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

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

Publication date: 5 Dec 2022 Added to AutiHub: 5 Jul 2026 Type: Preprint Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
5
Publication authors identified as autistic
3 / 5 (60.0%)

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.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
67
Total cited references integrated for this publication.
Cited references with an identified autistic author
3 / 67 (4.5%)
Cited author occurrences identified as autistic
9 / 256 (3.5%)
Among occurrences linked to AutiHub author records: 9 / 57 (15.8%). Distinct cited authors identified as autistic: 6 / 236 (2.5%).
Cited author occurrences linked to AutiHub author records
57 / 256 (22.3%)
Distinct linked cited authors: 41 / 236 (17.4%)
Linked cited-author occurrences not identified as autistic
48 / 57 (84.2%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 48 / 256 (18.8%). Distinct linked cited authors not identified as autistic: 35 / 41 (85.4%).
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