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Lookup NU author(s): Dr Sarah WighamORCiD, Dr Patrick Welsh, Dr Barry Ingham, Colin Wilson, Rhianna Lees, Olivia McConnell, Dr Adriana Nedyalkova, Professor Ann Le Couteur, Professor Jeremy Parr
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
Copyright 2024, Mary Ann Liebert, Inc., publishers. Background: Research highlights that access to support services after a diagnosis of autism in adulthood is limited, but few studies have investigated possible solutions to this problem. We explored the experiences of survey respondents receiving or providing an autism diagnosis in adulthood, identified support, and examined characteristics of valued or desired support, in the context of limited-service provision. Methods: We surveyed autistic adults, relatives, and clinicians about experiences of UK adult post-autism diagnosis support and services within 12 months following diagnostic assessment. We used thematic analysis with a hybrid deductive/inductive approach; we defined broad a priori themes and triangulated respondents’ perspectives and views. Results: In total, 343 autistic adults, 45 relatives, and 35 clinicians completed parallel surveys. We defined four superordinate themes: (1) using networks post-diagnosis to make changes, (2) characteristics of effective and acceptable support solutions, (3) making autism support better informed, and (4) ways of addressing perceived gaps in support services. Conclusions: We have described examples of support leading to positive change and constructive recommendations that can guide and inform quality improvement activities by (1) those commissioning and providing adult post-autism diagnosis support and (2) professionals evaluating provision, to enhance evidence-based post-diagnostic support services.
Author(s): Wigham S, Welsh P, Ingham B, Wilson C, Fisher-Rogers A, Lees R, McConnell O, Nedyalkova A, Nicholson L, Le Couteur A, Parr JR
Publication type: Article
Publication status: Published
Journal: Autism in Adulthood
Year: 2024
Pages: Epub ahead of print
Online publication date: 04/12/2024
Acceptance date: 16/10/2024
Date deposited: 07/11/2024
ISSN (print): 2573-9581
ISSN (electronic): 2573-959X
Publisher: Mary Ann Liebert Inc.
URL: https://doi.org/10.1089/aut.2023.0079
DOI: 10.1089/aut.2023.0079
ePrints DOI: 10.57711/c3vq-4w96
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