Few studies to date have explored the experiences of racialized and ethno-cultural families raising autistic children in multicultural contexts such as Canada. Research conducted in the US and Canada have identified strengths and difficulties related to family functioning and coping strategies used by immigrant parents. Additionally, this research has also identified barriers and facilitators to accessing diagnostic and other autism services across the lifespan. However, the majority of these studies have broadly categorized immigrant populations, potentially masking important differences within pan-ethnic populations. In Canada, and British Columbia (BC) specifically, one of the largest and fastest growing visible minority groups are Koreans (Statistics Canada, 2017). Yet despite this, no studies to date have examined the experiences and perceptions of Korean immigrant parents of autistic children living in BC. This gap in the research has become increasingly urgent given the growing prevalence rates of autism and the highly complex service system in Canada, which varies considerably across provinces. This research utilized a community engaged approach and qualitative methodology to explore quality of life, service navigation, and coping strategies among 25 Korean parents of autistic children (5-33 years) living in BC. This study addressed three aims. First, parents' conceptualizations and descriptions of family quality of life (FQOL) were explored. Analyses revealed three themes that were central to their definitions of FQOL: family cohesiveness, value orientation, and acceptance from society. Second, parents' perceptions of barriers and facilitators to accessing autism services were examined. Barriers at the system (e.g., ineffective school policies), provider (e.g., negative attitudes, lack of service navigation support), and family level (e.g., stigma) were identified. Facilitators included family-centered care (system level), culturally competent and bilingual professionals (provider level), and connections to cultural community organizations (family level). Third, a subset of caregivers (n=12) representing both high and low levels of FQOL shared their coping strategies on how they came to terms with their child's diagnosis and manage stress. The results are discussed linking previous research to current findings and considered in terms of practice and policy implications with future areas of research identified.

This research methods case describes my dissertation research, which utilized a mixed-methods design to examine quality of life among families of children with autism spectrum disorder. A large group or participants completed surveys over the phone and online, and a smaller subset participated in follow-up interviews. The case presents an overview of the methodological challenges we confronted, including consideration of how best to engage diverse participants and choosing appropriate survey tools, given the unique needs of our population. We describe the strategies we employed to address these challenges and reflect on their effectiveness. In particular, we highlight a unique approach in which we hosted Knowledge Translation events that brought together individuals with autism spectrum disorder and their families with researchers, service providers, clinicians, and government representatives. These events proved critical across the research process, as they informed the original study design, served as a venue for participant recruitment, and inspired the inclusion of key questions within the interview guide. We also discuss methods of engaging hard-to-reach populations. The methodological implications of the study design and methodology are reviewed, and recommendations to future researchers are presented.

Given the unique demands of raising a child with autism spectrum disorder (ASD), it is necessary to understand the impact on the quality of life (QoL) of their caregivers. Though QoL is considered an important outcome in health services research (Moons et al., 2006; Oliveira, Carvalho, & Esteves 2016), there is a lack of knowledge about QoL in caregivers of children with ASD or caregivers of children for whom there are ASD concerns, but no formal diagnosis. The objectives of the current study were to (1) Examine how having a young child with ASD or ASD concerns affects caregiver QoL, relative to children with other developmental concerns and typical development; (2) Examine profiles across QoL domains within each caregiver group to determine which QoL domains were most impacted relative to other domains; (3) Examine to what extent three levels of determinants contribute to caregiver QoL: family demographic (child age, family income, caregiver employment status, number of children in the home), psychological (parenting stress), and health care (family-centered care); and 4) (Exploratory) Examine the extent to which family centered care moderates the relation between parenting stress and QoL. The sample was drawn from a larger NIH study examining screening and referral practices for children with ASD in primary care provider (PCP) practices and early intervention (EI) agencies in Washington State. The sample was comprised of three groups: caregivers of children with ASD or ASD concerns (ASD/ASD Concerns; n = 42), caregivers of children with other developmental concerns (Other Concerns; n = 34), and caregivers of children with typical development (No Concerns; n = 112). Caregivers completed a measure of family demographics, parenting stress, family-centered care, and QoL at their time of entry in the study. Results indicated that caregivers in the ASD/ASD Concerns group reported significantly lower Psychological and Social QoL than caregivers in the Other Concerns group and the No Concerns group, and significantly lower Environmental QoL and Physical QoL than caregivers in the No Concerns group (Objective 1). For caregivers in the ASD/ASD Concerns group, Social QoL was significantly lower than Environmental and Physical QoL and Psychological QoL was significantly lower than Environmental QoL (Objective 2). Income, parenting stress, and family-centered care were significant predictors for all four QoL domains, while the number of children residing in the home was a significant predictor for Physical QoL only. There was also a significant group by stress interaction for Environmental QoL, such that there was a stronger negative relationship between parenting stress and Environmental QoL for caregivers in the ASD/ASD Concerns group compared to caregivers in the No Concerns group (Objective 3). Family-centered care did not moderate the relationship between parenting stress and QoL as predicted (Objective 4). Overall, these findings suggest that future research is needed to determine how to provide additional support to all caregivers, particularly low-income families and caregivers who are experiencing high levels of parenting stress and low levels of family-centered care.

A father's inspiring portrait of his daughter informs this classic reassessment of the "epidemic" of autism. When Isabel Grinker was diagnosed with autism in 1994, it occurred in only about 3 of every 10,000 children. Within ten years, rates had skyrocketed. Some scientists reported rates as high as 1 in 150. The media had declared autism an epidemic. Unstrange Minds documents the global quest of Isabel's father, renowned anthropologist Roy Richard Grinker, to discover the surprising truth about why autism is so much more common today. In fact, there is no autism epidemic. Rather, we are experiencing an increase in autism diagnoses, and Grinker shows that the identification and treatment of autism depends on culture just as much as it does on science. Filled with moving stories and informed by the latest science, Unstrange Minds is a powerful testament to a father's search for the truth.

The research on children with autism spectrum disorders (ASD) is extensive and growing. Although these conditions are recognized as affecting the entire lifespan, the literature on ASD after childhood is limited and has not been brought together in a single volume in over a decade. Adolescents and Adults with Autism Spectrum Disorders fills this knowledge gap by focusing on needs and difficulties unique to these stages of development. Expert contributors offer cogent reviews of complex issues, from education to employment, leisure activities to illegal behaviors, mental health issues to medical health concerns. The latest findings in key areas, such as psychosocial and residential treatments, social skills programs, epidemiology, the impact of ASD on families, are examined in detail. Throughout the volume, coverage focuses on areas requiring improved models of assessment, updated data, new interventions and increased support services. Featured topics include: Transition from high school to adulthood for adolescents and young adults with ASD. Innovative programming to support college students with ASD. Romantic relationships, sexuality and ASD. Treatment of mental health comorbidities. Assessment and treatment planning in adults with ASD. The range of outcomes and challenges in middle and later life. Adolescents and Adults with Autism Spectrum Disorders is a must-have reference for a wide range of clinicians and practitioners – as well as researchers and graduate students – in clinical child, school and developmental psychology; child and adolescent psychiatry; social work; rehabilitation medicine/therapy; education and general practice/family medicine. It will also serve as an important resource for parents and caregivers with its focus on translating the current state of knowledge relevant to understanding adolescents and adults with ASD into practical and relevant recommendations on how best to support them.