A Community Elder at 40: Autistic Mortality4 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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