Background: Caregivers of children with Autism Spectrum Disorder (ASD) have been found to have poor mental health outcomes and higher stress compared to the general population, parents of typically developing children, and parents of children with other chronic health care conditions. Emotional support for caregivers has been shown to buffer the stress and negative effects that some caregivers experience. Caregivers living in rural areas may face additional barriers to obtaining support for themselves due to the lack of local support resources. Purpose: The purpose of this dissertation study is to examine geographic (urban, suburban, and rural setting) disparities in overall mental health and stress for caregivers and the amount of emotional support sources received by caregivers of children with ASD. In addition, the impact emotional support has on caregiver overall mental health and stress for caregivers of children with ASD is explored. Method: A cross-sectional secondary analysis of the 2016-2019 National Survey of Children’s Health (NSCH) data was used to conduct this dissertation study. Complex survey data analyses techniques with bivariable and multivariable linear regression models were employed for the statistical analyses. Results: No geographic disparities were found in caregiver overall mental health, caregiver stress, or emotional support received when controlling for possible confounding variables. Informal emotional support was found to significantly decrease caregiver stress for caregivers of children with ASD when controlling for covariates. In addition, formal emotional support was found to increase stress for caregivers, but this relationship was no longer significant when controlling for covariates. Overall, near or over a quarter of the subpopulation sample in each geographic area reported having no informal support sources and over half reported having no formal support sources. Conclusion: Despite hypotheses based on previous research, geographic location of residence did not predict outcome variables in parents of children with ASD. However, a concerning percentage of the sample in this study reported having no informal or formal emotional support. This is troubling as informal emotional support appears to be beneficial in decreasing caregiver stress for caregivers of children with ASD. Recommendation: Future research is needed to explore the characteristics and types of emotional support found beneficial to caregivers of children with ASD in varying geographic areas. Barriers to receiving emotional support need to be identified and intervention studies are needed to target the lack of emotional support accessed by caregivers of children with ASD. When providing formal emotional support to caregivers of children with ASD, health care providers need to be aware of the possibility of adding stress to caregivers.

Addressing the Gaps" delves into the often-overlooked struggles of autistic children and their families in Canada, revealing how systemic inadequacies in healthcare, education, and social services lead to profound and lasting impacts. Despite a myriad of policies and programs, many children with autism spectrum disorder (ASD) are left to navigate a fragmented system that too often falls short. This eBook uncovers the lengthy delays in diagnosis, the patchwork of services that vary drastically from one province to another, and the significant financial burdens placed on families seeking essential therapies and interventions. It highlights the inconsistencies in educational support, where inclusive education policies are poorly implemented and resources for specialized programs are scarce. Through powerful case studies and personal narratives, "Addressing the Gaps" paints a vivid picture of the daily battles faced by autistic children and their families, from social isolation and bullying to the overwhelming stress on parents and caregivers. These stories are complemented by a critical analysis of current government initiatives and the persistent gaps that need urgent attention. Yet, amidst these challenges, the book also shares inspiring success stories of advocacy, innovation, and resilience. It offers a comprehensive set of recommendations aimed at policymakers, educators, healthcare providers, and community leaders, providing a roadmap for creating a more equitable and supportive system.

Children with autism spectrum disorder (ASD) are uniquely vulnerable to any adverse effects of the coronavirus (COVID-19) pandemic due to greater healthcare needs, dependency on resources and services, and difficulty in adapting to environmental changes. Caregivers of children with autism also experience substantial stress, even under ideal conditions, and have simultaneously been negatively impacted by the pandemic based on disruptions in routines and social infrastructures that typically bolster against mental health problems. Comprising data from two studies, this dissertation reports changes throughout the pandemic regarding the adaptive and developmental health of children with autism; access and barriers to telehealth; and the emotional wellbeing of their parents, with an additional aim to determine whether clinical or sociodemographic characteristics affect outcomes. Study 1 was a secondary analysis of 3,941 parents of children with autism between the ages of 3- and 10-years-old, shared from the Simons Foundation Powering Autism Research for Knowledge (SPARK) national autism project. Study 2 consisted of primary data collected from 85 parents of children with ASD within this same age range, recruited throughout the United States. Both studies obtained direct responses from caregivers to comprehensively explore challenges presented by the COVID-19 pandemic and characterize the outcomes of children with ASD and their families. Participants were given an online battery of standardized and novel measures, administered across Baseline and Follow-Up timeframes (spanning 1–6 months in Study 1, and 3 months for Study 2). Tests of group and mean differences and regression analyses assessed relations among behavioral characteristics of the children, general experiences and concerns regarding current service delivery, and the impact of the COVID-19 outbreak on parental wellbeing, while quotes and free-response comments were reviewed descriptively for common themes. Results showed children with ASD mostly demonstrated increases in adaptive and self-care behaviors between evaluation points, yet still performed below chronological age-level. Most families faced disruption in autism services due to COVID-19, but transitioning to online/remote delivery has been possible and successful in some instances. Finally, all children and parents experienced negative mental health effects during this time, though the extent of this impact varied based on risk and/or protective factors inherent to each individual family. Results also uncovered demographic disparities in COVID-19-related stressors and outcomes, particularly for parents from a lower educational background, families who are economically disadvantaged, and those residing in smaller geographic areas. Thematic analyses revealed parent concerns surrounding finances, fear of sickness, and the overarching impacts on child development, given the shift in education, therapies, and social interaction opportunities. Positive changes frequently included increased time for family togetherness, reduced academic and social worry in children, and benefits provided by technology. These findings outline the impact of the coronavirus pandemic on the autism population and can guide efforts to maintain and promote health and development while in crisis and inform strategies to limit potential harm in future emergencies. The value of this dissertation is its qualitative and quantitative consideration of both child and caregiver, and emphasis on the importance of ASD services during this critical age of development, recommending both parent and provider training programs as the best method to ensure continuity of care.

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.

A practical guide to adaptive behaviors across a range of neurodevelopmental disorders Adaptive behavior assessment measures independent living skills, including communication, social skills, personal care, and practical work skills. For individuals with intellectual disabilities, evaluation of these skills is a critical tool for measuring eligibility and can identify specific skills that must be learned before effective educational interventions can be implemented. Essentials of Adaptive Behavior Assessment of Neurodevelopmental Disorders describes the role of adaptive behavior in assessment and treatment, and provides clear guidance for measurement. Case samples provide real-world illustration of behaviors and assessment, and systematic comparison of various measures are presented and explained to better inform planning. Individual chapters outline specific adaptive behaviors across a range of neurodevelopmental disorders, giving clinicians, practitioners, students, and researchers a better understanding of diagnostic differentials and how to place independent skill programming in treatment and intervention. Plan intervention and treatment based on accessible measurement guidelines across a range of disorders Gain a deeper understanding of adaptive functioning specific to ADHD, autism spectrum disorders, disruptive behavior disorders, and genetic disorders Compare and contrast current measures to evaluate their strengths, weaknesses, and areas of overlap Quickly locate essential information with Rapid Reference and Caution boxes For individuals with neurodevelopmental disorders, adaptive behaviors are the keys to independence; without them, these individuals will perpetually struggle with achieving optimum independence without the basic skills needed to function at home, in school, and in the community. Assessment allows these skills to be factored in to treatment and intervention planning, and can help improve the outcomes of other intervention methods. Essentials of Adaptive Behavior Assessment of Neurodevelopmental Disorders clarifies the assessment of these important behaviors, helping clinicians make more informed decisions around diagnosis, education, and treatment planning.