‘I Was Diagnosed With Autism at 13. I Didn’t Find Out Until My 30s’
It’s remarkable what you can do when you’ve never been told there is a reason you might be struggling. I was diagnosed with high-functioning autism at 13, but because I never knew, I’ve spent most of my life figuring out how to work around obstacles I did not know existed.
I grew up in a small town north of Seattle, Washington. After my parents’ divorce, we rarely stayed in one place for more than a couple of years. Name calling, sexuality slurs, damage to personal property—bullying made my childhood difficult.
My wiring made it hard to connect, so I had an aura of aloofness. And, it probably didn’t help that I was capable of differential calculus in the fourth grade.
I would often say something, meaning it one way, only to realize how it was misinterpreted. But eventually I learned to listen to my instincts. Over time I found a tribe of misfits to connect with, and build some semblance of a social group.
I am also prone to overloading—I cry easily, melt down and stim, meaning I engage in repetitive physical behaviors when I am nervous. Think about trying to concentrate on something while a small child pulls constantly on your leg, without yelling in frustration. That’s how I feel while carrying out everyday tasks.
Over time, I’ve learned to mentally filter my emotions somewhat so I can function. But on bad days? Cue the waterworks. When I was younger, I didn’t understand why I reacted this way, I just knew something was different. So to survive, I learned how to act “normally” around people.
When you’re autistic, hiding how you feel is tough, but I have gotten very good at camouflage. Camouflage is achieved when, by practice, you emulate the behavior of neurotypical people in public. I became so good at this mimicking normality that even autism professionals couldn’t pick up on it.
Discovering I have autism
Of all the things that have happened in my life, how I found out about my autism diagnosis was the worst. My eldest son was born around 30 years ago. Like me, he struggled with so many things that would’ve been red flags had I been informed about autism. From missing social cues, to struggles in class and bullying. It was happening all over again.
The first real clue was when my son’s special education reading teacher in middle school sent home a copy of The Curious Incident of the Dog in the Night-Time; a novel about a 15 year old boy with autism. It was written in such a way that it made me question whether I was autistic, and, sharing so many traits with my son, I wondered whether he could be as well.
It’s a hard read, but I think it was sent as a message, and my second wife and I got it loud and clear. We were working on arranging for my son to have an assessment to see if he was autistic when disaster struck. My son, who was 13 at the time, was arrested for allegedly making death threats at school.
When we investigated further, it turned out that my son had been taunted by another child and had attempted to make a joke out of the situation which landed in the wrong way. After hearing all this I was torn between laughter and saying: “Ah Jesus kid, what the hell were you thinking?”
But I knew that we needed to try and get a diagnosis for him quickly. Unfortunately, my insurance wouldn’t cover it. Luckily, my son’s biological mother had remarried and her husband had decided to join the U.S. Army after previously being in the Army Reserve. This meant we were able to pay for him to visit an autism center and get some answers.
My sons autism diagnosis
I will never forget sitting in the center, awaiting results. The counselor came in with a concerned look on her face. For the record, I still have trouble reading people, but part of camouflaging is having overlays to do what other people do normally.
“Mr. Ogden?” she said.
“Your son is high functioning autistic.”
I began to cry.
“Are you ok?”
“No. If he is, I know who gave it to him.”
Later that day I emailed my mother. Her reply still cuts me to the bone.
“That’s interesting. That’s what you were diagnosed with at 13”
Rage and fury ripped through me. I remember trying not to grab my computer monitor and hurl it through my bay window. Disappointment, betrayal, guilt, failure—I felt so many emotions. But strangely, I also felt a sense of peace. I finally knew why I behaved differently to those around me.
After my diagnosis, my current wife and I played a first-person shooter game together, called Warframe. The developers of the game have suggested that main character, named Rell, struggles to Identify emotions in himself because he is autistic.
Part of the quest in the game is to look at a facial expression and choose which emotion it represents, which is what I had to do when I saw the doctor who diagnosed me. My wife breezed through the questions, but it took me longer, so she stepped in to help.
“It’s that one,” she said.
“Yup got there,” I replied.
“It’s that one.”
“Just figured it out.”
After a couple of minutes of this, my wife gently collected my chin in her hand, stared at me and asked: “You can’t tell, can you?”
The look she gave me had a mixture of horror, shock and admiration that I will never forget. It was like someone had lifted a veil from over her eyes and she could see me, in all of my struggles for normality, for the first time.
Something else happened shortly after the email from my mom, which helped me cope with the news. My son asked me a pointed question: “What, exactly, does this really change?”
I was in my mid-30s when he asked me that question. The answer is both nothing— because the world doesn’t care—and everything. I finally understood why I behaved the way that I did, and knowing why gave me insights on how to better self-regulate and self-monitor. In the real world people expect you to do better, so having a reason helps to ease the judgment.
Learning to deal with my autism
I struggle every day. It takes a lot out of me to act “normal” in public. Some people in my life know, because as I put it: “If I’m acting like a 3-year-old that has their blanket taken away and I need a nap, it’s my wiring.”
Learning that I was autistic opened my eyes to others who deal with this condition. Daryl Hannah, Sir Anthony Hopkins, and Dan Aykroyd are autistic, as is the character Spock from Star Trek. They all help me keep on going, because no matter if they’re real people or characters, they provide inspiration that you can have autism and still be successful in things that so many people will tell you can’t.
Meltdowns happen from time to time. Having good support networks helps a lot. You have people who you can trust to clue you in when you’re stuck in your head; to explain for you when you can’t advocate for yourself.
It also means that you aren’t alone, you have people who love you for who you really are. Most importantly I have learned to be patient with myself for being me. To make peace with what cannot be changed. To accept that I can’t be fixed, because I’m not broken.
Gerald Ogden lives in the in the Pacific Northwest with his wife and son.
All views expressed in this article are the author’s own.
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