Exploring the Service Experiences of Women with Autism Spectrum Disorder: A Mixed-Methods Study

Individuals with Autism Spectrum Disorder (ASD) often have complex service needs across the lifespan. The specific experiences of women with ASD, however, remain largely unknown. This concurrent mixed-methods dissertation consists of one quantitative study and one qualitative study examining the service experiences of women with ASD; integration occurred in a separate deductive, latent-level analysis. Study 1 used data from the Canadian Autism Spectrum Disorder Alliance National Needs Survey, and provides a descriptive analysis of lifetime service use, unmet service needs, and barriers to care of a sample of Canadian adults with ASD, the majority of whom did not report a co-occurring intellectual disability (ID). Few significant sex/gender differences emerged, with the exception of mental health and residential services. However, a number of significant associations between service outcome variables and micro, meso, and exo system factors were found. Study 2 is a qualitative study comprised of five focus groups of 20 women with ASD without ID with discussions centered on their service use, unmet service needs, and barriers to care. Overall, women emphasized high unmet service needs, particularly with respect to mental health concerns, residential supports, and vocational and employment services. Participants also perceived many service providers as disregarding or misunderstanding the female presentation of ASD and associated unique service needs. Results from the two studies were integrated in a latent level analysis, incorporating ecological and postcolonial feminist frameworks. The projects findings are discussed in relation to areas of future research required to ensure effective care for this understudied population

Perceived self-efficacy in parents of adolescents and adults with Autism Spectrum Disorder

Many parents of adolescents and adults with Autism Spectrum Disorder (ASD) experience difficulty accessing appropriate services for their children, and may report low levels of parent self-efficacy. In an effort to identify the factors that contribute to the difficulties these families face, this study examined the role of demographic, systemic and clinical need variables as they relate to parents’ experience of self-efficacy. Participants included 324 parents of individuals with autism spectrum disorder, 12-25 years of age. Results suggest that parent self-efficacy is related to a number of variables and not simply a child’s clinical situation, including child age, parent immigrant status, barriers to service access, and caregiver burden. Given the crucial role that parents often play in the lives of individuals with ASD across the lifespan, it is important that service providers support the efforts of parents who provide and access care for their children.This research was funded by the Canadian Institutes of Health Research (MOP 102677). Dr. Weiss is supported by the Chair in ASD Treatment and Care Research (Canadian Institutes of Health Research #284208 in partnership with NeuroDevNet, Sinneave Family Foundation, CASDA, Autism Speaks Canada, and Health Canada)

A Review of Emergency Visits made by Youth and Adults with Autism Spectrum Disorder from the Parent Perspective

Purpose: Past research has shown individuals with autism spectrum disorder (ASD) visit hospital emergency departments (ED) at high rates. In order to assist individuals with ASD, their families and health care providers to improve ED care, it is important to understand these encounters in greater detail. This study aimed to provide a descriptive summary of the ED experiences of adolescents and adults with ASD, from the perspective of their families. Design/Methodology/Approach: A subset of data from a larger prospective cohort study was used. Specifically, 46 parents of adolescents and adults with ASD provided details concerning 49 ED visits over a 12-month period. Findings: Results suggest a range of presentations requiring ED use, and also diverse profiles of those with ASD who visited the ED, in terms of age, gender, and ASD severity. While overall degree of satisfaction with care received in the ED was high, parents provided recommendations to improve the ED experiences for their family members with ASD. Originality/value: This is the first study to provide detailed accounts of ED visits from the perspective of parents of adolescents and adults with ASD. Families play an important role in the lives of individuals with ASD across the lifespan and it is important to include their perspective to improve hospital- based care for those with ASD

Professional support and positive gain for mothers of children with ASD

Though raising a child with autism spectrum disorder (ASD) is often associated with stress, many parents report positive aspects as well. Access to professional supports may be related to positive gain, given that professional supports are related to decreased levels of stress. The purpose of this study was to investigate the relationship between professional support and positive gain for mothers of children with ASD. Participants included 132 mothers of children diagnosed with ASD aged 4–21 years. Professional support and behaviour problems were found to be significant predictors of positive gain in mothers of children with ASD. The clinical implications of these results are discussed

Emergency Service Experiences of Adults with Autism Spectrum Disorder without Intellectual Disability

This study aimed to describe patterns of emergency department use and police interactions, as well as satisfaction with emergency services of 40 adults with autism spectrum disorder without intellectual disability over 12 to 18 months. Approximately 42.5% of the sample reported visiting the emergency department and 32.5% reported interactions with police during the study period. Presenting concerns for emergency department use and police interactions varied widely, highlighting the heterogeneous needs of this population. On average, participants reported being dissatisfied with care received in the emergency department while police interactions were rated relatively more favourably

Physical health of autistic girls and women: a scoping review.

BACKGROUND: There is a growing recognition of sex and gender influences in autism. Increasingly, studies include comparisons between sexes or genders, but few have focused on clarifying the characteristics of autistic girls'/women's physical health. METHODS: A scoping review was conducted to determine what is currently known about the physical health of autistic girls/women. We screened 1112 unique articles, with 40 studies meeting the inclusion criteria. We used a convergent iterative process to synthesize this content into broad thematic areas. RESULTS: Autistic girls/women experience more overall physical health challenges compared to non-autistic girls/women and to autistic boys/men. Emerging evidence suggests increased prevalence of epilepsy in autistic girls/women compared to non-autistic girls/women and to autistic boys/men. The literature also suggests increased endocrine and reproductive health conditions in autistic girls/women compared to non-autistic girls/women. Findings regarding gastrointestinal, metabolic, nutritional, and immune-related conditions are preliminary and inconsistent. LIMITATIONS: The literature has substantial heterogeneity in how physical health conditions were assessed and reported. Further, our explicit focus on physical health may have constrained the ability to examine interactions between mental and physical health. The widely differing research aims and methodologies make it difficult to reach definitive conclusions. Nevertheless, in keeping with the goals of a scoping review, we were able to identify key themes to guide future research. CONCLUSIONS: The emerging literature suggests that autistic girls/women have heightened rates of physical health challenges compared to non-autistic girls/women and to autistic boys/men. Clinicians should seek to provide holistic care that includes a focus on physical health and develop a women's health lens when providing clinical care to autistic girls/women

Health conditions and service use of autistic women and men: A retrospective population-based case-control study.

Peer reviewed: TrueThis study used administrative data from Ontario, Canada to compare the health conditions and service use of autistic women and men with adults with other developmental disabilities and with adults without developmental disabilities. Autistic women and men were more likely to have physical and mental health conditions compared to adults without developmental disabilities. Rates of health conditions were similar or lower among autistic adults compared to adults with other developmental disabilities, except more autistic adults had psychiatric conditions. Autistic women and men used higher rates of psychiatric services compared to all other groups. When comparing autistic women with same aged autistic men, sex differences were found for specific physical (Crohn's disease/colitis, rheumatoid arthritis) and psychiatric conditions (psychotic disorders, non-psychotic disorders), as well differences in service use (emergency department visits, hospitalizations, family doctor and neurologist visits). These results further highlight the high health needs and service use of autistic women and men, as well as adults with other developmental disabilities. It is critical for future research to focus on mental health support for autistic adults and to better understand how to tailor supports to best serve autistic women

Premature mortality in a population‐based cohort of autistic adults in Canada

Research from different countries suggests that autistic adults are more likely to die prematurely than non-autistic adults, but these studies do not always investigate male and female individuals separately and do not consider whether this pattern is unique to autistic people or is also an issue for people with other developmental disabilities. We examined premature mortality in autistic males and females (assigned at birth) in a population-based cohort, compared to males and females with and without other developmental disabilities. Using linked administrative health and social services population data from Ontario, Canada, age-matched males and females aged 19–65 years were followed between 2010 and 2016, and causes of death were determined. Over the 6-year observation period, 330 of 42,607 persons (0.77%) in the group without developmental disabilities had died compared to 259 of 10,646 persons (2.43%) in the autism group and 419 of 10,615 persons (3.95%) in the other developmental disabilities group. Autistic males and females were more likely to die than non-autistic males (adjusted risk ratio, RR 3.13, 95%CI 2.58–3.79) and non-autistic females (adjusted RR 3.12, 95%CI 2.35–4.13) without developmental disabilities, but were less likely to die than adults with other developmental disabilities (males: adjusted RR 0.66, 95%CI 0.55–0.79; females: adjusted RR 0.55, 95%CI 0.43–0.71). Most common causes of death varied depending on a person's sex and diagnosis. Given the greater likelihood of premature mortality in adults with developmental disabilities including autism, greater attention and resources directed toward their health and social care are needed, tailored to their sex and diagnosis-informed needs