Sarah Kurchak
Feb 7, 2018 · 6 min read

CW: suicide, suicidal ideation, murder, filicide, police brutality, dehumanization of autistic people

On March 21, 2017, CNN published an article on a new study from the American Journal of Public Health that found that autistic people die at an average age of 36. I wasn’t shocked by this news. I know how dire things can be for so many of us on the spectrum, but that specific number stuck with me because I had just turned 35 the previous month.

Since then, I’ve been anticipating this milestone my own life with a mix of confusion, dread, and a host of feelings I still can’t quite articulate. I had more existential crises than usual. I spent more time brooding about the meaning of life. It was a lot like a mid-life crisis… except that I’d just discovered that my own mid-life had already happened as long as half my life ago.

At some point between that moment and now, I made a pair of promises to myself:

1. I had to make it to 36. Which wasn’t always easy this past year.

2. Once I did, I needed to do something to mark this morbid accomplishment. Something that, if I was lucky, might help to push that average age up a little higher or at least help the next generation of autists approach their own birthdays just a little easier.

The good news is that I have, officially as of 8:35am eastern this morning, made it.

The bad news is that, as is often the case with me, living while autistic doesn’t always leave one with a lot of energy to write all of the meaningful things that you want to write to improve your life and the lives of other people like you. So I hope that this somewhat awkward and artless offering will suffice:

I turned 36 today. The average age at which people like me die. That scares the shit out of me, and all I want for my birthday is for it to scare the shit out of you, too.

Some Caveats

First, not all studies on autism and mortality can agree on the average age of our deaths. So if you think I’m being overly dramatic by picking the youngest one, here are some other recent studies with more positive results. By “positive,” though, I mean “studies that didn’t determine that THIRTY-SIX was the average age of mortality in autism, but just found that we die significantly earlier than our non-autistic counterparts.”

Secondly, whenever I write about autism, there’s always someone who shows up to point out that I’m not really autistic enough to count or that I’m not the kind of autistic person that people are thinking about when they think of the tragedies and pressures that face people on the spectrum. So, before that happens here, let me say that I am probably at a lower risk of death than many autistic people. Not because I’m “higher functioning” or because my autism is mild, but because I happened to be born in to a certain body and a certain set of circumstances.

For example, the study that CNN cites, Injury Mortality in Individuals With Autism, primarily addresses death from injury. As a child, I was never a wanderer, which put me at a low risk for drowning and other related deaths. I’m assuming that risk remains low now. I’ve had seizures but I don’t have epilepsy, which puts me at a lower risk of death than autistic who have this common comorbidity. I also don’t have to worry that my incredibly supportive parents will murder me for being too much of a burden to them — and that they will be treated like the sympathetic parties in the aftermath — which, tragically, makes me so much luckier than so many people like me.

There are also ways in which I am safer than many of my fellow autistic people that we don’t yet have the statistics for, but that I can definitely see in the world right now. As a cisgender white woman, I do not have to fear that I’ll be murdered by the police like 15-year-old Stephon Edward Watts or 24-year-old Kayden Clarke. Nor will I have to suffer the serious long-term effects that this kind of constant fear and dehumanization can have on a person’s health.

That Said

You can’t entirely separate my incredibly privileged and lucky autistic ass from these devastating statistics. Let me tell you a little more about this best case scenario that I have on my hands:

Autistic adults who don’t have a learning disability, like me, are still nine times more likely to die from suicide than our non-autistic peers. Autistica explores some of the complex reasons that might be behind this alarmingly high suicide rate that you can explore here. Or you can just take a look at my own laundry list of issues to get the general idea:

I’m tired. My sleeping habits are erratic at best. The coping mechanisms that I developed as a bullied and undiagnosed child are, shockingly, not great for managing a remotely healthy life or building any self-esteem whatsoever. The effort that it takes to fit in is becoming increasingly exhausting as I get older, and I’m not even sure what the point of all of this hard work to make other people more comfortable with me is anymore. I appreciate that I have people in my life who have assured me that I can just be myself and that anyone who doesn’t like it can go fuck themselves, but unlearning almost 36 years of shitty coping mechanisms and performances also takes a buttload of work. I do value the social and career gains that I made while I had more energy and inclination to blend into society, but I’m less enthralled with the exponentially increasing bit of chronic anxiety that appears to have come along with them. I repeatedly have to explain to people that I’m not a math savant. There is, however, one calculation that I’m always doing in my head: whether my contributions to my family, friends, and the world is at least equal to all that I feel like I’m taking from it. No matter how I try to add it up, I always feel like I’m at a deficit.

I’m tired of watching people who aren’t on the spectrum tell shitty versions of our stories while I can’t find the funding or the audience for my own. I’m tired of watching people get feels and inspiration from shows like The Good Doctor while they can’t seem to give a shit about autistic people in real life. I’m so, so sick of watching people pay lip service to the value of autistic life while funding research into pre-natal testing for autism at one end and supporting euthanasia for autism on the other, all in the name of preventing suffering. As if that’s not exactly the kind of thing that makes a person feel about a nine times less worthy of existence than someone who isn’t wondering if their birth should have been prevented — or if they should legally peace out before they become too much of a “burden” on their loved ones.

Even when I’m not actively struggling with any of the above, I’m dealing with the fallout of this constant stress and anxiety and the impact all of that has on my health. My resting heart rate is in the 90s.

And that’s the abridged version.

This should not be a good enough outcome for any autistic person. We all deserve better than this.

So what do I want you to do about it?

I’ve spent my whole life being told that you guys are so brilliant and intuitive when it comes to social issues. So you figure it out. I’ve just spent the first part of my 36th birthday writing over a thousand words about theoretically dying at 36 in the hopes that I can spin my strange propensity for bringing people down with ugly facts and observations into a halfway helpful Teachable Moment. I’m going to wind down by putting on some selections from The Apple, drinking something sparkling, and consuming an entire Menchie’s cake now.

But I’d recommend starting with some of the following: Listen to us. Invest in our work. Invest in science and actions that actually make our lives better now instead of chasing a hypothetical cure. Don’t kill us. Think about where your compassion drifts when we’re killed. Don’t rush to blame every single murder that receives any publicity whatsoever on autism. Give your money to marginalized autistic people instead of charities that dedicate less than ten percent of their funds to attempting to improve our lives at all. Think about how hard we’re working to exist in your world and consider meeting us halfway. At least. Tell us we don’t bore you. Tell us we don’t drain you. Look at us somewhere other than the eyes and tell us that we deserve to be alive.

And then act like it.

Sarah Kurchak

Written by

Author of I Overcame My Autism and All I Got Was This Lousy Anxiety Disorder (April 2020, Douglas & McIntyre). Covers autism and pop culture. Loves wrestling.

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