How my life is unique: Sibling perspectives of autism.

LAY ABSTRACT: The impact of autism on the family is an important area of study. Much of the existing literature has focused on the parent perspective, with less emphasis on the experiences of other family members, especially non-autistic siblings. This study aimed to explore the lived experiences of a sample of nine 8- to 17-year-old non-autistic siblings of children and youth on the autism spectrum. We interviewed non-autistic siblings and analysed the written transcripts. Our results revealed the following themes: (1) Role disparities, different expectations; (2) Connection and disconnection; and (3) Our family is (extra)ordinary. Our study findings highlight siblings' unique and collective perspectives regarding their brother or sister on the spectrum within the broader family unit. We discuss the implications of these results on siblings of autistic children and youth.

Autism Comes to the Pediatric Hospital: Perspectives of Child Life Specialists.

The hospital setting may be especially difficult for pediatric patients on the autism spectrum and their families compared to those not on the spectrum. Child life specialists are healthcare professionals specifically trained to support parents and their children and help prepare them for hospital procedures. Because of this specialized skill set, these professionals likely have a wealth of expertise to share relevant to caring for autistic patients. This study aimed to understand 21 child life specialists' experiences working with patients on the spectrum. Our findings highlighted the following themes: Parents are the Experts, Proactive and Individualized Care, Disclosure, and Hospital-Wide Suggestions to Improve Patient Care. We discuss the practice implications of these findings on the healthcare experiences of pediatric patients on the spectrum.

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.

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.

Brief Report of Preliminary Outcomes of an Emotion Regulation Intervention for Children with Autism Spectrum Disorder.

Children with autism spectrum disorder (ASD) often present with comorbid psychopathology including problems with emotion regulation. The goal of the present research was to investigate the feasibility of a multicomponent manualized cognitive behavior therapy treatment program for improving emotion regulation in youth with ASD 8-12 years of age. Thirteen males and their parents participated in the intervention, reporting high satisfaction with the activities and program overall, and attending all sessions. Preliminary outcomes regarding emotion regulation and psychopathology, and feasibility of the intervention, are summarized and discussed.

Thriving in Youth with Autism Spectrum Disorder and Intellectual Disability.

Most research on mental health in individuals with autism spectrum disorder (ASD) and intellectual disability (ID) has focused on deficits. We examined individual (i.e., sociocommunicative skills, adaptive behavior, functional cognitive skills) and contextual (i.e., home, school, and community participation) correlates of thriving in 330 youth with ID and ASD compared to youth with ID only, 11-22 years of age (M = 16.74, SD = 2.95). Youth with ASD and ID were reported to thrive less than peers with ID only. Group differences in sociocommunicative ability and school participation mediated the relationship between ASD and less thriving. Research is needed to further elucidate a developmental-contextual framework that can inform interventions to promote mental health and wellness in individuals with ASD and ID.

Autism comes to the hospital: the experiences of patients with autism spectrum disorder, their parents and health-care providers at two Canadian paediatric hospitals.

Youth with autism spectrum disorder are a vulnerable, often poorly understood patient group, who may experience periodic and chronic health challenges, in addition to their primary developmental social and communication problems. Developmental and behavioural challenges can complicate management of acute health-care needs. To date, there is an absence of empirical research exploring the hospital experiences of children and youth with autism spectrum disorder, their families and their health-care providers. Therefore, the purpose of this study was to understand these experiences in order to inform hospital-based care. A total of 42 participants were interviewed (youth with autism spectrum disorder, their parents and health-care providers) at one of two Canadian paediatric hospitals, representing 20 distinct cases of patients with autism spectrum disorder. Results from the qualitative analyses indicated that patients with autism spectrum disorder faced several challenges in the context of health-care delivery in the hospital setting, as did their families and health-care provider team. Problems identified included communication and sensory challenges, and the degree of flexibility of health-care providers and the hospital organization. Supportive health-care providers were those who acknowledged parents as experts, inquired about the requirements of patients with autism spectrum disorder and implemented strategies that accommodated the unique clinical presentation of the individual patient. These recommendations have wide-reaching utility for hospital and health-care practices involving this patient group.