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

LAY ABSTRACT: This 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.

Virtual group-based mindfulness program for autistic women: A feasibility study.

BACKGROUND: Autistic women experience life differently than autistic men. For example, autistic women tend to be diagnosed significantly later than autistic men, they experience a higher number of traumas, and are at increased risk for mental health conditions. Given gender-specific life experiences, autistic women may benefit from gender-specific group-based supports. Virtual mindfulness has been shown to be helpful in improving well-being among autistic adults; however, limited research has explored the impact of virtual mindfulness when it is delivered to a group of autistic women only. OBJECTIVES: The aim of this article is to describe a preliminary evaluation of a virtual mindfulness group piloted for autistic women. Five key areas of feasibility were assessed in the current study: demand, implementation, acceptability, practicality, and limited efficacy testing. METHODS: Twenty-eight women participated in a 6-week virtual autism-informed mindfulness program and were asked to complete measures assessing psychological distress, self-compassion, and mindfulness at pre and post. Participants were also asked to complete a satisfaction survey after the program. RESULTS: Results showed that the program was feasible in terms of demand, implementation, practicality, and acceptability. While quantitative results showed there were no changes in psychological distress, self-compassion, and mindfulness from pre- to post-program, qualitative results showed some benefits. CONCLUSION: Given the unique challenges that some autistic women experience, offering groups to autistic women may have some value and it would be important to continue exploring this topic area.

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. LAY SUMMARY: This study looked at how many autistic men and women died over 6 years (2010-2016), along with how they died, and compared this to adults who did not have autism living in Ontario, Canada. It found that autistic men and women were more than three times as likely to die as people of the same age who did not have a developmental disability. However, adults with other developmental disabilities besides autism were even more likely to die than autistic adults. This means that we have to pay more attention and invest in better social and health care for autistic people, along with people who have other types of developmental disabilities.

Barriers and requirements for parenting supports and mental health care among mothers with intellectual disabilities: Health and social service-provider perspectives.

BACKGROUND: Mothers with intellectual disability (ID) experience high rates of mental illness, but these needs are not adequately addressed. AIMS: We examined health and social service-provider perceptions of barriers to parenting and mental health care among mothers with ID and strategies for building good practice capacity. METHODS AND PROCEDURES: In this qualitative study in Ontario, Canada, we interviewed 13 service-providers working with mothers with ID about their experiences supporting parenting and mental health in mothers with ID, including barriers to services and strategies for building good practice capacity. Data were analyzed via inductive, semantic-level thematic analysis. OUTCOMES AND RESULTS: Perceived barriers to care provision were the vulnerable social context of women with ID, distrust of "the system" by women with ID, and siloed services. Increased training of service-providers, making accommodations in existing services, and building a community of support for women with ID were offered as strategies for good practice capacity. CONCLUSIONS AND IMPLICATIONS: Efforts to improve mental health among mothers with ID should focus on improving service-provider capacity and accommodations in existing services, and enhancing coordination of care. WHAT THIS PAPER ADDS?: Mothers with intellectual disability (ID) experience high rates of mental illness, but supports for mothers with ID typically focus on parenting skills, and women's mental health care services do not consider the unique needs of those with ID. Health and social service-providers have reported inadequate training, fragmented services, high caseloads, and lack of practical supports as barriers to providing quality care to mothers with ID. However, no studies have examined service-providers' perceptions of needs related specifically to parenting and mental health among mothers with ID. This study provides new information on barriers to parenting and mental health care among mothers with ID and strategies for good practice capacity, from the perspectives of service-providers. Perceived barriers to care provision include social determinants of health, a distrust of "the system" by women with ID, and siloed services. Providers recommended that providing better training, including accommodations in existing services, and building a community of support could be beneficial to improving practice capacity in the context of mental health care and parenting supports. These factors need to be addressed to improve mental health among mothers with ID.

Health characteristics of reproductive-aged autistic women in Ontario: A population-based, cross-sectional study.

LAY ABSTRACT: While an increasing number of girls and women are being identified with autism, we know little about reproductive-aged autistic women's health. This study used administrative data from Ontario, Canada, to compare the health of reproductive-aged autistic women with non-autistic women. Overall, reproductive-aged autistic women had poorer health compared with non-autistic women, including increased rates of material deprivation, chronic medical conditions, psychiatric conditions, history of assault, and use of potentially teratogenic medications (i.e. drugs that can be harmful to the development of an embryo or fetus). These findings suggest that there is a need for health interventions tailored to the needs of reproductive-aged autistic women.

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.

Mood-related changes in children and adolescents with persistent concussion symptoms following a six-week active rehabilitation program.

PRIMARY OBJECTIVE: The purpose of this study is to explore changes in mood in youth with persistent post-concussion symptoms following participation in a six-week active rehabilitation program. RESEARCH DESIGN: A pre-post test design was used. METHODS AND PROCEDURES: Participants (N = 40 children and adolescents with concussion symptoms >2 weeks post-injury) were recruited from the concussion services at an urban children's rehabilitation hospital and the community. The program consisted of individualized low-intensity aerobic exercise, sport-specific drills, relaxation exercises and comprehensive education and support. The 6 week program was completed by participants in their home or local community with weekly check-ins with the research team. Data were analyzed using descriptive statistics and linear regressions. MAIN OUTCOMES AND RESULTS: Outcome measures included the Beck Youth Inventories (youth), and the Child Behavior Checklist (parents). Results indicated significant improvements in anger and anxiety post-intervention with anger reduction being more pronounced in girls. CONCLUSIONS: Active rehabilitation interventions may have positive effects on mood in youth recovering from concussion. Clinicians may wish to consider addressing anxiety and anger management strategies as part of comprehensive concussion management in youth.

Mental health challenges and resilience among mothers with intellectual and developmental disabilities.

BACKGROUND: Mothers with intellectual and developmental disabilities (IDD) frequently experience mental health problems. Yet, they are excluded from broader women's mental health efforts, and few services exist to support their unique mental health needs. OBJECTIVES: Our objective was to identify key risk, protective, and resilience factors that affect mental health among mothers with IDD. METHODS: We interviewed mothers with IDD on: (1) a quantitative measure to assess demographics and depressive symptoms and (2) qualitative focus groups on parenting and mental health (analyzed through thematic analysis). There were three focus groups, for a total sample of 12 mothers with IDD. RESULTS: The 12 women in the sample had a total of 28 children, with a mean age of 11.3 years (SD = 9.9). The mean depressive symptom score in the sample was 13.8 (SD = 5.5), with 7 women scoring above the cut-off for clinically significant symptoms. Nine thematic categories were identified, organized into risks, protective factors, and resilience factors. Risks were parenting stress, life stressors, feelings of powerlessness with the child welfare system, and feeling judged. Protective factors were formal and informal supports. Resilience factors were motherhood enjoyment, having a good family life, and wishing to be independent. CONCLUSIONS: Efforts to improve mental health among mothers with IDD should minimize risks that undermine adaptive capabilities and promote resilience to restore efficacy of protective systems. Better training of service-providers working with individuals with IDD, using strength-based approaches and developing alternative, autonomy-building sources of support in the form of peer support groups is recommended.

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 12-18 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.

A qualitative study of the service experiences of women with autism spectrum disorder.

It is recognized that the experiences of women with autism spectrum disorder are often underrepresented in the literature. In this study, 20 women with autism spectrum disorder participated in five focus groups 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 women's service needs. Findings of the current exploratory study are discussed in relation to areas of future research required to ensure effective care for this understudied population.

Predictors of emergency department use by adolescents and adults with autism spectrum disorder: a prospective cohort study.

OBJECTIVES: To determine predictors of emergency department (ED) visits in a cohort of adolescents and adults with autism spectrum disorder (ASD). DESIGN: Prospective cohort study. SETTING: Community-based study from Ontario, Canada. PARTICIPANTS: Parents reported on their adult sons and daughters with ASD living in the community (n=284). MAIN OUTCOME MEASURES: ED visits for any reason, ED visits for medical reasons and ED visits for psychiatric reasons over 1 year. RESULTS: Among individuals with ASD, those with ED visits for any reason were reported to have greater family distress at baseline (p<0.01), a history of visiting the ED during the year prior (p<0.01) and experienced two or more negative life events at baseline (p<0.05) as compared with those who did not visit the ED. Unique predictors of medical versus psychiatric ED visits emerged. Low neighbourhood income (p<0.01) and living in a rural neighbourhood (p<0.05) were associated with medical but not psychiatric ED visits, whereas a history of aggression (p<0.05) as well as being from an immigrant family (p<0.05) predicted psychiatric but not medical emergencies. CONCLUSIONS: A combination of individual and contextual variables may be important for targeting preventative community-based supports for individuals with ASD and their families. In particular, attention should be paid to how caregiver supports, integrative crisis planning and community-based services may assist in preventing or minimising ED use for this vulnerable population.

Correlates of Police Involvement Among Adolescents and Adults with Autism Spectrum Disorder.

This study aimed to describe police interactions, satisfaction with police engagement, as well as examine correlates of police involvement among 284 adolescents and adults with autism spectrum disorder (ASD) followed over a 12- to 18-month period. Approximately 16% of individuals were reported to have some form of police involvement during the study period. Aggressive behaviors were the primary concern necessitating police involvement. Individuals with police involvement were more likely to be older, have a history of aggression, live outside the family home, and have parents with higher rates of caregiver strain and financial difficulty at baseline. Most parents reported being satisfied to very satisfied with their children's police encounters. Areas for future research are discussed in relation to prevention planning.

Identifying the clinical needs and patterns of health service use of adolescent girls and women with autism spectrum disorder.

Girls and women in the general population present with a distinct profile of clinical needs and use more associated health services compared to boys and men; however, research focused on health service use patterns among girls and women with Autism Spectrum Disorder (ASD) is limited. In the current study, caregivers of 61 adolescent girls and women with ASD and 223 boys and men with ASD completed an online survey. Descriptive analyses were conducted to better understand the clinical needs and associated service use patterns of girls and women with ASD. Sex/gender comparisons were made of individuals' clinical needs and service use. Adolescent girls and women with ASD had prevalent co-occurring mental and physical conditions and parents reported elevated levels of caregiver strain. Multiple service use was common across age groups, particularly among adolescent girls and women with intellectual disability. Overall, few sex/gender differences emerged, although a significantly greater proportion of girls and women accessed psychiatry and emergency department services as compared to boys and men. Though the current study is limited by its use of parent report and small sample size, it suggests that girls and women with ASD may share many of the same high clinical needs and patterns of services use as boys and men with ASD. Areas for future research are discussed to help ensure appropriate support is provided to this understudied population. Autism Res 2017, 10: 1558-1566. © 2017 International Society for Autism Research, Wiley Periodicals, Inc.

Tracking health care service use and the experiences of adults with autism spectrum disorder without intellectual disability: A longitudinal study of service rates, barriers and satisfaction.

BACKGROUND: Adults with Autism Spectrum Disorder (ASD) encounter many difficulties finding and accessing health care services. Despite this, few studies have considered the health service use patterns of adults with ASD without intellectual disability (ID). OBJECTIVES: The current study examines a diverse range of medical and mental health services and supports, as well as adults' personal experiences accessing and using these services, barriers to service use, and reported unmet service needs. METHODS: Forty adults (ages 18-61 years) with ASD without ID completed surveys every two months about their health service use for a total of 12-18 months. Bivariate analyses were conducted to understand the individual demographic and clinical factors associated with rate of service use, satisfaction with services, and barriers to health care. RESULTS: Results indicated that, beyond a family doctor, the most commonly used services were dentistry, individual counseling, and psychiatry. Individuals who had medical problems experienced significantly more barriers to service use than those who did not, and those who had medical and mental health problems were less satisfied with services. CONCLUSIONS: Findings highlight the challenges adults with ASD without ID face accessing appropriate, quality services to meet their needs, particularly those with complex medical and mental health issues. Service providers must strive to provide adequate health care to this population who may become distressed if their needs are left unmet.

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.

Perceived self-efficacy in parents of adolescents and adults with autism spectrum disorder.

Many parents of adolescents and adults with autism spectrum disorder 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 autism spectrum disorder across the lifespan, it is important that service providers support the efforts of parents who provide and access care for their children.

Family wellbeing of individuals with autism spectrum disorder: A scoping review.

Families play an important role in supporting individuals with autism spectrum disorder across the lifespan. Indicators of family wellbeing can help to establish benchmarks for service provision and evaluation; however, a critical first step is a clear understanding of the construct in question. The purpose of the current scoping review was to (a) summarize current conceptualizations and measurements of family wellbeing, (b) synthesize key findings, and (c) highlight gaps and limitations in the extant literature. A final review of 86 articles highlighted the difficulty of synthesizing findings of family wellbeing in the autism spectrum disorder literature due to varied measurement techniques and the limited use of a common theoretical direction. Considerations for future research are presented with an eye toward policy relevance.

Bullying Victimization, Parenting Stress, and Anxiety among Adolescents and Young Adults with Autism Spectrum Disorder.

Bullying victimization is commonly associated with anxiety among individuals with and without Autism Spectrum Disorder (ASD), and both bullying victimization and anxiety are more prevalent among youth with ASD than in the general population. We explored individual and contextual factors that relate to anxiety in adolescents and young adults with ASD who also experience bullying victimization. Participants included 101 mothers of adolescents and young adults diagnosed with ASD. Hierarchical multiple regression analyses were conducted to investigate the relationship between bullying victimization and anxiety in children with ASD, as well as parenting stress as a potential moderator of that relationship. Findings indicate that parenting stress moderates the association between bullying victimization and anxiety. The severity of anxiety was most strongly associated with bullying victimization when mothers reported high levels of stress. Implications for interventions that assist parents with coping and address bullying victimization are discussed.

A scenario-based dieting self-efficacy scale: the DIET-SE.

The article discusses a scenario-based dieting self-efficacy scale, the DIET-SE, developed from dieter's inventory of eating temptations (DIET). The DIET-SE consists of items that describe scenarios of eating temptations for a range of dieting situations, including high-caloric food temptations. Four studies assessed the psychometric properties of the 11-item DIET-SE. Exploratory factor analysis (N = 392) and confirmatory factors analysis (N = 124) revealed three internally consistent and reliable factors representing challenges to adhere to a diet (high-caloric food temptations [HCF], social and internal factors [SIF], negative emotional events [NEE]). Convergent validity is established with other measures of dieting self-efficacy, as well as measures of eating disinhibition, susceptibility to hunger, and weight loss competency. Criterion-related validity is provided through the assessment of goal adherence, and predictive validity is established for dieters' actual food intake (N = 68). The DIET-SE represents a short, reliable, and valid scenario-based measure of dieting self-efficacy.