At Autistica, we fund research that enables autistic people to live longer, happier, healthier lives. Because you – our community – have told us your priorities, we don’t fund research into the causes of autism. Nor do we fund or support research that attempts to prevent autism or stops an autistic person from being their true self.

When projects that attempt to understand the genetics of autism come along, we ask ourselves whether or not it is right to be involved. We have always believed that it is better to be “on the inside” trying to influence projects and facilitate the inclusion of autistic voices. The aim is to make sure that ideas can be shared and concerns can be raised from the beginning and throughout. We see our role as making sure all opinions within the community are reflected. This is an emotive and divisive issue and it is clear that we haven't got the balance right.

The approach we took with the AIMS-2-TRIALS and the Spectrum 10k project was to try to increase the likelihood that this work can make a difference. We didn’t fund any of these studies. In AIMS-2-TRIALS, we provided a small amount of staff time to try to ensure that the project focused on community priorities. For Spectrum 10k, we provided them with a quote supporting what the study is trying to achieve. We’ve asked for that to be taken down.

Clearly, based on the recent responses, our current approach is not right. We have also heard feedback that shows there is still an important debate to be had about how research into the biology of autism could help achieve some goals. For example, understanding the genetic underpinning of anxiety could help find new ways to address it.

We have heard your concerns. We don’t have all of the answers right now, and I can’t promise they will come quickly. Given how sensitive and divisive these projects are, we should be at least taking a more considered stance. We recognise that even for projects like these that we’re not funding, we should be talking to a wider range of you before getting involved in them to bring in a broader range of views.

I am sorry that we have not taken the right approach on this. I want Autistica to do a better job of contributing constructively in future because I still feel that being involved in and amplifying autistic voices is an important part of all autism research. But I recognise the concern this has caused many of you and doing a better job means making sure we’re doing right by you, our community.

Everyone at Autistica is grateful for your support and we are all committed to doing better in future.