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I got diagnosed with autism at 28 years old, and the difficult process changed my life for the better

Jun 9, 2021, 20:20 IST
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For me, an autism diagnosis felt like a relief.Marianne Ayala/Insider
  • I was diagnosed with autism at 28 years old, and it changed the way I viewed myself.
  • A lot of popular stereotypes about autism made it hard for me to realize I could be autistic, too.
  • I struggled with so many things growing up and in my adult life that now make sense.
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A few years ago, I was working as a reporter when I suddenly lost my voice.

I was preparing myself to approach random people to get quotes for my story but felt a wire inside of me snap. The packed venue, the people, the noise - suddenly my work seemed impossible.

Each time I tried to talk to someone, I found myself entirely unable to speak. The idea of someone even looking at me made my stomach twist.

Calling someone wasn't an option, so I hid in the corner and texted my closest contacts. I told them this was anxiety, even though that didn't seem to encompass what was happening to me.

My partner came to pick me up, and by the time we arrived home, I could talk again. But my energy felt zapped.

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Looking back, I now recognize this entire experience as an example of an autistic shutdown.

Undiagnosed autism, as I now know it, affected my personal life in so many other ways

When I look back on my childhood and teenage years, I mostly remember loneliness.

It was like everyone existed on the other side of a glass wall. I could see them, but I couldn't fully understand the life they experienced on their side of the wall. From where I stood, it seemed to be a little bit easier for them. They had their own challenges, I'm sure, but life seemed to make sense to them in a way it never had for me.

Friendships were a minefield. I didn't know how to start or maintain them.

I've had groups of friends suddenly stop talking to me and I could never figure out why. This sort of situation came up frequently, leaving me unsure about what I said or did to upset someone.

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At times, I didn't even realize a friend was mad until someone else told me so.

I would remain friends with people who mistreated me just to avoid going through the challenge of making new ones. Eventually, I'd be pushed out of my social circle for one reason or another and repeat the cycle.

Small things, like homework, constantly overwhelmed me. I would feel debilitated with anxiety, and then when I completed the tasks without disaster, I'd feel silly for blowing it out of proportion.

As I got older, I struggled to turn 'on' and fit into the working world

As an adult, I faced similar issues with work.

While people from my graduating class successfully balanced intense reporting jobs, I landed a few contract and freelance positions at newspapers. I struggled with turning "on" for jobs. It was exhausting but I told myself this was just part of professionalism.

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But these jobs only led to burnout. I neglected my health. I cried in office bathrooms.

Such burnouts had happened before, at other jobs and during my university undergrad. I thought my shutdowns were because I got stressed easily, and I hated myself for it. I kept pushing further.

But really, I felt so exhausted in these jobs because they required me to "mask" too much. As writer Nick McAllister, who was diagnosed with autism in his 40s, defined it, masking is "an artificially 'performed' social behaviour" those with autism use to try to fit in and connect with others.

Suppressing myself for hours at a time came with consequences, like an increase of shutdowns at home.

These shutdowns could start with something as simple as misplacing my keys, but they led to a spiral of self-hatred that in turn led to dissociation or even intense suicidal thoughts.

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I always wondered, why did I have to be this way? Like many undiagnosed autistics, I simply thought I was broken.

Even with years of antidepressants and therapy, so much about life felt nonsensical and unmanageable to me. I had been diagnosed with anxiety, depression, and body-dysmorphic disorder - but even that cocktail of mental illnesses didn't tell the whole story.

In my early 20s, I eventually gave up trying to figure out what was going on with my brain. But by my late 20s, autism made its way onto my radar.

The writer, Rebecca Dingwell.Rebecca Dingwell for Insider

Eventually, it occurred to me that I could be autistic when I started to learn about autism beyond the stereotypes

I realized that much of the stereotypical information I'd learned about autism when I was younger turned out to be untrue, or at the least, not reflective of the whole truth.

Much of the representation I had been exposed to boiled down to a specific brand of male calculus whizzes. The few autistic people I'd met weren't like me, so it never occurred to me that I could be autistic, too. (After all, I'm a woman who hates math.)

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My perception shifted even further when I began to follow people online who were sharing their experiences with autism - Annie Segarra (Annie Elainey), Robin Roscigno, and Sarah Kurchak. Even comedian Hannah Gadsby spoke about being autistic during her comedy special "Douglas," which popped up on Netflix last spring.

It was as if I'd finally found community in these videos and articles even though I was a silent, inactive member. Sometimes I'd cry out of recognition and relief to see people facing similar issues as me talk about how proud they were to be themselves.

But I still didn't have answers. With my partner's support, I set out with the intention of getting an autism assessment.

Getting diagnosed was expensive and difficult, but I felt like I could finally breathe

Since there are few resources for autistic adults in my region (and, as I understand it, in general) it took some time to find services that weren't targeted toward the parents of young children and teenagers. The clinic I contacted quoted me a cost of about $1,800 over three sessions.

The night before my third and final appointment, I couldn't sleep. I felt anxious that maybe the community I had felt so deeply a part of wasn't where I really fit.

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As I waited to hear the results, I thought of the many autism boxes I checked while reading Jenara Nerenberg's "Divergent Mind" - escaping through relationships (imagined or real), becoming exhausted by conversation, experiencing feelings of being misplaced and/or from another planet.

When the time of the appointment finally arrived, I asked the psychologist to cut to the chase.

"I'm making a diagnosis on the autism spectrum," she said. She then immediately rolled out comforting phrases, like, "This isn't a bad thing," and "Some of the best people I know are on the spectrum."

Apparently, she wasn't used to people reacting happily to this news.

As soon as I got back into my car, I let years of self-loathing pour out of me. Knowing I was autistic felt like when I realized I was queer - certain life experiences clicked and made much more sense.

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My diagnosis made me feel more human than ever. It meant I wasn't an alien. This was the closest to a happy ending I could imagine, as if a map had been placed in front of me with roads I had never seen before.

So many things that once caused me guilt or shame now stirred empathy for my younger self, wishing I could tell her she wasn't on a level playing field with those around her.

If I could speak to her now, I would tell her she doesn't have the right tools yet, but one day, she will. And it's going to make her so, so happy.

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