City Research Online

Abstract

Obtaining a late Autism diagnosis and post-diagnostic supports can be a long, complicated process. Prior research has explored the perspectives of those with lived experience, family members, and clinicians, but has not yet provided a comparison of their perspectives. This review integrates qualitative and quantitative literature on barriers to diagnosis and post-diagnostic supports from these three perspectives. We also examine barriers reported by gender-diverse and ethnic minority Autistic people. We searched Web of Science, PsycINFO, Embase, Medline, and ProQuest Dissertations & Theses. Study quality was evaluated using Joanna Briggs tools and the Delphi Critical Appraisal Tool. We followed mixed-methods integrative methodology and thematic synthesis approaches to synthesise findings, and GRADE-CERQual to assess confidence in the evidence generated. We included 50 studies on 4487 adult-diagnosed participants, 902 self-identifying participants, 217 family members, and 198 clinicians. Ethnicity and gender identity were scarcely reported. Three analytical themes emerged: recognition and decision-making; negotiation at the interface; and resistance and resolutions. Tensions between stakeholders were seen in several areas, including conflicting views on access to information, diagnostic tools, self-identification, and challenges posed by co-occurring mental health conditions. The GRADE-CERQual appraisal showed moderate-to-high confidence in the findings. Barriers were compounded for gender-diverse and ethnic minority participants. Differences in how barriers (e.g., perceptions of diagnostic practices) are interpreted by stakeholders may themselves hinder access to services. We outline research and clinical implications, including transparent demographic reporting and improved access to information about services.

Publication Type:	Article
Additional Information:	This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.
Publisher Keywords:	Autism, Diagnosis, Post-diagnostic supports, Adulthood, Misdiagnosis, Lived experience
Subjects:	R Medicine > RC Internal medicine > RC0321 Neuroscience. Biological psychiatry. Neuropsychiatry
Departments:	School of Health & Medical Sciences School of Health & Medical Sciences > Department of Population Health & Policy
SWORD Depositor:	Symplectic Administrator

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