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.

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.

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.

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.

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.

Influence of a Brief Autism Education Intervention on Peer Engagement and Inclusion At Mainstream Day Camps: A Mixed-Methods Pilot Study.

To explore the benefits of a brief autism education intervention on peer engagement and inclusion of autistic children at day camps. A convergent, parallel, two-arm (intervention/no intervention), non-randomized, mixed-methods design was used. The individualized, peer-directed, 5-10 min intervention included four components: (1) diagnostic label, (2) description and purpose of unique behaviors, (3) favorite activities and interests, and (4) strategies to engage. A timed-interval behavior-coding system was used to evaluate engagement between each autistic camper and their peers based on videos taken at camp (days 1, 2, 5). Interviews with campers and camp staff explored why changes in targeted outcomes may have occurred. Percent intervals in which the autistic campers were jointly engaged with peers improved in the intervention group (n = 10) and did not change in the control group (n = 5). A large between group intervention effect occurred by day 5 (Z = - 1.942, η2 = 0.29). Interviews (5 autistic campers, 34 peers, 18 staff) done on the last day of camp in the intervention group garnered three themes: (1) Changed behavioral attribution, (2) Knowledge facilitates understanding and engagement, and (3) (Mis)perceptions of increased inclusion. A brief educational intervention that includes individualized explanatory information and strengths-based strategies might improve peers' understanding of and social engagement with autistic children in community programs such as camps.

Patient engagement in a national research network: barriers, facilitators, and impacts.

BACKGROUND: Little is known about patient engagement in the context of large teams or networks. Quantitative data from a larger sample of CHILD-BRIGHT Network members suggest that patient engagement was beneficial and meaningful. To extend our understanding of the barriers, facilitators, and impacts identified by patient-partners and researchers, we conducted this qualitative study. METHODS: Participants completed semi-structured interviews and were recruited from the CHILD-BRIGHT Research Network. A patient-oriented research (POR) approach informed by the SPOR Framework guided the study. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. The data were analyzed using a qualitative, content analysis approach. RESULTS: Twenty-five CHILD-BRIGHT Network members (48% patient-partners, 52% researchers) were interviewed on their engagement experiences in the Network's research projects and in network-wide activities. At the research project level, patient-partners and researchers reported similar barriers and facilitators to engagement. Barriers included communication challenges, factors specific to patient-partners, difficulty maintaining engagement over time, and difficulty achieving genuine collaboration. Facilitators included communication (e.g., open communication), factors specific to patient-partners (e.g., motivation), and factors such as respect and trust. At the Network level, patient-partners and researchers indicated that time constraints and asking too much of patient-partners were barriers to engagement. Both patient-partners and researchers indicated that communication (e.g., regular contacts) facilitated their engagement in the Network. Patient-partners also reported that researchers' characteristics (e.g., openness to feedback) and having a role within the Network facilitated their engagement. Researchers related that providing a variety of activities and establishing meaningful collaborations served as facilitators. In terms of impacts, study participants indicated that POR allowed for: (1) projects to be better aligned with patient-partners' priorities, (2) collaboration among researchers, patient-partners and families, (3) knowledge translation informed by patient-partner input, and (4) learning opportunities. CONCLUSION: Our findings provide evidence of the positive impacts of patient engagement and highlight factors that are important to consider in supporting engagement in large research teams or networks. Based on these findings and in collaboration with patient-partners, we have identified strategies for enhancing authentic engagement of patient-partners in these contexts.

This qualitative research paper seeks to understand patient engagement in large teams and networks. Patient engagement is the meaningful and active partnership of patients on a research team. We aim to understand the factors needed in a research environment that consider and include patients. Patient engagement was measured through interviews with 25 CHILD-BRIGHT Network members, either patient-partners or researchers, about their experiences. In this study, patient-partners were the parents of youth affected by brain-based disorders. We identified factors that made it easier or more difficult for patient-partners to engage with the projects and the network. Additionally, we looked at the impacts of patient engagement as observed by the interviewees. We found that at the project level and network level, the factors that helped engagement and made it difficult to engage were similar for both patient-partners and researchers. At the project level for example, open communication and factors specific to patient-partners (e.g., motivation to contribute) were identified by patient-partners and researchers as helping engagement. Maintaining long-term engagement and ensuring meaningful collaboration were identified as factors that make engagement difficult. At the network level, both patient-partners and researchers noted that communication (e.g., regular follow-cup) made it easier to engage while time constraints and asking too much from patient-partners made engagement more difficult. Finally, interviewees shared that patient engagement impacted patient-partners, researchers, and the research being conducted. Patient engagement helped ensure that the research reflected patient-partners' priorities, allowed collaboration, and provided patient-partners and researchers with learning opportunities. The results of our research have allowed us to identify strategies that can be used to create more meaningful engagement within large research teams.

Autistic characteristics and mental health symptoms in autistic youth during the first COVID-19 wave in Canada.

Autistic youth are at heightened risk for mental health issues, and pandemic-related stressors may exacerbate this risk. This study (1) described caregiver-reported youth mental health prior to and during the pandemic; and (2) explored individual, caregiver, and environmental factors associated with changes in autistic characteristics, social-emotional symptoms, and overall mental health. 582 caregivers of autistic children (2-18 years old) completed an online survey between June and July 2020 in which they provided demographic information, their child's pre-COVID and current mental health, autistic characteristics, and social-emotional symptoms. Caregivers also rated their own perceived stress, and COVID-related household and service disruption. According to caregivers, youth experienced more autistic characteristics and social-emotional concerns during the pandemic. Autistic youth were also reported to experience poorer overall mental health during the pandemic than before the pandemic. Older youth whose caregiver's indicated higher perceived stress and greater household disruption were reported to experience more autistic traits during pandemic. Caregiver-reported increases in youth social-emotional symptoms (i.e., behavior problems, anxiety, and low mood) was associated with being older, the presence of a pre-existing mental health condition, higher caregiver stress, and greater household and service disruption. Finally, experiencing less household financial hardship prior to COVID-19, absence of a pre-existing psychiatric condition, less caregiver stress, and less service disruption were associated with better youth pandemic mental health. Strategies to support the autistic community during and following the pandemic need to be developed. The developmental-ecological factors identified in this study could help target support strategies to those autistic youth who are most vulnerable to mental health problems.

Clinician Knowledge, Confidence, and Treatment Practices in Their Provision of Psychotherapy to Autistic Youth and Youth with ADHD.

Autistic youth have an increased risk of mental health problems. Despite the efficacy of various psychotherapeutic approaches for autistic youth, they often do not receive these interventions. Research is needed to identify patterns of effective treatment for autistic youth and whether they differ from those used for youth with other neurodevelopmental conditions (e.g., attention-deficit hyperactivity disorder; ADHD). We compared clinicians' (N = 557) knowledge, confidence and practices when treating autistic youth and youth with ADHD. Although ratings were moderately high overall and similar interventions were used for both groups, clinicians were significantly less knowledgeable and confident when supporting autistic clients compared to clients with ADHD. Thus, improving clinician perspectives may help facilitate treatment for autistic youth with mental health problems.

Clinician factors related to the delivery of psychotherapy for autistic youth and youth with attention-deficit hyperactivity disorder.

LAY ABSTRACT: Autistic children and youth often experience mental health problems, such as anxiety, depression and behavioural challenges. Although there are therapy programmes that have been found helpful in reducing these issues, such as cognitive behaviour therapy, autistic children often struggle to receive adequate mental health care. Clinicians' knowledge, attitudes, confidence and beliefs about treating mental health problems in autistic people may be related to their choices in providing psychotherapy. Across Ontario, Canada, 611 mental health clinicians, working in publicly funded agencies, completed an online survey about their experiences and opinions on delivering therapy for autistic clients compared to those with attention-deficit hyperactivity disorder. Clinician knowledge was associated with their intention to treat autistic clients or clients with attention-deficit hyperactivity disorder, partly because of their attitudes and the social pressures or values they felt. Clinicians reported feeling less intent on providing therapy to autistic youth compared to youth with attention-deficit hyperactivity disorder because of differences in their attitudes, social pressures and knowledge. This research can inform the training and educational initiatives for mental health practitioners.

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.

Mental Health and Resilient Coping in Caregivers of Autistic Individuals during the COVID-19 Pandemic: Findings from the Families Facing COVID Study.

Many caregivers of autistic people experience mental health issues, and the impact of disruptions due to COVID-19 may present additional challenges for these individuals. This study characterized caregiver stress, anxiety, and resilient coping during COVID-19 and investigated the impact of COVID-19 disruptions, demographic variables, and resilient coping on mental health. The majority of caregivers reported some degree of disruption associated with COVID-19, and more than half reported moderate levels of stress and high anxiety. Resilient coping did not emerge as a moderator between COVID-19 disruptions and caregiver mental health, but instead had a direct effect on outcomes. Future research is needed to understand additional factors impacting the mental health of caregivers of autistic people during the COVID-19 pandemic.

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 impact of COVID-19 on the mental health and wellbeing of caregivers of autistic children and youth: A scoping review.

Caregivers and families of autistic people have experienced stress and increase in demands due to the COVID-19 pandemic that may have long-term negative consequences for both their own and their children's mental health. A scoping review was conducted to identify pandemic related demands experienced by caregivers and families of autistic children and youth. The review also consolidated information on coping strategies and parenting-related guidelines that have emerged to help parents meet these demands. Search strategies were approved by a research librarian and were conducted in peer-reviewed and gray literature databases between May 2020 and February 2021. Additional resources were solicited through author networks and social media. All articles were published between December 2019 and February 2021. Article summaries were charted, and a thematic analysis was conducted with confirmation of findings with our knowledge users. Twenty-three published articles and 14 pieces of gray literature were included in the review. The majority of articles characterized and highlighted the increase in demands on caregivers of autistic children and youth during the pandemic globally. Both quantitative and qualitative studies suggest that parents have experienced an increase in stress and mental health-related symptoms during lockdown measures. Findings suggest that families are employing coping strategies, but there no evidence-based supports were identified. The review highlighted the potential long-term impact of prolonged exposure to increasing demands on the mental health and wellbeing of caregivers and families of autistic people, and pointed to a need for the rapid development and evaluation of flexible and timely support programs. LAY SUMMARY: Caregivers and families of autistic children and youth have faced increased demands due to pandemic-related lockdown measures. We reviewed the literature to outline sources of stress, links to their influence on caregiver mental health, and if support programs have emerged to help them. Our findings suggest a number of demands have increased caregivers' risk to mental health challenges, and their potential impact on family wellbeing. Ongoing development of evidence-based supports of all families of autistic children and youth are needed.

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.

Understanding Stability and Change in Perceived Social Support in Parents of Autistic Children and Adolescents.

Parents of children with autism often have their own support needs. Informal social support can be an important component of managing parenting-related stressors. We know very little about the factors that lead to higher levels of perceived social support or the potential reciprocal relationship social support has with other factors in parents of children with autism. The current longitudinal study examined the reciprocal relations of perceived social support and parent stress and child behavior problems across a 1-year period, using three time points. There was remarkable stability in variables over time. Baseline perceived social support significantly predicted changes in child behavior and parent stress at the 6-month time point, but neither of those variables significantly predicted social support. This study adds to our understanding of social support and clarifies how perceived social support relates to other factors longitudinally.

Predictors of Changes in Daily Activity in Transition-Age Autistic Youth.

Transitioning into adulthood is fraught with challenges for autistic youth. A greater understanding of the facilitators of community involvement in school and employment during this period is warranted. The current study examines changes in service need and receipt, and the stability of accessing daily structured activities, for autistic young adults over their transition period compared to adolescents and adults that did not enter the transition period. Baseline caregiver survey data were taken from the Canadian Autism Spectrum Disorders Alliance National Autism Needs Assessment Survey in 2014, and caregivers (n = 304) completed the same set of questions in 2017 about sociodemographic factors, clinical need, service receipt and typical weekday activities. Three cohorts were compared: (1) pretransition age youth, (2) transition-age youth, and (3) young adults who were past transition age. Results suggest that transition-age youth were found to have a unique set of priority service needs compared to pre transition-age adolescent and to adult groups, and both transition-age and adult groups had lower levels of priority service receipt compared to pretransition-age adolescents. The transition-age group experienced the greatest loss of structured weekday activity between time points, and were more likely than pretransition-age adolescents to not have structured weekday activities at Time 2. A recovery of structured daily activity was not observed in young adults. Our results highlight the tumultuous nature of the transition period for autistic youth, which continues into adulthood, and the urgent need for supports during this time. LAY SUMMARY: This research highlights that autistic young people who are transitioning to adulthood are at greatest risk of losing structured weekday activities, and that once in adulthood, many continue to struggle to obtain meaningful community engagement. These results can help guide the design of adolescent and young adult transition programs.

Brief Report: Preliminary Outcomes of a Peer Counselling Program for Parents of Children with Autism in the South Asian Community.

Peer volunteers have been found to be effective in delivering psychosocial interventions when they come from the same culture and share similar experiences as participants. We examined the clinical utility (feasibility and preliminary effectiveness) of a community-based, manualized, peer-delivered group counselling program to address the need for culturally responsive counselling for parents of children with autism in the South Asian community. Sixty-three parents (Mage = 43.7 years, 68% mothers) participated in the program, and reported high stable program satisfaction across sessions. Further, parents reported improved mental health and quality of life following involvement in the program, with changes noted even after the first session. Further research is warranted to assess the efficacy of this kind of parent support intervention.