Transforming autism research and the quality of life for all autistic people

by Professor Simon Baron-Cohen FBA FMedSci
Director, Autism Research Centre, Cambridge University

When I came to Cambridge 25 years ago as a young Lecturer, there was no autism research. Today there is a thriving Autism Research Centre in Cambridge, producing world-class autism research across a range of disciplines, from genetics and neuroscience, through to psychology, policy and clinical research.

But when I look around at the autism clinical services both locally and more widely across the UK, I do not see world-class services.

Instead, I see clinicians struggling with very limited budgets, and autistic people and their families sitting on waiting lists, just to secure a diagnosis for themselves or their child.

And even if they are lucky enough to get a diagnosis, I see autistic people and their families getting very little support – sometimes none at all. 

What I find unacceptable is autistic people being let down by society, in a way that we would not tolerate for other medical conditions or disabilities.

In Cambridge, the waiting list in the adult clinical service for autism diagnosis is over two years long, with many people feeling suicidal whilst waiting to be seen. And teenagers with suspected autism are not seen for a diagnosis at all, unless they have started to develop serious poor mental health.

The services are so stretched they don’t have the resources to see anyone until they are in crisis point. Certainly not a system designed to prevent poor mental health.

And when I talk to my colleagues around the country, they tell me things are just as bad elsewhere.

So, now I want now to do three things.

First, I want to expand on what we have built in terms of autism research, to ensure that Cambridge remains known as a centre of excellence for autism research for the long term.  This means Professorships with well-resourced research teams, making pioneering, cutting edge discoveries in basic and applied autism research.

Second, I want to bring in substantial philanthropy to transform clinical services for autism, to achieve excellence in clinical support too. In particular, I want to see a seamless clinical pathway, for toddlers, children, teenagers, and adults, getting a timely diagnosis – within weeks, not months or years – and receiving quality support at any point in their lives, when they need it.  This should include seamless transitions so people don’t fall off a cliff when they are too old for child and adolescent services and it should include support to find a job, to promote inclusion in society, which promotes good mental health.

And finally, I want to bring these two themes together: ensuring the autism clinical services are closely integrated with autism research, so that each feeds the other. Clinical and lived experience should inspire researchers, and research should lead to novel interventions which themselves need to be evaluated. 

This will be the first national clinical and research centre for autistic people in the UK and will transform autism research and the quality of life for all autistic people, across the breadth of the autism spectrum.

And we will work closely with autistic people and their families so that they can shape the direction of the centre, ensuring it meets their needs and priorities.

But I can’t fulfil my vision alone.

I am extremely grateful to our outstanding charity the Autism Research Trust who are driving forward this idea, but ultimately it can’t happen without your support.

Please help me to build the Cambridge Autism Centre of Excellence. This is our opportunity to change the world for autistic people – and it can start in Cambridge.

Please get in touch with me if you’d like to make a donation, or contact our wonderful team at the charity.

Thank you.

Professor Simon Baron-Cohen, FBA, FMedSci

Director, Autism Research Centre, Cambridge University
Fellow, Trinity College, Cambridge
Past-President, International Society for Autism Research
Consultant Psychologist, Cambridgeshire and Peterborough NHS Trust
Vice-President, the National Autistic Society

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