Autism Representatives
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 Eliza Eaton, AIMS-2-TRIALS Participatory Research Coordinator, via arepscomms@medschl.cam.ac.uk.
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 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, and the University of Cambridge team has sought ways to address them, either by asking researchers to respond or by arranging meetings.
Leads
Co-lead:
James Cusack,
Autistica
Co-lead:
Simon Baron-Cohen,
University of Cambridge
Collaborator:
Aurélie Baranger,
Autism-Europe
Working groups
Based on input from A-Reps and researchers working groups have been set up around key topics. A working group usually includes a group of 4-9 A-Reps and researchers from the consortium and meets on a regular basis to work collaboratively and get input from A-Reps on different aspects of the project.
The current working groups input on the following subjects:
More information:
For more information about what A-Reps have been doing can be found can be found in our previous updates:
Steering committee
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.
Mary Doherty
Anjuli Ghosh
Giselle Pisani
