Cambridge University launches UK's largest ever autism study

Cambridge University launches UK’s largest ever autism study as 10,000 people are recruited to look at how disorder develops

  • The UK’s largest ever autism study is recruiting 10,000 people
  • It will examine how genetic and environmental factors impact them
  • Cambridge researchers hope findings will improve diagnosis, support and care

Ten thousand people with autism are today being invited to join the UK’s largest ever study into the condition.

Researchers from the University of Cambridge will examine the role genetic and environmental factors play in placing people on the spectrum.

They hope their findings will improve diagnosis, support, clinical care and quality of life for autistic individuals and their families.

However, they stress the Spectrum 10K project is ‘not searching for a cure’ and they do not ‘in any way support that approach’.

The project website adds: ‘Every member of the Spectrum 10K team values and respects autistic differences and are working to promote inclusion, acceptance and dignity for autistic people throughout society.’ 

Around 700,000 people in the UK are autistic but the level of support an individual needs varies considerably.

Many have additional physical or mental health issues such as epilepsy, anxiety or depression.

Researchers at the University of Cambridge (pictured) have launched the study to examine the role genetic and environmental factors play in placing people on the spectrum. They hope their findings will improve diagnosis, support, clinical care and quality of life for autistic individuals and their families

TV presenter Paddy McGuinnes, pictured left with his wife and three children who have autism, said the study provide information on ‘what makes every autistic person different and how best to support them’. Wildlife TV presenter Chris Packham, pictured right, who is also autistic, said the research will inform the support services autistic people need

However, it remains unclear what gives rise to the diverse presentation of autism or why some people have better outcomes than others.

Environmental factors that the researchers may examine include pollution, a person’s birth weight and the mother’s age and weight.

Autism is partly influenced by a person’s genes but it is not entirely genetic.

Autistic people of all ages, genders, ethnicities and intellectual capacities are able to take part.

What are the signs of autism? 

Signs of autism in young children include: 

  • Not responding to their name 
  • Avoiding eye contact 
  • Not smiling when you smile at them 
  • Getting very upset if they do not like a certain taste, smell or sound 
  • Repetitive movements, such as flapping their hands, flicking their fingers or rocking their body 
  • Not talking as much as other children 
  • Repeating the same phrases 

Signs of autism in older children include

  • Not seeming to understand what others are thinking or feeling
  • Finding it hard to say how they feel 
  • Liking a strict daily routine and getting very upset if it changes 
  • Having a very keen interest in certain subjects or activities 
  • Getting very upset if you ask them to do something
  • Finding it hard to make friends or preferring to be on their own 
  • Taking things very literally – for example, they may not understand phrases like ‘break a leg’

Common signs of autism in adults include:

  • Finding it hard to understand what others are thinking or feeling 
  • Getting very anxious about social situations 
  • Finding it hard to make friends or preferring to be on your own 
  • Seeming blunt, rude or not interested in others without meaning to 
  • Finding it hard to say how you feel 
  • Taking things very literally – for example, you may not understand sarcasm or phrases like ‘break a leg’ 
  • Having the same routine every day and getting very anxious if it changes

Source: NHS

Participants will be asked to complete a questionnaire online, give permission for experts to access their medical records, and provide a DNA saliva sample by post.

Volunteers can also invite their biological relatives to join the study.

Study leader Professor Simon Baron-Cohen 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.’ 

Spectrum 10K is led by the Autism Research Centre, at the University of Cambridge, in collaboration with the Wellcome Sanger Institute and University of California Los Angeles.

The researchers say they view autism as a form of ‘neurodiversity’ and are opposed to eugenics or looking for ways to prevent or eradicate autism itself.

Instead, they want to identify support and treatments that alleviate unwanted symptoms and co-occurring conditions that cause autistic people distress.

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.’ 

Dr Venkat Reddy, Consultant Neurodevelopmental Paediatrician 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.’ 

Wildlife TV presenter Chris Packham, 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.’

And Paddy McGuinness, an actor, comedian, television presenter, and father of three autistic children, said: ‘This research is important to help us understand what makes every autistic person different, and how best to support them.’

He told BBC Breakfast the ‘postcode lottery’ of support for parents of autistic children needs to change. 

Mr McGuinness 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 hiSs 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.’

Celebrity singing coaches Dr Carrie Grant and David Grant said: ‘As parents of four children, two of whom are autistic, we understand it can feel like there are a lot of forms and surveys to fill out with little direct benefit.

‘With Spectrum 10K there is hope that it could have real impact on health outcomes and the support available for autistic people.

‘Our passion is to see more being done for girls and women on the spectrum and therefore we ask you to read more about Spectrum 10K and consider taking part.’

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