Learning to let go of stigma behind my disability

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Karissa Ho/Staff

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I was 12 when I found out I was autistic. 

Upon receiving my diagnosis, though, I wasn’t really surprised. If anything, I was relieved; receiving a diagnosis is a privilege in a variety of ways, from being able to receive proper accommodations to having the validation that there’s a reason behind your symptoms. 

However, I quickly made the decision that I wasn’t going to share it with anyone. I knew the way my peers would — and already did — perceive the disability, and I didn’t want to become a target. 

Even though I knew what autism was, I’m not sure I really knew what that meant; all I’d ever heard were negative stereotypes associated with the first Google search that reads “impaired communication and social interaction.” 

Autism is, at its base definition, a developmental disorder that impacts the nervous system, with symptoms typically manifesting in different learning, behavioral and communication techniques than those of people who aren’t neurodivergent. 

But autism doesn’t have a specific “look.” As a disorder that impacts the nervous system, it primarily impacts one’s behavior, not their outward appearance; the condition is a spectrum, not a blueprint. 

With seemingly helpful organizations such as Autism Speaks that once advocated to “cure” autism — as opposed to searching for coping skills or helpful techniques — the disability itself is often portrayed as a burden to get rid of. 

Similarly, a lot of misinformation may be attributed to the fact that the majority of research on the disability is conducted on boys; while autism is four times more common in boys than girls, according to a 2013 study by the National Center for Biotechnology Information, this statistic can likely be attributed to the fact that girls are more likely to go undiagnosed altogether.

And I’m sure we’re all familiar with the claim that vaccines cause autism. The doctor behind the study, Andrew Wakefield, theorized that the measles, mumps and rubella vaccine was linked to autism, which he based using a sample size of 12 children; and, despite several refutations — including Brian Deer’s series of articles in The BMJ, in which he claimed Wakefield misrepresented the findings of every single child in the study — the stigma has persisted, which has been especially prevalent amid the ongoing COVID-19 pandemic. 

The first time someone ever explicitly pointed out that I was autistic was during my senior year of high school after my friend mentioned it was “so cool” that I had an encyclopedic memory for birthdays, to which someone else in the group asked me: “What, are you like autistic or something?”

Despite the somewhat jarring intentions of his response, it almost felt refreshing to hear it aloud. That is, until everyone was in disbelief that he “would accuse me of such a thing” — not because you don’t go around asking people about their disability history, but because he asked me if I had that disability. 

After a while, I became comfortable enough to talk to a few friends about my diagnosis, most of whom responded with things along the lines of: “Really? You? I couldn’t even tell”; “don’t worry, that’s not a big deal”; “oh, if you are, then I probably am, too.”

Despite their likely well-intended responses, they were likewise rooted in ignorance and ableism. While I may have tried and been OK at masking — a technique that refers to intentionally learning and acting out neurotypical behaviors — I was still autistic. They may not have treated me negatively like I had worried, but there was stigma in their responses and no acknowledgment of what being autistic actually meant. 

Autism may look like impaired social skills, but there is so much more to it than that. For me, I’m overly obsessive, impulsive and compulsive; I often come across as rude, regardless of my intentions; and I get overstimulated — which immediately manifests emotionally, usually as anger — easily, by excess noise to a change in my routine. 

By taking in the plethora of stigma and misinformation surrounding my disability from organizations, medical communities and my peers, I refused to acknowledge my diagnosis as anything more than an assistance to help me mask.

While I thought I was protecting myself by hiding my disability and hoping that I could just say it but not embody it, those things only do myself and everyone else around me a disservice: Accommodations require validity, understanding and action. 

Even with the additional stresses and difficulties that come with my experience of autism, it is probably responsible for my attention to detail and ability to remember birthdays — and nearly every rule in The Associated Press Stylebook, which comes in handy as The Daily Californian’s night editor. 

I cannot speak for every person in the autism community, the same way not everyone who resides on the spectrum can for me. All I can do is attempt to overcome my internalized fears and outward stigma to remind myself that there is no shame in my disability — for myself and for others. 

Stella Kotik is the night editor. Contact her at [email protected]

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