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Toolkit released to bust stigmas about autism

26 June 2017

Know Your Normal

A report released today by the Centre for Research in Autism and Education (CRAE) at the UCL Institute of Education (IOE) reveals that four out of five young people with autism have experienced mental health issues and feel more under strain than their non-autistic peers.

The report was commissioned by Ambitious about Autism's Youth Patrons, who worked closely with CRAE to find out about the mental health experiences of young autistic people.

In response to the research findings, the Youth Patrons have produced a 'Know Your Normal' toolkit to enable education, social care and health professionals to understand and help young autistic people who might be struggling with their mental health.

The research forms part of a project undertaken by the Youth Patrons 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.

Researchers 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.

The toolkit features a range of resources, including a stigma-busting animation and training for education, social care and health professionals. It is hoped that 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.

 

 

Dr Laura Crane, one of the authors of the research at CRAE, said:

 

"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."

 

Georgia Harper, a Youth Patron at Ambitious about Autism, added:

 

"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."

 

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."

Media contact

James Russell
Tel: +44 20 3108 8516
Email: james.russell@ucl.ac.uk

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