Engaging with Adults on the Autism Spectrum and Their Relatives about Effective Longitudinal Cohort Research

Background:  

We know very little about how autism is experienced in adulthood or its impact on the lives of individuals across the lifecourse.  Although it has long been acknowledged that research with specific communities is important (Dickson-Swift, et al. 2008) there has been little guidance available on how best to undertake research with autistic adults and their relatives. 

Objectives:  

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

Methods:  

A series of consultation meetings including autistic adults and family members was held over a 2 year period, prior to and during the initial stages of setting up a longitudinal cohort study (http://research.ncl.ac.uk/adultautismspectrum/).  Around 50 individuals from the autism community contributed.  Detailed notes were made at each of eight meetings that lasted between 2 hours and 1 day. All ‘learning points’ were extracted from multiple sets of notes by an experienced qualitative researcher, and mapped across four general themes.

Results:  

Engaging adults with autism in cohort research

Recommendations included having autistic adults as paid researchers/advisors within the team, and identifying some of the range of challenges and needs of individuals so as to develop ‘user-friendly’ research processes.  The need to gather information from a range of individuals, e.g. adults who are, and are not in contact with services; parents, siblings, partners, carers and others was identified. Ways of including individuals with intellectual impairment were suggested.

Quantitative research methods and materials

A range of ways to invite people to engage with a cohort study were discussed, e.g. mailshots, email, flyers, posters, online forums.  Cohort questionnaire development focused on font size, spacing, and using plain text in materials, in addition to specific research question wording. The importance of individual variation in the time taken to complete questionnaires was identified.  A key point was making the utility of the research for adults clear, and sending regular updates with snapshots of findings.

Qualitative research

Recommendations focussed on flexibility and respect as the key factors in approaching people and asking questions.  Some key areas were: allowing different ways to exchange information (for example text messages, emails or face to face discussions); setting aside extra time in discussions and interviews for information processing; exploring the use of visual materials for questions and responses; and not making assumptions that adults cannot do things but instead finding ways to support them in overcoming challenges.

Getting the environment right

The size and sensory impact of any meeting venue should be considered, to reduce overload from environmental stimuli.  Interviews should be conducted where people are most comfortable. Payment for participation in interviews, in addition to reimbursement of travel costs, is appropriate.

Conclusions:  

Our findings emphasise the need to utilise the skills and expertise of autistic adults and family members as part of the research team. We consider this has led to our research being more effective in involving, recruiting, engaging and encouraging adults on the autistic spectrum and their relatives to participate in the cohort study.