Successfully engaging with adults on the autism spectrum and their relatives about longitudinal cohort research

Background Little is known about how autism is experienced in adulthood or its impact across the lifecourse. Guidance about undertaking research with autistic adults and relatives is scarce. Objective To develop a... [ view full abstract ]

Background
Little is known about how autism is experienced in adulthood or its impact across the lifecourse. Guidance about undertaking research with autistic adults and relatives is scarce.

Objective
To develop a stakeholder-informed research approach for the meaningful engagement of autistic adults, and relatives, in a cohort study.

Methodology
A series of consultations with around 50 autistic adults and relatives was held over a two year period and ‘learning points’ were extracted from notes. Free text comments from 263 completed cohort questionnaires (241 adults, representatives of 3 adults lacking capacity to respond themselves, 46 relatives) were coded and analysed thematically.

Results
Recommendations included having autistic adults as paid researchers/advisors, and the development of ‘user-friendly’ research processes. Ways to include individuals with intellectual impairment were suggested.

Questionnaire development focused on font size, spacing, and using plain text. A key point was emphasising the utility of the research for adults. Most respondents found the questionnaires clear and relevant; many expressed a desire to discuss in more depth.

Alternative ways to exchange information (e.g. text messages, emails or face-to-face discussions); extra time in discussions and interviews for information processing; and exploring the use of visual materials were suggested. The sensory impact of interview venues should be considered.

Conclusions
Our findings emphasise the importance of utilising the skills and expertise of autistic adults and relatives within the research team. This has led to effectiveness in involving, recruiting and engaging autistic adults and their relatives to participate in the cohort study.