I was 35 when I discovered I’m on the autism spectrum. Here’s how it changed my life.
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“Do you hate crowds, especially at supermarkets and restaurants?”
I avoided eye contact, which I knew I wasn’t supposed to do. “Yes.”
If Dr. P. noticed, she was too busy looking at the questionnaire to let on. “Do you tend to repeat heard words, parts of words, or TV commercials?”
I immediately flashed back to middle school, randomly repeating such phrases from TV as, “I don’t think so, Tim,” from Home Improvement. I was tempted to respond that way this time. Instead, I just replied with another, “Yes.”
“Do you have trouble sustaining conversations?”
“Is your voice often louder than the situation requires?”
“Do you find yourself resistant to change?”
“Do you have restricted interests, like watching the same video over and over?”
“Did you start reading and/or memorizing books at an early age?”
Eye contact suddenly became much, much easier. “Wait — isn’t that a good thing?”
“It is. But did you do that?”
I went back to boring a hole in the carpet with my eyes. “Yes.”
“Have you ever picked up and smelled random objects, like toys when you were younger?”
“That’s a sign?”
“Sometimes. Did you do that?”
“…yes.” I wanted to puke.
After a few more questions, she did some totaling. “Well,” she finally said, “it’s likely you have ADHD and social anxiety disorder, and you’re on the autism spectrum.”
I slumped back into the overstuffed chair. “Great,” I said. “Triple threat.”
I was 35 years old.
There are, according to the Autism Society of America, 3.5 million Americans with autism spectrum disorder, approximately one in every 68 births. Based on reports compiled by the Society, the prevalence of autism has increased 119.4 percent just from 2010 to 2014.
It’s not that more autistic people were suddenly being born. It’s that doctors knew what to look for. A Danish study published in January 2015 suggests that diagnoses of autism are more frequent because of a broadening of diagnostic criteria over the years, meaning there could be generations of people with autism spectrum disorder who were never diagnosed.
I knew, on some level, that I was autistic by the time I was in fifth grade. It wasn’t because of Oscar winner and box office sensation Rain Man, which I was too young for; it was, of all things, a Baby-Sitters Club book called Kristy and the Secret of Susan, where one of the babysitters tends to an autistic girl.
I don’t recall all the details, but I do remember reading the book and asking my mom if I was like this, if it was why I needed “curriculum assistance” classes or why I’d been pulled from preschool and sent to “Project Enlightenment,” an ultra-structured children’s program downtown.
Mom assured me I was not like that. Susan never spoke, and that wasn’t me, was it?
I moved on. I was already neurotic about reading “girls’ books.”
By the time I reached college in the late 1990s, a new term had become a buzzword: Asperger’s syndrome. I wondered if that was what I had. It explained so much — the obsessive memorizing of TV show trivia, the absolute discomfort at bars, clubs, and parties, the way I’d tune out most classes or social situations.
Again, I was assured by my parents and friends who knew people with autism — that wasn’t me. I had empathy! And I was doing well in school, I just needed to relax a little.
In retrospect, they seemed more worried about how worked up I was over this than the possibility of an actual diagnosis. There’s a stigma attached to autism that leads many families to avoid a diagnosis. But in attempting to diagnose yourself, it can feel like the things that make you unique are aspects of some sort of affliction, one that is permanent and incurable.
A few years later, a good friend of mine was diagnosed with Asperger’s. Then he told me he thought I exhibited some symptoms as well. I freaked. I had finally started to feel “normal.” I had a job, I was finally comfortable with things like driving and calling up strangers for interviews — I was just a “late bloomer!” I broke down and told him I still cared about him, that I didn’t see him differently, but that I didn’t have what he had! I was finally growing up, I said. I didn’t have some incurable disorder that separated me from everyone else.
But I worried. Friends didn’t quite know what to say when I brought up the possibility, often in tears and just short of hysterics. “You’re just you,” they’d say. Mom and Dad were practical: “Well, what if you are? What good does it do you to put a label on yourself?”
They weren’t being mean. They reminded me, over and over, that I was “doing well.” They’d already seen me fall into periods of depression and nonproductivity when I was out of school and out of work, and didn’t want me to return to that place.
I’d pulled myself out of those spirals before they became too serious. But if a doctor told me I’d never be “normal,” that my strangeness was something pathological, would that be the excuse I needed to turn into a complete lump?
I was just one of those people who did “better” when I was busy, when I had structure. I just needed motivation. That was all.
Eight more years passed.
Asperger’s became a fear, a phantom, and most of all an excuse. The idea that I might have this “condition” lurked in my mind. It was why I messed up, the nuclear option. If someone got upset with me because I didn’t understand something or missed some hints they were trying to give me, I had, “Uh, I might have Asperger’s” ready. It broke up at least one relationship. It prevented several more from happening.
I was in a strange place. By that time, I’d made good connections — even friendships — with a wide variety of creative people. But other parts of my life felt paralyzed. My creative work was stalling. Setting and keeping any kind of schedule for myself resulted in overstuffed calendars and quick burnout. There were all the times I’d walk away from an encounter with someone new with the overwhelming feeling I’d done something wrong and had no idea what it was. If someone did get mad at me, I’d obsess over it, frozen in a moment of shame and self-hatred long after the other person had let it go.
I considered therapy. But good cognitive therapists were expensive, and it seemed wasteful to potentially drain what little money I’d saved trying to quell what I told myself were such minor neuroses. Surely I could just power through my own problems. In the past, times like these usually ended when I had enough work — school, employment, personal projects — to keep my mind busy, unable to obsess over small things and let myself get “nibbled to death by ducks,” as one editor put it.
Ultimately, I persuaded my doctor to prescribe me some generic Zoloft. My parents were terrified I was going to have the miscellaneous “suicidal thoughts” the prescription warned about. I didn’t, but it was a mixed bag. On the one hand, I felt a bit calmer and had more luck with work and dating. On the other hand, I still faced problems with depression, falling asleep in the middle of the day, keeping an irregular schedule. I’d been dieting for the past year and change, but now I had trouble taking and keeping weight off. Worst of all was that I couldn’t feel excited on almost any level — I’d sit through TV shows and movies like a stone. I rarely felt attracted to girls. When I kissed one, it was like kissing my own hand. There was no sensation, just motions. Zoloft, it seemed, could get me a second date but didn’t make me a lot of fun on the third.
I started skipping pills or going off my prescription for a while entirely, saving a month’s refill so I could use it if I knew I had a stressful period coming up. Inside my brain, the relief at not having to face “judgment” was twisted up with self-hatred and fear, along with a perverse sense of defiance. If I could succeed without the pills, that was proof that I’d “won.”
When I went off the stuff, it felt like second puberty — I’d go from clean-shaven to Wolfman Jack in a week. I felt excited again. I also felt like I was on a toboggan, headed down a snowy hill, accelerating faster and faster toward a brick wall.
And I couldn’t get off, because I liked the feel of the rush.
Cleaning out my email folder, or seeing old social media posts on Timehop, it’s amazing how many times I made the same complaint over and over: I needed to get something finished, or I needed a new project. I needed to get out of the house more, to spend more time around people, to stop being so hard on myself. Something needed to change in my life, or I needed to change in some way. I said so over and over, but I didn’t know how.
In January 2015, I started what I knew was going to be a stressful period. I was teaching a volunteer course for retirees once a week, taking a graduate course twice a week, and taking shifts at a used toy shop other days of the week, on top of my freelance writing and creative work.
It was a lot, but I knew I could handle it.
It took exactly two weeks for it all to collapse.
Exactly one year ago today, I showed up for a shift at the used toy shop and was promptly fired. I’d been there two years, I was told, and still had no sense of what to do when they didn’t explicitly tell me. I had all these other gigs writing and teaching, they said, and this clearly wasn’t a priority. Worst of all, customers had complained: They preferred not to come in when I was behind the counter, ready to chat their heads off. Fridays, when I worked, used to guarantee the company a few hundred dollars of retail at least, and now there were records of multiple Fridays with no sales at all. I was costing my boss money because people didn’t want to be around me. I’d failed at what was a fairly easy job because I was me. Because I wasn’t fit to be around other people.
My parents were due to arrive for a visit in two hours.
I went home and felt all the symptoms that had hit me in the past take over: crying jags, nausea, coughing fits. I knew I wasn’t sick; these symptoms were all in my head. But I didn’t know how to turn them off.
When my mom and dad arrived, they were understanding. But I told them I couldn’t go on like this. I needed to get therapy and get on medication again, this time prescribed by a mental health professional.
Research was done. Dr. P. was recommended as a specialist in the area, good at diagnosing spectrum disorders and helping people organize their lives. A few weeks later, I was answering questions about whether I picked up and smelled toys as a child.
Decades after I’d begun diagnosing myself, it was official.
But somehow I didn’t feel “labeled.” That sense that I was “wrong,” that I was somehow deficient, wasn’t there anymore. Instead, I finally understood the areas where I had problems, and why I had those problems. Now I could work on them.
The psychiatrist Dr. P. sent me to said that we could try Strattera, the ADD medication I’d attempted in college, in conjunction with Prozac. Tony Soprano and “Here comes the Pro-Zack” jokes flashed through my head. The insurance company rejected Strattera, but they told the psychiatrist I could do Adderall and see if it worked. “If you have a bad reaction, we can apply for Strattera again!” the psychiatrist said, cheerful.
It was a lovely thing to know I was taking a medication with the expectation that I would have a bad reaction to it, but it turned out I didn’t.
The first month was rough. I’d wake up throughout the night, an odd change from wanting to sleep all day. Instead of eating whenever I got stressed or anxious, I wasn’t hungry, something I wouldn’t realize until early afternoon, when the dizzy spells kicked in.
For the first time in who knows how long, I found myself doing things like getting up at the same time every day and eating breakfast. Weird.
Other things stuck around. The nervous coughing fits I developed with my firing continued, but a friend noted that they seemed to vanish when something held my attention. When they happened again, I’d find something to focus on, like a song or a TV show or something to read. Eventually they vanished, and when I would cough nervously about something I found I could overcome it right away.
Little things became easier, too. Arguments with other people didn’t stay in my head months after the issue had been resolved, reminders that I could push other people away. I started dating more, and if it didn’t work out, I was able to move on with some new understanding. Errands were done. Garbage got taken out. Annoying forms were filled out, instead of lingering on my desk for months.
If I had a weekend with some downtime, I felt an actual compulsion to leave the house or call a friend, instead of simply sitting around.
Within a few months, I realized that while I still didn’t feel the excitement I could with no medication, I could still enjoy things. I could follow the plots of movies and TV more easily, and when other people spoke, I could listen without feeling an absolute, overwhelming need to blurt something out.
I asked Dr. P. what this feeling was.
She said I was “content.”
I kind of liked that.
The strangest part of all this has been that being honest about my autism has left other people unfazed.
It’d come up, probably because I found some excuse in the conversation to mention it (“Oh, I know what you mean about hating small talk. I’m a little on the spectrum, so…”), and there’d barely be a reaction. I’d watch people’s faces. No surprise. No discomfort. And the conversation would go on.
Admitting that there were things I didn’t understand somehow created a new common ground. No one fully understands everyone else, or the world around them.
Many people try to do what I did and “power through” this with false confidence and assertiveness. Sometimes it works. But to know you have a weakness, to acknowledge it, and to treat it as a “what the hell” thing —that’s almost more powerful.
For most of my life, I’d been afraid discovering I was on the spectrum meant I was cut off from being able to maintain friendships, professional contacts, a romantic connection. It was the wall I was always afraid I was headed toward.
But the real wall was my fear, of facing not what I was but who I was. And my parents had been right — I was doing well before. I just needed to find a way to let myself enjoy my successes and build upon them, instead of feeling like defeat was inevitable.
In the end, 2015 was perhaps the best year of my life. It wasn’t the major stuff — the new job I got teaching, getting accepted full time into the graduate program — it was just that I was able to feel a sense of momentum, of moving forward.
Part of me wishes I’d had this happen a decade before. But the experiences I had without therapy and medication helped prepare me for the setbacks I faced, and granted me the maturity to face them.
My story isn’t typical. The autism spectrum is a broad and constantly redefined place, a frontier of the mind that’s still mostly wilderness. The revised definitions of it in the DSM-5 just a few years ago are still controversial — it’s both easier to diagnose aspects of the spectrum in people and more difficult to determine if a formal diagnosis is necessary, if it’s even a “problem.”
In my experiences I had the benefit of privilege, and of personal choice. No one forced me to get diagnosed or to take medication. I simply reached a point in my life where I felt like I could become a better version of myself if I confronted the areas of my life that seemed to hold me back.
I can’t say that my life is perfect. I have a great deal I need to accomplish in terms of better dieting, regular exercise, and being more productive in my writing. Some anxieties still hijack my brain, and dating and relationships remain, as they do for most single people, confusing.
But I feel like I’ve learned. And I’m still learning. Learning is all about realizing possibilities in the world around you, and right now those possibilities seem extraordinary.
In August 2015, Dr. P explained, slowly and with caution, that she was moving out of state to join a new practice and to be closer to family, so I’d need to change therapists, and that she’d help with the transition. She was relieved when my main reaction was to tell her I understood and congratulate her on the new opportunity. She called me a “success story.”
“A few months ago, you might have felt … destroyed by upheaval,” she said.
“Things change,” I replied, and I meant it.
Zack Smith has written for numerous websites and publications including Newsarama, Indy Week, Paste, and USA Today. He is the author, along with artist Rich Ellis, of the acclaimed all-ages comic The Stars Below.
I was 35 when I discovered I’m on the autism spectrum. Here’s how it changed my life.
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