Participating in global discussion about autism research

Author: Heta Pukki, President of EUCAP

Over the past two months, I have engaged in discussions on the goals and directions of autism research with a number of EUCAP member organisations, as well as autistic-led organisations and individual autistic professionals and researchers, reaching out to other parts of the world. This has been an intense journey for many of us, repeating some of the sense of discovery we’ve had within Europe in the past few years, as we have become increasingly aware of the existence of autistic people’s organisations across the continent.

Through global discourse, we learn about groups, communities, studies and projects we never knew of. We learn about the extent of research and other work that has been conducted to improve our lives in ways that we can believe in. It is encouraging to see that we recognise many of each others’ concerns immediately even when we have developed our advocacy apart from each other, in different languages and in different cultural environments.

It has also been a frustrating process, because we have worked under time constraints, and we have been constantly aware of not having time to reach all those who could have provided significant contributions. The ones who have been included in our ad hoc committee, the Global Autistic Task Force on Autism Research, are only a fraction of those who could have participated, if we had the resources, and hopefully will in the future participate in growing global discourse.

Our open letter to the Lancet Committee on the future of care and clinical research in autism can be read on our websites across the world.