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Response to 'Personal Tragedies, Public Crisis' Report

Date: 18 March 2016

Today a report was released from the charity Autistica suggesting that people on the autism spectrum are dying decades younger than the non-autistic population. The charity is calling for a national response to this 'hidden crisis', including massive investment in research and an NHS England review of premature death in autism.

Autistica’s report, “Personal tragedies, public crisis”, puts forward recommendations for action and calls on the Government to ensure national, regional and local care providers have clear and specific plans to reduce premature mortality in this group.

Research Autism, and the Autism Alliance (of which Research Autism is a member), have responded to this report:

"The data from a major Swedish study underpinning the report issued today raises real issues of concern around the premature deaths of significant numbers of autistic people in particular around seizures and suicide. It is essential that research efforts urgently focus on the various underlying societal and medical causes.

Research Autism remains committed to using research to help make a real difference to the quality of life of people on the autism spectrum and their families."

Richard Mills, Research Director, Research Autism

“Members of Autism Alliance UK would like to thank Autistica for its ongoing determination to put the lives of people with autism at the forefront of Government, Health and research agendas. Clearly the findings of this report are both shocking and tragic and so we welcome this important research and prospect of it opening up a wider, critically important discussion into how our country can best serve the autism community. Further research is now required to establish the true scale of this issue in the UK, although we believe this research data to be highly credible.
 
"The prospect of losing a child at any age is inconceivable for any parent but for tens of thousands of people reading the findings of this report today the stark reality of the challenges facing their children, young or old, will be all too poignant. However, these families should not feel they are without hope. The members of the Autism Alliance UK and many other grassroots organisations helping people with autism are committed to delivering the best care, campaigning for solutions and raising awareness of this condition which affects at least one in every hundred people.
 
"As an alliance we will now strive to ensure that all those caring for and supporting adults and children with autism will review these findings in a bid to deliver the best possible long term health outcomes for those our organisations exist to serve. This report and the headlines it will generate will only seek to make us all the more determined to keep doing all we can for people affected by autism.”

Autism Alliance UK www.autism-alliance.org.uk/

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Notes to editors:

Contacts

Bernard Fleming, Information Manager, Tel. 020 3490 3091, email info@researchautism.net

Research Autism

www.researchautism.net

Research Autism is the only UK charity dedicated to the production of quality, trusted information on autism treatments and other approaches. Its Information Centre is informed by world experts and accredited by the NHS Information Standard, an independent kite-mark of reliability and quality. It guides people through the minefield of interventions on offer, allowing them to make informed decisions based on impartial, factual information, including risks and hazards. Its research programme is derived from the priorities of autistic people and families and addresses areas that affect everyday life. 

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Updated
25 Oct 2017