Including Autistic People and Relatives in Planning, Designing and Undertaking Longitudinal Research: An Evolution from Consultation and Advice to Participatory Research

Background: Little guidance exists regarding ways for autistic people and researchers to work together effectively. During the first years of the Autism Spectrum Cohort-UK (ASC-UK) longitudinal cohort project, and the broader Autism Lifecourse and Ageing research programme, we worked with autistic adults in various ways.

Objectives: 1. To disseminate information about how a stakeholder-informed research approach moved toward participatory research in a longitudinal cohort study and research programme; 2. Show how this process benefitted researchers and autistic people – and what might have been done differently.

Methods: The participatory research approach evolved over 5 years. Initially around 50 autistic adults and relatives advised on their research priorities, and project methods and materials. From 2014, autistic people and relatives were consulted and advised on the research process. The team then moved toward an approach where autistic people and relatives were part of the research team, and named on funding applications. Later discussions focussed on the positive experiences, and the limitations of people’s roles, and how in retrospect autistic people might have been involved differently from the outset. This informed the next phase participatory research regarding ASC-UK, and associated projects.

Results: Consultation before and during initial research phases: Initial involvement of autistic people involved three autistic adults attending a research prioritisation meeting, being paid as research advisors, and a relative being recruited to the research team. A broader group of autistic people and relatives (30 people) attended separate larger consultation meetings about methods and materials. Autistic people supported the research team to develop appropriate strategies for before, during and after meetings. For example, telephone conferences were discounted, and meetings were face-to-face. Materials were sent well before the meeting, with clear topics for discussion on an agenda that was not altered subsequently. Opportunities to make the environment appropriate were an additional focus (e.g., discussion about the room to be used, accepting low natural light surroundings). A ‘model’ of how to conduct meetings with autistic advisors, and those attending consultation groups was created so each type of meeting was undertaken similarly. Payments for autistic advisors time were agreed; the research team arranged and funded travel and accommodation.

Moving from consultation and advice to participatory research: During the research, as new projects commenced, the research team and autistic people discussed opportunities for them to be research collaborators and co-applicants. Other autistic people joined project-based research groups, and became part of community-based participatory research. Autistic people gained a greater understanding of the different research roles and responsibilities (for example, consultant, advisor, collaborator, and co-investigator). The importance of a ‘menu’ of roles for people working with the research team was discussed. Most recently, research workshops including autistic people, relatives and researchers led to refinement of community research priorities.

Conclusions: Autistic people and researchers initially used an advisory model, and through shared mutual respect, evolved into an effective participatory research team; the journey continues, and new ways of working together will continue to be identified. This approach has resulted in effective research with significant impact.