A group to involve the perspectives of autistic people and their families
At the beginning of the AIMS-2-TRIALS project, Autistica (AIMS-2-TRIALS partner and UK-based autism research charity) identified a small group of interested autistic people and carers who agreed to act as a Steering Committee. This group gave early feedback on the AIMS-2-TRIALS website and worked to recruit the rest of the A-Reps. Nearly 100 European applications were reviewed by the Steering Committee, who attempted to form a group that was representative of the varying strengths, needs and difficulties of autistic people, demographic factors such as gender, age, nationality and ethnicity, life experience and interests. 41 A-Reps accepted our invitation to take part.
The A-Reps group is co-ordinated by a team at the Autism Research Centre, University of Cambridge, along with Autistica and Autism Europe. For more information or if you have questions, contact Beth Jennings, AIMS-2-TRIALS Participatory Research Coordinator, via email@example.com.
What exactly do A-Reps do?
AIMS-2-TRIALS is likely the first large-scale consortium to invite a group of autistic people and carers to get involved across the entire project. This means that there was no roadmap to follow; no clear ‘right way’ to do it. The facilitating team at the University of Cambridge has been guided by what the A-Reps say they would like to engage in. Based on this feedback and requests from researchers, working groups have been set up around key topics such as ethics, biomarker discovery and medication development. These groups position A-Reps in meetings right alongside decision-makers including Prof. Declan Murphy (Project Coordinator), Dr Eva Loth (Work Package 2 Co-Lead), Prof. Emily Jones (Ethics Work Package Lead), as well early career researchers and representatives of other consortium partners such as Roche.
Again, because this is the first time that such a large consortium has attempted engagement with a group of autistic people in this way, it has taken some time to develop processes to connect the A-Reps and researchers, and procedures for reflecting on the extent to which the A-Reps feel listened to and were able to have an impact. However, right from the group’s formation, A-Reps have been able to ask questions about any of the projects or themes encompassed by AIMS-2-TRIALS, either by email or via a dedicated Slack platform, and the University of Cambridge team has sought ways to address them, either by asking researchers to respond or by arranging meetings. One ongoing challenge is ensuring that as many A-Reps as possible are involved in activities, and this is an issue that the A-Reps Steering Committee will continue to work on, potentially recruiting more A-Reps now that the scope of the role has become clearer.
The current working groups input on the following subjects:
- Ethics (and data sharing)
- Medicines/ drugs (Trials Advisory Board)
- An art & science exhibition
- Culture shift
- Intellectual disability and autism
- Rare genetic conditions associated with autism
Ethics Working Group
Discussion with A-Reps during the first AIMS-2-TRIALS General Assembly led to acknowledgement of a need for a paid post dedicated to coordinating ethics across the whole consortium. As a result, an entirely new post was created, its job description significantly improved via ongoing consultation with A-Reps, and its funding sourced from contributions from budgets across the consortium. The role is being advertised at the time of writing (February 2021).
Professor Emily Jones, Birkbeck University, said “Through working with A-Reps within the Biomarker and Ethics Working Groups, I have gained new perspectives on autism research. Conversations with the A-Reps have influenced our research directions, for example leading us to initiate a new line of research on the meaningfulness for autistic people of common outcome measures. The experience has also allowed me to reflect on the broader context of our research programme, and how the ways in which it is both communicated and conducted intersect with the views and wishes of autistic people.”
Medicines Working Group (Trials Advisory Board)
The working group to decide a medicine for the second AIMS-2-TRIALS clinical trial included members of the A-Reps group alongside researchers. Through this, A-Reps were able to influence the decision made and vote along with researchers.
Lead researcher Celso Arango said “I am really proud of the way we have included autistic people in the decision-making process to select a compound to the next clinical trial. A-Reps had an equal vote in this process, with each of their votes counting the same as a researcher or industry partner on the Trials Advisory Board.”
More info about what A-Reps have been doing with AIMS-2-TRIALS can be found in a news update published on March 18th 2021.
Watch this page for further updates over the course of the project.
University of Cambridge
Although the A-Reps have now been appointed, there are still opportunities for those living in Europe to provide input in a range of areas with the project. These may include providing consultation on specific AIMS-2-TRIALS projects as well as participating in research.
To be contacted by email when these opportunities arise, or just to track our progress, sign up to our Participation Opportunities mailing list. There is also an option to sign up to our Annual public newsletter, should you wish to receive updates on the AIMS-2-TRIALS project.
The committee supports the recruitment of A-Reps and guides the activities of the group. This committee includes people with lived experience of autism, either through personal experience, or as family members. Many members have experience of self-advocacy and/or working with autism charities.