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Stewardson Gregory, Charlotte

University of British Columbia

Background: Challenges inherent to diagnosing autism in adulthood include limited validated measures, overlapping characteristics with other conditions, and limited information regarding client preferences and experiences. We aimed to generate consensus between expert clinicians and autistic adults around existing clinical practice guidelines (CPG) and co-develop statements for enhancing adult autism assessment. Methods: 35 autistic adults; 30 expert clinicians participated in a three-round Delphi survey. Participants rated an abbreviated version of National Institute for Health and Care Excellence (NICE) CPG for adult autism diagnosis on their importance, feasibility and acceptability. In Round 1, participants also answered open-ended questions regarding what is working well, missing and in need of improvement in current adult autism assessment. Open-ended responses were submitted to thematic analysis, themes from which were used to generate co-developed statements. In subsequent rounds, participants re-rated CPG (on all three metrics) and co-developed statements (agreement) after reviewing a summary of prior round ratings and comments to generate consensus. In Round 3, they also selected their top 5 co-developed statements. Results: By Round 3, only three of 23 CPG recommendations—discussing the purpose of assessment, assessing functioning across contexts, and assessing sensory sensitivities—reached consensus across groups on all presented metrics. Eleven additional CPGs reached consensus on importance, covering topics like trained and competent professionals, assessing core autism features, past and current mental health conditions and early developmental history. Clinicians reached consensus more often than autistic adults. Consensus on feasibility and acceptability of CPG was less common and generally decreased over rounds. Twenty-four of 31 co-developed statements reached consensus, highlighting priorities like clear communication and better access to diagnostic assessments. Across both CPG and co-developed statements consensus was elusive for informant involvement amongst autistic adults, and multidisciplinary evaluations amongst all participants. Implications: While several CPG recommendations received support, further research is needed to address feasibility and acceptability challenges in a North American context. Co-developed statements could enhance the relevance and practicality of adult autism assessments for both clinicians and autistic adults. Future work should empirically test these statements in clinical settings for further evaluation and refinement.

Text

2024-08-30

Attribution-NonCommercial-NoDerivatives 4.0 International

http://hdl.handle.net/2429/89127

Psychology

University of British Columbia

UBCV

http://creativecommons.org/licenses/by-nc-nd/4.0/