New Brunswick Must Start NOW to Tackle Early Death in Autism!

My son Conor is now 21. He is a great joy in my life. Like many with autism and intellectual disabilities he also suffers from epilepsy which made itself known in adolescence. He is one of a significant number of persons on the Autism Spectrum whose life expectancy is reduced on average by 30 years. In NB we are afraid to discuss such harsh realities. 

New Brunswick Must  Start NOW to Tackle Early Death in Autism!

Here in New Brunswick government, media and the general population are largely unaware of the early death crisis marked by sharply reduced life spans of persons with autism disorders. Persons with autism spectrum disorders die early, shockingly early.  Persons with autism and intelligence in the average range die as much as 9 years earlier than persons in the general population.   Roughly half of the Autism population who also have Intellectual Disabilities die on average 30 years earlier than persons in the general population. These brutal realities have been confirmed by a Swedish study reported for public awareness by the UK Autism Reserch Charity Autistica. The Autistica Report Personal Tragedies, Public Crisis: The urgent need for a nationalresponse to early death in autism can be found on its web site. We Must Start Now to Tackle Eearly Death in Autism is a comment on that report published on the Huffington Post by the UK research director Dr. James Cusack himself a persons with autism.

Here in NB government responded well to autism parents advocating for evidence based early intervention and other services to age 16. Tragically NB governments have shown no real interest in addressing the serious needs of autistic adults whether those with average intelligence suffering from suicide inducing depression or the roughly 50% who have intellectual disabilities many of whom suffer from life shortening epilepsy a condition worsened by the cognitive and communication deficits of those with autism and intellectual disability.

NB government, media, and even autism community groups throw around clichés and on a positive note engage autistic children and young people in social activities to some extent but they do not even talk about the brutal realities of early death facing so many with autism spectrum disorders. New Brunswick has seen autistic adults die early deaths from epilepsy seizures. Some with autism suffer from serious depression.  No one is talking about these harsh realities in the context of autism disorders where the rates of early deaths are so high compared to persons in the general population.

Dr. James Cusack, as stated, is himself a person with autism and he is the Research Director of Autistica.  In hiis recently  published blog post on the Huffington Post called “We Must Tackle Early Death in Autism  " he stated:

“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.”