A Community Elder at 40: Autistic Mortality3 min read

I was reading articles online, as I often do, when I came upon a shocking and devestating statistic: apparently the average lifespan for autistic people is 36-38 years (Joseph & Guohua, 2017). 

I am now 39 years old, and seeing this made my eyes well up with tears.  Tears of relief for once again “beating the odds” and tears of regret that, before 40, I was an elder in the autistic community. 

I needed to know why. 

I am a healthy adult, and I had to know why people like me were dying in such large numbers so early.  Psychology Today showed me that this data was taken from two recent studies.  The first was published in April, 2017 (Joseph & Guohua), and pinpointed the average autistic lifespan at 36 years, citing drowning, injury, and other such accidents as the leading cause of death at 28%.  The study pushed for tracking devices on young autistic children and swimming lessons.

In some ways, the second study, a Swedish study with larger data sets (Hirvikoski, 2018), was even more devastating.  This study put the average lifespan at 39.5 years for autistics with cognitive or learning disabilities and 58 years for those without.  But then it went into detail on the causes of death. 

The leading causes of death were found to be heart disease, suicide, and epilepsy.  This means that the second cause of death in our community is suicide.  Take that in.  Suicide rates among autistic people were found to be NINE TIMES HIGHER than in the average population.  Autists aren’t all drowning or wandering off. 

We are losing the will to live in astronomical numbers.

Many people in the autistic community suffer from anxiety, depression, PTSD, and other co-occurring conditions, but I am always shocked to see this written off as “the pain of being autistic.”

I disagree.  I don’t recall depression or anxiety as a small child.  My OCD, anxiety, and depression built as a result of bullying from peers and adults, from an environment that did not accommodate my needs, and from being pressured to mask to fit in.  They grew when I was sexually assaulted at five…  and by the way, autistic children are 7.3 times more likely to be sexually abused (Sullivan & Knutson, 2000).  By the age of 13, I wanted to die.  I am glad I held on.

Recent studies have shown the overwhelming correlation between ABA therapy, which teaches children to mask at younger and younger ages and depression and PTSD in autistic adults.  It isn’t a message that is popular with many parents and professionals, but it seems that children who enjoy ABA and the glory of “fitting in” young are finding that masking is exhausting and detrimental to self-esteem as adults.

I remember being 36, 37, 38.  My mask was still firmly in place.  I was raising a special needs child.  I was in love.  My life wasn’t easy, and I wasn’t perfect, but it was far from over.  It was just beginning. 

I cannot imagine everything ending there, before I truly got a chance to grow into myself.  It’s a horrible thought.  But it’s more than a personal loss.  It is a loss to the community of autistic voices, culture, and experiences to lose half of our men and women so young.

So what message would I send this April to my friends and allies if I could?  I would ask you to mourn with me.  To join me in realizing that this is not the norm.  Dying before 40 is a shocking reality shared by many adults like me. 

When the neurodiversity movement speaks against the status quo and current treatments, we aren’t out to make trouble.  We are trying to draw attention to a situation in dire need of change.  With so many in our community dying so young, the status quo isn’t cutting it. 

We don’t need “Autism Awareness”.  We need to save lives and make sure that future autistic individuals have a long, healthy future.  I ask each of you to imagine having a life expectancy under 40 years.  After you shudder, please join us in making the world a better place for autistic people.

References

Joseph, Guan, & Guohua, Li.  (April, 2017) Injury mortality in individuals with autism.  American Journal of Public Health. 

Sullivan P.  M.  & Knutson, J.F.  (2000) Maltreatment and disabilities: a population-based epidemiological study.  Child Abuse and Neglect.  DOI: 24:1257–73.  10.1016/S0145-2134(00)00190-3

Hirvikoski, T., et al.  (January, 2018).  Premature mortality in autism spectrum disorder.  British Journal of Psychiatry.

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