Thank you to Panda, Dinah and Kabie for their post and to Damian for the opportunity to post here. It’s really good to have a nuanced discussion about Autistica’s involvement in AIMS-2-TRIALS. We are taking on board a variety of views, some critical, some undecided and some very supportive. All of these views are valid and will inform how we move forward.
Our decision to take part in AIMS-2-TRIALS was difficult and in some ways imperfect but one we believe was right having weighed up both options. We have more on our position on this at our website.
How do personalised therapies relate to our research strategy?
Personalisation is key if we want to deliver a future which works for all autistic people. In our research strategy we discuss moving beyond understanding autism and instead understanding every autistic person.
“We want research that attempts to understand autistic people in a more personalised way. We will identify which approaches work and address the needs of each person, as well as exploring the crucial components of effective interventions.”
For example, our community priority question 4: “Which interventions reduce anxiety in autistic people?” could benefit from being able to know which sorts of anxiety interventions work for different people – a personalised approach could assist with that. Biomarkers could also help us predict the onset of seizures – something which was clearly a priority at an event on autism and epilepsy we recently held. These are two of many examples which outline how a personalised approach could be critical if we are to meet the needs of all autistic people.
How can we get better at involving autistic people in decision making?
While we believe that our decision to participate in AIMS-2-TRIALS was in line with many aspects of our published research strategy, it has made us reflect on how we can become better at involving autistic people and family members in key strategic decisions, as part of our commitment to continuous improvement.
In May, our senior management team and Board agreed that our governance should change to ensure that strategic decisions around partnerships should involve the community even if they are confidential. We are developing guidance on this at the moment. Likewise it is important to us that autistic people are represented on our Board. In February, we launched our apprentice board member scheme which supports autistic people to join our Board – two autistic adults joined our Board in August through this scheme.
In the three years since I joined Autistica, we have seen a lot of change and there is commitment from our team and the board to go further. These changes take time and are not always easy to deliver, and so I hope you can work with us as we change.
How are we representing autistic people in the AIMS-2-TRIALS project?
We want to do our best to ensure that autistic people and family members are heard in this project. We believe it is important these autistic people and family members work together and we have seen powerful examples of this, particularly through our top ten questions for autism research exercise.
We will convene an independent committee including autistic people and family members to help us select a larger panel of 50-60 people which accurately represents the autistic and autism communities across Europe. The panel will help to advise on individual projects within the consortium and act as an independent voice. The panel will also support the development training (for research and autistic people, policy and clinical recommendation and help to ensure there is appropriate communication and dissemination).
I have been talking with autistic advocates and groups from across Europe to consider how best we go about this with the resource we have. We are still at the early stages but will be in a position to share details in the next few weeks.
What can happen next?
I passionately believe that research can deliver a better future for all autistic people. Doing that involves engaging with difficult issues, different people with different needs or priorities and having nuanced discussions. I hope that the panel can allow every voice to be heard and achieve the aims stated above to improve the lives of autistic people.
Dr James Cusack.
Director of Science, Autistica