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

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Mason, D., Ingham, B., Birtles, H., Michael, C., Scarlett, C., James, I. A., Brown, T., Woodbury-Smith, M., Wilson, C., Finch, T., & Parr, J. R. (2021). How to improve healthcare for autistic people: A qualitative study of the views of autistic people and clinicians. Autism, 25(3), 774-785. https://doi.org/10.1177/1362361321993709

Publication date: 1 Apr 2021 Added to AutiHub: 9 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
11
Publication authors identified as autistic
1 / 11 (9.1%)
  1. David Mason
  2. Barry Ingham
  3. Heather Birtles
  4. Cos Michael *
  1. Clare Scarlett
  2. Ian A James
  3. Toni Brown
  4. Marc Woodbury-Smith
  1. Colin Wilson
  2. Tracy Finch
  3. Jeremy R Parr

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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 07:09.

Cited references
40
With a DOI
37
Without a DOI, from raw bibliography text
3
4 / 40 (10.0%) cited references include at least one author identified as autistic.
References with data to complete
1 / 40 (2.5%)
References with detected author names
39 / 40 (97.5%)
Without detected author names
1
Without a structured title
1
Without a stable identifier
2
References with raw author names still to review
1
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
166
From DOI or external metadata
166
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
7
86 / 166 (51.8%) names are linked to an author already present in AutiHub. 80 / 166 (48.2%) names are not yet linked.
Names linked to a person identified as autistic
13 / 166 (7.8%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 13 / 86 (15.1%). Distinct people identified as autistic: 6 / 138 (4.3%).
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