What People Don't Realize When They Hear ‘Autism Is a Spectrum'
Society’s perception of autism has appreciably expanded over the recent years. Gone are the days where people think all autistic people are Raymond Babbitt from “Rain Man.” These days, it’s common knowledge that autistic traits vary in intensity and come in different combinations.
In other words: autism is a spectrum.
And yet, far too often, our understanding of the spectrum ends at a very surface level. People look at me like I have two heads when I tell them that there is more than one explanation for so-called “autistic behavior,” that yes, even if you’ve come across two autistic people that act very similarly, the thought processes driving these behaviors may be vastly different.
Just like much of the public, I had never considered these distinctions — until I found myself grappling with my own diagnosis.
Being a “rare case,” I don’t see experiences like mine represented in the media, let alone in autistic circles.
When I first received my diagnosis of autism (known as Asperger’s at that time) at 8, I was pretty much a textbook case. I preferred to talk to adults than kids my age. At recess, my teachers often found me curled up at the corner, reading encyclopedias made for much older kids. I liked people and even had a few friends my age, but I only wanted to talk about dogs — or else, I’d get bored.
I often found myself stuck in my own head. Like many autistic people, I experienced alexithymia, or difficulty identifying one’s own emotions, and I had a hard time making sense of grey areas and contradictions. I had to do things a certain way — or else I’d get frustrated, sometimes to the point of tears. When I got a puppy, for example, I insisted that her leashes and collars had to be certain shades of pink.
As I entered adolescence, my brain shifted gears. My ritualistic tendencies tapered away, and I became attached to social niceties that I previously did not care for. I began to adopt the mindsets of my non-autistic peers.
It’s certainly not unusual for autistic people to display fewer autistic tendencies as they age. For many autistic people, these changes involve studied efforts to conform (also known as “masking“). Case in point, Temple Grandin once said: “The thing about being autistic is that you gradually get less and less autistic because you keep learning, you keep learning how to behave. It’s like being in a play; I’m always in a play.” I, however, don’t resonate with that trope. I never felt like I put on an act. Ultimately, I understood virtually everything typically developing kids could — just at a slower pace.
Nonetheless, I still face obstacles. As an adult, my biggest challenge is communication. Though I’m outgoing and talkative, I appear to miss social cues, so my autism diagnosis is no surprise for those who have spoken to me, face-to-face, for a few minutes.
You may be surprised, though, to learn why I act the way I do, because these are not the reasons you might expect from someone with an autism diagnosis. I don’t always make the “right” faces or talk in the “right” voice, but it’s not because I don’t know what people’s faces and voices indicate — it’s because my body doesn’t always cooperate with my mind, even though I understand. Sometimes, I blurt out awkward comments and go on tangents, but it’s not because I don’t see how or why that could be awkward — it’s because my mind moves too fast. I also have other social issues, but none of them reflect my ability to comprehend social norms or social cues (which are indeed real struggles for many autistic people — just not for me).
“You’re a rare case,” a therapist once remarked.
“I know,” I sighed.
I don’t relate to most autism cliches and metaphors floating around on the Internet, even when they’re coming from autistic people themselves. Sometimes, I feel incredibly alone in my experience of autism. As a result, I’ve struggled to accept my autism diagnosis. I didn’t think it was possible to reconcile my internal experiences with this diagnosis.
As a teenager, I fought my diagnosis.
I was 15 when I first started questioning my autism diagnosis. One day, I found myself browsing through a website about ADHD and learning disabilities, after learning that two of my friends had ADHD. It was the first time that I actively sought out information about a disability other than autism, and damn, it was eye-opening. Long story short, it occurred to me that all these things I’ve previously chalked up to autism could well be explained by other diagnoses — I was thinking ADHD, and some combination of learning disabilities. Perhaps, autism was only a small part of my disability puzzle and not the whole thing, like I’d been led to believe.
I went to my parents and began to probe. I wanted to know if I was tested for other, similar disabilities when I was diagnosed with autism. I wanted to know what my mom meant when she said I had “ADHD tendencies.” Have I ever been formally diagnosed with ADHD? Was it a matter of technicality (autism and ADHD couldn’t be diagnosed together until 2013), or did I simply not qualify? I wanted the whole saga, timeline and all.
I was determined to find out which of my struggles could be explained by the autism diagnosis — and what couldn’t. I decided to refresh my knowledge on autism. I read articles, blog posts, and YouTube videos created by other autistic teenagers and young adults. I listened to dozens of people describe how autism influenced the way they think and feel. I couldn’t relate, beyond a surface level: for example, many of these people said they found school very difficult, and I did, too, but so do kids with other disabilities. My doubt only grew from there. Maybe I wasn’t autistic. At all.
Soon, I told my parents that I wanted to speak to a doctor.
“Asaka, you already have an IEP. You have all the help you need,” reasoned my mom, “Why do you care so much about labels?”
“Because I need to tell everyone,” I said.
My parents shook their heads.
The more I fought my diagnosis, the harder my parents latched onto it. After all — what typical teenager would investigate their medical history in their free time and report it back to their classmates? My parents could only see these actions as a direct result of my autism. They reckoned that I spent so much time thinking about my disability because I had narrow interests, and that I cared so much about finding the “right” label because I was a rule-oriented, black-and-white thinker.
My therapist was one of the few people who saw my quest as what it really was: a desperate attempt to negotiate with a world that ran on knee-jerk assumptions. And my parents, as much as they meant well, were a part of the problem.
Language is a powerful thing. I knew my autism diagnosis wasn’t just a piece of paper handed to me — it was a lens through which people interpret my behavior. It was inescapable. Though I’d mostly grown out of my shrieking preteen self-consciousness, I couldn’t ignore the knowing looks. “Everyone in the school knows that you have autism,” I remembered my classmate informing me. It wasn’t that I felt insulted, but I felt misunderstood. I just couldn’t relate to many of the things associated with the word “autism.” And while my concerns regarding other diagnoses weren’t unfounded (years later, I’d be properly diagnosed with ADHD), it also served as a wedge, a way to distance myself from my autism diagnosis. More than anything, I wanted the permission to suggest that, well, actually, I’m not autistic, I have another disability.
That year, I got re-tested. I’d convinced my case manager at school to write a referral to a neuropsychological evaluation, and my parents, though bewildered, wanted to support my self-advocacy — something that they have encouraged all my life, thankfully.
I took an IQ test and an academic assessment, and then spoke to a doctor. He asked me and my dad some questions.
“You have autism,” he said, less than halfway into the appointment.
It wasn’t a concession, or some grand, deliberate conclusion. He sized me up like it was nothing, like there was a big sign plastered on my forehead that said “I’m autistic” and I’d asked him to read it.
I was tired of fighting, but I also had lots of questions. Where do I go from here? Do I have to say that I’m autistic? What does it even mean to be autistic?
These thoughts soon faded in the background, but they marinated, and I’d be reminded of it, every once in a while — like when someone in the audience asked me “What’s your disability?” when I gave a presentation on disability awareness, or when a questionnaire asked me to describe the nature of my disability.
Yes, I have an autism diagnosis — but that doesn’t say much.
Eventually, I realized that it wasn’t my autism diagnosis that was wrong, it was the assumptions attached to it that were wrong. The current edition of the DSM, the book that doctors use to diagnose mental conditions, states that a person should be diagnosed with autism when they demonstrate “deficits in social communication and social interaction” and “restricted, repetitive behaviors,” currently or by history. That sounds about right. The doctor was doing exactly what he was supposed to do.
Though I couldn’t change my diagnosis, I could change the way I speak (and write) about my diagnosis. Today, I’m a writer and a disability advocate. When I talk about disability, I only mention my diagnoses when it’s relevant to the story. When I discuss my needs and limitations, I opt for specific, straightforward descriptions, rather than using “my autism” as a shorthand. Sometimes, I have to put myself first, and these shifts in language center my personal experiences, as opposed to some abstract, theoretical idea of autism. I don’t have to renounce my autism diagnosis in order to do that. Wasn’t I the one who said language is a powerful thing?
In the past, I used to roll my eyes when people said that my diagnosis doesn’t define me because it was so painfully obvious. Any suggestion that I downplay my diagnosis made me defensive: it’s quite obvious that I’m a human being, first and foremost — why is it my responsibility to remind people of that?
I now understand that de-emphasizing my diagnosis can be an empowering gesture. It doesn’t have to be about placating other people. If there’s anything I’ve learned, it’s that I can’t rely on a diagnosis to tell the world what I can do, what I can’t do, and what I need. I have to do that.
At the end of the day, psychiatric diagnoses are socially constructed. Don’t get me wrong: brain structure and chemistry have a real, meaningful impact on people’s lives, and it’s crucial that we learn about it, think about it, and talk about it. That being said, frameworks evolve. Terminologies come and go; classifications grow and shrink. Nothing is set in stone. I can only hope that our language will refine, alongside our knowledge.
In the meantime, I want the world to remember just how broad a singular diagnosis can be. Saying autism is a spectrum doesn’t just mean that autism looks different on everyone — it also means that autism, at least under its current definition, is felt and experienced differently by everyone.