
teased a lot but never rejected (10%), rejected a bit (18%), or rejected a
lot because of their tics (10%).
The 28% tic-related peer rejection rate is significantly higher than
the rate of peer teasing and bullying in the general population
(Olweus, 1993); however, because of the nature of the sampling
method 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 with
uncomplicated TS or TS+. It is also possible, however, that in an
actual classroom setting, children with TS+ might experience even

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886 BEHAVIOR MODIFICATION / November 2005

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 improved
if tics remitted significantly. Just as a subset of children reportedly
experienced 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 tics
remitted significantly. An additional 26% of the children reportedly
experienced improved peer relationships that the respondents did not
attribute 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 or
comorbid conditions that might also impair academic functioning,
one would expect to see a majority of children referred for SpEd or
receiving accommodations. Out of the 67 U.S. children, 34 were
reported 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 plan
was developed.2 These data, then, are in agreement with reports from
tertiary care settings that indicate that children with TS+ have high
rates of school problems.
Respondents were asked a number of specific questions about the
schools responses to their childrens 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 benefit
from activities comparable to benefit derived from peers who do not

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Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL 887

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 not
have the disability-related symptoms. If accommodations seem indi-
cated, consultation with the student (if appropriate), the childs par-
ents, and the treating clinicians should be arranged.
For the current sample, 72% of the children reportedly received
accommodations 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 accepted
definition of accommodation. As can be seen in Table 1, ignoring tics
was the most frequently employed strategy, while the most common
accommodations reported were giving the student permission to leave
the room, allowing extended time for class work and tests, use of pref-
erential seating, testing in a separate location, allowing the student to
use a word processor, and reducing homework.
The final column in Table 1 indicates the number of respondents
who identified a particular strategy or accommodation as being the
single most important strategy or accommodation. Respondents in
this survey generally agreed with respondents in the Hagin et al. (cited
in 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 study
indicate 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 be
quite correct that it is a useful strategy to employ because it might
prevent 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 be
necessary because of a variety of TS-related reasons: (a) VMI impair-
ment-related handwriting problems, (b) VMI impairment-related

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888 BEHAVIOR MODIFICATION / November 2005

TABLE 1
Reported Classroom Strategies in Response to Tics
Accommodation or Strategy n Single Most Important

Teachers ignore tics 43 11


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

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

problems in copying from the board, (c) tic-related interference with


handwriting, (d) distraction because of premonitory urges, (e) tic-
related interference with reading, (f) time pressure-related stress that
may increase tics, and (g) medication side effects, to name but some of
the possibilities.
Even if an accommodation is empirically validated for groups of
children with TS, however, it is important to note that its effectiveness
needs to be determined for the individual student. Many children with
TS reportedly receive accommodations; however, there are no data
suggesting that school personnel objectively determine whether any
particular accommodation is needed or effective for a particular stu-
dent. This issue is not specific to students with TS and appears to be a
widespread concern. For example, one review of the literature indi-
cates that there has been little research on the effectiveness of many

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Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL 889

accommodations provided by schools, and that students are often


given 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 or
no-longer-necessary accommodations are provided. In the absence of
research on the impact of accommodations on peer relationships, it is
possible that the more accommodations given to a child, the more the
child might view himself or herself as different, and the more the peers
might view the child as different, a situation that might contribute to
any peer rejection or sense of isolation the child might feel. For exam-
ple, consider what might happen when a teacher sends a student to a
separate location for testing without any determination that testing in
the alternate location actually improves test performance for the child,
reduces stress for the child, or improves peer relations for the child (as
might be the case if peers had been complaining about distraction dur-
ing tests because of the childs vocal tics). The child with TS may
resist going to another location, and in cases where peers are not com-
plaining about a childs tics, the peers may resent the fact that the child
with TS is getting special treatment. When thinking about how to help
students, then, the potential benefit(s) of any accommodations or
interventions must be weighed against any possible risks that the chil-
dren may feel different, broken, or incompetent, or that the children
may be stigmatized by isolating them from their peers.

Peer education. Respondents were asked whether they had ever


requested a peer education program or if one had been provided if
their children were experiencing tic-related peer difficulties. Twenty
participants reported that they had never requested one, nine
responded 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 experiencing
moderate to significant tic-related peer problems, schools provided
peer 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 in
reducing peer teasing and/or peer rejection, five participants reported

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890 BEHAVIOR MODIFICATION / November 2005

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

In-school counseling. Respondents were asked whether their chil-


dren received in-school counseling with the school psychologist or
social worker if or when the children were experiencing significant
difficulty in school because of their tics. For the subset of respondents
that 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 been
denied the service, 4% reported that they were told that no counseling
was available in their childrens schools, 4% reported that the school
did offer counseling but declined the service, 13% reported that coun-
seling was provided but did not help, and one parent reported that the
family was referred to a private therapist.
Walter and Carter (1997) suggested that the school psychologist
has a valuable role to play when it comes to behavior modification of
tics because school psychologists are ideally positioned to collect
necessary information to help develop a plan and then to monitor it for
efficacy. School psychologists also have a valuable role to play in
other ways, however. They support the teacher in service of the child
when they educate parents about the childs disability and how to deal
with school-related issues in the home, when they educate the teacher
about the nature and impact of a childs disability, when they advise
the teacher of accommodations that might be needed in the classroom
or in homework demands, when they advocate for the child to secure
needed related services and supports if the child has been referred for
special education, and when they provide counseling to help a student
cope with school-related problems. Given the extent of problems the
children and adolescents were described as experiencing, the relative
absence and/or ineffectiveness of in-school counseling is troubling.

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Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL 891

Although it is tempting to dismiss the reports from respondents in the


current survey as reflecting referral bias, other reports provide some
support for a concern about the extent to which school psychologists
are prepared and able to meet the needs of students with tics and TS.
For example, findings that the majority of children with TS are not
diagnosed 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 to
placement 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 be
underserved in those areas where there is an inadequate supply of
appropriately trained school psychologists to provide counseling and
support services to the student and to the teacher.

Attempts to modify tics. In considering whether to accommodate


tics or attempt to modify them, Cohen (1990) suggested that school-
based interventions are appropriate (a) when a child is falling behind
academically, (b) when tics are so forceful or frequent that they
directly interfere with learning or participation in classroom activi-
ties, (c) when the child has no friends or is suffering significant peer
problems because of their tics, and/or (d) when the childs self-esteem
is jeopardized. In the current survey, 75% of respondents indicated
that school personnel did not attempt interventions to modify their
childrens tics, 21% of the respondents reported that some attempt had
been made, and 4% were uncertain. When asked what specific strate-
gies had been tried to modify their childrens tics, 15 respondents
reported 11 different strategies that had been tried. For some children,
more than one strategy had been tried, yielding 28 different attempts
for 15 children.
Table 2 shows the reported strategies and their outcomes. The only
strategy that was reported to have any positive outcome involved
rewarding the children for trying to modify the tic(s). All other strate-
gies reportedly produced neutral or negative outcomes, although the
respondents did not provide data as to whether so-called negative out-
comes meant a worsening in tics, more emotional behavior, or some
other problem. Inspection of the tabled data reveals a contin-
gency outcome relationship such that interventions employing posi-

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892 BEHAVIOR MODIFICATION / November 2005

TABLE 2
Frequency and Reported Effectiveness of In-School Behavioral Inter-
ventions to Modify Tics
Outcome
Behavioral Strategy Negative Neutral Positive

Negative consequences
Publicly pointing out tics or commenting on them 4 0 0
Keeping child in at recess for ticcing 3 0 0
Sending child from room 3 0 0
Sending child to building administrator 2 0 0
Withholding field trips 1 0 0
Neutral or ambiguous consequences
Discreetly signal child when ticcing 3 4 0
Positive consequences
Reward for modifying tic 0 1 2
Reward for competing response 0 2 0
Reward for decreasing ticcing 0 1 0
Home reward for decreased tics in school 0 1 0
Home reward for modifying tic in school 0 1 0

NOTE: Behavioral interventions implemented by classroom teachers, as reported by the childs


parent or guardian.

tive contingencies were associated with either neutral or positive out-


comes, while interventions using aversive contingencies all yielded
reportedly negative outcomes. Discreetly signaling the students that
they were ticcing reportedly produced negative outcomes in some
cases and had no effect in other cases. The relationship between type
of contingency (negative, neutral, positive) and outcomes (negative,
neutral, positive) was significant, 2(4, N = 28) = 20.75, p < .001,
Cramers C = .65.
For the most part, the reported interventions listed in Table 2 are not
based on techniques that have been validated as being effective for
tics, 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 who
may not be knowledgeable about tics or validated techniques for tics
are 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

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Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL 893

punishment-dependent behavior programs with tic exacerbations and


increases in behavioral problems, and the respondents reports in the
current survey provide anecdotal support for this concern.
Because most tics of TS may wane or disappear within a matter of
weeks, implementing a behavioral approach is usually not required. In
most cases, supporting the child, the teacher, and peers in accepting
the situation and working creatively around the tic may be the most
effective strategy and may help foster children who are more resilient.
In those cases where a behavioral approach is appropriate (e.g., in
cases of chronic tics that interfere with functioning, and/or where the
childs tic jeopardizes placement in the program or significantly jeop-
ardizes peer relationships), school personnel should consult with the
childs parents, the childs treating professionals, and the child (when
appropriate) in developing the plan. School psychologists who can
assist the teacher in developing interventions based on positive rein-
forcement and research-validated interventions for tics may increase
the effectiveness of the intervention and may help prevent a worsening
of the students 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 childrens placement had been changed solely or primarily
because of their tics. For the current sample, four respondents (6%)
indicated that tics had been the sole or a primary factor in a change in
placement: One child was hospitalized, one child was placed in a com-
bination of regular education and SpEd classes, a third child was sent
to another school for a self-contained SpEd program, and the fourth
child was placed on home instruction. In light of the referral bias of
this sample toward cases of TS plus comorbidity and more severe
problems, if 6% of the current sample had their placement changed
solely 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 in
general agreement with previous findings by Abwender et al. (1996)
and Spencer et al. (1998) that TS may not be a significant factor in
SpEd placement.

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894 BEHAVIOR MODIFICATION / November 2005

SUMMARY OF MAJOR RESULTS

Approximately three fourths of the children described by a


recruited 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, whereas
vocal tics were more likely to interfere with reading aloud and partici-
pation in class discussions. When tics remitted significantly, 19% of
the children reportedly experienced improved academic functioning
and improved peer relationships; however, for the majority, academic
and 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 to
leave the room, preferential seating, and reducing homework were
among 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-
drens tics via behavioral interventions were reportedly unsuccessful
or counterproductive when aversive consequences were employed,
but attempts to modify tics through positive consequences for altering
tics reportedly produced some success.

DIRECTIONS FOR THE FUTURE

Tics are the cardinal feature of TS; however, they may be the least
of a students problems in school (Packer, 1997). In the absence of
research using children and adolescents with uncomplicated TS, no
firm conclusions can be drawn about whether TS significantly
increases the need for SpEd; however, the results of parent surveys
consistently 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 than
20 years apart provided almost identical reports in terms of what par-
ticular strategies or accommodations are helpful, controlled research

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Packer / TIC ACCOMMODATIONS AND INTERVENTIONS IN SCHOOL 895

using objective measures to assess the effectiveness of specific


accommodations or strategies might help school personnel avoid pro-
viding students with ineffective accommodations and might identify
other effective accommodations. For example, if a student has hand-
writing difficulties that may affect math calculations, does turning
lined paper sideways to provide column guides significantly increase
the accuracy of the calculations or are other accommodations more
effective? Similarly, extended time appears to be an appropriate
accommodation for tic-related interference in reading; however, are
there other techniques or accommodations that might also be
effective?
Studies on the long-term outcome of TS indicate that the majority
of 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 strategies
for helping the children cope with their tics or work around them in
academic activities and peer interactions. Hopefully, the results of the
current survey will stimulate more controlled research on school-
based accommodations and increase awareness of the need for both
more training of regular education teachers and more involvement of
school 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 education
receives 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 who
require accommodations because of their disability to have equal access to or benefit from their
educational 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, children
classified 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 of
1973.

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896 BEHAVIOR MODIFICATION / November 2005

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Leslie E. Packer, PhD is a NYS-licensed psychologist specializing in neurobehavioral


disorders. Currently in independent practice treating children and adolescents with
Tourettes 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 Assembly
Education Committee.

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