Ami Tint

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.

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.

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. Autism Res 2015, 8: 727–737.

Individual, social and contextual factors associated with psychiatric care outcomes among patients with intellectual disabilities in the emergency department

BACKGROUND Individuals with intellectual disabilities (ID) are disproportionately high users of psychiatric emergency services. Despite the demand for psychiatric assessments in the emergency department (ED), no clear guidelines have been established as to what factors should guide clinical decision-making processes. The current study aimed to explore individual, social and contextual factors related to psychiatric care outcomes among patients with ID in the emergency department. METHOD Emergency department charts were reviewed for 66 individuals with ID who visited the emergency department during a psychiatric crisis. RESULTS Standardised crisis severity scores were significantly higher in patients seen by psychiatrists as compared with patients who did not receive psychiatric consultations in the emergency department. A significantly greater proportion of patients with moderate or severe levels of ID (vs. borderline/mild) received psychiatric consultations. Emergency department visits resulting in inpatient hospital admission did not differ from those that did not, with the exception of the level of ID: patients admitted to psychiatric inpatient care were more likely to have moderate or severe levels of ID. CONCLUSIONS The psychiatric care experiences of patients with ID in the emergency department appear highly variable. Further research focused on emergency department clinical decision-making practices concerning this population is warranted.

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.

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.

Wellness Efforts for Autistic Women

Purpose of ReviewAlthough awareness of the substantial need for appropriate wellness efforts for adults with autism is growing, females with autism may have been under-identified in the past, and consequently, the research to date is largely based in a male-centric conceptualization of autism. The purpose of this narrative review was to ascertain what is known about wellness efforts for women with autism.Recent FindingsBeyond the shared challenges as experienced by autistic men, autistic women may have unique and differing social, physical, and psychological wellness needs; however, there remains limited research to date in many areas of lifespan wellness concerns.SummaryWe emphasize the need for future autism and disability research to acknowledge and account for potential sex and gender impact across areas of study. Further acknowledgement of sex and gender impact will play an important role in improving clinicians’ capacity to identify autism in girls and women, which is a foundational component of many wellness efforts.

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 review of emergency department 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. The purpose of this paper is 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.