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 life-course. Guidance about undertaking research with autistic adults and relatives is scarce. In setting up the Autism Spectrum Cohort-UK (ASC-UK), we learned many things about how to undertake longitudinal research with adults and relatives – this presentation aims to disseminate that learning, so other groups might benefit and set up successful research partnerships.

Objectives: 1. To disseminate information about a stakeholder-informed research approach for the meaningful engagement of autistic adults, and relatives, in a cohort study; 2. Show how this process has led to excellent recruitment into the cohort, and some early findings.

Methods: Between 2013-4, a series of consultations with around 50 autistic adults and relatives was held over a two year period; ‘learning points’ were extracted from notes of those meetings. From 2015, adults and relatives were recruited to ASC-UK from a network of over 100 UK National Health Service, Voluntary sector and autism community organisations. As part of mixed methods research, data were collected from all participants using a baseline questionnaire, plus the SRS and the WHOQoL-BREF. Interviews with 30 autistic adults were completed by one researcher, transcribed and coded.

Results: Preparation for research: 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. The following were amongst the recommendations suggested for direct working: Use alternative ways to exchange information (e.g. text messages, emails, face-to-face discussions); give extra time in discussions and interviews for information processing; use visual materials; consider the sensory impact of interview venues. Recruitment progress and initial study findings: After 20 months recruitment, 990 autistic adults and relatives joined the cohorts (including 750 autistic adults, 50 of whom lacked capacity to consent for themselves); 50 adults per month joined in 2016. For the autistic adult cohort, men and women participated in equal numbers; median age was 39 years, range 17-86 years; 25% aged >55 years. Adults on the autism spectrum reported about their current mental health (depression in 47%, anxiety in 50%), and access to services – fewer than half had received the services they needed. Qualitative interviews revealed many themes that people thought important about the quality of their lives including: the importance of routines, the impact of supportive and non-supportive relationships, how a diagnosis led to people making sense of their lives, learning how to act to fit in with others, missed opportunities and achievements, managing responses to others.

Conclusions: Our findings emphasise the importance of utilising the expertise of autistic adults and relatives within the research team. This has led to effectiveness in involving, recruiting and engaging people to participate in the cohort study. In turn that has led to effective research providing detailed data about the quality of the lives of adults on the autism spectrum, and their relatives.