TV presenter calls to change ‘postcode lottery’ of autism support on launch of UK’s largest study
Comedian Paddy McGuinness has said the “postcode lottery” of support for parents of autistic children needs to change.
The TV presenter, who has three autistic children, also spoke of the importance of educating people on the condition, as he backed the launch of the UK’s largest study into autism.
The work by Cambridge researchers is aiming to achieve better levels of support and understanding for autistic people.
The Spectrum 10K project will recruit 10,000 autistic people from across the UK to boost understanding of how biological and environmental factors impact on them, organisers say.
The project will be carried out by Cambridge’s world-leading Autism Research Centre (ARC) in conjunction with the nearby genetics research body the Wellcome Sanger Institute and the University of California Los Angeles (UCLA).
Researchers say the study will examine the different needs of people with autism, many of whom have additional conditions including epilepsy, anxiety and depression.
McGuinness (pictured) said he is “really excited” to support the research, describing it as “important to help us understand what makes every autistic person different, and how best to support them”.
Speaking of his own experience as a parent, he said he and his wife were fortunate to live in a part of the country where there is good support.
He told BBC Breakfast: “It is a postcode lottery and that needs to change.”
He added: “One of the biggest things for any parent, who’s struggling as well, who does eventually get the diagnosis, is then it’s kind of a little bit like ‘right, you’ve got your diagnosis, now what?’
“There’s not things in place quickly for parents, I feel, to support them. But again, like I say, it just depends on where you live in the country and that definitely needs to change.”
He recalled a moment in a car park once where a man looked at him for pulling into a disabled spot and had said of the presenter’s children: “They don’t look disabled.”
McGuinness said he “took a deep breath” and explained the situation to the man.
He said: “I think things like that are important to sort of educate people and let them know exactly why you’re in that disabled spot, but that’s only a tiny little thing.”
The comic also told of his frustration at the low level of employment of autistic people in the UK.
He said: “It’s so frustrating to me that there’s one in five people in the UK with autism actually in employment. Things like that need to be changed because people with autism can contribute to so many things.”
Naturalist and TV presenter Chris Packham, who is autistic, is also backing the research.
He 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.”
With some 700,000 autistic people in the UK, the study’s organisers say they will attempt to better understand what causes the broad levels of diversity within the autism spectrum, with the aim of identifying what support works best for each individual.
Professor Simon Baron-Cohen, director of the ARC and study leader, said: “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.”
People of all ages, genders, ethnicities and intellectual capacities will take part in the study, completing an online questionnaire and providing a DNA saliva sample by post.
Autistic participants can also invite biological relatives – autistic or otherwise – to participate. Information collected from the questionnaire, DNA saliva sample and health records will be used to increase knowledge and understanding of wellbeing in autism.
Dr James Cusack, chief executive 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 said it views autism as an example of neurodiversity, and is opposed to eugenics, searching for a cure for autism, or preventing or eradicating the condition.
Instead, the research aims to identify types of support and treatment that alleviate unwanted symptoms and co-occurring conditions that cause autistic people distress, the group said.
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 to best serve the autistic community.
A total of 27 specialist NHS sites around the UK are also helping with recruitment for Spectrum 10K.
To find out more, visit www.spectrum10k.org.
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