Autistica

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We are the UK’s autism research charity. Our vision is a long, healthy, happy life for autistic people and their families.

We work with autistic people to understand their priorities for research so that we can make a difference at every stage of their lives.

Mental health and suicide prevention is a top priority for the autism community.

We are funding research in this area and campaigning for other funders to follow our lead. Alongside research, we are collaborating with partner organisations to improve services and campaigning for policy change.

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Organisation Details

Address St Saviour's House
39-41 Union St
London SE1 1SD
Website www.autistica.org.uk
Twitter @AutisticaUK
Facebook autisticacharity

How does your organisation contribute to preventing suicide and supporting those affected by it?

Autistic people are 9 times more likely to take their own lives than the typical population. Research also suggests that autistic women are more likely to die by suicide than autistic men - a reverse of the gender split we see in the typical population. There is a crucial need to understand this group better and look at how we can adapt existing services to meet their needs. Currently we are:

Developing better evidence
There hasn’t been enough research on suicide and autism. That makes it difficult to make policy and services more effective. In 2017 we brought people across the community together for the first international summit on suicide and autism to decide the way forward. As a result we are now:

  • Funding researchers to work with people who have lost autistic loved ones to suicide to explore the circumstances around those deaths. Dr Cassidy and her team are also working with autistic people who have had suicidal thoughts to understand their experiences.
  • Supporting Dr Sarah Cassidy and Dr Jacqui Rodgers to continue working with autistic people to determine the top research and policy priorities for preventing suicide in our community. The project will begin by asking autistic people and bereaved families about their priorities, which will be discussed at a collaborative workshop in Spring 2019.

Connecting prevention services to autistic people
Some autistic people can struggle to access support if they’re in a crisis, so we’re ensuring other organisations that care about suicide prevention are considering autistic people’s needs:

  • This year we’ve connected Samaritans with autistic people, to help them explore how they can make their services more accessible.

Improving public policy
We persistently campaign to improve support for autistic people experiencing suicidal thoughts. Since our One Size Doesn’t Fit All campaign we’ve worked with policy-makers to make significant changes:

  • In April, the English Department of Health refreshed its Adult Autism Strategy. Tackling early death is now the Strategy’s top priority, having never previously been mentioned.
  • In August, NHS England announced that tackling the physical and mental health inequalities faced by autistic people will be one of the top priorities for their long-term plan.
  • The National Institute for Health and Care Excellence (NICE) have for the first time highlighted autistic people in their new guidance on suicide prevention.
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What are your current priorities?

In 2019, we’ll be hosting a workshop with public, private and voluntary organisations working in suicide prevention as part of the National Suicide Prevention Alliance’s Annual Conference. We want these groups to hear from autistic people and families with lived experience of suicide.

We plan to continue to raise public and media awareness of the very high prevalence of suicide and suicidal thoughts among autistic people and build new links with organisations and individuals already active in suicide to explore ways to support this under-served population.

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What challenges are you currently facing?

Suicide in autism is a new and very under-researched area and there are few researchers with backgrounds in both fields. There is a clear need for capacity building to ensure that world class research proposals are developed and funded.

More research is needed to confirm the scale of the problem and suggest potential solutions. Many autistic adults are undiagnosed. For those that are, their diagnosis does not show up in suicide data. The data that we do have on prevalence and gender split is from a Swedish population study.

The chronic under-funding of autism research, the sensitivity of the topic and the lack of good quality national and regional data on autism all present challenges to rapidly increasing the quality and quantity of research.

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