Predictors of Impairment and Self-Concept in Children and Adolescents with Persistent Tic Disorder.

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.

Behavioral Interventions for Children and Adults with Tic Disorder.

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.

Pilot Test of the Maximizing Adolescent Post-Secondary Success (MAPSS) Intervention: Supporting Parents of Autistic Youth.

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.

Differentiating tic-related from non-tic-related impairment in children with persistent tic disorders.

Children with persistent (chronic) tic disorders (PTDs) experience impairment across multiple domains of functioning, but given high rates of other non-tic-related conditions, it is often difficult to differentiate the extent to which such impairment is related to tics or to other problems. The current study used the Child Tourette's Syndrome Impairment Scale - Parent Report (CTIM-P) to examine parents' attributions of their child's impairment in home, school, and social domains in a sample of 58 children with PTD. Each domain was rated on the extent to which the parents perceived that impairment was related to tics versus non-tic-related concerns. In addition, the Yale Global Tic Severity Scale (YGTSS) was used to explore the relationship between tic-related impairment and tic severity. Results showed impairment in school and social activities was not differentially attributed to tics versus non-tic-related impairment, but impairment in home activities was attributed more to non-tic-related concerns than tics themselves. Moreover, tic severity was significantly correlated with tic-related impairment in home, school, and social activities, and when the dimensions of tic severity were explored, impairment correlated most strongly with motor tic complexity. Results suggest that differentiating tic-related from non-tic-related impairment may be clinically beneficial and could lead to treatments that more effectively target problems experienced by children with PTDs.

Pilot Open Case Series of Voice over Internet Protocol-delivered Assessment and Behavior Therapy for Chronic Tic Disorders.

Comprehensive Behavioral Intervention for Tics (CBIT) is an efficacious treatment for children with Chronic Tic Disorders (CTDs). Nevertheless, many families of children with CTDs are unable to access CBIT due to a lack of adequately trained treatment providers, time commitment, and travel distance. This study established the interrater reliability between in-person and VoIP administrations of the Yale Global Tic Severity Scale (YGTSS), and examined the preliminary efficacy, feasibility, and acceptability of Voice over Internet Protocol (VoIP)-delivered CBIT for reducing tics in children with CTDs in an open case series. Across in-person and VoIP administrations of the YGTSS, results showed mean agreement of 91%, 96%, and 95% for motor, phonic, and total tic severity subscales. In the pilot feasibility study, four children received 8-weekly sessions of CBIT via VoIP and were assessed at pre- and post-treatment by an independent evaluator. Results showed a 29.44% decrease in clinician-rated tic severity from pre to post-assessment on the YGTSS. Two of the four patients were considered treatment responders at post treatment, using Clinical Global Impressions-Improvement ratings. Therapeutic alliance, parent and child treatment satisfaction and videoconferencing satisfaction ratings were high. CBIT was considered feasible to implement via VoIP, although further testing is recommended.

A Test of the Behavioral Model of Tic Disorders Using a Dynamical Systems Framework.

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.

Current controversies on the role of behavior therapy in Tourette syndrome.

Comprehensive behavioral intervention for tics (CBIT) is a safe and effective treatment for managing the tics of Tourette syndrome (TS). In contrast to most current medications used for the treatment of tics, the efficacy of CBIT has been demonstrated in 2 relatively large, multisite trials. It also shows durability of benefit over time. Similar to psychopharmacological intervention, skilled practitioners are required to implement the intervention. Despite concerns about the effort required to participate in CBIT, patients with TS and parents of children with TS appear willing to meet the requirements of the CBIT program. Efforts are under way to increase the number of trained CBIT providers in the United States. Based on available evidence, recent published guidelines suggest that CBIT can be considered a first-line treatment for persons with tic disorders. © 2013 Movement Disorder Society.

Evaluating the feasibility, acceptability, and preliminary effectiveness of tele-comprehensive behavior therapy for tics (teleCBIT) for Tourette syndrome in youth and adults.

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.

Caregiver Perspectives on the Health Care System for Tic Disorders: Utilization and Barriers.

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.

Defining tic severity and tic impairment in Tourette Disorder.

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.

Distinguishing and Managing Acute-Onset Complex Tic-like Behaviors in Adolescence.

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.

Family Sexuality Communication: Parent Report for Autistic Young Adults Versus a Comparison Group.

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.

Sexual and Reproductive Health Service Utilization and Sexuality for Teens on the Autism Spectrum.

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.

Family Sexuality Communication for Adolescent Girls on the Autism Spectrum.

Families are critical for supporting healthy sexuality and relationship development for youth with autism. The objective of this study was to describe family sexuality communication for adolescent girls with autism. Participants were 141 parents of autistic daughters who completed an online survey about sexuality development. Most parents relied on discussion alone rather than visual supports or skills-based teaching techniques. Intellectual functioning, child age, race/ethnicity, and whether youth expressed sexual interest in others affected family sexuality communication. We discuss how most parents covered important basics, but many did not cover more nuanced relationship or sexual health topics during family sexuality communication. Few used enhanced instructional techniques (e.g., visual supports, social stories), suggesting potential utilization barriers such as a lack of affordable and available resources. There is a need for research accounting for diverse racial/ethnic backgrounds, sexual orientations including asexuality/demisexuality, and for transgender and gender diverse youth.

Durability, negative impact, and neuropsychological predictors of tic suppression in children with chronic tic disorder.

Chronic tic disorders are characterized by involuntary motor and vocal tics, which are influenced by contextual factors. Recent research has shown that (a) children can suppress tics for brief periods of time, (b) suppression is enhanced when programmed reinforcement is provided for tic-free intervals, and (c) short periods of suppression do not result in a paradoxical "rebound" in tic frequency when active suppression has ceased. The current study extended existing research in three important ways. First, we examined whether tic suppression ability decreased as suppression duration increased from 5 to 25 to 40 min. Second, we examined post-suppression tic frequency to test whether longer periods of suppression were more likely to be associated with a rebound effect. Finally, we explored neuropsychological predictors of tic suppression. Thirteen children with Tourette syndrome or a chronic tic disorder completed the study. Results showed that (a) tic suppression was sustained for all of the suppression durations, (b) rebound effects were not observed following any of the suppression durations, and (c) ability to suppress was correlated with omission, but not commission errors on a continuous performance task. Implications of these findings are discussed.

Evaluating the role of contingency in differentially reinforced tic suppression.

The current study evaluated the effects of tokens delivered on differential reinforcement of zero-rate behavior (DRO) schedules or noncontingently on tic suppression in 4 children with tics. Tic frequency was lower in 3 of 4 children when tokens were delivered contingent on the absence of tics than when tokens were delivered noncontingently.

Parent Expectations and Preparatory Activities as Adolescents with ASD Transition to Adulthood.

Community stakeholders, researchers, and providers are increasingly focused on individual, family, and systemic factors that contribute to positive outcomes for adults on the autism spectrum. Parent expectations for their youth's future are associated with adult outcomes (e.g., employment, school success, independence), yet the mechanism for this effect remains unclear. This study investigated how expectations were related to parent transition-related activities in a sample of 298 parents of adolescents on the autism spectrum (48% female adolescents), stratified by parent-reported IQ (average or above, borderline, or below 70). Parent expectations for the future predicted engagement in some activities intended to enhance adult outcomes when controlling for IQ, gender, age, and household income. The results have implications for how providers discuss expectations and support families in preparing for adulthood.

Patterns and Predictors of Tic Suppressibility in Youth With Tic Disorders.

Tic suppression is the primary target of tic disorder treatment, but factors that influence voluntary tic inhibition are not well understood. Several studies using the Tic Suppression Task have demonstrated significant inter-individual variability in tic suppressibility but have individually been underpowered to address correlates of tic suppression. The present study explored patterns and clinical correlates of reward-enhanced tic suppression in youth with tic disorders using a large, pooled dataset. Individual-level data from nine studies using the Tic Suppression Task were pooled, yielding a sample of 99 youth with tic disorders. Analyses examined patterns of tic suppressibility and the relationship between tic suppressibility and demographic and clinical characteristics. A large majority of youth demonstrated a high degree of tic suppression, but heterogeneous patterns of tic suppressibility were also observed. Better tic suppressibility was related to older age and more frequent tics but unrelated to other clinical variables, including presence of psychiatric comorbidity, psychotropic medication status, tic and premonitory urge severity, and self-rated tic suppressibility. The mechanisms underlying the observed heterogeneity in reward-enhanced tic suppressibility warrant further investigation. The Tic Suppression Task is a promising method for testing mechanistic hypotheses related to tic suppression.

Investigating the effects of tic suppression on premonitory urge ratings in children and adolescents with Tourette's syndrome.

Tics represent a complex class of behaviors that have a neurobiological origin and are influenced by factors both internal and external to the individual. One factor that has gained recent attention is the premonitory urge. Contemporary behavioral models suggest that some tics are preceded by aversive somatic urges that increase in severity when tics are suppressed and are attenuated by performance of the tic. It has been proposed that the removal of premonitory urges may strengthen or maintain tics via negative reinforcement. This investigation is the first to empirically evaluate the effect of tic suppression on the premonitory urge phenomenon. Five children and adolescents, ages 8-17years, participated in the study. Using an ABAB reversal design, tic frequency and subjective premonitory urge ratings were recorded under conditions of free-to-tic baseline (BL) and reinforced tic suppression (differential reinforcement of zero-rate behavior). Results show that four of the five children demonstrated reliable suppression. Of the four children who achieved suppression, three demonstrated a pattern in which subjective urge ratings were higher during suppression than during BL. Results provide preliminary support for the negative reinforcement view of tic function for some children.