A hostile context, very limited intervention theory and almost no change in outcomes: findings from a systematic realist review of health passports for Autistic adults

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

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Ellis, R., Williams, K., Brown, A., Healer, E., & Grant, A. (2022). A hostile context, very limited intervention theory and almost no change in outcomes: findings from a systematic realist review of health passports for Autistic adults [Preprint]. openRxiv. https://doi.org/10.1101/2022.12.04.22283076

Journal or book title
medRxiv
Publisher
openRxiv
Publication date: 5 Dec 2022 Added to AutiHub: 5 Jul 2026 Type: Preprint Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
5
Publication authors identified as autistic
3 / 5 (60.0%)
  1. Rebecca Ellis *
  2. Kathryn Williams *
  3. Amy Brown
  4. Eleanor Healer
  5. Aimee Grant *

Abstract

Abstract Background Autism is a normal part of cognitive diversity, resulting in communication and sensory processing differences, which can become disabling in a neurotypical world. Autistic people have an increased likelihood of physical and mental co-occurring conditions and die earlier than neurotypical peers. Inaccessible healthcare may contribute to this. Autism Health Passports (AHPs) are paper-based or digital tools which can be used to describe healthcare accessibility needs; they are recommended in UK clinical guidance. However, questions remained as to the theoretical underpinnings and effectiveness of AHPs. Methods We undertook a systematic literature search identifying studies focused on AHPs for adults (aged over 16 years) from five databases. Included literature was subjected to realist evaluation. Data were extracted using a standardised form, developed by the research team, which considered research design, study quality for realist review and the C ontext, M echanisms and O utcomes ( CMOs ) associated with each AHP tool. Findings 162 unique records were identified, and 13 items were included in the review. Only one item was considered high quality. Contextual factors focused on the inaccessibility of healthcare to Autistic patients and staff lack of confidence and training in supporting Autistic needs. I nterventions were heterogeneous, with most sources reporting few details as to how they had been developed. The most frequently included contents were communication preferences. M echanisms were often not stated or were inferred by the reviewers and lacked specificity. O utcomes were included in four studies and were primarily focused on AHP uptake, rather than O utcomes which measured impact. Conclusion There is insufficient evidence to conclude that AHPs reduce the health inequalities experienced by Autistic people. Using an AHP tool alone, without the inclusion of the local Autistic community developing the tool, and a wider intervention, such as training for staff or the use of local champions, may mean that AHPs do not trigger any M echanisms, and thus cannot affect O utcomes.

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: 2 Oct 2026 07:52.

Cited references
67
With a DOI
49
Without a DOI, from raw bibliography text
18
5 / 67 (7.5%) cited references include at least one author identified as autistic.
References with data to complete
17 / 67 (25.4%)
References with detected author names
50 / 67 (74.6%)
Without detected author names
17
Without a structured title
16
Without a stable identifier
17
References with raw author names still to review
15
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
256
From DOI or external metadata
256
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
16
63 / 256 (24.6%) names are linked to an author already present in AutiHub. 193 / 256 (75.4%) names are not yet linked.
Names linked to a person identified as autistic
15 / 256 (5.9%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 15 / 63 (23.8%). Distinct people identified as autistic: 11 / 236 (4.7%).
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