I’m writing this post because I often see people suggest therapy as a means for improving the lives of adults on the autism spectrum. While I appreciate the good intentions, I genuinely wonder how it can help past a certain age. (Let’s say 21.)
I write this as an adult with an extremely high functioning case of Asperger’s. At my age, people generally have settled into their social groups and aren’t wishing to expand them. I have a girlfriend, but assuming I didn’t, I’d be ridiculed for my lack of experience and naïveté.
Children have it much different. At their age, they have more than enough time to learn NT social skills and at least try to integrate. They can form their identity and develop as people. But for adults, how can what essentially amounts to platitude spamming be useful for them?
Genuinely looking to challenge my perspective.
In June, Nicholas Lyons graduated from a private special-education high school in Maryland. Like many of his classmates, he is unsure what he is going to do next. His mother, Kelly Lyons, is worried, too — but more about his health than his plans: At 18, Nicholas has already endured several bouts of depression, one of which drove him to contemplate suicide.
Nicholas was diagnosed with autism at age 9. By 12, the socially awkward, bright boy was in therapy for depression, too. “He was made fun of because he was different. He was smart enough to know that,” his mother says. “It posed a real problem.”
At 13, Nicholas’ mood plummeted further. He disengaged from everyday activities, such as talking with his family at dinner and playing video games, and he began sleeping a lot — common signs of depression. His mother increased his therapy sessions from once to twice a week. Meanwhile, his social problems only grew worse. “The autism caused me to take insults a lot. The insults were harsh,” Nicholas says. “Sometimes the kids made me angry. Sometimes it really annoyed me. The insults made me sad sometimes.”
The bullying got so bad that his mother pulled him out of the public school he was attending. He switched to a private special-education school, where he thrived until about age 17. Then he started worrying about what he would do after graduation. Again, he spiraled into depression, and his psychiatrist prescribed an antidepressant. The drug has helped Nicholas feel “even-keeled,” he says, but he is still anxious that his life is changing.
Nicholas’ ongoing battle with major depression is not unusual for people on the spectrum, according to a meta-analysis of 66 studies published in January: They are four times more likely than neurotypicals to experience depression over the course of their lives, although scientists are unsure why. Their rates of depression rise with intelligence and with age. In fact, says Carla A. Mazefsky, associate professor of psychiatry and psychology at the University of Pittsburgh in Pennsylvania, more than 70 percent of autistic youth have mental health conditions, including depression and anxiety, and these are thought to often persist or worsen into adulthood.
The consequences for many autistic people are dire. Major depression can severely impair their independence; their coping, daily living and social skills; and their communication — all things they may already find challenging. Depression can also trigger suicidal thoughts: Before Nicholas’ mother pulled him out of his public school, he had intended to end his life, she says.
Despite this grave set of circumstances, there is little hope available. There are no studies on which screening measures are most useful or which treatments work best to ease depression among autistic people. It is not known, for example, whether depressed autistic people respond differently to psychotherapy than others do, or how best to adapt treatments such as cognitive behavioral therapy for them. Talk therapy, in particular, may not work well for autistic people, because they can struggle with social communication and with identifying their feelings, a trait known as alexithymia.
“In truth, we know alarmingly little about depression and autism.” Jeremy Veenstra-VanderWeele
It is also unclear what effect medications for depression have on people on the spectrum. “They may have more side effects and more difficulty,” says Jeremy Veenstra-VanderWeele, a child and adolescent psychiatrist at Columbia University in New York. Antidepressants can even disrupt autistic children’s sleep and make them more impulsive, potentially outweighing any benefits, he points out.
In addition to developing better screening tools and treatments for depression in autistic people, researchers are trying to get at the root causes involved. The origins of the overlap have not been easy to trace. “Despite us knowing that depression among people on the spectrum is a common problem, in truth we know alarmingly little about depression and autism,” Veenstra-VanderWeele says. “The whole field is moving very slowly.”
Ok so this post is kinda specific and reddit is not a doctor, but I’m in the process of finding a therapist for my wife. She’s informally diagnosed with “autism” generally, most of the temporary therapists she saw in college made comments to her that they thought she was autistic but couldn’t diagnose her due to their temporary positions.
Flash forward to now, my wife is really really struggling with severe anxiety and can hardly function at this point in all honesty. I just completed my bachelors of science in psychology and my dad is a therapist, but he doesn’t specialize in treating autistic people and neither of us are autistic, so I have this nagging anxiety that I’m gonna end up recommending a form of therapy to her that would be good for my brain, but not for hers. I want to honor the fact that she may be wired completely differently than I am, but she’s an economics major… she’s nowhere near as well versed in her therapy options as I am, and she wants me to pick therapists for her to call for intake appts. She says she trusts me to find good people for her, but I have absolutely no idea what’s best for her.
So if any of y’all also have anxiety disorders and have found success in therapy, what kind of therapy style has helped you the most? Again, I’m not just gonna let reddit pick for me but… the opinions of other autistic people would definitely factor into what we try for her first.
On March 21, 2017, CNN published an article on 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 Watts or 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 autism on 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.
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