The A-Reps are a group of autistic people, parents and carers from across Europe who bring many different perspectives of living with autism. They were recruited in early 2019, following nearly 100 European applications. Recruitment attempted to account for a range of strengths, needs and difficulties of autistic people, factors such as gender, age, nationality and ethnicity, as well as life experience and interests. Selection was made with the support of an A-Reps steering committee.
A-Reps have been involved in a number of projects by shaping the design of research protocols and questionnaires and attending webinars to learn more about biomarkers and genetics. A small group of A-Reps with learning disabilities have provided feedback on the accessibility of a study looking at policy in the EU, and developed ideas for future educational activities for the consortium. Discussion with A-Reps at last year’s annual AIMS-2-TRIALS meeting has led to the creation of a new role to further coordinate ethics across the consortium. We are also excited to report that for the second AIMS-2-TRIALS clinical trial, five A-Reps have been invited to be a part of a group called the Trials Advisory Board, which will be deciding which medicine should be chosen for testing and advising on issues relating to the trial procedures.
We continue to encourage the consortium researchers to engage with A-Reps, and have recently gathered our learned so far into a guide for researchers, which will make the process more transparent and predictable.
Although it is still relatively early days, we asked the A-Reps about their understanding and expectations of their roles as A-Reps. Responses included acting as an advocate for autistic people’s rights and representing autistic people and/or carers; helping researchers understand the views of autistic people and what autistic people might want or need from research and interventions; generally helping to make the work more autism-friendly; improving outcomes for both autistic people and researchers; raising awareness of issues relating to autism and getting involved in communication of research findings; and monitoring and providing feedback on ethical issues.
The A-Reps expect to be giving researchers feedback on, for example surveys, documents for participants, research protocols, study design and interpretation of research findings. Some feel that they will be improving relationships between autistic people and researchers, building connections and networks, and addressing mistrust. There are also those who are keen to learn more about the science and research practice relating to autism, and some who want to review the differences experienced by autistic people across European countries and work towards a more unified approach, making a positive impact on autism policies.
We also asked whether experiences so far met their understanding and expectations. Of those who responded, almost 50% said yes, with 23% giving mixed feedback with both positives and negatives, and 31% giving a response that was useful in terms of details but couldn’t be classified as either positive or negative. We will continue to work with the A-Reps to make their participation in AIMS-2-TRIALS as useful and meaningful as possible.