Researchers at the Autism Research Centre have launched an ambitious new project, Spectrum 10K, which will involve 10,000 autistic people, and their families, in the UK.
The study is being run by researchers at ARC (University of Cambridge), the Wellcome Sanger Institute and the University of California, and bids to take a detailed look at how biological and environmental factors impact the wellbeing of autistic people.
There are around 70,000 autistic people in the UK, requiring varying levels of support, with the study keen to explore how different support schemes work for different individuals.
The study is still in the process of recruiting volunteers to take part, with those interested able to sign up here.
“There is an urgent need to better understand the wellbeing of autistic individuals," said Professor Simon Baron-Cohen, director at ARC.
"Spectrum 10K hopes to answer questions such as why some autistic people have epilepsy or poor mental health outcomes and others do not.”
Cheryl Simpson is the CEO of independent Cheshire-based charity Space4Autism, which provides clubs, activities and services for children, young people and adults with autism spectrum condition and their families.
She is also the mother of two young men in their 20's with autism, and welcomed the new study, something she said had been "a long time coming".
"Space4Autism was absolutely delighted to read that Cambridge University is launching the largest ever study of Autism in the UK," she told the Leaders Council.
"It has been a long time coming and we hope that Space4Autism can feed into the study in some way – we are encouraging our members to participate. This is a large and well-planned research project with significant backing within academia.
"It’s the largest study to be conducted in the UK and will answer some important questions about autism."
Simpson founded Space4Autism back in 2005 as more of a support group, but it has grown rapidly since, now employing around 30 members of staff.
"Space4Autism supports
families affected by autism as broadly as possible, but it depends on
charitable donations to run. With the evidence available from a large survey
like this, the need will be clear and the government and local authorities will
be required to fund the proper support. That support is already a legal
obligation but it is woefully underfunded as the need is not well defined."
"The survey will allow the national government and local authorities to plan their support on real data which should lead to the full provision of support for our members in diagnosis, education, social welfare, health, and employment," she added.
"In each area, people with autism can find it difficult to navigate the access paths and can find it difficult to engage without some help. The survey will gather information on what types of support people with autism receive and need, which in turn allows providers to support them."
