In February 2020, when the world was a very different place and I was still Autistica’s director of science, I was invited down to London to join a Lancet Commission on 'the future of care and clinical research in autism.'

Lancet Commissions bring together international groups of experts to help identify the most urgent issues in their field. Together we discussed a number of topics, but the main thrust of the report from the Autism Commission – which was released today – reflects Autistica's own feelings about the state of care and support for autistic people.

We know that too many autistic people are abandoned after diagnosis with zero effective support and it is saddening to hear that the UK is far from the only place these inequalities exist. The proposals in the report mirror our own Autistica Support Plan that we published last month. The Plan was praised in parliament by both senior MPs and the minister for health and social care for its long-term, pragmatic view on care and support.

The Commission’s report proposes a stepped care approach, meaning that support is tailored and adapted to autistic people’s individual needs and recognises that these needs will change throughout their lives. It’s a vision we’re fully behind.

As the UK’s leading autism research charity, it was also significant to see our views on research reflected by the Commission. We have long placed our emphasis on practical research that can affect the lives of autistic people in the short term over basic science looking at the genetics underpinning autism.

Echoing our own view, the report says that practical research is vital to understanding “what interventions and supports are effective for whom and when, and which interventions lead to changes beyond their proximal outcomes.”

International collaborations like this Commission are vital to understanding the global picture of autism, but they do also present challenges. If you read the whole report you’ll notice that it contains some language and views that don’t necessarily reflect the way we talk or the way we think about autism either as an organisation or personally. That's an inevitable part of these kind of collaborations, where we need to find a compromise that reflects the different views, languages and experiences among people across the world.

It is encouraging to see the international scientific accord heading in a more positive and pragmatic direction. That progress is only possible when we work with people who have different perspectives to find consensus. That’s why it's crucial for us here at Autistica to be in the room and to participate in conversations like these.

The Lancet Commission’s report is a positive step in developing understanding across the world, it also acts as a reminder that experiences of autistic people in marginalised communities have been overlooked for too long.

We are under no illusions that change will be easy and we’re in this for the long haul. We will continue funding research and campaigning for change. As the report itself states:

“Change will depend on investment in science focused on practical, clinical issues and social and service systems that
acknowledge the potential for change and growth, as well as the varied, complex needs of autistic [people].”