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.

The role of thriving in mental health among people with intellectual and developmental disabilities during the COVID-19 pandemic in Canada.

BACKGROUND: The COVID-19 pandemic has had a negative impact on the mental health of people with intellectual and developmental disabilities. Numerous pandemic-related stressors experienced by people with intellectual and developmental disabilities may have impacted their ability to thrive, which has been linked to mental health outcomes. The current study examined the associations among COVID-19 stressors, thriving, and mental health problems among youth and adults with intellectual and developmental disabilities. METHOD: Caregivers of 159 people with intellectual and developmental disabilities between 12 and 35 years of age from Canada completed an online questionnaire. RESULTS: A mediation analysis revealed that COVID-19 stressors were positively associated with mental health problems, and that thriving partially mediated this association. CONCLUSION: Our findings suggest that experiences of thriving may be an important target for mental health support for people with intellectual and developmental disabilities.

Parent Involvement in Mental Health Treatment for Autistic Children: A Grounded Theory-Informed Qualitative Analysis.

Cognitive behavior therapy (CBT) is an effective treatment for many autistic children experiencing mental health problems, and parents are particularly involved in their psychotherapy. This study presents a conceptual framework of successful parent involvement in CBT for autistic children. Seventeen therapists (94% female) and 11 mothers were interviewed about their involvement in a CBT program for autistic children ages 8-13 years. The conceptual framework depicts how parent involvement varies depending on child, parent, and environmental factors. Parents' contributions to therapy were grouped into five main roles. Parents' beliefs and attitudes toward therapy also influenced their involvement. This is the first study to empirically investigate how parents of autistic children contribute to the therapeutic process in CBT.

Attitudes Toward People With Intellectual Disability Associated With Integrated Sport Participation.

Direct, meaningful contact with people with intellectual disability, such as through integrated sport, may be related to positive attitudes. The current study aimed to compare implicit (unconscious) and explicit (conscious) attitudes between adults involved in integrated sport events and those in a comparison group who were not and examine the association between attitudes and degree of integrated sport involvement. An online survey measuring attitudes was completed by 295 adults without intellectual disability who participated in integrated sport activities and 450 adults who did not. Individuals involved in integrated sport reported less negative behavioral and affective attitudes relative to the comparison group, with mixed results for cognitive attitudes. Groups did not differ on implicit attitudes. Greater integrated sport involvement was related to some aspects of explicit attitudes. Involvement in integrated sport may be linked to how participants view intellectual disability, which has important implications for enhancing social inclusion and informing positive attitudes.

The role of cognitive control and emotion regulation in predicting mental health problems in children with neurodevelopmental disorders.

BACKGROUND: Many youth with neurodevelopmental disorders (NDDs) experience mental health problems such as anxiety, depression or anger, and these are often associated with impairments of cognition and emotion regulation. The mechanisms that may be linking cognitive difficulties, emotion regulation and mental health are not known. AIMS: The current study examined whether adaptive and maladaptive (dysregulated) emotion regulation mediated the link between different cognitive control processes (working memory, inhibition and shifting) and internalizing/externalizing symptoms in children with NDDs. METHODS: Participants included 48 children (8-13 years of age) with one or more diagnoses of autism, attention deficit hyperactivity disorder, cerebral palsy and learning disability, who were enrolled in a larger study of cognitive behaviour therapy targeting emotion regulation. Multiple mediation analyses were implemented using the PROCESS macro. The mediation effects of adaptive and maladaptive emotion regulation were examined on the relationships between (1) working memory and internalizing/externalizing symptoms, (2) inhibition and internalizing/externalizing symptoms and (3) shifting and internalizing/externalizing symptoms. All data were collected prior to intervention, at baseline. RESULTS: Shifting, inhibitory control and working memory predicted increased emotion dysregulation, which functioned as a full mediator to both internalizing and externalizing problems in children with NDDs. CONCLUSIONS: In the presence of emotionally triggering situations, children with greater cognitive challenges experience greater maladaptive emotion regulation, which results in both internalizing and externalizing problems. For youth with NDDs, therapeutic plans that include strengthening of working memory, inhibition and shifting abilities in addition to emotion regulation skills training may be helpful in alleviating externalizing and internalizing behaviour.

Beyond the Motor Domain: Exploring the Secondary Effects of a Fundamental Motor Skill Intervention for Children With Autism Spectrum Disorder.

Early motor skill interventions have been shown to improve the motor skill proficiency of children with autism spectrum disorder; however, little is known about the secondary effects associated with these types of interventions (e.g., influence on behavior, social skills, family dynamics). The purpose of this qualitative study was to (a) investigate parents' perceptions of the child-level benefits associated with a fundamental motor skill intervention for their 4-year-olds with autism spectrum disorder and (b) explore how child-level benefits influenced the family unit. Eight parents (N = 8) were interviewed (semistructured) about their experiences with the intervention for their child(ren); the study was grounded in phenomenology. Five main child-level benefits emerged, including improvements with (a) motor skills, (b) social skills, (c) listening skills, (d) turn-taking skills, and (e) transition skills. The child-level benefits then extended to family members in a number of ways (e.g., more positive sibling interactions). These findings highlight several important secondary effects that should be investigated in future research.

School satisfaction in parents of children with severe developmental disabilities.

BACKGROUND: Previous research suggests parents' level of satisfaction with their child's school experience is highly variable. The present author explored school satisfaction in a Canadian sample of parents of children with severe and often complex developmental disabilities. METHOD: Parents of 185 children completed questionnaires regarding their satisfaction with nine aspects of their child's school experience. Satisfaction was examined in relation to child's age, diagnosis of Autism, adaptive level, and maladaptive behaviour; parents' mental health difficulties and perception of caring burden; and the child's classroom type and level of clinical services at school. RESULTS: School satisfaction was unrelated to parents' mental health or burden scores, was related to child's adaptive and maladaptive behaviour, as well as type of classroom placement. CONCLUSIONS: It is important to understand what aspects of the school experience are influential for different children and families so that their experience can be optimized as far as possible.

Measuring therapeutic alliance in children with autism during cognitive behavior therapy.

Therapeutic alliance (TA), or the collaborative relationship between a therapist and client, has been shown to be an important component of intervention success. The objective of this study was to examine the psychometric properties of the Therapy Process Observational Coding System-Alliance Scale (TPOCS-A). The sample consisted of 20 children (19 males) ages 8 to 12 years with autism and their parents (15 mothers, 5 fathers), who completed a cognitive-behavioural intervention designed to improve children's emotion regulation skills. Two trained coders rated early, middle, and late parent and child alliance using the TPOCS-A after watching video recorded therapy sessions. Therapist-reported child involvement, alliance, and adherence were also assessed. Psychometric findings revealed that the TPOCS-A is a reliable and valid measure of therapeutic alliance for children with autism. The implications of examining TA in empirically supported treatments for this population are discussed.

A randomized waitlist-controlled trial of cognitive behavior therapy to improve emotion regulation in children with autism.

BACKGROUND: Mental health problems are common among individuals with autism spectrum disorder (ASD), and difficulties with emotion regulation processes may underlie these issues. Cognitive behavior therapy (CBT) is considered an efficacious treatment for anxiety in children with ASD. Additional research is needed to examine the efficacy of a transdiagnostic treatment approach, whereby the same treatment can be applied to multiple emotional problems, beyond solely anxiety. The purpose of the present study was to examine the efficacy of a manualized and individually delivered 10-session, transdiagnostic CBT intervention, aimed at improving emotion regulation and mental health difficulties in children with ASD. METHODS: Sixty-eight children (M age = 9.75, SD = 1.27) and their parents participated in the study, randomly allocated to either a treatment immediate (n = 35) or waitlist control condition (n = 33) (ISRCTN #67079741). Parent-, child-, and clinician-reported measures of emotion regulation and mental health were administered at baseline, postintervention/postwaitlist, and at 10-week follow-up. RESULTS: Children in the treatment immediate condition demonstrated significant improvements on measures of emotion regulation (i.e., emotionality, emotion regulation abilities with social skills) and aspects of psychopathology (i.e., a composite measure of internalizing and externalizing symptoms, adaptive behaviors) compared to those in the waitlist control condition. Treatment gains were maintained at follow-up. CONCLUSIONS: This study is the first transdiagnostic CBT efficacy trial for children with ASD. Additional investigations are needed to further establish its relative efficacy compared to more traditional models of CBT for children with ASD and other neurodevelopmental conditions.

Patterns of sport participation for youth with autism spectrum disorder and intellectual disability.

BACKGROUND: Little is known about sport participation in youth with Autism Spectrum Disorder (ASD). The current study examined sport characteristics (frequency, diversity, positive social experiences [PSE]) for youth with ASD and intellectual disability compared to youth with intellectual disability alone and explored the personal and contextual correlates of involvement. METHOD: Parents (N = 409) completed an online survey, and multiple mediation analyses were used to examine the factors that explained the relationships between sport involvement in youth with ASD and intellectual disability. RESULTS: No significant main effects of ASD status were found for frequency or diversity, but youth with intellectual disability alone had higher scores for PSE compared to youth with ASD and intellectual disability. Sociocommunicative abilities, coach relationship and resources mediated the relationship between ASD status and PSE. CONCLUSIONS: A better understanding of the factors related to sport is essential for allowing families, service providers and policy makers to improve involvement for youth with ASD.

Self-compassion and psychological distress in parents of young people and adults with intellectual and developmental disabilities.

BACKGROUND: Parenting an individual with intellectual and developmental disabilities (IDD) can be challenging, particularly during adulthood. It is important to better understand ways of supporting families as individuals with IDD age. Self-compassion is a potential internal coping resource for parents, and is strongly linked to positive mental health outcomes, though research has yet to examine it in parents of adults with IDD. METHOD: The current study examines the association between self-compassion and measures of well-being for 56 parents of adults with IDD. RESULTS: Greater self-compassion was related to lower levels of stress and depression, even after accounting for other known stressors, such as economic disadvantage, having a child with an Autism Spectrum Disorder diagnosis, and high parent burden. CONCLUSIONS: Self-compassion may offer resiliency against these parenting challenges.

Understanding Special Olympics Experiences from the Athlete Perspectives Using Photo-Elicitation: A Qualitative Study.

BACKGROUND: Many individuals with intellectual disabilities experience challenges to participating in organized sport, despite its known benefits. The aim of this qualitative study was to understand the experiences of participating in sport (Special Olympics) from the perspectives of athletes with intellectual disabilities. METHODS: Five participants (13-33 years of age) took part in a photo-elicitation project during a 1-month period. RESULTS: Our thematic analysis of participant photographs and descriptions revealed the following athlete themes: 'Connectedness' and 'Training in Sport'. CONCLUSION: Photo-elicitation was a useful and important tool in assisting athlete participants to communicate their motivations to participate in sport in ways that using traditional verbal interviewing would not.

Informal Support and Burden among Parents of Adults with Intellectual and/or Developmental Disabilities.

BACKGROUND: Parents often play a lifelong role in supporting their sons and daughters with intellectual and/or developmental disabilities (IDD). There is a need to better understand parent resources, particularly when the individual with IDD has behaviour problems, as the latter has consistently been linked to parental burden. METHODS: The current study aimed to investigate the relationship between the behaviour support needs of 212 adults with IDD and parental burden, and whether perceived helpfulness of informal supports moderated this relationship. The helpfulness of individual sources of informal support was also explored. RESULTS: Informal support was negatively related to burden, although it did not act as a moderator. Individual sources varied in terms of how they were related to burden, but none acted as moderators. CONCLUSIONS: Although informal social support appears to be important to parents and may help alleviate burden, it does not appear to act as a moderator as anticipated.

Predictors of emergency service use in adolescents and adults with autism spectrum disorder living with family.

INTRODUCTION: The use of emergency services among adolescents and adults with autism spectrum disorder (ASD) transitioning into adult health services has not been well described. OBJECTIVES: To describe emergency service use including emergency departments (EDs), paramedics, and police involvement among adolescents and adults with ASD and to examine predictors of using emergency services. METHODS: Caregivers of 396 adolescents and adults with ASD were recruited through autism advocacy agencies and support programmes in Ontario to complete a survey about their child's health service use. Surveys were completed online, by mail and over the phone between December 2010 and October 2012. Parents were asked to describe their child's emergency service use and provide information about potential predictive factors including predisposing, enabling and clinical need variables. RESULTS: According to parents, 13% of their children with ASD used at least one emergency service in a 2-month period. Sedation or restraints were used 23% of the time. A combination of need and enabling variables predicted emergency service use with previous ED use in the last year (OR 3.4, 95% CI 1.7 to 6.8), a history of hurting others (OR 2.3, 95% 1.2 CI to 4.7) and having no structured daytime activities (OR 3.2, 95% CI 1.4 to 7.0) being the strongest multivariate predictors in the model. CONCLUSIONS: Patients with ASD and their families are likely to engage with paramedics or police or visit the ED. Further education and support to families and emergency clinicians are needed to improve and, when possible, prevent such occurrences.

Participation of Children With Autism During COVID-19: The Role of Maternal Participation.

BACKGROUND: Little is known about participation during adverse times. OBJECTIVES: This study described participation of children with autism aged 6 to 13 during COVID-19 pandemic and examined the extent to which child factors, mother's own participation, and environmental barriers/supports explain child participation in home and community. METHOD: A total of 130 mothers completed the Participation and Environment Measure for Children and Youth, the Health Promoting Activities Scale, functional issues checklist, and sociodemographic questionnaire. RESULTS: Children's participation frequency and involvement were significantly higher at home than in the community. In both settings, mothers desired change in 71% of activities. Multiple regression models indicated that child's age and mother's participation frequency significantly explained child's home involvement (R2 = 21%), where mother's participation (frequency) had a unique contribution (ΔR2 = 10.4%) at home but not in the community. CONCLUSION: Findings imply the importance of maternal participation to child's participation at home and suggest redirecting attention for enhancing family participation as a whole.

Coherence of Parental Representations Following Therapy for Autistic Children.

Autistic children experience high rates of mental health challenges, and links have been found between child mental health and the parent-child relationship. As parents of autistic children are often actively involved in their child's treatment, it is important to consider aspects of the parent-child relationship within this context. The present study investigated changes in a component of the parent-child relationship, the coherence of parental representations, following participation in a 10-week cognitive behavioural therapy intervention designed to address autistic children's mental health challenges. Relationships were examined between coherence and child characteristics (i.e., autism symptoms, mental health), and associations with child treatment outcomes (i.e., mental health). Participants included 81 children (89% boys) aged 8 to 13 years and their parents (85% mothers) aged 35 to 54 years. Baseline levels of coherence were related to children's mental health symptoms but not autism symptoms. Although there were no significant changes in overall coherence across therapy, subscale-level improvements (i.e., concern, acceptance) emerged. Changes in coherence across therapy were linked with children's post-intervention behavioural symptoms and were approaching significance for internalizing problems, but were not associated with externalizing problems. It is critical to investigate factors that shape the coherence of parents' representations of their children, as this may provide insight into potential targets for intervention. Ascertaining whether participation in therapy improves parental coherence, and consequently child treatment outcomes, can advocate for parent-involved therapy, which will ultimately benefit the well-being of autistic children.

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.

Realist process evaluation of the knowledge translation programme of a patient-oriented research network.

RATIONALE: The Knowledge Translation (KT) Programme of a pan-Canadian strategic patient-oriented research network focused on brain-based developmental disabilities aimed to mobilize knowledge relevant to the network members. The programme also promotes and studies integrated Knowledge Translation (iKT) approaches involving different interested parties, such as researchers, patient-partners and decision-makers, in all parts of the knowledge creation process. AIMS AND OBJECTIVES: The objective of this study is to advance research programme evaluation methods through a realist evaluation of the process of implementing iKT activities. METHODS: Realist process evaluation included: (1) development of initial programme theories (using the partnership synergy theory); (2) data collection and analysis; (3) synthesis and refinement of theories through engagement with literature; and (4) presentation of findings in context-mechanism-outcome (C-M-O) configurations. A range of project documentation records were reviewed for analysis, and three co-leads, a programme coordinator, and a senior research associate were consulted to contextualize the implementation process of relevant KT activities. RESULTS: Based on the developed C-M-O configurations, we identified five key mechanisms of generating synergy in the iKT processes: (1) Visible shared leadership that embodies what iKT looks like; (2) Researchers' readiness for iKT; (3) Adaptation and flexible allocation of resources to emerging needs; (4) Power sharing to create practical and creative knowledge; and (5) Collective voice for potential transformative impacts at the policy level. CONCLUSIONS: The current realist evaluation demonstrated how partnerships between researchers, patient-partners and other interested parties can synergistically generate new ways of thinking among all interested parties, actionable strategies to integrate users in research, and solutions to disseminate knowledge. In particular, we identified a pivotal role for patient-partners to act as equal decision-maker helps building and maintaining partnerships and consolidating KT strategies.

A Systematic Review of Therapeutic Process Factors in Mental Health Treatment for Autistic Youth.

Understanding the role of therapeutic process factors in treatment change may prove useful for discerning why some autistic youth benefit from psychosocial interventions that target emotional and psychological aspects of mental health, while others do not. The aim of the current study was to synthesize what is currently known about therapeutic process factors in mental health treatment of emotional and psychological challenges for autistic youth, regarding how process factors have been measured in past research, and the relation between process factors and treatment outcome. A systematic review of the literature was conducted to narratively synthesize all articles published up until June 2021. Methodological quality of included studies was appraised. Twenty-five studies met inclusion criteria. Process factors assessed across studies included relational factors; treatment expectations, readiness, and satisfaction; and treatment engagement from youth and their parents. Process-outcome associations were reported for a limited number of constructs. There is a limited, albeit growing, body of high-quality research evaluating the role of process factors in the treatment of mental health issues for autistic youth. Future research should continue to examine process factors in relation to treatment outcome, and validate measures to accurately capture process-related constructs in mental health treatment for this population. Greater understanding of therapy processes can lead to developing evidence-informed strategies that clinicians can implement to promote positive expectations, relationships, and engagement.

Treatment Engagement as a Predictor of Therapy Outcome Following Cognitive Behaviour Therapy for Autistic Children.

PURPOSE: Active engagement in one's therapy is a key contributor to successful outcomes. Research on child engagement in cognitive behaviour therapy (CBT) has largely focused on youth without autism. This longitudinal study examined multiple indicators of child engagement in relation to outcomes for autistic children who took part in CBT for emotion regulation. METHOD: Data were collected from 60 autistic children who were between 8 and 13 years of age (86.7% male; Mage = 9.58 years, SD = 1.44 years; 75% White). Indicators of child engagement included independent observer ratings of in-session involvement, as measured by the Child Involvement Rating Scale, and therapist ratings of the therapeutic relationship and homework completion using single-item measures. Indicators of engagement were measured at early (i.e., first third), middle (i.e., mid third), and late (i.e., final third) stages of treatment. Parent-reported emotion regulation was the primary treatment outcome, as measured by the Emotion Regulation Checklist. RESULTS: After controlling for pre-treatment scores, in-session involvement significantly predicted some aspects of post-treatment emotion regulation, whereas therapeutic relationship and homework completion did not. CONCLUSIONS: Child in-session involvement throughout therapy may be particularly relevant for treatment change. Addressing issues related to in-session involvement early in treatment may help to promote therapeutic success for autistic children.