Utility of a virtual small group cognitive behaviour program for autistic children during the pandemic: evidence from a community-based implementation study.

BACKGROUND: Autistic children often experience socioemotional difficulties relating to emotion regulation and mental health problems. Supports for autistic children involve the use of adapted interventions that target emotion regulation and social skills, alongside mental health symptoms. The Secret Agent Society Small Group (SAS: SG), an adapted cognitive behavioural program, has demonstrated efficacy through lab-delivered randomized control trials. However, research is still needed on its effectiveness when delivered by publicly funded, community-based autism providers under real-world ecologically valid conditions, especially within the context of a pandemic. The COVID-19 pandemic has disrupted access to community-based supports and services for autistic children, and programs have adapted their services to online platforms. However, questions remain about the feasibility and clinical utility of evidence-based interventions and services delivered virtually in community-based settings. METHODS: The 9-week SAS: SG program was delivered virtually by seven community-based autism service providers during 2020-2021. The program included the use of computer-based games, role-playing tasks, and home missions. Caregivers completed surveys at three timepoints: pre-, post-intervention, and after a 3-month follow-up session. Surveys assessed caregivers' perception of the program's acceptability and level of satisfaction, as well as their child's social and emotional regulation skills and related mental health challenges. RESULTS: A total of 77 caregivers (94% gender identity females; Mean = 42.1 years, SD = 6.5 years) and their children (79% gender identity males; Mean = 9.9 years, SD = 1.3 years) completed the SAS: SG program. Caregivers agreed that the program was acceptable (95%) and were highly satisfied (90%). Caregivers reported significant reduction in their child's emotion reactivity from pre- to post-intervention (-1.78 (95% CI, -3.20 to -0.29), p = 0.01, d = 0.36), that continued to decrease after the 3-month booster session (-1.75 (95% CI, -3.34 to -0.16), p = 0.02, d = 0.33). Similarly, improvements in anxiety symptoms were observed (3.05 (95% CI, 0.72 to 5.36), p = 0.006, d = 0.39). CONCLUSIONS: As online delivery of interventions for autistic children remains popular past the pandemic, our findings shed light on future considerations for community-based services, including therapists and agency leaders, on how best to tailor and optimally deliver virtually based programming. TRIAL REGISTRATION: This study has been registered with ISRCTN Registry (ISRCTN98068608) on 15/09/2023. The study was retroactively registered.

'More together than apart': The evaluation of a virtual course to improve mental health and well-being of adults with intellectual disabilities during the COVID-19 pandemic.

BACKGROUND: To address the growing concerns over poor mental health experienced by adults with intellectual disabilities due to the COVID-19 pandemic, a national virtual mental health course was delivered and evaluated. METHODS: This mixed methods study utilized both qualitative and quantitative assessments. Participants were 27 adults with intellectual disabilities who participated in the 6-week course. Participants completed measures of self-efficacy and well-being at three time points and qualitative satisfaction measures at post and follow-up. RESULTS: Attendance was high and the course was feasible and acceptable to participants. Positive changes related to mental health self-efficacy were detected (p = .01), though mental well-being did not improve. CONCLUSION: The study provided evidence for the feasibility and value of the course for this population. Future research should examine how virtual courses could support the population in terms of pandemic recovery and how courses may work for individuals who are less independent.

Dating and romantic relationships of adolescents with intellectual and developmental disabilities.

INTRODUCTION: Adolescents with intellectual and/or developmental disabilities (IDD) are at high risk for sexual exploitation, yet there is a paucity of research on their romantic relationships. The objectives of this study were to examine the romantic understanding and experiences of youth with IDD. METHODS: Thirty-one adolescents (16-19 years; 21 males and 10 females) with IDD (12 participants with additional diagnosis of ASD) were recruited from a community health clinic. Individual interviews and questionnaires assessed cross-sectionally these youths': (1) romantic conceptualizations; (2) romantic awareness (knowledge of: romantic relationships, sexual behaviours, initiating relationships); (3) involvement; (4) social competence; and (5) expectations for autonomy. Parent perspectives on these topics were also captured through questionnaires. RESULTS: While 85% reported an immediate desire for a romantic relationship, only 35% were currently in a relationship. Qualitative findings indicated that 14% of youth were unable to differentiate between a romantic relationship and a friendship. Among those who could make this distinction, romantic relationships were conceptualized as serious, commitment for life, and primarily for companionship. Adolescents with ASD, compared to those without ASD, showed weaker social competence and lower romantic awareness. Parents were adolescents' primary source of information about relationships. Finally, parents and adolescents differed in their perception of the age at which they were ready to date. CONCLUSIONS: This study contributes to our understanding of the romantic experiences of youth with IDD. Prevention efforts focused on education may be important to help ensure these youth develop safe and healthy relationships.

The Power of Partnerships to Identify and Address Mental Health Concerns Experienced by Adults With Intellectual and Developmental Disabilities.

There are significant research gaps with regard to understanding and addressing the mental health concerns of adults with intellectual and developmental disabilities (IDD) and their families. In this article, we reflect on research we have carried out about mental health and IDD prior to and during the pandemic in Ontario, Canada. We aim to address how partnering with people with IDD, family caregivers, service providers, and policy makers can help accelerate needed progress in this area. We conclude with some lessons learned during the pandemic about what to emphasize in building and maintaining such partnerships.

Parent, child, and family outcomes following Acceptance And Commitment Therapy for parents of autistic children: A randomized controlled trial.

LAY ABSTRACT: Parents of autistic children commonly experience difficulties with their own mental health. This study looked at the effects of a brief group-based Acceptance and Commitment Therapy program, developed for parents of autistic children, youth, and adults. ACT focuses on increasing psychological flexibility, which is the ability to be mindful and accepting of difficult thoughts and experiences, shown to be important for mental wellness. Participants included 54 parents of autistic people, ages 3-34. Parents were randomly divided into two groups: a Treatment group that received the intervention right away, and a Waitlist group that completed the program after the Treatment group completed the trial. All parents filled out questionnaires right before the program began, and at 3, 7, and 17 weeks after randomization. Compared to the group that was waiting to participate in the program, parents in the Treatment group reported greater improvements in depression and family distress, and these improvements were still present 4 months later. Parents in the Treatment group also reported short-term improvements in their positive feelings and personal goals, compared to those waiting. Results showed that ACT may help improve some aspects of mental health for parents of autistic children, but further research is recommended.

Psychiatric disorders in adults with cerebral palsy.

BACKGROUND: Cerebral palsy (CP) is one of the most common neurological conditions in childhood. Individuals with CP often experience various secondary conditions, including intellectual disability (ID), medical conditions, and psychiatric issues. A large number of youth with CP have psychiatric disorders; however, few studies have examined the prevalence of psychiatric issues in adults with CP at the population-level. AIMS: To investigate the prevalence and co-occurrence of psychiatric disorders at the population-level in adults with CP only, and adults with CP and ID. METHOD AND PROCEDURES: Using clinical information from seven Canadian data sources, we conducted a retrospective cross-sectional analysis of adults with CP, with and without ID. OUTCOMES AND RESULTS: Adults with CP were more likely than the general population to have a psychiatric diagnosis, independent of ID status. All psychiatric disorders were more common in individuals with CP than the general population, with the exception of addiction related disorders. In most cases, having an ID substantially increased the risk of having a psychiatric disorder. CONCLUSIONS: Adults with CP are at heightened risk for experiencing psychiatric disorders. Current findings highlight the important role health care providers play in screening for psychiatric issues in individuals with CP.

Considering efficacy and effectiveness trials of cognitive behavioral therapy among youth with autism: A systematic review.

LAY ABSTRACT: Cognitive behavioral therapy is a common treatment for emotional problems in people with autism. Most studies of cognitive behavioral therapy and autism have focused on efficacy, meaning whether a treatment produces results under "ideal" conditions, like a lab or research setting. Effectiveness trials, by contrast, investigate whether a treatment produces results under "real-world" conditions, like a community setting (e.g. hospital, community mental health center, school). There can be challenges in bringing a cognitive behavioral therapy treatment out of a lab or research setting into the community, and the field of implementation science uses frameworks to help guide researchers in this process. In this study, we reviewed efficacy and effectiveness studies of cognitive behavioral therapy treatments for emotional problems (e.g. anxiety, depression) in children and youth with autism. Our search found 2959 articles, with 33 studies meeting our criteria. In total, 13 studies were labelled as effectiveness and 20 as efficacy. We discuss how the effectiveness studies used characteristics of an implementation science framework, such as studying how individuals learn about the treatment, accept or reject it, how it is used in the community over time, and any changes that happened to the individual or the organization (e.g. hospital, school, community mental health center) because of it. Results help us better understand the use of cognitive behavioral therapy in the community, including how a framework can be used to improve effectiveness studies.

ACT Processes in Group Intervention for Mothers of Children with Autism Spectrum Disorder.

Few studies have examined interventions or therapeutic processes that may help parents of children with Autism Spectrum Disorder (ASD) manage their stress. This study examines the impact of a brief Acceptance and Commitment Therapy (ACT) group intervention, led by parents, among a cohort of 33 mothers of children with ASD. Changes in ACT process measures (psychological flexibility, cognitive fusion, values) were evaluated at pre, post, and 3 months following the intervention. Mothers reported significant improvement post-intervention in psychological flexibility, cognitive fusion, and value-consistent activities in multiple life domains, including parenting, relationships, and self-care. These improvements were maintained at follow-up. The results provide preliminary evidence that improvements observed in depression and stress may be mediated by cognitive fusion and action-values consistency.

Tracking health care service use and the experiences of adults with autism spectrum disorder without intellectual disability: A longitudinal study of service rates, barriers and satisfaction.

BACKGROUND: Adults with Autism Spectrum Disorder (ASD) encounter many difficulties finding and accessing health care services. Despite this, few studies have considered the health service use patterns of adults with ASD without intellectual disability (ID). OBJECTIVES: The current study examines a diverse range of medical and mental health services and supports, as well as adults' personal experiences accessing and using these services, barriers to service use, and reported unmet service needs. METHODS: Forty adults (ages 18-61 years) with ASD without ID completed surveys every two months about their health service use for a total of 12-18 months. Bivariate analyses were conducted to understand the individual demographic and clinical factors associated with rate of service use, satisfaction with services, and barriers to health care. RESULTS: Results indicated that, beyond a family doctor, the most commonly used services were dentistry, individual counseling, and psychiatry. Individuals who had medical problems experienced significantly more barriers to service use than those who did not, and those who had medical and mental health problems were less satisfied with services. CONCLUSIONS: Findings highlight the challenges adults with ASD without ID face accessing appropriate, quality services to meet their needs, particularly those with complex medical and mental health issues. Service providers must strive to provide adequate health care to this population who may become distressed if their needs are left unmet.

Medical Conditions and Demographic, Service and Clinical Factors Associated with Atypical Antipsychotic Medication Use Among Children with An Autism Spectrum Disorder.

This study aimed to describe rates of antipsychotic medication use and the association between their use and demographics, clinical variables, and the use of behavioral/education services among children with ASD. For children with ASD ages 2-11 (n = 4749) and those 12-17 (n = 401), 5.4 and 17.7% were prescribed at least one atypical antipsychotic medication respectively. In the multivariable model of young children, older age, use of multiple psychotropic medications, prior ASD diagnosis, non-white Hispanic race/ethnicity, and oppositional defiant problems were associated with antipsychotic use. Among older children, only older age was associated with antipsychotic use. In at least one age group, antipsychotic medication use was also related to behaviour, family and occupational therapy, public insurance, site region, externalizing problems, body mass index, and sleep and gastrointestinal problems.

Psychotropic medication use among adolescents and young adults with an autism spectrum disorder: parent views about medication use and healthcare services.

OBJECTIVE: Psychotropic medications are frequently used to treat mental health and behavioral issues in adolescents and adults with an autism spectrum disorder (ASD). Although parents of individuals with ASD frequently take on medication management for their child, there is limited literature on parent perspectives of their child's medication use or their views about the healthcare services they receive, particularly in adulthood. The current study examined and compared parents of adolescents and of young adults with ASD regarding their child's psychotropic medication use and their views about healthcare services. METHODS: One hundred parents of adolescents and young adults with ASD (ages 12-30 years) completed an online survey about their experience with their child's healthcare services and medication use. RESULTS: Parents of young adults were less likely to use nonpharmacological services before using a psychotropic medication than were parents of adolescents. Parents of young adults were also less likely to believe that their prescribing healthcare provider had adequate expertise in ASD, and were less satisfied with how their prescriber monitored their child's medication use. CONCLUSION: Findings highlight the need to build capacity among healthcare providers supporting individuals with ASD as they transition into adulthood. There is also a need for improved medication monitoring and increased awareness of the different mental health challenges that individuals with ASD encounter as they age.

Mental health services for individuals with high functioning autism spectrum disorder.

Adolescents and adults with an autism spectrum disorder (ASD) who do not have an intellectual impairment or disability (ID), described here as individuals with high-functioning autism spectrum disorder (HFASD), represent a complex and underserved psychiatric population. While there is an emerging literature on the mental health needs of children with ASD with normal intelligence, we know less about these issues in adults. Of the few studies of adolescents and adults with HFASD completed to date, findings suggest that they face a multitude of cooccurring psychiatric (e.g., anxiety, depression), psychosocial, and functional issues, all of which occur in addition to their ASD symptomatology. Despite this, traditional mental health services and supports are falling short of meeting the needs of these adults. This review highlights the service needs and the corresponding gaps in care for this population. It also provides an overview of the literature on psychiatric risk factors, identifies areas requiring further study, and makes recommendations for how existing mental health services could include adults with HFASD.

Child, parent, and service predictors of psychotropic polypharmacy among adolescents and young adults with an autism spectrum disorder.

OBJECTIVE: This study examined the child, parent, and service factors associated with polypharmacy in adolescents and young adults with autism spectrum disorders (ASD). METHODS: As part of an online survey examining health service utilization patterns among individuals with ASD, parents provided demographic and clinical information pertaining to their child. This included information on current medication use, as well as information on clinical services received, clinical history, and parent well-being. Analyses examined the bivariate association between individual child, parent, and service variables and polypharmacy. Variables significantly associated with polypharmacy were included in a multiple variable logistic regression. RESULTS: Of the 363 participants sampled, ∼25% were receiving two or more psychotropic drugs concurrently. The patient's psychiatric comorbidity, history of hurting others, therapy use, and parent burden were predictors of polypharmacy. CONCLUSIONS: Adolescents and young adults with ASD are a highly medicated population with multiple factors associated with psychotropic polypharmacy. Although there may be circumstances in which polypharmacy is necessary, a richer understanding of what predicts polypharmacy may lead to targeted interventions to better support these individuals and their families. Findings also highlight the need to support families of children with ASD prescribed multiple psychotropic medications.

Lessons learned from our elders: how to study polypharmacy in populations with intellectual and developmental disabilities.

Polypharmacy is the concurrent use of multiple medications, including both psychotropic and non-psychotropic drugs. Although it may sometimes be clinically indicated, polypharmacy can have a number of negative consequences, including medication nonadherence, adverse drug reactions, and undesirable drug-drug interactions. The objective of this paper was to gain a better understanding of how to study polypharmacy among people with intellectual and developmental disabilities (IDD). To do this, we reviewed literature on polypharmacy among the elderly and people with IDD to inform future research approaches and methods on polypharmacy in people with IDD. Results identified significant variability in methods used to study polypharmacy, including definitions of polypharmacy, samples studied, analytic strategies, and variables included in the analyses. Four valuable methodological lessons to strengthen future polypharmacy research in individuals with IDD emerged. These included the use of consistent definitions of polypharmacy, the implementation of population-based sampling strategies, the development of clinical guidelines, and the importance of studying associated variables.

Listener vs. speaker-oriented aspects of speech: studying the disfluencies of individuals with autism spectrum disorders.

This study investigates the role of disfluencies such as "um" or "uh" in conversation to discern whether these features of speech serve listener- or speaker-oriented functions by looking at their occurrence (or lack of occurrence) in the speech of participants with autism. Since the characteristic egocentricity of individuals with autism means they should engage in minimal listener-oriented behavior, they are a useful group to differentiate these functions. Transcription, analysis and categorization of 26 spontaneous language samples were derived from age-matched native English-speaking controls and high-functioning individuals with Autism Spectrum Disorders (ASDs). Results showed that individuals with ASD produced fewer filled-pause words (ums and uhs) and revisions than controls, but more silent pauses and disfluent repetitions. Filled-pause words therefore appear to be listener-oriented features of speech.

Repeated speech errors: evidence for learning.

Three experiments elicited phonological speech errors using the SLIP procedure to investigate whether there is a tendency for speech errors on specific words to reoccur, and whether this effect can be attributed to implicit learning of an incorrect mapping from lemma to phonology for that word. In Experiment 1, when speakers made a phonological speech error in the study phase of the experiment (e.g. saying "beg pet" in place of "peg bet") they were over four times as likely to make an error on that same item several minutes later at test. A pseudo-error condition demonstrated that the effect is not simply due to a propensity for speakers to repeat phonological forms, regardless of whether or not they have been made in error. That is, saying "beg pet" correctly at study did not induce speakers to say "beg pet" in error instead of "peg bet" at test. Instead, the effect appeared to be due to learning of the error pathway. Experiment 2 replicated this finding, but also showed that after 48 h, errors made at study were no longer more likely to reoccur. As well as providing constraints on the longevity of the effect, this provides strong evidence that the error reoccurrences observed are not due to item-specific difficulty that leads individual speakers to make habitual mistakes on certain items. Experiment 3 showed that the diminishment of the effect 48 h later is not due to specific extra practice at the task. We discuss how these results fit in with a larger view of language as a dynamic system that is constantly adapting in response to experience.

Animacy and word order in individuals with autism spectrum disorders.

Individuals with autism or autism spectrum disorders (ASDs) are known to have difficulties discriminating animacy and are less likely to attend to animate stimuli, which may underlie the social deficits of autism. For individuals without ASD, animacy also affects word order choices: speakers choose syntactic structures (active vs. passive) that place animate entities as the grammatical subject, as a result of their conceptual salience. This study tested whether highly verbal adults with ASD would show sensitivity to animacy in a picture description task. Results showed that individuals with ASD were as sensitive to animacy as controls, and overwhelmingly placed animate entities as the grammatical subject. One stimulus proved an exception, where only individuals with ASD placed an inanimate entity (a clock) in subject position in preference to an animate one (a boy), which coincides with previous observations that individuals with autism find clocks highly salient. This study provides converging evidence of the role of conceptual salience in word order choices, and furthermore shows animate entities to be highly salient for individuals with ASD, at least as it pertains to these word order choices.