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Why I Find Functioning Labels Problematic as Someone on the Spectrum

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Like many other autistic people, I grew up without knowing I am autistic. When I tell people I am, the reactions are always the same:

“You actually have Asperger’s, right?”

“But you’re definitely high-functioning.”

Which is not right.

I am an autistic psychology student. I was diagnosed at 18, by coincidence (I’m 20 now). And as such I know the term “Asperger’s” has already been erased from the diagnostic manuals (DSM-V and ICD-10) and professionals don’t use “high- or low-functioning” most of the time.

When I got into therapy, I went because of other things I was struggling with and even though I’ve known my entire life that I was different than everybody else, I would’ve never suspected this feeling to be real — meaning I never suspected to be autistic.

When I was younger, I was suspected to have AD(H)D. My parents, however, who realized I was what you may describe as a “gifted child,” refused to get me checked. I don’t know if it was because they didn’t want to acknowledge that even a “smart” child can be disabled or if it was just because they wanted to see me as “normal.” However, ignoring a problem doesn’t make said problem go away.

I was bullied for years, blatantly tortured even. The other kids wouldn’t stop calling me names, they would take my things and spread rumors about me until everyone treated me like I had some incurable disease you could catch if you so much as breathed the same air as I did.

I never understood why. I never understood what separated me from them. And no matter what I tried, no matter how much I changed myself, I could never get them to even accept me.

Looking back with the knowledge that I am autistic explained a lot to me. It explained why the other children treated me this way – because I talked too loud and too much without even knowing. I cannot stand silence around a person I do not know that well because it gives me anxiety – I don’t know what they are thinking and feeling if they don’t tell me. This alone always scared many people off, and it still does.

My diagnosis explained why every day is like a fight for me.

When I wake up, I put on a mask, a face for everyone else to see. I hold back many of the things important to me because I know other people don’t care or want to hear about them. I try to be polite; I try to reduce my honesty. I give my best to sit still in class, to keep silent and not talk to the person next to me. But most of all, I try to not give away how hard this is for me. How hard it is for me to not do all these “typically autistic” things, how much extra energy I have to put into sealing this side away and how much anxiety I have about being “found out.” Most of all, I fear people looking behind my mask and seeing who I really am only to cast me out once again because I’m “weird.”

I don’t talk openly about being autistic in the field I study and want to work in because of the many prejudices against autistic people. So each and every day, I try to push my autistic traits away in order to be taken seriously, to not be denied my ability to work as a mental health professional because of a disability I was born with without others even considering my individual abilities. I want others to judge me by who I am as a person and not the diagnosis.

In all the years of not knowing I am autistic, I learned to wear my mask perfectly. People notice something is “weird” about me — different, but not different enough to consider me autistic. Just different enough to consider me a person they would rather sometimes talk to than become friends with.

So when people tell me I must be “high-functional,” that I can’t be “that autistic,” because then I would’ve been diagnosed earlier or something else, they are dismissing all of my struggles.

They can’t judge how autistic I am or am not because they never see me how I really am; they just see what I show them. They don’t know that even the people around me always saw that I’m different but never knew a word for it and stopped me from finding out there is one. They judge me by the ability to act like one of them — an ability I only gained because I’ve been mistreated long enough for who I am.

Calling me “high-functioning” is nothing but judging me by my ability to act as if I’m not autistic, by my ability to pretend to be someone I’m not. Because if I would decide to put that mask aside, to only take one day off and be myself… they wouldn’t call me “high-functioning” anymore.

They would be surprised at how much I would avoid looking at their faces, how I wouldn’t initiate a conversation, how I wouldn’t hug them as a greeting. They would be terribly annoyed by my constant moving, constant talking and rambling.

The only thing that divides me from an autistic person who others may describe as “low-functioning” is that I wear this mask in front of others and shield them from seeing the immense price I have to pay for that. Because I am able to pass as “one of them” and because I am noticeably “smart.”

Calling me “high-functioning” is nothing but dismissing my struggles, dismissing the extreme effort I put into the smallest things to get as far as I got now. And calling others “low-functioning” is nothing but shaming them for being as autistic as they are, for not being able to or not deciding to put on the mask that I force on myself.

To be completely honest, I sometimes envy them for their bravery to be themselves. To be openly and proudly autistic. And I wish I were brave enough like them, too.

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Thinkstock photo by IG_Royal

Originally published: May 18, 2017
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