An ambitious new research project, Spectrum 10K, launches today and will recruit 10,000 autistic individuals, as well as their relatives, living in the UK.
There is an urgent need to better understand the wellbeing of autistic individuals. Spectrum 10K hopes to answer questions such as why some autistic people have epilepsy or poor mental health outcomes and others do not
Simon Baron-Cohen
Spectrum 10K is led by researchers at the world-leading Autism Research Centre (ARC), the University of Cambridge, together with the Wellcome Sanger Institute and University of California Los Angeles (UCLA) and will study how biological and environmental factors impact on the wellbeing of autistic individuals.
In the UK, there are approximately 700,000 autistic individuals. The level of support needed by autistic individuals varies considerably. Many autistic people have additional physical health conditions such as epilepsy, or mental health conditions such as anxiety or depression.
It is unclear what gives rise to the diversity within the autism spectrum or why some autistic people have better outcomes than others. The project aims to answer this question and to identify what support works best for each individual.
Professor Simon Baron-Cohen, leading Spectrum 10K and Director of the ARC, explained: “There is an urgent need to better understand the wellbeing of autistic individuals. Spectrum 10K hopes to answer questions such as why some autistic people have epilepsy or poor mental health outcomes and others do not.”
Individuals of all ages, genders, ethnicities and intellectual capacities will take part in Spectrum 10K. Eligible participants join by completing an online questionnaire and providing a DNA saliva sample by post.
Autistic participants involved in Spectrum 10K can also invite their biological relatives (autistic or otherwise) to participate.
Information collected from the questionnaire and DNA saliva sample, and information from health records will be used to increase knowledge and understanding of wellbeing in autism.
Dr James Cusack, CEO of the autism research charity Autistica and an autistic person, said: “We are delighted to support Spectrum 10K. This project enables autistic people to participate in and shape autism research to build a future where support is tailored to every individual’s needs.”
The Spectrum 10K team views autism as an example of neurodiversity and is opposed to eugenics or looking for a cure for preventing or eradicating autism itself. Instead, their research aims to identify types of support and treatment which alleviate unwanted symptoms and co-occurring conditions that cause autistic people distress.
The Spectrum 10K team collaborates with an Advisory Panel consisting of autistic individuals, parents of autistic children, clinicians, and autism charity representatives to ensure Spectrum 10K is designed in a way that best serves the autistic community.
27 specialist NHS sites around the UK are also helping with recruitment for Spectrum 10K.
Dr Venkat Reddy, Consultant Neurodevelopmental Paediatrician in the Community Child Health Services at Cambridgeshire and Peterborough NHS Foundation Trust, said: “There is a need to conduct further research into autism and co-occurring conditions to enable researchers and clinicians to build a better understanding of autism.
“I would encourage autistic individuals and their families to consider taking part in Spectrum 10K.”
Dr Anna and Alastair Gadney, parents of a teenager with autism and learning difficulties: “We have been exploring, over many years, how to implement the best support for our son.
“We wholeheartedly endorse Spectrum 10K and hope our involvement can help increase understanding of autism and in-turn support many families out there.”
Chris Packham, naturalist and TV presenter who is also autistic, said: “I’m honoured to be an ambassador of Spectrum 10K because I believe in the value of science to inform the support services that autistic kids and adults will need.”
Paddy McGuinness, actor, comedian, television presenter, and father of three autistic children, said: “As a parent of three autistic children, I am really excited to support Spectrum 10K.
“This research is important to help us understand what makes every autistic person different, and how best to support them.”
Recruitment for Spectrum 10K is now open. Autistic children under the age of 16 must be registered by their parent or legal guardian. Autistic adults who lack the capacity to consent by themselves must be registered by a carer/or family member.
To register, participants should visit www.spectrum10k.org
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I’m not seeing much discussion of why so many autistic people say they’re worried about this. It seems like few people are listening to the other side of the story.
Personally, I am deeply concerned about any project that seeks genetic markers for a socially stigmatized group. They say they aren’t trying to “cure” autism, but how could this data be used later? Will it end up going to a prenatal test, much like the one for Down syndrome? What will our society lose as a result?
So many autistic people are voicing fears, yet few news outlets are listening.