On "Playing Normal" After Being Diagnosed With Autism Spectrum Disorder

According to the National Alliance on Mental Illness, approximately 18.5% of adults in the United States experience mental illness every year. That's a significant portion of our population—one in five people—yet the stigma and misunderstanding that surround mental health remain rampant. That's why in honor of Mental Health Awareness Month, we put the call out to our readers to share their own experiences with mental illness and other conditions: their victories, their struggles, and what it's really like to negotiate a society that makes misguided assumptions about who you are based on an arbitrary definition of the word "normal." Our series My Life With highlights the raw, unfiltered stories of women who deal with anxiety, bipolar disorder, postpartum depression, and more, all in their own words. Below, Bronte Sparrow offers an intimate look inside her diagnosis of autism spectrum disorder.

I sit in the therapist’s room on a squishy, maroon armchair. It’s almost exactly what I expected the room to look like, and same goes for her: a friendly, slightly hipster-ish woman with more degrees than me in fields I semi-understand sits across the room. Her matching armchair is next to her desk, laden with books from Freud, Lacan, and others I can’t quite make out from where I’m sitting. All I know is that a lot of books is a good sign; it means she likes reading, like me.

I haven’t been to see a psychologist since high school, almost six years ago. I asked for this referral because I know I’m definitely not coping with the events of the last eight months very well. Long story short, I’m sitting at a 60% to 80% risk of developing multiple sclerosis, and I haven’t really had a clean bill of physical health since July 2017. Add that into daily life and all that goes along with it, and things have been feeling a little… heavy, to say the least.

Psychologists don’t frighten me, though, or make me uncomfortable. I’ve been exposed to enough of them and their waiting rooms, clipboards, pens, notes, and quirks that it would take something significantly strange to unnerve me. My first rodeo would’ve been around the time I turned 6, when my parents and I started the journey toward a diagnosis.

I’m not ashamed of having autism spectrum disorder. Growing up with it didn’t necessarily make things easy, but it certainly didn’t make them dull.

Up until recently, my condition would have been labeled as Asperger’s syndrome, but since it’s come out that Hans Asperger cooperated with Nazis and all that they stood for, I and others have chosen to distance ourselves from that label in particular.

Everyone is on the spectrum. Everyone. I’m serious. I just happen to be further down one end than the other. “High-functioning” is the term, and I kind of like it; it makes something not quite fun sound like a prize or praise. There are things about it that I do enjoy. Objectively speaking, I’m pretty smart. I’ve always succeeded academically (athletically, not so much, unless participation ribbons count), and I have a memory so thorough it frightens me. I believe having ASD forces me to be a more thoughtful, considerate person. In my case, I’m highly empathetic, and that’s a double-edged sword on its own.

I say “forces” because I’ve trained myself to “act normal.” What is normal, you ask? I honestly don’t know how to explain it. The closest thing I can compare it to is “passing.” I’m still a little quirky, but I can pass as an average 24-year-old. The majority of people I meet and interact with don’t know, and would not know, that I’m on the spectrum. Speech pathology, psychology sessions, and learning and adapting from the people around me mean I’ve got the act of acting like others down to something of an art. I call it my “background program.”

I’m constantly and relentlessly checking, double-checking, and triple-checking my behavior and my words. It’s become almost second nature now, though there are times I’m aware I’m doing it and try to ease off because it’s exhausting. I don’t know if I have the right words to explain how tiring it is to always, always examine yourself under a microscope, looking for even the tiniest sign of a slipup.

People with high-functioning ASD don’t always react the right way in any given context. They can be egocentric—not to be confused with being selfish—and they have areas of special interest. Some achieve savant-like status in those special interest areas; think Einstein or Sheldon Cooper from The Big Bang Theory (if you must) or the lead of The Good Doctor. One of the biggest hurdles is a difficulty to communicate thoughts or feelings clearly and to navigate emotions. When I was younger, this could manifest as a tantrum—lots of yelling, tears, frustration, lashing out—because I’d be overwhelmed by my own emotions and thoughts. Overstimulation is another big factor too, although now that I’m older, I handle all of the “signs” a lot better. I still get twitchy and easily irritated by repetitive noises, I’m sensitive to scents, and touch is a big thing as well. I don’t like the feel of certain fabrics, and I don’t like people I don’t know very well being too close to me. Even those I do know well, I don’t always want to interact with physically.

My “background program” runs through all of those things, and it can be suppressing those things at any given time. I’m always worried I’m going to offend someone or do or say the wrong thing and end up in trouble or alone or excluded or hurt. I was bullied throughout primary and secondary school—in high school, the bullying got so bad that I developed symptoms of post-traumatic stress, low-grade depression, and, the one that really stuck, anxiety.

Having ASD means you’re a little more predisposed to developing anxiety, as a general rule. Add in a few months of intensive bullying and conflict, and you end up with a perfect storm.

If I had to pinpoint when my anxiety began to peak and impact my daily life, it would have to be late 2014. My first longterm relationship began to break down and that, combined with work stress and the pressures of life, meant that I was almost constantly on edge. At its worst, I wasn’t sleeping and I would make myself physically sick with stress before work or after fighting with my ex. Panic attacks punctuated the months leading up to the official end of that relationship, and in the year that followed, my own behavior and thoughts became a little damaging.

Over the course of the last few years, I’ve managed to keep my anxiety pinned down. I think that as my physical health has started to face some challenges, that grip has begun to slacken. Being diagnosed with ASD had always made me feel a little broken; it’s a weird feeling to describe. I don’t want to be different, because ASD is a part of who I am, and I like that person and so do a lot of other wonderful people in my life. However, I do sometimes think that a lot of my life (and the lives of other people) would have been easier, less messy, less complicated, less obstructed if I wasn’t me.

I say the word “broken” aloud to my new therapist and her brow dips in concern. Logically (I love logic; I love intellect; I love answers; I love crystal clear problems and solutions), I know that I am not broken, not really. Emotionally, I question that.

Most of my session is spent giving this poor therapist the unabridged draft of my life thus far. The word she pulls out from all of my babbling is trauma. It’s a big one, but it’s there, and it’s true. This is how I imagine it’d feel having to tell the paramedics you’ve taken three doses of ecstasy.

Trauma. It’s a weird word. I associate it more with car accidents or life-and-death situations. But as things unraveled with my ex, I felt as though I was dying, so maybe I do know something similar to that. My panic attacks feel as though I’ll never breathe again. They’re few and far between these days, but the memories and feelings that trigger them are never buried too deeply.

Since August 2017, I’ve been relying on breathing techniques, practicing gratitude, meditating here and there, and doing my best to say no more often as a means of dealing with the residual effects of post-traumatic stress. I’ve applied the same techniques to the fresh anxiety my neurological issues have brought on. I’m a smart girl but seldom follow my own advice. I can’t count the number of times I’ve told people to seek real help for their problems and yet there I was, paralyzed by fear, stressed out of my mind, and feeling my most worthless and pointless and expecting it all to fix itself with a week’s holiday in Bali. (Author’s note: A trip to Bali that dissolves into a hospital stay does not, in fact, fix any mental health struggles.)

Day to day, playing normal comes naturally. It’s something I do without even realizing I’m doing it; I’m halfway through before I know what’s going on. It almost feels like I’m a spy or an infiltrator. I want to know why that girl was able to make that joke at that time and have people laugh; I want to remember that I should laugh at certain comments. I need to work out why that man chose to say that in the way that he did, and I try my best to mimic the same tone the next time I say something similar. Scanning, searching, and trying to pre-judge peoples’ facial expressions and body language takes up a whole separate part of my brain, daily. It’s tiring. But it’s working.

I have never let my ASD hold me back from something or stop me from pursuing something I truly wanted to do. I’d like to think my background program has, in some way, made that possible. What I want now, and what I think I need to do now, is to work on turning that program off sometimes. I’ve slowly realized that the anxiety and pressure that I put on myself won’t ever truly release or let me be if I continue to run my life like some high-stakes secret service mission instead of just, well, life.

My therapist shifts in her seat and looks up at me. “Bronte, I work mainly in cognitive behavioral therapy techniques: working on your thought processes and coming up with techniques and mechanisms to change your thinking and change your handling of stress and trauma. Does that sound like what you’d like to do?”

Immediately my background program tries to comb my therapist’s face for signals, and I get an instant replay of her voice in my mind, and my hands tighten around the wadded tissue in my palm. I tell the program to hush.

I nod. “Yes, yes it does. I think I’d really like that.”

“Great. Let’s begin.”