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

Abstract

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.

A Qualitative Exploration of the Female Experience of Autism Spectrum Disorder (ASD)

“…The participants in our study linked masking behaviour to delayed diagnosis and delayed access to support for autistic females. Tint and Weiss ( 2017 ) findings reflect this and go on to discuss various unmet needs including employment support and mental health support. Baldwin and Costley ( 2016 ) found participants who remained undiagnosed up until 18 years of age or after were much less likely to receive adequate educational support than those who received an earlier diagnosis while in education.…”

Same behaviours, different reasons: what do patients with co-occurring anorexia and autism want from treatment?

“…This reflects wider difficulties that autistic people experience in accessing health services, with previous research similarly finding high levels of unmet needs, and the perception of autistic service users that these needs are misunderstood or dismissed (Nicolaidis et al, 2013;Tint & Weiss, 2017). This study also reinforces the finding of past research suggesting that treatment spaces are often not autism friendly, including difficulties with sensory sensitivity and overstimulation, suggesting that ED treatment spaces-particularly inpatient wardsmay need to be adapted for this population (Tint & Weiss, 2017). In the present study, this poor service experience was often related by participants to clinicians not recognising or understanding the role of their autism in their ED, emphasising the importance of clinician education in this area (Bruder, Kerins, Mazzarella, Sims, & Stein, 2012).…”

“…Nonetheless, at present clinicians working in ED settings do not typically receive systematic training in autism, and report lacking the knowledge or confidence to make the kinds of adaptations required for this population (Kinnaird et al, 2017). This reflects wider difficulties that autistic people experience in accessing health services, with previous research similarly finding high levels of unmet needs, and the perception of autistic service users that these needs are misunderstood or dismissed (Nicolaidis et al, 2013;Tint & Weiss, 2017). This study also reinforces the finding of past research suggesting that treatment spaces are often not autism friendly, including difficulties with sensory sensitivity and overstimulation, suggesting that ED treatment spaces-particularly inpatient wardsmay need to be adapted for this population (Tint & Weiss, 2017).…”

Physical Health of Autistic Girls and Women: A Scoping Review

“…Meanwhile, physical health challenges (e.g., epilepsy, hormonal dysregulation) can have detrimental impact on mental health and affect mood and behaviour. Such complexity and interplay may result in the high clinical needs and multiple service use that are common in the autism population, particularly girls/women [84][85][86]. Many of these physical health challenges are treatable with the proviso that clinical trials need to disaggregate their data by sex, which is unfortunately still insufficiently done for clinical trials involving autistic people.…”