Behavioral interventions are now recommended within evidence-based treatment guidelines as an alternative or adjunct to medication for the management of tic disorders (TD). The behavioral model of TD conceptualizes tics as neurologic based yet modifiable behaviors that are influenced by internal and external contextual antecedents and tic-contingent consequences. The behavioral interventions with the strongest empirical support are habit reversal training (HRT), an expanded version of HRT referred to as comprehensive behavioral intervention for tics (CBIT), and a version of exposure and response prevention (ERP) adapted from an evidence-based cognitive-behavioral intervention for obsessive-compulsive disorder. Each of these interventions involves teaching volitional tic suppression and environmental modifications aimed at reducing contextual worsening of tics. In this chapter, we review the behavioral model of TD, the core components of HRT, CBIT, and ERP, and discuss their supporting evidence base. We then briefly review several persistent and unfounded concerns and misunderstandings regarding behavior interventions for TD that inhibit adoption among some professionals and patients. Finally, despite evidence supporting their efficacy, access to behavior therapies for TD remains limited. We conclude with a review of existing and emerging approaches aimed at increasing dissemination and implementation and future directions for research.
Tic disorders, including Tourette Syndrome, are prevalent yet frequently overlooked conditions, often leading to delayed diagnoses. Given their substantial overlap with other emotional-behavioral disorders, timely identification is crucial. However, existing screening tools for tics are limited, and research has predominantly been conducted within specialized settings, lacking diversity. To bridge these gaps, we present a collection of studies exploring innovative screening and diagnostic approaches for tic disorders in youth. Screening and early detection may improve access to intervention and secondary prevention, improving outcomes for individuals with tic disorders and their families.
To establish a patient -centered agenda for research that will lead to effective, widespread availability, adoption, and utilization of evidence -based behavioral treatment of Tourette syndrome and other tic disorders (TDs), we planned and executed a multistage, collaborative "Treating Tourette Together" research planning project with researchers, clinicians, patients, families, and other interested parties. Priorities for future behavioral treatment research were solicited from these parties via anonymous community surveys, a 2 -day research planning summit with 46 individuals representing key stakeholder groups, and community response to summit reports. Four highpriority research domains were identified: (a) expanding treatment access, (b) improving treatment outcomes, (c) optimizing treatment within a broader care model, and (d) evaluating outcomes beyond tic severity. Communityengaged participatory research models can efficiently delineate clear and actionable priorities for clinical research. This approach holds promise for improving the impact of clinical research in TDs and other neuropsychiatric disorders.
This study examined predictors of, and associations between, self-concept, demographic variables, and clinical measures in fifty-eight children and adolescents with Persistent Tic Disorder (PTD; 44 males, Mage = 11.9 years, SD = 2.74). Participants completed measures that assessed self-concept, tic severity, tic-related impairment, and comorbid psychological symptoms. Results showed that generalized anxiety disorder, major depressive disorder, persistent depressive disorder, total tic severity, number and complexity of tics, and total and social tic-related impairment were associated with self-concept. Tic-related social impairment mediated the relationship between tic severity and self-concept. Exploratory analyses found that total tic severity, motor tic severity, and vocal tic severity, as well as the number, intensity, and interference of tics predicted social tic-related impairment. Results suggest that treatments to reduce the number and complexity of tics, with additional focus on navigating social interactions, may serve to decrease tic severity and impairment, and in turn, improve self-concept.
Tic disorders are a class of childhood-onset neurodevelopmental disorders characterized by involuntary motor and/or vocal tics. This entry describes the clinical presentation, prevalence, and impact of tic disorders across the lifespan and provides a framework for understanding how interacting biological and environmental factors influence symptom expression and clinical course. Evidence based pharmacological and behavioral approaches to treatment are outlined and suggestions for future research are discussed.
Abstract: Tic disorders (TDs) can cause considerable functional impairment and are often associated with comorbid conditions, resulting in difficulty managing symptoms. Although several effective evidence-based interventions are available, previous research has found that caregivers of children with TDs often experience substantial burden navigating the health care system to address their child's tics. Objective: This study aimed to understand health care experiences among a sample of caregivers of children with TDs to inform future directions for improving the health care system. Methods: We conducted a survey of caregivers of youth with TDs and used descriptive statistics and quantitative analyses to characterize the health care utilization practices of the sample. Results: The majority (70%) of families first consulted their pediatrician/primary care provider, and caregivers reported receiving care in line with current best practice guidelines. However, caregivers in the current sample perceived a lack of knowledgeability on the part of their first providers, which significantly predicted more providers seen and also reported difficulty finding specialty providers (63% of the sample reported difficulty finding a treatment provider who understood tics). Conclusion: Results suggest that improving caregiver satisfaction with early health care experiences for their child's TD may help to relieve the burden on families and the health care system more broadly, along with continued efforts to increase the number of specialty providers available.
front lines.The idiom "those are some big shoes to fill" has never been more aptly applied.Having the opportunity to serve as the next editor-in-chief of EToC is truly a privilege.I have long considered EToC to be one of my home academic journals and it has had a substantial influence on my career.If you will indulge me for a minute, I'd like to take the opportunity to share a bit of my academic background and my history with EToC, their relevance to my new post with the journal, and some of the goals that I hope to accomplish during my term.My career in psychology began when I was an undergraduate at the University of North Dakota.After exploring several different academic majors, I found my way into the field of psychology primarily through two courses: one focused on learning theory and the other on applied behavior analysis.Both courses were taught by Jeff Weatherly, an engaging instructor and respected experimental behavior analyst.Fortunately, Jeff also allowed me to join his research lab where I spent countless hours in a windowless basement running rats through a series of experiments examining behavioral contrast.I owe a debt of gratitude to Jeff for introducing me to the philosophy of behaviorism and for supporting me to attend my first major academic conference, the 2000 annual meeting of the Association for Behavior Analysis International, where I eagerly attended talks on topics ranging from strategies for promoting social engagement in children with autism to effective teaching and classroom management practices to how applied
Over the past decade, behavioral interventions have become increasingly recognized and recommended as effective first-line therapies for treating individuals with tic disorders. In this article, we describe a basic theoretical and conceptual framework through which the reader can understand the application of these interventions for treating tics. The three primary behavioral interventions for tics with the strongest empirical support (habit reversal, Comprehensive Behavioral Intervention for Tics, and exposure and response prevention) are described. Research on the efficacy and effectiveness of these treatments is summarized along with a discussion of the research evaluating the delivery of these treatments in different formats and modalities. The article closes with a review of the possible mechanisms of change underlying behavioral interventions for tics and areas for future research.
Tic disorders are a class of neurodevelopmental disorders characterized by involuntary motor and/or vocal tics. It has been hypothesized that tics function to reduce aversive premonitory urges (i.e., negative reinforcement) and that suppression-based behavioral interventions such as habit reversal training (HRT) and exposure and response prevention (ERP) disrupt this process and facilitate urge reduction through habituation. However, previous findings regarding the negative reinforcement hypothesis and the effect of suppression on the urge-tic relationship have been inconsistent. The present study applied a dynamical systems framework and within-subject time-series autoregressive models to examine the temporal dynamics of urges and tics and assess whether their relationship changes over time. Eleven adults with tic disorders provided continuous urge ratings during separate conditions in which they were instructed to tic freely or to suppress tics. During the free-to-tic conditions, there was considerable heterogeneity across participants in whether and how the urge-tic relationship followed a pattern consistent with the automatic negative reinforcement hypothesis. Further, little evidence for within-session habituation was seen; tic suppression did not result in a reduction in premonitory urges for most participants. Analysis of broader urge change metrics did show significant disruption to the urge pattern during suppression, which has implications for the current biobehavioral model of tics.
Introduction: Comprehensive behavioral intervention for tics (CBIT) is an efficacious, first-line treatment for Tourette syndrome (TS) and other chronic or persistent tic disorders. However, CBIT's public health impact has been limited by suboptimal treatment access. Preliminary research has shown that providing CBIT over videoconference (teleCBIT) is a promising delivery method for patients who cannot access in-person care. However, extant studies have been small efficacy trials focused only on pediatric patients. Replication of these studies is needed in additional treatment settings and across a wider age range of patients, especially in light of advances in telehealth technology and increasing telehealth adoption among practitioners. Methods: We conducted a single-arm trial to evaluate the feasibility, acceptability, and effectiveness of teleCBIT embedded in comprehensive, medical tic specialty clinics. From October 2016 to September 2018, patients were offered teleCBIT at their usual care appointments. Those who were interested and met inclusion/exclusion criteria received 8 sessions of CBIT guided by a manualized protocol. An independent evaluator, masked to treatment progress, administered assessments at baseline, post-treatment, and 3 and 6 months after treatment. Results: Twenty-five percent of patients who were offered treatment initiated teleCBIT through the study, and all treatment initiators completed treatment. From pre- to post-treatment, decreases in Yale Global Tic Severity Scale (YGTSS) total tic severity scores showed a large effect size among pediatric patients (n= 19; t= 5.72, P < 0.001, d= 1.31) and a medium-to-large effect size for adult patients (n = 10, t= 1.41, P= 0.096, d= 0.664). Thirteen of 19 pediatric patients (68%) and 6 of 10 adult patients (60%) had a positive global treatment response at post-treatment. Patients rated the treatment as highly satisfactory. Ninety-three percent of sessions were free of substantial technical problems. Discussion: Within the context of medical tic specialty clinics, teleCBIT demonstrated strong evidence of feasibility, acceptability, and preliminary effectiveness comparable to in-person treatment for both pediatric and adult patients. TeleCBIT warrants study in future research on enhancing care systems for patients with TS. Trial registry: https://clinicaltrials.gov/ct2/keydates/NCT04007913
Emerging literature suggests age and sex/gender-related differences in the phenomenology and course of Tourette Syndrome (TS). Inhibitory control over tics recruits neurocircuitry with known developmental gender differences, suggesting the hypothesis that there are age by gender interactions in tic suppressibility. We tested this hypothesis for the first time by analyzing Tic Suppression Task (TST) data.
Consistent with international reports,1 this group of Tourette syndrome (TS) experts has noticed a recent increase in adolescents presenting with tic-like symptoms that show a markedly atypical onset and course. These sudden-onset motor movements and vocalizations are often associated with significant impairment and disability, resulting in emergency department visits and hospitalizations for some affected youths.
IMPORTANCE:Parents play an essential role in the transition to adulthood for autistic youth, yet often feel they do not have adequate training and resources. OBJECTIVE:To evaluate data on the preliminary efficacy of and collect participant feedback about the Maximizing Adolescent Post-Secondary Success (MAPSS) intervention. DESIGN:Single-group, pretest-posttest pilot study. SETTING:Clinic. PARTICIPANTS:Twenty-two families of autistic youth (ages 13-19 yr, 72.7% male). INTERVENTION:MAPSS is a group intervention for parent-youth dyads that is designed to guide parents in facilitating the development of independent skills for adulthood. Outcomes and Measures: Measures included the Transition Preparation Activities Measure (T-PAM), Family Empowerment Scale (FES), 10-item Perceived Stress Scale (PSS-10), Adulthood Expectations Questionnaire (AEQ), Adaptive Behavior Assessment System-Third Edition (ABAS-3), and a study-specific participant feedback survey. RESULTS:Frequency of transition preparation activities (T-PAM) significantly increased from before to after the intervention, and although the frequency of preparation activities decreased by 1-mo follow-up, it remained significantly higher than at baseline. Parent self-efficacy (FES), parent expectations (AEQ), and parent sense of control over outcomes (AEQ) also significantly increased from preintervention to follow-up; however, parent coping (PSS-10) was unchanged. Youth self-care skills (ABAS-3) demonstrated improvements 6 mo after the completion of the intervention, although other areas of adaptive behavior did not significantly change. Feedback from parents suggested they had positive experiences and felt the intervention was beneficial. CONCLUSIONS AND RELEVANCE:Our data suggest that the MAPSS intervention is an appropriate candidate for larger, controlled clinical trials. What This Article Adds: With additional evidence, this intervention can offer guidelines for occupational therapists to work with autistic youth and their parents to prepare for adulthood.
OBJECTIVES Health care providers and educators play critical roles in supporting healthy sexuality development for youth with autism spectrum disorder. There is limited information about the sexual behavior of these youth, especially girls, and about their access to sexuality education or health care services. METHODS This study addressed these gaps by surveying parents of youth with autism aged 12-18 years (N = 298, 52.7% boys) with a range of intellectual functioning. RESULTS According to parent report, most youth experienced sexual attraction and were interested in relationships, including same-sex attraction or relationships (13.2%). Girls were more likely than boys to have had a romantic relationship and less likely to have experienced school or legal consequences for sexual behavior. Around one-fifth of youth had engaged in a socially inappropriate sexual behavior, whereas 6.4% had a known sexual abuse history and 14.5% were bullied by peers for lack of sexual knowledge. Almost 40% received no sex education in school or in the community, including 60.9% of youth with parent-reported intelligence quotient under 70. Some parents consulted with school personnel (36.4%) or health care providers (55.9%) about sexuality issues, whereas 19.5% reported taking no action aside from talking to their child about sexuality. Utilization models including predisposing, enabling, and needs-related factors were applied to parent consultation with providers and use of school-based sexuality education programming. CONCLUSION The results suggest unmet needs for sexual and reproductive health services, particularly among youth who are younger, those who have co-occurring intellectual disability, or those who are homeschooled or who attend private, charter, or therapeutic versus public schools.
This chapter focuses on the tic disorders and trichotillomania. Tic disorders are characterized by sudden, repetitive, non-rhythmic motor and vocal tics. Tic disorders can be categorized into three primary categories: transient tic disorder, chronic tic disorder, and Tourette's disorder (TD). Evidence for automatic negative reinforcement of tics comes primarily from self-report data in which individuals describe the occurrence of unpleasant sensations. Most functional assessment research with hair pulling involves indirect assessment in which individuals with trichotillomania (TTM) report the antecedents and consequences of hair pulling. While direct functional assessment methods may be desired, direct observation of antecedents and consequences of pulling is problematic for two reasons. First, hair pulling is often a behavior that is not performed in the presence of others, possibly because of a history of social punishment. Second, the functional antecedents and consequences to pulling are often private and not directly available for observation by others.
OBJECTIVE:Treatment guidelines for Tourette's Disorder (TD) are based on patients' degree of tic severity and impairment. However, clear benchmarks for determining tic severity and impairment have not been established. This study examined benchmarks of tic severity and tic impairment using the Yale Global Tic Severity Scale (YGTSS) and the Clinical Global Impression of Severity (CGI-S). METHOD:Individuals with TD or another Tic Disorder (N = 519) recruited across nine sites were administered a diagnostic interview, the YGTSS, and the CGI-S. Correlations and trend analyses contrasted YGTSS scores across CGI-S ratings. A logistic regression model examined predictive benchmarks for tic severity, tic impairment, and global severity. Model classifications were compared against CGI-S ratings, and agreement was examined using kappa. RESULTS:Spearman correlations between the CGI-S and YGTSS scores ranged from 0.54 to 0.63 (p < 0.001). Greater CGI-S ratings were associated with a linear stepwise increase in YGTSS Total Tic scores, Impairment scores, and Global Severity scores. Despite moderate-to-strong associations (ρ = 0.45-0.56, p < 0.001) between the CGI-S and predictive logistical regression models, only fair agreement was achieved when applying classification benchmarks (κ = 0.21-0.32, p < 0.001). CONCLUSIONS:CGI-S ratings are useful to characterize benchmarks for tic severity, tic impairment, and global severity on the YGTSS. Logistic regression model benchmarks had only fair agreement with the CGI-S and underscore the heterogeneity of TD symptoms. Collectively, findings offer guidance on the delineation of tic severity categorizations to apply evidence-based treatment recommendations.
Families are a critical context for healthy sexuality development. This study characterized family sexuality communication for autistic adults (age 18–30) without intellectual disability (n = 117) versus a neurotypical comparison group (n = 319). Parent-reported number of sexuality topics covered did not significantly differ by gender or autism/comparison group. Parents of autistic adults who covered few or no topics (31%) reported higher religiosity, lower comfort and self-efficacy, and were less likely to say that the adult expressed attraction or desire for relationships. Parents of autistic adults were more likely than comparison parents to perceive their young person as being uninterested or not ready to learn about sexuality topics. These results suggest that families of autistic people require support to convey sexuality-related knowledge and values.
Background: Parents of autistic youth are highly involved in the transition preparation process, yet the role and influence of parental factors and perceptions is underexplored. In the current study, we aimed to expand understanding of transition preparation and the role and influence of parental factors for autistic youth including perceptions of the likelihood (i.e., parent expectations), importance, and parental influence over postsecondary outcomes as well as parental selfefficacy, parent stress, and parent concerns for the future. Method: We surveyed 269 parents of autistic youth (ages 14-21, 78.2 % male) who did not have co-occurring intellectual disability. We used linear regression analyses to examine youth and parent predictors of the frequency of transition preparation activities, parents' overall sense of preparation, and parental worry about the future. We also qualitatively analyzed open-ended responses about parent concerns. Results: The most frequently endorsed transition preparation activities were discussions about the future and chores. Parental factors were associated with greater frequency of transition preparation activities, greater overall sense of preparation for the transition, and less overall worry. Key areas of parent concern were related to youth independence, social life, employment/finances, autism features, safety, happiness, and health. Conclusions: The results of this study have implications for education and interventions focused on supporting autistic youth and their parents for the transition to adulthood. There is a need for transition-related interventions that focus on parents and on particular instruction for raising expectations, enhancing parent self-efficacy, and increasing parental sense of control over outcomes.