When I was 12, I was told I was autistic. No-one told me that could mean I was more than twice as likely to die early.
The reality is that autistic people are dying far too young. A large study from Sweden has found that, on average, autistic people die 16 years younger than the general population. Autistic people are at increased risk of death from almost every possible cause.
For those with autism and intellectual disability, who form the majority of people with autism, the average age of death is a staggering 30 years lower than the general population. The leading cause of death is epilepsy, which is harder to identify in autism than the general population, and which has an unusual developmental trajectory – not generally developing until adolescence. Meanwhile, autistic adults with intelligence in the normal range are almost ten times more likely to kill themselves. To me, this demonstrates the challenges which many autistic adults face in their daily life and our failure as a society to meet the needs of the autistic population.
These statistics are sobering, but behind them lie real people, real families, and real losses to wider society. I meet far too many parents who have had told me about losing their sons or daughters. I know far too many autistic people who have struggled with mental health problems and experienced thoughts of suicide.
It is not enough to shake our heads and comment on how shocking these results are. As a humane society and nation, we must act on this. I work for Autistica, a charity which funds research into autism. We have just launched a report “Personal tragedies, public crisis”. In this report, we have committed ourselves to doing our part – we are going to commit to raising £10m to solve this issue. In particular, we hope to fund research which addresses epilepsy, suicide and poorer physical health seen in autism.
I am driven by the desire to ensure that every autistic person has the same opportunity to live a long, happy life like the rest of the population, but I am also not deluded. Autistica cannot and will not be able to do this on our own. We need society’s support and action from government to fund research which can find ways to tackle the leading causes of death in autism. This issue is also bigger than research. Our health services, social care and other must reform to build a world which not only acknowledges autism, but which is truly autism-friendly, allowing everyone with autism to participate.
Early death in autism must be tackled now. Please join us and give everybody with autism the chance of a long, happy, healthy life.
Link to original article: http://www.huffingtonpost.co.uk/dr-james-cusack/we-must-tackle-early-death-in-autism_b_9382136.html