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News and events index

26 June 2017

Four out of five young people with autism have experienced mental health issues

According to a new report commissioned by Ambitious about Autism’s Youth Patrons, four out of five young people with autism have experienced mental health issues. The group of young people with autism from across the UK worked with the Centre for Research in Autism and Education (CRAE) to find out about the mental health experiences of young autistic people and make recommendations on how best to meet their needs.

The research forms part of a project undertaken by the young people to promote an understanding of what wellbeing looks like for children and young people with autism. In particular the project focuses on how a ‘normal day’ for someone with autism might be very different from that of a neurotypical person. The project promotes the idea that when anyone’s behaviour changes from their own normal that could be a sign that something is wrong, and an indication that you should seek help.

The research asked young people how they felt normally and what their experiences of mental health were. The report, Know your normal: young people with autism’s experience of mental health, highlights the following findings:

• 76% said that when they are not experiencing mental health issues they believed they felt more under strain than their non-autistic peers;
• Only 4% are extremely confident in knowing who to ask for help if they are experiencing a mental health issue;
• Two thirds of young people said that if they did ask for help they had little or no confidence they would get what they need;
• 90% felt uncomfortable disclosing mental health issues to education professionals.

The report outlines three key points young autistic people believe will make the biggest difference to their experience of mental health:

• They must have support identifying and communicating how they feel;
• To reduce stigma and increase the knowledge around mental health and autism;
• They must be able to find and access suitable support when they need it.

To support these changes, the Youth Patrons have created a number of resources including a toolkit, a stigma-busting animation and training for education, social care and health professionals. They hope the resources will help everyone working with young people with autism feel more confident intervening early, and understand that it is not inevitable that young people with autism should be unhappy.

The full report can be found here

The animation film can be found here

Georgia Harper, 23, is a Youth Patron at Ambitious about Autism and worked closely with CRAE on the report. She said:

“Our research shows that young people like us are struggling with their mental health, but we don’t know where to go for help, or feel confident that the right help is out there. This is not acceptable.

“Providing the right services for autistic young people who are experiencing mental health issues is the right thing to do. Early intervention maximises the chance of being able to help, and in the long term, will often cost less than waiting until we need crisis care.

“And what do the right services look like? Well, they are designed in conjunction with the people who might want to use them, alongside professionals who understand autism, and the impact that small reasonable adjustments can make to autistic people’s ability to ask for and access help.

“We want to be part of the solution so we’ve designed some training and resources for health commissioners, people who work in GP’s surgeries and all public health workers to help them think about how they adjust services to better meet our needs.”

Dr Laura Crane, one of the authors of the research added:

“Young autistic people felt that their ‘normal’ was different to that of other people and, strikingly, rather negative in nature. For example, young people highlighted how they generally felt unhappy and depressed; worthless; under strain; unable to overcome their difficulties; unable to face up to problems; and lacked confidence.

“It is not acceptable for unhappiness and depression to be seen as the 'normal' state for young autistic people. Indicators of the presence of a mental health problem can be subtle – this may make it difficult for the young autistic people, and other people who know them, to identify that they are experiencing mental health problems. This is a particular issue since young autistic people often reported finding it hard to express their needs.”

Elizabeth Archer, Director of Policy and Campaigns at Ambitious about Autism, commented:

“Ambitious about Autism is proud to have supported its Youth Patrons to undertake this ground-breaking piece of research. We believe that children and young people with autism are the experts of their experiences, and we hope that research like this, helps spread an understanding of what it is really like to be a young person with autism today.

“Autism is not a mental health difficulty, and it is not inevitable that young people with autism will experience mental health issues. Our Youth Patrons work to share this message through their research, animation and training and this is to be commended. With the right support we should be able to reduce mental health issues and ensure a better quality of life for young people with autism. Now is our time to follow their lead.”

For further information about the Know your Normal campaign, please visit www.knowyournormal.co.uk or #knowyournormal

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The Know your Normal survey was carried out from in February and March 2017 and 130 young people with autism took part in the research.

About Ambitious about Autism:

Ambitious about Autism is the national charity for children and young people with autism. We provide services, raise awareness and understanding, and campaign for change. Through TreeHouse School, Ambitious College and the Ambitious about Autism Schools Trust, we offer specialist education and support. Our mission is to make the ordinary possible for more children and young people with autism.

Our vision is to make the ordinary possible for more children and young people with autism.

Autism is a lifelong development disability which affects one in 100 people in the UK. It affects the way a person communicates and how they experience the world around them. Some people with autism are able to live independent lives, but others may face additional challenges including learning disabilities.

The Centre for Research in Autism and Education (CRAE) is a partnership between UCL Institute of Education (IOE), University College London, the leading centre for education and social research in the UK, and Ambitious about Autism, the national charity for children and young people with autism.

Ambitious about Autism work with a wide network of young people with autism, to shape what we do. These young people sit on our Youth Council, on advisory boards we support and create content for our site. Youth Patrons volunteered more than 1000 hours to making the ordinary possible for children and young people with autism in the last year, including running our 'Employ Autism' and ‘Know your normal’ campaigns.

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