The author of this blog is the parent of a 31-year-old man on the autistic spectrum. So this story and issue is something ‘close to home’. There have been other articles and reports on autism (and learning disability) and early death, but the ‘newish’ charity Autistica (founded 2004 with the primary aim of supporting and funding autism-related research) seems recently to have pulled a lot of strands together, and given the issue more prominence.
Below is the content of an email received in the Rescare office. Note especially the request ‘to tell us your story’. Whilst recognising the sensitivity of this issue and the emotional pain which often surrounds it, if you are a family carer with relevant experiences, please consider contributing your testimony.
Dear supporter,
We’ve been overwhelmed by the response from families affected by the issues raised in our report on early death in autism.
We knew this was a hidden tragedy affecting thousands of people across the UK, but the stories we have been receiving have brought home the personal impact of this national outrage.
Tell us your story about how this issue is affecting you and your family.Your experiences can help us show the government, the NHS and the media that things must change.
A huge thank you must go to everyone who has signed our petition and made a donation. Your contribution will save lives.
By signing our petition, you are helping us secure a National Autism Mortality Review – a crucial first step to tackling the tragic issue of early death in autism.
By making a donation, you are directly supporting the start of vital research that will tell us why so many people are being lost so soon.
Our founder, Dame Stephanie Shirley, lost her son Giles to epilepsy when he was just 35. In this film, she shares her own story and why she supports Autistica:
We look forward to keeping you up to date on the progress that we are making with the campaign. Together, we can help everyone with autism to live longer, healthier and happier lives.
Thank you.
Jon Spiers
CEO, Autistica
Update 5th April 2015: An article, written by someone on the autistic spectrum, and reflecting on the Autistica report, has now appeared on the Guardian’s online social care network. It is well worth reading. The article begins:
“As an autistic person, I am part of a group which has a significantly higher risk of suicide than the general population. This is what I discovered recently, when the charity Autistica released its report into premature mortality. It makes disturbing reading for anyone with a connection to autism. The report, Personal Tragedies, Public Crisis, draws on the findings of the largest study of its kind into premature mortality in autism conducted at the Karolinska Institute in Sweden. Published at the close of 2015, it revealed autistic people without a learning disability had a nine times higher than average premature mortality rate, with suicide a principal cause. Grim though this may be, the report may not come as a surprise for the many autistic adults who live unsupported with mental health issues caused by the elevated levels of stress, anxiety and social isolation of autism. Yet this struggle has received scant recognition by the mental health services…”