Information and Support for Educators (2024)

M, a bright teenager with Tourette syndrome (TS) and obsessive-compulsive disorder (OCD), was frustrated by eye tics when reading but tormented by the number 4. She could not calculate math problems if the digit 4 was part of the problem. She compulsively counted how many letters were in words to see if they were multiples of 4 and compulsively checked to determine if the number of words in a sentence was a multiple of 4. As her grades slipped precipitously, her tics and anxiety worsened, and her parents requested school accommodations for her symptoms. District personnel were shocked to learn of the severity of M’s problems and promised to provide the accommodations but did not follow through, even when M’s parents contacted them again. Two months later, never having been given the accommodations and now failing her courses, M attempted suicide.

Previous chapters have described the cardinal features of TS and its associated disorders. This chapter describes their impact on academic, behavioral, and social functioning and gives information about school-based accommodations and intervention strategies.

TS and Learning Difficulties

As discussed in Chapter 20, although some studies suggest possible differences in IQ scores between students with TS and their non-TS peers, most studies report that IQ scores of students with uncomplicated TS (TS only) follow the normal curve model. But lack of impact on IQ scores does not mean lack of significant impact on school functioning. Studies investigating the educational placement of students with TS consistently report higher-than-expected rates of students with TS in special education settings (Comings & Comings, 1987; Cubo et al., 2011; Kurlan et al., 2001). The overrepresentation of students with TS in special education may not be due to tics, however, as much as to the presence of learning disabilities and interference from associated disorders (Packer, 2005).

The rate of learning disability (LD) in TS has been a somewhat contentious issue. Although early studies reported higher-than-expected rates of LD in the presence of TS, these studies often lacked adequate controls. Failure to extend time as an accommodation for tic interference and failure to control for associated disorders may have contributed to overestimates of the rate of LD in students who have TS only. For students who have TS in combination with associated disorders, the most common LDs are in written expression and math calculations. Chapters 4 and 20 provide additional information on LD in TS.

Whereas TS only does not increase referrals to special education, the addition of attention-deficit/hyperactivity disorder (ADHD) strongly predicts referral to special education, even after controlling for the presence of LD. Children diagnosed with TS+ADHD and children with ADHD only do not differ from each other in rate of placement in special education. Significantly, tic symptom severity does not correlate with placement in special education, but ADHD symptom severity does (Spencer et al., 2001). OCD, which is also commonly comorbid with TS, does not appear to be a significant factor in removal from regular education placement by itself (OCD only) but does contribute to learning difficulties and occurs in higher-than-expected rates in special education settings for students with severe behavior-emotional problems (Cubo et al., 2011). Other associated disorders that increase the likelihood of removal from regular education include executive dysfunction (EDF), autism spectrum disorder (ASD), and bipolar disorder.

Impact of Tics on School Functioning

Even if TS only is not a significant risk factor for removal from regular education placement, tics can significantly interfere with learning and performance. In a recruited sample of parents and guardians of students with TS and associated disorders, Packer (2005) found that approximately three fourths of the children reportedly experienced some degree of tic-related interference in academic functioning; approximately half of the sample described the impact as moderate to severe. Simple motor tics involving the eyes, head and/or neck region, and upper extremities were reported as interfering with reading and handwritten work, while vocal tics reportedly interfered with reading aloud and participating in class discussions. These reports are consistent with other parent surveys on the impact of TS (Hagin et al., 1980, in Silver & Hagin, 1990; Hagin & Kugler, 1988).

Tics also interfere indirectly with learning or performance, such as when an urge to tic builds up. Some students may be acutely aware of these internal sensations (premonitory urges), while others are unaware. Awareness of premonitory urges emerges developmentally between the ages of 8 and 10 (Leckman et al., 2006). Awareness of an inner itch or tingle that precedes a tic or bout of tics distracts the student from paying attention, while attempts to suppress tics for fear of peers noticing may distract the student and decrease the accuracy of his or her work (Conelea & Woods, 2008b). Efforts to suppress tics may also lead to a build-up in frustration, fatigue, and irritability over the course of the school day.

Impact from tic interference will vary, in part, with the waxing and waning cycles of tics. Even when tics remit, however, most students continue to experience impaired academic functioning. Persisting academic impairment may be due to the impact of associated disorders that do not also remit (Packer, 2005).

Stress and Tics

Stressors do not cause tics, but they may exacerbate them (Silva et al., 1995). Stressors that may affect a student in school include time pressure (especially on tests), overarousal due to holidays or special events, fatigue, anxiety, infection, being overheated, feeling conspicuous or being observed, allergy seasons, and some social situations. In contrast, tics often decrease when the student is non-anxiously engrossed in an activity or a skilled task, using a special gift or talent, reading for pleasure, talking with friends, or during a novel task. For some students, allowing them to read for pleasure or work on an interesting puzzle or on the computer may provide short-term relief from severe or frequent tics. School personnel need to be aware, however, that some factors may have different effects on different students or even on the same student at different times. As one example, relaxation is often associated with a decrease in tics, but as the student first starts to relax, more tics may come out. See Table 1.2 in Chapter 1 of this volume and Conelea and Woods (2008a) for more information on environmental factors that may affect tic frequency and severity.

Other TS-Related Impairment

In addition to direct and indirect interference from tics, TS has also been linked to other potential sources of impairment in school functioning. As discussed in Chapter 20, however, the research has produced somewhat equivocal results as to whether some sources of impairment are attributable to TS per se or if they are better explained by the presence of associated disorders. As one example, although a number of earlier studies suggested visual-motor integration (VMI) deficits in TS, other studies suggest the VMI deficits are better explained by the presence of comorbid ADHD and OCD. In contrast, deficits in mental and written math (Brookshire et al., 1994; Burd et al., 1992) have been reported in individuals with TS only and may be due to attentional difficulties that are hypothesized to be intrinsic to TS (Chang et al., 2007; Huckeba et al., 2008; Schuerholz et al., 1996). Other deficits that have been linked directly to TS include deficits in habit acquisition (Marsh et al., 2004); inhibiting verbal responses or blurting, homework issues (Dornbush & Pruitt, 2009; Packer & Pruitt, 2010), and speech dysfluencies (De Nil et al., 2005).

Although questions as to whether specific deficits are directly or only indirectly linked to TS are fascinating, on a practical level educators simply need to know that a significant subset of students with TS will have the problems identified above. Each of these challenges may require accommodations, not only so that the student can learn and perform but so that tics are not exacerbated by the stress of these other challenges.

Common sense Accommodations for Tics in School Settings

Most students with TS require accommodations for their tics. Respondents in one small survey reported that their children received an average of more than four accommodations for tic-related interference (Packer, 2005). Although there has been no adequately controlled research on the effectiveness of in-school accommodations, parental and student reports consistently identify a number of accommodations as being useful.

Extended time is one of the most crucial accommodations. Because stress, especially time pressure, often increases tics, school personnel need to extend the amount of time provided for classwork, quizzes, and tests, and allow extra time to record assignments and pack up materials. Testing in a separate location with a proctor with whom the student feels comfortable allows the student to concentrate on the test without having to worry that others are noticing or being distracted by the student’s tics. Preferential seating also helps, but it is important to allow the student to determine where to sit. Students may prefer to avoid the front row or high-traffic areas and to sit off to the side or close to the door so they can discreetly leave if their tics become overwhelming. Allowing students to leave the room at their discretion and without having to call attention to themselves is also a helpful accommodation. School personnel need to collaborate with students to identify locations where they can go to either release tics in a private setting or restore themselves to a calmer state. For a student with prominent vocal tics, the school team may need to excuse the student from tasks or settings where the tics will be very noticeable or distracting (such as reading aloud, the school library, or study hall). When tics or the effort to suppress tics distracts the student from paying attention or taking notes, teachers will need to provide the student with a hard copy of any lecture notes or board work.

Other important accommodations for tics include reducing the amount to be read or written at any one time if tics are interfering directly or indirectly, reducing handwriting demands, reducing copying from the board, and using assistive technology such as books on tape, keyboarding, or voice dictation software. School personnel are encouraged to ask the student and the parents what accommodations are needed. In cases of severe, prominent, or socially problematic tics, peer education may be one of the most important accommodations, as discussed later in this chapter.

Two of the most helpful strategies teachers can use are to refrain from commenting on or responding visibly to a student’s tics and to model acceptance and support. Ignoring the tics publicly does not mean that the teacher cannot privately discuss the student’s tics with him or her to determine necessary supports or to empathize with the student. During any tic-oriented discussions, the student’s vocal tics temporarily increase (Woods et al., 2001), but in our experience, any temporary exacerbation is offset by the benefit of empowering the student in determining what supports or accommodations are needed.

Having a supportive teacher is one of the most significant protective factors in minimizing the potential negative impact of tics. Other protective factors of note include having supportive parents who encourage autonomy, having friends, an internal locus of control, and involvement in non-athletic activities (Cohen et al., 2008). Environments that nurture any enhanced creativity (discussed later in this chapter) are also protective.

Communicating with the student’s parents on an ongoing and regular basis is often an important piece of any plan for a student with TS. Tics will change over the course of the school year, and parents often see more tics at home than the teacher will see in the classroom. Through ongoing communication, parents can alert teachers to the student’s current stressors and tics so that the school can implement accommodations. Parents can also inform the teacher about medication side effects or changes the student may be experiencing that may interfere with functioning. In a mutually supportive relationship, educators support the parent in service of the student by ensuring that parents have sufficient information to assist their child with homework and by providing parents with helpful community resources and online resources for information and TS support. Chapter 30 provides some resources educators may wish to share with parents.

Impact of Associated Disorders on School Functioning

Most students with TS have features of one or more associated disorders; some of the commonly associated disorders are discussed in Chapters 2, 3, and 4. Educators need to be aware that the student with TS may have symptoms of one or (usually more) of the following challenges in addition to TS: ADHD, OCD, depression or bipolar disorder, non-OCD anxiety disorders, EDF, memory impairment, slow processing speed, behavioral disinhibition, anger issues, hypersensitivity to sensory stimuli, emotional dysregulation, deficits in VMI, impaired fine-motor control, and/or impaired graphom*otor skills. Some students with TS will also have comorbid ASD, which, as discussed in Chapter 4, predicts significant academic and social challenges.

Because the associated disorders are usually a greater source of impairment in academic functioning than the tics of TS (Du et al., 2010; Packer, 1997, 2005), educators also need to be aware of the impact of the associated disorders. Because most students with TS have comorbid disorders, a referral for a comprehensive assessment and a psychiatric evaluation to clarify the student’s diagnoses is often necessary. For many students, referral to the school’s occupational therapist and speech and language pathologist will be important in addressing academic, behavioral, and social skills issues. For students with ASD, the school’s autism consultant will need to identify additional necessary accommodations and interventions.

In the remainder of this chapter, students with TS who have associated disorders or features of associated disorders are denoted as having “TS+.” Although the most common TS+ pattern may be TS+ADHD+OCD (Packer, 1997), in the following material “TS+” can indicate any pattern of associated disorders.

Handwriting

Handwriting is often impaired for students with TS+ (Packer, 1997; Packer & Gentile, 1994), but the nature of the deficit varies as a function of comorbid conditions. Tics can interfere with the production of neat handwriting, but comorbid OCD may also interfere if there are writing rituals such as erasures and rewriting. Similarly, while students with severe OCD tend to have very small handwriting, students with ADHD tend to have large and sloppy handwriting. The classroom teacher may need the assistance of the school’s occupational therapist to assess the student’s graphom*otor skills and the advice of both the occupational therapist and assistive technology specialist to suggest necessary accommodations or devices to compensate for the student’s handwriting problems. Handwriting is one of the biggest sources of frustration for students with TS. Accommodating production problems and difficulty copying from the board can make the difference between a successful school year and an unsuccessful one.

Homework

Most students with TS+ also have significant homework issues. Sleep problems may interfere with completion of work, and for students with comorbid OCD, perfectionistic rituals may interfere with completion. For students with comorbid ADHD of the inattentive subtype (ADHD-I), sluggish cognitive tempo or slow processing speed may impede their ability to complete homework, while students with comorbid EDF may fail to complete their homework because they failed to record all of their assignments and pack up all necessary materials. For some students, homework time may be after any medication they take for school wears off. Homework is a frequent source of “storms” or “meltdowns” in the home. School personnel need to screen for homework issues that may require accommodations (see Packer and Pruitt, 2010, for a homework problems screening tool teachers can use). Homework needs to be on the student’s independent level and parents need to let the school know if the child cannot complete assignments independently or if the parent is actually doing the homework for the child to prevent a “storm.”

Executive Dysfunction, Memory Impairment, and Processing Speed Deficits

Some of the most influential aspects of TS+ are “hidden” disabilities such as EDF, memory impairment, and processing speed deficits. EDF may impair the student’s organizational skills, social functioning, and academic tasks such as written expression and long-term projects (Dornbush & Pruitt, 2009). Although students with TS only generally do not have deficits in planning or problem solving (see Chapter 20), and not all students with TS+ have comorbid EDF, school personnel need to be especially alert to it in students who are disorganized, fail to complete and turn in homework, and/or have poor social skills. Students with EDF may require accommodations and direct instruction in skills such as recording assignments completely, packing up necessary materials, breaking big tasks into smaller tasks with intermediate deadlines, study skills, and generating prioritized to-do lists. Students with EDF-related homework problems may benefit from appropriate organizational skills interventions (Evans et al., 2005; Langberg et al., 2008a, 2008b, 2010). Screening for organizational problems can help identify students who will require accommodations (see Packer and Pruitt, 2010, for a screening tool teachers can use). It is especially helpful for schools to use the Behavior Rating Inventory of Executive Function (BRIEF; Gioia et al., 2000) to evaluate students with suspected EDF or students who are having significant academic issues. The BRIEF helps teachers, parents, and students appreciate the impact of EDF on functioning, highlights specific areas of weakness that require accommodations and remediation, and changes the conversation from “lazy student” to “neurologically impaired student.” Drs. Murphy and Eddy review some of the research on EDF in Chapter 20.

Memory deficits also impair academic functioning. In Chapter 20, Drs. Murphy and Eddy review some of the research on memory functions and TS. From an applied perspective, school personnel need to be especially aware of, and screen for, working memory deficits. Working memory deficits impair the student’s ability to retain information while skills are being applied or to comply with multistep directions. Such deficits are common in ADHD (Kofler et al., 2010, 2011; Martinussen et al., 2005) and depression (Klimkeit et al., 2011).

Other types of memory impairment include procedural memory and strategic memory deficits. These deficits reduce the student’s ability to automate certain skills or sequences and reduce their use of strategies to recall important information. For a subset of students with TS, handwriting is a skill that never becomes fully automatic. While their peers are simply recording the content of a lecture, such students have to actively think about how to form the letters they are writing. Deficits in prospective memory affect the ability to remember what needs to be done in the future, while deficits in metamemory impair the ability to understand and appreciate one’s memory strengths and weaknesses. Students with memory impairments require accommodations as well as instruction in strategies for enhancing memory.

Speed of processing affects the efficiency of working memory and the student’s ability to process orally presented material in a timely fashion. As a consequence, the student often misses important information or does not have adequate time to consolidate it with previously acquired information. Slow speed of processing is associated with inattentive behavior and has been reported in students with TS (Khalifa et al., 2010), OCD, ADHD-I (Weiler et al., 2000), anxious/depressed symptoms (Lundy et al., 2010), and bipolar disorder (Doyle et al., 2005). Teachers can accommodate slow processing speed by simply pausing more in their speech to give the student time to catch up, by giving one instruction at a time for multistep instructions, and by extending time on tests.

Although an in-depth discussion of the impact of the associated disorders and their management in school settings is beyond the scope of this chapter, Table 29.1 provides a highly simplified overview of just a few of the types of impact educators may observe in the school setting, along with a few suggested accommodations for each problem. Note that ADHD is omitted from the table as a separate diagnosis in favor of treating impulsivity and attentional problems as challenges that are also features of other disorders. ASD and some other challenges mentioned in this chapter are also omitted although they, too, need to be addressed. Because there is almost no controlled research on the efficacy of particular accommodations, the tips in Table 29.1 are based on our experience as well as parental reports in published surveys on school experiences.

Table 29.1

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Associated Disorders or Challenges, Potential Impact, and Accommodations or Strategies for Educators in TS

Disorder or challenge

Potential impact

Accommodations or strategies

Attention or focus deficits

Student misses information and directions.Student takes longer to complete work.Student misses social cues, resulting in inappropriate responses to peers.

Provide hard copy of all information.Allow extra time for classwork and tests.Provide direct instruction and practice in areas where student misses social cues.

OCD and non-OCD anxiety disorders

Disorder interferes with processing and memory.Student avoids certain tasks or settings.Student gets “stuck” and cannot move on with work until it is “just right.”Student has difficulty making transitions.

Do not assign more work than can be completed in available time.Reduce environmental triggers.Reduce work if symptoms interfere with timely completion.Pre-warn about transitions.

Mood disorders

Mood disorders carry an increased risk of suicide and severely impulsive and self-injurious behaviors.Mood disorders present as severe irritability in some students.Mood disorders vary in impact by type of mood episode.

Refer for psychiatric evaluation if mood or behavioral changes last more than 2 weeks or if there are safety concerns.Allow student to go to a “safe person or place.”More than one accommodation plan is needed as mood status changes.

Homework problems

Homework problems create conflict at home and school and result in lower grades.Medication may have less impact later in the day.Student may fail to record assignments and pack necessary materials.Student will require parental supervision and assistance with homework.Homework problems lead to feelings of failure and hopelessness.

Screen for homework problems.Do not penalize for lateness.Modify and reduce homework.Make sure assignments are recorded accurately and needed materials are packed.Ensure parents have adequate information and support so they can assist their child.Ensure that student achieves homework success.

Visual-motor integration, graphom*otor, fine-motor deficits

Student produces sloppy handwriting.Student has difficulty copying from the board.Student has reduced endurance for written tasks.Student avoids lengthy writing tasks.

Reduce handwriting demands.Give copy of notes from the board.Refer to occupational therapist.Refer for assistive technology.

Executive dysfunction

Executive dysfunction impairs organization.Student has difficulty planning and completing work.Student struggles with prioritization.Student lacks adequate study skills.

Color-code books and materials by subject.Assist with planning reports and projects.“Chunk” big projects and monitor progress.Use syllabus and provide partial notes.Teach and rehearse study skills.

Impulsive or disinhibited behavior

Impulsive or disinhibited behavior increases safety risks.Student loses temper inappropriately.Student interrupts others.Student makes careless errors in work.

Increase adult supervision.Teach coping skills.Teach strategy of covering mouth.Provide cues such as editing strips.

Memory impairments

Student cannot hold information in mind long enough to act on it and to store it.Memory impairments reduce the student’s ability to retrieve information, impair the automaticity of sequences, and decrease memory for strategies.

Reduce amount of material presented at one time and use electronics to externalize memory.Use cognitive strategies to assist with retrieval.Teach mnemonics for sequences.Have student collect strategies to use.

Sensory defensiveness

Student overreacts to sensory stimuli, which may lead to “storms.”Student avoids strong sensory experiences.This may lead to reduced social interactions.

Refer to occupational therapy.Allow the student to avoid sensory overload. Strategies may include letting the students leave class early to avoid noises in hall, and encouraging the student to eat lunch with a friend in a quiet setting.

Sleep disorders

Student has difficulty waking up, resulting in attendance issues.Student falls asleep while doing homework.Sleep disorders impair the student’s focus and memory, possibly leading to aggressive behavior.

Recommend a sleep hygiene program and do not penalize for lateness.Reduce and modify homework.Modify classwork and provide notes.Refer for functional behavioral assessment.

Difficulties with written expression and long-term projects

Student has great difficulty starting, planning, and completing work.Student feels overwhelmed by long-term projects and avoids work.Student cannot organize and sequence ideas.Student cannot edit while writing.Student can edit only one thing at a time.

“Chunk” big assignments into smaller tasks with intermediate deadlines.Enter deadlines in planner and monitor progress toward intermediate goals.Provide visual or graphic organizer.Allow separate time for editing.Use a cognitive or visual cue strip to edit.

Disorder or challenge

Potential impact

Accommodations or strategies

Attention or focus deficits

Student misses information and directions.Student takes longer to complete work.Student misses social cues, resulting in inappropriate responses to peers.

Provide hard copy of all information.Allow extra time for classwork and tests.Provide direct instruction and practice in areas where student misses social cues.

OCD and non-OCD anxiety disorders

Disorder interferes with processing and memory.Student avoids certain tasks or settings.Student gets “stuck” and cannot move on with work until it is “just right.”Student has difficulty making transitions.

Do not assign more work than can be completed in available time.Reduce environmental triggers.Reduce work if symptoms interfere with timely completion.Pre-warn about transitions.

Mood disorders

Mood disorders carry an increased risk of suicide and severely impulsive and self-injurious behaviors.Mood disorders present as severe irritability in some students.Mood disorders vary in impact by type of mood episode.

Refer for psychiatric evaluation if mood or behavioral changes last more than 2 weeks or if there are safety concerns.Allow student to go to a “safe person or place.”More than one accommodation plan is needed as mood status changes.

Homework problems

Homework problems create conflict at home and school and result in lower grades.Medication may have less impact later in the day.Student may fail to record assignments and pack necessary materials.Student will require parental supervision and assistance with homework.Homework problems lead to feelings of failure and hopelessness.

Screen for homework problems.Do not penalize for lateness.Modify and reduce homework.Make sure assignments are recorded accurately and needed materials are packed.Ensure parents have adequate information and support so they can assist their child.Ensure that student achieves homework success.

Visual-motor integration, graphom*otor, fine-motor deficits

Student produces sloppy handwriting.Student has difficulty copying from the board.Student has reduced endurance for written tasks.Student avoids lengthy writing tasks.

Reduce handwriting demands.Give copy of notes from the board.Refer to occupational therapist.Refer for assistive technology.

Executive dysfunction

Executive dysfunction impairs organization.Student has difficulty planning and completing work.Student struggles with prioritization.Student lacks adequate study skills.

Color-code books and materials by subject.Assist with planning reports and projects.“Chunk” big projects and monitor progress.Use syllabus and provide partial notes.Teach and rehearse study skills.

Impulsive or disinhibited behavior

Impulsive or disinhibited behavior increases safety risks.Student loses temper inappropriately.Student interrupts others.Student makes careless errors in work.

Increase adult supervision.Teach coping skills.Teach strategy of covering mouth.Provide cues such as editing strips.

Memory impairments

Student cannot hold information in mind long enough to act on it and to store it.Memory impairments reduce the student’s ability to retrieve information, impair the automaticity of sequences, and decrease memory for strategies.

Reduce amount of material presented at one time and use electronics to externalize memory.Use cognitive strategies to assist with retrieval.Teach mnemonics for sequences.Have student collect strategies to use.

Sensory defensiveness

Student overreacts to sensory stimuli, which may lead to “storms.”Student avoids strong sensory experiences.This may lead to reduced social interactions.

Refer to occupational therapy.Allow the student to avoid sensory overload. Strategies may include letting the students leave class early to avoid noises in hall, and encouraging the student to eat lunch with a friend in a quiet setting.

Sleep disorders

Student has difficulty waking up, resulting in attendance issues.Student falls asleep while doing homework.Sleep disorders impair the student’s focus and memory, possibly leading to aggressive behavior.

Recommend a sleep hygiene program and do not penalize for lateness.Reduce and modify homework.Modify classwork and provide notes.Refer for functional behavioral assessment.

Difficulties with written expression and long-term projects

Student has great difficulty starting, planning, and completing work.Student feels overwhelmed by long-term projects and avoids work.Student cannot organize and sequence ideas.Student cannot edit while writing.Student can edit only one thing at a time.

“Chunk” big assignments into smaller tasks with intermediate deadlines.Enter deadlines in planner and monitor progress toward intermediate goals.Provide visual or graphic organizer.Allow separate time for editing.Use a cognitive or visual cue strip to edit.

As can be seen in Table 29.1, students with TS+, regardless of whether they meet full diagnostic criteria for any associated disorders, are likely to experience numerous sources of interference in the school setting. Resources with additional information on impact and accommodations can be found elsewhere (Adams, 2011; Dornbush & Pruitt, 2009; Killu & Crundwell, 2008; Packer, 2009; Packer & Pruitt, 2010).

Referring Students for Assessment

As suggested by the preceding material, students with TS+ may have a complex and confusing array of symptoms and challenges. For many students, referral to the school’s occupational therapist and speech and language pathologist will be important in addressing academic, behavioral, and social skills issues. For other students, an autism consultant may need to assist the team in identifying additional necessary accommodations and interventions. For students with TS+ who are not performing commensurate with their potential, a referral for a comprehensive assessment that includes a neuropsychological assessment is often crucial to developing an appropriate set of accommodations and interventions. A referral to a psychiatrist may also be needed to clarify the student’s diagnoses and to help the school team understand the student’s behavior.

When referring a student for assessment, the following types of information will help the assessment team determine what specific assessments may be needed:

1.

A teacher narrative describing the student’s academic, behavior, and social-emotional functioning with a statement of teacher concerns. We find teacher narratives particularly helpful over and above any teacher-completed scale or checklist on attention and behavior.

2.

Handwritten work samples that illustrate what the student typically produces when asked to write more than a sentence by hand. Work samples that involve written expression and copying from the board are particularly helpful. Such work samples may also usefully include a sample of math calculations if there are handwriting issues.

3.

Report cards from previous year(s) and current year if significant deterioration in performance has been noted.

4.

A narrative or statement from the parent as to the parent’s concerns about the child’s school functioning. Having parents complete the BRIEF and screening tools in Packer and Pruitt (2010) about their child’s sleep, homework, and organization can provide valuable information to assessors.

5.

A statement from the student (if possible) outlining his or her concerns about school functioning. Students with suspected EDF can also be asked to complete the student survey tools in Packer and Pruitt (2010) about their study and homework habits.

6.

A description of the student’s strengths or special talents. Capitalizing on the student’s strengths and talents is an important element in developing school-based plans.

Although not every student requires a neuropsychological assessment, for those who do, a helpful report will include both a full description of the deficits and sources of interference the student faces in school as well as a description of necessary and appropriate accommodations and interventions for each area of deficit. For students who are being treated pharmacologically for symptoms of TS+, the report also needs to clarify how the current medications may be affecting the student’s performance.

“Naughty or Neurology?” Behavior Problems in School

Students with TS+ are often misunderstood as engaging in intentional misbehavior because school personnel may not recognize the behaviors as neurological symptoms. Educators often ask us, “Is this a behavior or a symptom?” as if something is one or the other. To be clear, when using the term “behavior,” there is no implication that it is wholly voluntary. Similarly, labeling something a “symptom” does not imply that it cannot be modified by self-regulation, treatment, interventions, or altering the environment and antecedents to its occurrence. And although parents may be reluctant to allow the school to target a medical symptom, it is incumbent on schools to appropriately address self- or other- injurious symptoms or symptoms that may result in expulsion or removal to a more restrictive placement. Other symptoms may need to be addressed because they seriously impair the development of normal social and peer relationships. To address them safely and effectively, however, schools generally need to obtain professional guidance.

Why School-Based Behavior Plans Often Fail—or Backfire

Attempting to modify tics or symptoms of TS+ is fraught with pitfalls. The school will need to conduct a functional behavioral assessment and secure the assistance of professionals with expertise in these disorders, in behavioral analysis, and in modifying behavior. Often, the first step is educating personnel that (1) the symptom is not willful or voluntary, (2) the root cause of the problem is not motivational, and (3) the student cannot behave appropriately just by “trying harder.” The confusion is understandable: symptoms often look purposeful and may be highly variable, leading some educators to wonder if a student’s noncompliance on a particular day indicates lack of motivation. After all, he could behave appropriately yesterday, right?

If the solution were really to motivate the student to “just try harder,” then a simple incentive plan whereby the student earns immediate and student-selected rewards for appropriate or desirable behavior might suffice. In actual practice, consequence-based plans often fail because the cause of the problem is not lack of motivation. Not only do some plans fail, but inappropriately applied positive-based interventions may lead to demoralization, frustration, and worsening symptoms. Just as medications may have adverse effects, so, too, can behavioral interventions (Packer, 2005). Thankfully, one tool, if administered properly, can often help school personnel avoid some pitfalls.

The All-Important Functional Behavioral Assessment

In our experience, the single most common explanation for inappropriate school-based interventions is failure to conduct comprehensive assessments. Functional behavioral assessments pinpoint the antecedents for the problematic symptom and identify other factors that need to be addressed. At the very least, the school team needs to:

1.

Collect objective and quantifiable baseline data on the to-be-targeted behavior in an A-B-C (Antecedent, Behavior, Consequences) format across settings, tasks, and times of day

2.

Assess the student for other factors that may contribute to the behavioral problem, including handwriting issues, working memory or processing speed deficits, sleep problems, deficits in social skills, deficits in executive functions, homework hassles, and sensory defensiveness

3.

Interview all teachers to determine under what conditions the behavior occurs in their class and under what conditions it does not occur

4.

Interview the parents to determine whether the behavior also occurs in the home or community, and if so, under what conditions it does occur and under what conditions it does not occur

5.

Interview the student (if possible) to determine his or her awareness and understanding of the behavior’s impact on himself or herself and others. Determine the student’s willingness to address it, and what supports are needed to help regulate or modify the behavior.

School personnel are also encouraged to ask the student’s prescribing physician whether the observed behavioral concerns might be an adverse effect of medications. Some medications may have adverse behavioral effects such as activation or increased impulsivity, school phobia, or agitation and restlessness.

Conducting a functional behavioral assessment is especially important if the student exhibits school avoidance or school refusal. There may be a variety of factors that need to be addressed. A functional behavioral assessment is also crucial if the student has “meltdowns” or “storms” in school.

“Meltdowns” or “Storms”

Some students experience what are variously called “meltdowns” (Greene, 1998), “storms” (Dornbush & Pruitt, 1995), or “rage attacks” (Budman et al., 1998). These incidents are not temper tantrums or attempts to manipulate the teacher: they indicate a temporary loss of control that can be due to a variety of factors or combination of factors. During such incidents, the student may yell, curse, or say and do things he or she would not normally say or do. Afterwards, the student may be genuinely remorseful or have no recollection of what he or she said during the incident. Some of the relevant research on rage attacks is described in Chapters 4, 20, and 25.

Loss of control is easier to prevent than to deal with once it has occurred. A comprehensive assessment is crucial so that school personnel can eliminate or reduce triggers, provide stress-reducing accommodations, and implement remedial training in any deficient academic or social skills that contribute to the problem. As part of such remediation, students may require direct instruction in how to handle frustration in acceptable ways.

In some cases, teachers may detect warning signs of an impending meltdown (some students suddenly get louder or may seem more frustrated and unable to tolerate anything). School personnel may help avert a storm by encouraging the student to take a break out of the classroom, to take a walk, or to engage in some physical activity. If the student is accompanied by a paraprofessional during any such walk, the aide needs to avoid touching the student or initiating conversation with the student.

If a storm has not been avoided, then after the storm, the teacher should allow the student to go to some place to calm down or to engage in a quiet and calming activity. Some students may need to sleep. School personnel should not attempt to analyze the meltdown with the student right after the incident; this may lead to a rekindling of the problem. There is plenty of time to discuss it later.

Discipline Means Training, Not Punishment

As concerned as we are about ineffective and potentially harmful positive-based interventions, we are more concerned about punitive or aversive consequences applied to symptoms. As examples, we have seen students directed to, taken to, or even forcibly dragged to time-out rooms because they were “stuck” and could not cooperate with their teachers; we have seen students suspended for lashing out at teachers who did not appreciate the “fight-or-flight” nature of panic attacks or OCD; and we have seen students suspended for having a “storm” in situations where the school had not provided necessary accommodations and supports. When staff is adequately trained to recognize and accommodate symptoms of the student’s disability, many situations do not escalate or become problematic.

Punishment is basically an attempt to motivate the student not to do something again. However, if the problem is due to a skills deficit such as inability to make a transition, attempting to boost motivation by punishing the student will not result in the desired outcome and will often backfire. It is easier, and more effective, to change the environment and what we do before behavior occurs than to try to deal with undesirable behavior after it occurs.

Empathy as an Intervention

“I’ve come to the frightening conclusion that I am the decisive element in the classroom. It’s my personal approach that creates the climate. It’s my daily mood that makes the weather. As a teacher, I possess a tremendous power to make a child’s life miserable or joyous. I can be a tool of torture or an instrument of inspiration. I can humiliate or humor, hurt or heal. In all situations, it is my response that decides whether a crisis will be escalated or de-escalated and a child humanized or dehumanized.” (Dr. Haim Ginott, 1975)

Based on our experiences working with students and in school settings, the most important single intervention is to arrange for professional staff development that increases teachers’ awareness of symptom interference and accommodations. Including experiential activities and quotes from students will enhance the effectiveness of training and promote empathy for the student. Although we have made significant progress in some countries and areas, there are still too many areas where TS is neither recognized nor understood. Thus, Wei (2011), describing the situation in Taiwan, writes:

“Only recently has the disorder gained national attention, in part because a middle school student with Tourette syndrome was accused of cheating because he repeatedly shook his head and made disruptive noises while taking the National High School Entrance Examination; the student was unfairly given a score of `zero.’ Still, the public has little understanding of the disorder.”

Academic failure, such as that experienced by “M,” whom we described at the beginning of this chapter, or the student who was failed because his teachers did not understand TS, can increase the risk of suicide by a factor of five, even after controlling for self-esteem, locus of control, and depressive symptoms (Richardson et al., 2005).

We can do better and we must do better.

Social Issues in Students with TS+

“The school is not quite deserted,” said the Ghost. “A solitary child, neglected by his friends, is left there still.” (Charles Dickens, 1843)

Tics, TS, and Peer Problems

Tics have been associated with significantly increased rates of peer harassment, bullying, and rejection (Conelea et al., 2011; Packer, 2005; Storch et al., 2007; Wei, 2011). Students with TS are more likely to withdraw from their peers, who may view students with tics as being less socially acceptable. As a consequence, students with TS report poorer perceived quality of life (Eddy et al., 2011). Even what school personnel may consider “mild” cases of tics may have significant social and emotional consequences (Bernard et al., 2009) that persist even when tics remit or wane (Packer, 2005).

For students experiencing peer harassment or rejection due to their tics, a peer awareness program may help. In conducting peer education programs, it is helpful to include what Pruitt calls a “Bully Blaster” comment, something like, “I am so glad that you are all fifth graders because you are too mature to tease students with tics like some first graders do.” The few available studies on peer education report that such programs may lead to improvement in peers’ stated attitudes toward students with tics (Holtz & Tessman, 2007; Woods et al., 2003), but the improved intentions may not translate into improved peer relationships without additional supports (Woods & Marcks, 2005). In some cases, using a “Circle of Friends” technique (a community-based inclusion program) may be of benefit, although there is no research on this approach as applied to students with TS (Dykens et al., 1999). Pairing the student with a supportive peer for academic activities may also promote greater social acceptance.

Before conducting a peer education program in which a student is identified, school personnel need to secure parental and student consent. Some students feel empowered by having an opportunity to explain TS to their peers, while others will not want to be identified or to participate. There is some research on adults that suggests that self-disclosure may be helpful (Marcks et al., 2007), and while there is no guarantee that students will not be teased if they self-disclose, our experience has been that students’ tics decrease once they are no longer under self-imposed stress to hide their tics or keep them a secret.

Impact of Associated Disorders on Peer Relationships

Just as associated disorders contribute significantly to academic problems, they also contribute significantly to peer and social problems. ADHD is a significant contributor to peer problems. Children with ADHD are categorized as victims, bullies, and bully/victims more often than their non-ADHD peers (Wiener & Mak, 2009); up to 80% are rejected by their peers or have no dyadic friendships (Erhardt & Hinshaw, 1994; Hoza, 2007). Students with the combined subtype of ADHD appear interfering, noncompliant, and aggressive and are actively rejected by their peers, while those with AHDH-I appear shy, anxious, and withdrawn and are neglected by their peers.

OCD, with its obsessions, often bizarre compulsions, and resulting inflexibility, may lead to victimization and peer problems (Piacentini et al., 2003; Storch et al., 2006). The student who has to have everything “just right” or gets “stuck,” the student who is overly sensitive to mistakes and criticism, and the student who feels morally obligated to point out others’ failings is less popular with peers.

Mood disorders such as dysthymia, depression, and bipolar disorder also have a significant impact on peer and social relationships. Students experiencing a loss of enjoyment or energy may withdraw from their peers, while students who are in the throes of a manic episode may be irritable, grandiose, paranoid, or aggressive. Even when not in an obvious mood episode, a subset of students with bipolar disorder have difficulty reading facial emotions accurately and will miss important nonverbal cues in their interactions with peers (Schenkel et al., 2007).

As with academic impairment, EDF is one of the most socially influential disorders. It may be helpful to think about the child with EDF as being socially “clueless” (Pruitt, 1995, in Dornbush & Pruitt, 2009), where the “clues” are missing pieces of information or skills that need to be directly taught or provided. Deficits in problem solving, setting realistic goals, time management, prioritizing, organizing, sequencing, flexibility, initiating, executing, self-monitoring, using feedback appropriately, and inhibiting may all impair the child or teen’s ability to be socially successful.

Students who have working memory deficits will be impaired socially due to difficulty following social directions, forgetting what they want to say while speaking, difficulty holding on to complex social situations, and difficulty keeping important information in mind long enough to record it for the future. Imagine the challenges a teenager with working memory deficits faces if he receives an oral invitation and cannot record it immediately. If he is told, “We’re going to meet at Northcrest Mall, at 7 p.m., in front of the movie theater on the south side of the mall, and then go for pizza with Dan, Darin, Jory, and Julianna,” the odds are he will not be in the right place at the right time.

Processing deficits or delays also may impair the ability of the student with TS+ to socialize. The normal give-and-take of conversations requires rapid processing and rapid ability to generate responses as well as the ability to sift through complex social information such as multiple directions.

As suggested by the preceding discussion, there are numerous possible sources of negative social impact for students with TS+, and the more diagnoses or comorbid conditions they have, the greater their challenges and the greater the need for the school’s support.

Remediating Social Skills Deficits

A social skills deficit not only impairs current interactions but also increases the risk of substance abuse, depression, atypical friendships, delinquency, school failure, and school dropout (Barkley, 2006). Impaired social skills may also limit the student’s future ability to obtain a job, make and keep friends, and form a lasting relationship with a spouse. It is not just students with ASD who need social skills curricula; students with TS+ who do not have ASD may require direct instruction in social skills, especially if they have EDF. Although a description of such a curriculum is beyond the scope of this chapter, information and resources for a social skills curriculum are detailed in Dornbush and Pruitt (2009).

In the remainder of this section, we describe some simple school-based coaching interventions that school personnel can employ. Just as a sports coach tells an athlete what to do at the point of performance, so, too, can school personnel provide point-of-performance direct instruction in how to be socially successful. As students gain skills or can participate in analyzing their own behavior and interactions, the approach shifts to an interactive and cooperative problem-solving technique, also described below. Discussion of these techniques can be found in Packer and Pruitt (2010).

Instant Replay is a technique used to review and correct a past social blunder right before the student is in the same type of situation again. In a calm voice, the teacher privately tells the student the impact of his or her previous behavior on peers and provides concrete directions as to what to do this time instead. The student then immediately tries to implement the coach’s directions and comes back to evaluate its success. If the student forgets to report back, the teacher initiates the follow-up. As an example:

Justin and his best friend Loren were chatting amiably over lunch until Loren asked Justin if she could have one of his cookies and Justin refused. The teacher, observing Loren’s hurt and angry expression, walked over and told Justin she needed his help. Outside of the cafeteria, the teacher neutrally told Justin that Loren had felt hurt by his response, and reminded him how Loren had shared her desserts with him in the past. The teacher suggested Justin go back and offer Loren his remaining cookie with a cheery, “Friends share!” Justin followed the suggestion and reported back that Loren was smiling and happy with him.

Coached behaviors will not automatically generalize, and rehearsal and repetition across settings is required—for example, Justin may need to be coached how to share crayons during tasks, how to share equipment on the playground, etc. Instant Replay can also be used to spontaneously reinforce appropriate social skills by pointing out what the student just did, how it positively affected his or her peers, and how the peers reacted positively to the student’s behavior.

Cooperative Problem Solving (P.L.A.N.) can be used for students who have the potential to think about their own problems and generate possible solutions. For many students, recognizing a problem or defining it is a major hurdle. An adult may need to initiate the process by identifying the problem for the student and asking the student to consider how to solve it. The mnemonic “P.L.A.N.” (Pruitt & Pruitt, 2001, in Packer & Pruitt, 2010) can remind the student of the steps: Problem defined, List options, Act on one, Now evaluate. As one example:

When Michael dropped his papers in front of his peers, he felt embarrassed. His friend David offered to help pick them up, but Michael yelled, “Get away — I can do it myself!” David walked away, and instead of sitting with Michael at lunch, he joined others. Michael was confused and did not understand why David was ignoring him. He asked his teacher what happened. The teacher explained that David had felt hurt by what Michael had said, and she asked Michael what he might do to repair the relationship. Michael generated a few ideas: he could give David time to cool off, he could try apologizing, or he could try apologizing and offering to let David play with a new toy that he knew David wanted to try. Michael decided to implement the third option, and he came back to the teacher afterwards to let her know that his “P.L.A.N.” had worked well and the boys had played together at recess.

In the P.L.A.N. approach, it is important to encourage the student to generate the possible solutions; the teacher should refrain from offering suggestions unless the student cannot come up with any ideas and requests a suggestion. That said, school personnel may help the student by asking questions that point out possible problems with the plan.

One technique to help students avoid embarrassment is to use a “Graceful Exit” system (Pruitt, 1995, in Dornbush & Pruitt, 1995). Students are given their own pass to keep with them. The pass is used when they feel that staying in the classroom might lead to negative peer reactions—for instance, if they are having a bout of tics or an anxiety attack, are “stuck,” or are about to have a meltdown. The pass allows the student to go to an agreed-upon location to calm down, to take a brief walk, or to go discharge tics without having to first ask the teacher for permission to leave the room. The plan may also include the teacher using previously agreed-upon cues to alert the student to leave. Graceful exits are not always as graceful as one would hope. Even if the student appears to grumble or mutter while leaving the room in response to the teacher’s signal, the teacher should consider it a success and reinforce the student for leaving. Learning to extricate themselves from situations before they embarrass themselves is an important life skill that students will need to help them keep jobs and maintain family relationships. When students do not know how or when to remove themselves, direct instruction is crucial.

Reparations is one of the most effective tools for teaching students how to take responsibility for the impact of their behavior on others and how to clean up after they have made a social blunder or hurt others’ feelings. In the P.L.A.N. example above, Michael not only apologized to David, but he went further to try to help reestablish their friendship by inviting him to play with his new toy. Using P.L.A.N. with a reparation approach, Michael restored the damaged relationship and learned that sometimes strained relationships can be repaired.

The “Up” Side of TS: Enhanced Creativity

Having described some of the challenges students with TS or TS+ may encounter in school, we would be remiss if we did not explore some of the advantages TS or TS+ may confer.

Anecdotally, clinicians have often noted the extraordinary creativity exhibited by some individuals with TS and TS+ (c.f., Sacks, 1992). Recent research by Zanaboni and Porta provides preliminary confirmation that children and adolescents with TS and TS+ are more likely than their peers to demonstrate heightened creativity. Using samples of children in both Italy and the United States, and employing measures of divergent thinking, Zanaboni and Porta found that children with TS score significantly higher than control children on measures of flexibility and fluidity (Zanaboni, 2011). Enhanced fluidity and flexibility enable the student to rapidly process numerous alternative ideas and to quickly generate a large number of valid responses. Combined with the flexibility to quickly adjust to new information or circ*mstances, a subset of students with TS will be extraordinarily creative thinkers and problem-solvers. School personnel can capitalize on these strengths and assist students in using their problem-solving skills to address challenges they may face academically and socially. That said, we would remind teachers that many students with TS are not able to adjust quickly to new circ*mstances due to comorbid disorders such as OCD. They may still be extraordinarily creative, but unable to adjust quickly.

Although Zanaboni and Porta’s findings are exciting and articulate nicely with reports of differences in neural network connections that may be associated with divergent thinking (Church et al., 2009), not all available research has supported claims of increased creativity. Using different measures, Wei (2011) found no evidence of enhanced creativity and in fact some evidence of decreased creativity on a measure of picture elaboration. Wei’s findings may be confounded, however, by the potential impact of graphom*otor deficits that do not appear to have been assessed nor controlled for. Because so many children and adolescents with TS have significant graphom*otor problems and are reluctant to write by hand, paper-and-pencil measures may significantly underestimate their creativity. An anecdote from our experience may illustrate why schools may need to provide accommodations in their screening for gifted and talented programs:

An intellectually gifted student with TS+ scored poorly on a creative uses test used to determine admission to his school’s gifted program. The standard administration of the task had required him to write down the uses he could generate for the object but after listing two uses, his hand cramped and he simply stopped writing. When he was denied admission to the gifted program, his surprised parents requested that the school reassess him and provide accommodations that would allow him to respond orally. When retested with appropriate accommodations, he quickly generated a long list of uses. He was admitted to the district’s gifted program, where he quickly rewarded their decision by earning first place in a regional competition to create an eco-friendly power generation system.

Box 29.1.

Key Points

Students with tics or TS face numerous academic, behavioral, and social challenges, some of which are summarized in Table 29.2.

Most of the impairment appears due to associated disorders rather than tics. Comprehensive psychoeducational and functional behavioral assessments enable the school team to develop appropriate accommodations and interventions.

Providing a supportive environment, nurturing the child’s strengths and talents, and providing resources and support for the parents in service of the child can help the student overcome challenges and have a successful school year.

Table 29.2

Open in new tab

Summary Table of Key Points

Impact of TS+Strategies

Academic

Focus and memory issues

LD in written expression and math calculations

Handwriting issues

Decreased productivity

Inability to complete work in a timely fashion

Organizational deficits

Homework issues

Provide staff development.

Screen for learning disabilities

Chunk tasks and monitor progress

Decrease handwriting demands

Provide copies of lecture notes

Screen for assistive technology

Extend time

Use testing accommodations

Teach executive function skills

Reduce and modify homework

Behavioral Symptoms

Dysregulated behavior

Irritable or aggressive

“Storms” or “rage attacks”

Conduct functional behavioral assessment

Use “Graceful Exit” system

Teach reparations

Social Relat ions

Peer rejection or bullying

Cannot keep up with social pace

Social skills deficits

Lonely, depressed

Educate peers

Coach and use “Instant Replay”

Teach problem-solving (P.L.A.N.)

Provide social skills curriculum

Community peer support

Impact of TS+Strategies

Academic

Focus and memory issues

LD in written expression and math calculations

Handwriting issues

Decreased productivity

Inability to complete work in a timely fashion

Organizational deficits

Homework issues

Provide staff development.

Screen for learning disabilities

Chunk tasks and monitor progress

Decrease handwriting demands

Provide copies of lecture notes

Screen for assistive technology

Extend time

Use testing accommodations

Teach executive function skills

Reduce and modify homework

Behavioral Symptoms

Dysregulated behavior

Irritable or aggressive

“Storms” or “rage attacks”

Conduct functional behavioral assessment

Use “Graceful Exit” system

Teach reparations

Social Relat ions

Peer rejection or bullying

Cannot keep up with social pace

Social skills deficits

Lonely, depressed

Educate peers

Coach and use “Instant Replay”

Teach problem-solving (P.L.A.N.)

Provide social skills curriculum

Community peer support

Box 29.2.

Questions for Future Research

Research evaluating the efficacy of accommodations and interventions is sorely needed; this is an area ripe for investigation. Some important questions to address include the following.

What are the elements of an effective peer education program on TS for elementary school students? Studies including behavioral measures of peer acceptance are needed because stated intentions do not always translate into actual changes in behavior

To what extent does the use of assistive technology increase productivity in students with tics or TS?

What is the impact of allowing extended time for students with OCD-related writing rituals? Does it foster greater work completion, does it unintentionally reinforce unwanted compulsive behavior, or both?

Does direct instruction in executive function skills such as planning and “chunking” a big project improve academic productivity and timely completion of tasks?

Does providing students with hard copies of all board work and lecture notes improve testperformance in high school students with handwriting impairment due to TS?

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