Autistic experiences of breast cancer: an interpretative phenomenological analysis

This publication is included in the Autistic Autism Scholarship Project. four authors of this publication are identified as autistic in the project.

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Goodwin, C., Shaw, S. C. K., Turner, E. J., Russell, G., Doherty, M., & Barreto, M. (2026). Autistic experiences of breast cancer: an interpretative phenomenological analysis. Psychology & Health, 1-26. https://doi.org/10.1080/08870446.2026.2716038

Publication date: 20 Aug 2026 Added to AutiHub: 21 Aug 2026 Type: Article Article language: English
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Authors

Publication authors
6
Publication authors identified as autistic
4 / 6 (66.7%)
  1. Char Goodwin *
  2. Sebastian C. K. Shaw *
  3. Eleanor Jane Turner *
  1. Ginny Russell
  2. Mary Doherty *
  3. Manuela Barreto

Abstract

Barriers to healthcare exist for autistic people but are under explored in relation to cancer care. Previous research into autistic experiences have focused on other people's (healthcare professional (HCP) or family members) perspectives but there is a lack of research into autistic experiences of cancer care. This qualitative study used interpretative phenomenological analysis to explore autistic experiences of breast cancer based on interview data from ten participants. Four themes are discussed in this paper, 1) interactions with HCPs, 2) overwhelming hospital processes, 3) understanding autism: self and HCPs perceptions, and 4) long-lasting impact of a breast cancer diagnosis. Findings suggest that autism-specific barriers to cancer care exist and comprise three domains, firstly that the barriers are attributed to autistic characteristics and experiences, secondly that they are persistent throughout cancer care and finally, that there is a cumulative exposure to repeated barriers. These findings provide insight to HCPs that without acknowledgement and understanding of barriers to cancer care, reducing and removing them will not be possible. There needs to be more research looking at cancer care from the autistic person’s point of view. Autistic people already experience barriers to accessing healthcare, but we do not yet know about cancer care. Cancer care refers to support for a patient’s well-being as well as the treatment of cancer and any side effects. In autism related healthcare research, we hear about healthcare professionals, family members or carers point of view on how an autistic person experiences cancer care. This study explored what it is like to have breast cancer by asking autistic people. We did this by interviewing ten participants about their experiences of breast cancer. Four key areas are discussed in this paper, 1) interactions with healthcare professionals, 2) how hospital processes can be overwhelming, 3) understanding autism both from the participant’s point of view as well as the healthcare professionals, and 4) the long-last effect of a breast cancer diagnosis. The findings showed that the participants did experience barriers to cancer care that involve three parts, firstly that the barriers can be linked to autistic ways of being and experiences, secondly that they occur throughout cancer care, and finally that the barriers happen over and over again. These findings help healthcare professionals to understand that barriers exist in cancer care for autistic people and without understanding this, it will not be possible to reduce or remove the barriers.

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: 23 Oct 2026 07:41.

Cited references
45
With a DOI
40
Without a DOI, from raw bibliography text
5
19 / 45 (42.2%) cited references include at least one author identified as autistic.
References with data to complete
3 / 45 (6.7%)
References with detected author names
42 / 45 (93.3%)
Without detected author names
3
Without a structured title
3
Without a stable identifier
5
References with raw author names still to review
0
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
228
From DOI or external metadata
228
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
8
152 / 228 (66.7%) names are linked to an author already present in AutiHub. 76 / 228 (33.3%) names are not yet linked.
Names linked to a person identified as autistic
56 / 228 (24.6%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 56 / 152 (36.8%). Distinct people identified as autistic: 38 / 184 (20.7%).
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