On March 21, 2017, CNN published an articleon a new study from the American Journal of Public Health that found the average life span of an autistic person is 36 years. I wasn’t shocked by this news. I know how dire things can be for so many of us on the spectrum, but that number struck me for a very specific reason. I had just turned 35 the previous month.
Since I learned this news, I’ve been anticipating the milestone of turning 36 with a mix of confusion, dread, and a host of other feelings I can’t quite articulate. I’ve had more existential episodes than usual, brooding about the meaning of life. It’s been a lot like a midlife crisis — except that (I kept thinking) my own midlife might have happened as long as half my life ago. The average age of death for autistic people who live to adulthood might be older than 36 (and as of now, there is still no age-specific data). Still, the figure from the research journal haunted me.
At some point between that moment and now, I made a pair of promises to myself:
1. I had to make it to 36.
2. Once I did, I needed to do something to mark this morbid accomplishment — perhaps writing something to help the next generation of autists approach their own birthdays just a little easier.
The good news is that I have officially, as of 8:35 am Eastern on February 7, made it.
The bad news is that living while autistic doesn’t always leave one with much 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.
Turning 36 scared the shit out of me. I want the fact that autistic people die so much earlier than the average American to scare the shit out of you too.
Here’s why that number is so low — and all the ways I’m lucky to have made it to 36
Some caveats. First: Not all studies on autism and mortality agree on the average age of our deaths. If you think I’m being overly dramatic by picking one that appears to cite the youngest age, here are some other recent studies with more positive results. One says 39 is the average life span; another says 54. By “positive,” though, I mean “studies that determined autistic people live longer, on average, than 36, but still found that we die significantly earlier than our non-autistic counterparts.”
Second, 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.
Because I can speak, work, and maintain a semblance of a social life — and because I am able to hide my most severe symptoms from other people — they assume that I am too “high-functioning” to be considered autistic. Before that happens here, let me say that, yes, 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 into a certain body and a certain set of circumstances.
For example, the study that CNN cites, “Injury Mortality in Individuals With Autism,”primarily focuses on — as you can guess from the title — death from injury. As a child, I was never a wanderer (as many autistic children are), which put me at a low risk for drowning and other related deaths. I’ve had seizures, but I don’t have epilepsy (as many autistic people do), which puts me at a lower risk of death.
I also don’t have to worry that my incredibly supportive parents will murder me for being too much of a burden to them. That makes me luckier than others with my condition. More than 550 disabled people have been murdered by their parents, relatives, or caregivers in the past five years in the United States, according to the Autistic Self Advocacy Network.
“We see the same pattern repeating over and over again,” ASAN says of the grisly phenomenon. When disabled children are killed, the media focuses on the “burden” that the murderer faced in having to care for them. People sympathize with them instead of the victim. And in the worst cases, this can lead to lighter sentencing.
There are also ways that 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 worry that I’ll be killed by the police like 15-year-old Stephon Edward Wattsor 24-year-old Kayden Clarke. Nor will I have to suffer the serious long-term health effects that this kind of constant fear and dehumanization can have.
The stress of living with autism is exhausting
You can’t entirely separate my incredibly privileged and lucky autistic ass from these devastating statistics. 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, a UK charity, explores some of the complex reasons that might be behind this alarmingly high suicide rate in a report on “the urgent need for a national response to early death in autism.” Or you can just take a look at my own laundry list of issues to get the general idea:
I’m tired all the time. The coping mechanisms that I developed as a bullied and undiagnosed child — from learning to mimic the behaviors of people who are more naturally likable than me to holding entire conversations where I reveal nothing about myself for fear of being too enthusiastic, too annoying, too overbearing, or simply too much — are not great for managing a remotely healthy life or building self-esteem. The effort it takes to fit in is increasingly exhausting as I get older.
All that hard work to make other people more comfortable around me feels more and more pointless. I appreciate that I have people in my life who have assured me that I can just be myself, but unlearning almost 36 years of shitty coping mechanisms and performances also takes a buttload of work. My sleeping patterns, due to anxiety and possibly to autism itself, are erratic at best.
I value the social and career gains that I made when I had more energy and inclination to blend into society. I’ve wanted to be a writer since I was old enough to read, and I’m now lucky enough to survive on writing alone. But with it has come chronic anxiety, which seems to increase exponentially. There is, however, one calculation that I’m always doing in my head: whether my contributions to my family, friends, and the world are at least equal to all that I feel like I’m taking from it. I always feel like I’m at a deficit.
I repeatedly have to tell people I’m not a math savant. 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 to tell 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 prenatal testing for autism at one end and supporting euthanasia for autismon the other, all in the name of preventing suffering. As if these measures that suggest that autistic birth should be prevented — or that they have a duty to die if they are too much of a “burden” on their loved ones — don’t make me feel worthless.
Even when I’m not actively struggling with any of the above, there’s the constant stress and anxiety. My resting heart rate is in the 90s. My body aches in ways that I can’t entirely attribute to age. My energy level appears to be similarly deteriorating.
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 non-autistic people are so brilliant and intuitive when it comes to social issues. Like many autistic people, though, I haven’t always felt like I’ve seen much empathy, compassion, or understanding. And the evidence is starting to suggest that we’re not wrong about the level of judgment and stereotyping we face.
If you want to understand people on the spectrum, 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 twice about sympathizing with the parents who do kill us. Don’t rush to armchair-diagnose every mass murderer with autism — like what happened with the most recent Florida school shooting. Give your money to marginalized autistic people instead of charities like Autism Speaks, which dedicate only a small percentage of their budget to programs that will actually help autistic people. Think about how hard we’re working to exist in your world and consider meeting us halfway.
Tell us we don’t bore you. Tell us we don’t drain you. Look at us somewhere other than the eyes — we’re really not comfortable with eye contact and are tired of being forced to make it for your benefit — and tell us that we deserve to be alive.
And then act like it.
Sarah Kurchak is a writer, autistic advocate, and retired professional pillow fighter from Toronto. Her work has appeared in outlets including the Guardian, the Establishment, Fusion, and Vice. Find her on Twitter @fodderfigure. This piece was adapted from an essay first published on Medium.