How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians

Abstract

Autism spectrum condition is associated with co-occurring physical health conditions and premature mortality. Autistic people experience multiple barriers to accessing healthcare. This study investigated autistic people’s experiences of healthcare and professionals’ experiences of providing healthcare to autistic people. Focus groups with 11 autistic people and one supporter, and 15 one-to-one interviews with healthcare professionals were completed. Nine themes emerged from the autistic participants’ data and eight themes emerged from the health professionals’ data. Three themes were identified by both groups: healthcare contacts (for improving the patient–provider relationship), making reasonable adjustments to healthcare (e.g. providing alternative places to wait for an appointment) and autism diagnosis. Autistic participants discussed the role of cognitive factors in the success of healthcare visits (such as rehearsing an anticipated conversation with the clinician the night before an appointment) and clinicians described system-level constraints that may affect healthcare delivery (such as time limits on appointments). This study identified inexpensive changes that health professionals and managers can make to improve healthcare access for autistic people. Lay abstract Research has shown that on average, autistic people are more likely to die earlier than non-autistic people, and barriers can stop autistic people accessing healthcare. We carried out a study where we interviewed healthcare professionals (including doctors and nurses), and held discussion groups of autistic people. Our results highlighted several key points: seeing the same professional is important for autistic people and clinicians; both clinicians and autistic people think making adjustments to healthcare is important (and often possible); autistic people process information in a different way and so may need extra support in appointments; and that clinicians are often constrained by time pressures or targets.

A survey of autistic adults, relatives and clinical teams in the United Kingdom: And Delphi process consensus statements on optimal autism diagnostic assessment for adults

“…For example, over 50% of adults were in contact with mental health services before receiving their autism diagnosis, which may mean a lack of understanding of autism in primary and secondary health care impacted their access to the diagnostic assessment service pathway. This is consistent with reports of autistic adults highlighting improved clinician understanding of autism as important for healthcare access ( Brice et al, 2021 ; Mason et al., 2021 ). In the United States, gaps in knowledge and experience of clinicians in community mental health services, were identified as barriers to provision of mental health care for autistic adults, along with the need to improve training and consultancy to address this ( Maddox & Gaus, 2019 ).…”

The impact of early stages of COVID-19 on the mental health of autistic adults in the United Kingdom: A longitudinal mixed-methods study

“…Third, disruption in access to services might have had a disproportionate effect on autistic people. Pre-pandemic, autistic people were more likely to need a range of healthcare services ( Foley et al, 2018 ; Vohra et al, 2016 ) and have trouble accessing these ( Mason et al, 2021 ; Nicolaidis et al, 2015 ; Vogan et al, 2017 ), compared with non-autistic people. Given the pressures placed on healthcare services during the pandemic, as well as the implementation of social distancing measures, the barriers to autistic peoples’ service access may have been further exacerbated.…”

“Autism is everyone’s business”: Autism knowledge and self-efficacy amongst NHS Scotland mental health professionals

“…For example, participants discussed the importance of listening to autistic people, communicating clearly and openly, providing flexibility, and considering adaptations to the sensory environment. Similar themes have been noted in interview studies with autistic people and healthcare professionals (26). However, others have highlighted that such reasonable adjustments are not typically available in reality, despite how important making adaptations might be for mental health care (27).…”