Understanding autistic communities need for substance use information: developing a pragmatic resource

Roberts, David Gwyn (2023) Understanding autistic communities need for substance use information: developing a pragmatic resource. Doctoral thesis (PhD), Manchester Metropolitan University.

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Abstract

Substance use and addiction are not typically first considered when discussing autism and the needs of autistic people. However, recent research has highlighted that autistic people do use substances and that they may be at an increased risk of developing substance-related problems compared to neurotypical people. Currently, there is very little to no support or information specifically tailored or targeted for autistic people, despite some motivations and presentations of substance-related problems being unique or highly specific to autistic communities (i.e., using substances for social camouflage). The current project aimed to address this by developing an online psychoeducational resource specifically tailored for and informed by autistic adults. The project was spilt into three stages, which adopted a pragmatic paradigm, was qualitative in nature and was analysed using summative qualitative content analysis and reflexive thematic analysis. The first stage encompassed the pre-development of the resource and consisted of an online structured interview, which sought to explore the preferences and needs for an educational resource on substance-related topics from autistic adults. The findings from this stage formed the basis for the second stage, which was the development of the resource itself. The final stage occurred post-development of the resource, which consisted of semi-structured interviews with autistic adults and parents of autistic people who provided feedback on the resource as well as discussions around their own experiences of substances. The resource developed was titled “Alcohol and Drug Information for Autistic Adults” (ADIFA: www.adifa.co.uk). This is currently, one of, if not, the only educational resource developed specifically for and informed by this community on substance-related topics. Autistic adults who participated in the project stated the importance of, and the need for, more pragmatic research to be undertaken in this area. Future directions for this project could be the quantitative evaluation of ADIFA for autistic adults and further research projects on substance-related issues in autistic communities, particularly employing participatory or co-production methodologies.