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Why Autism Functioning Labels Are Harmful -- and What to Say Instead

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Commonly, when you hear someone say they know someone who is on the autism spectrum, you immediately hear them continue the topic with one of the following: “Oh, but he’s high-functioning.” “She’s on the other side of the spectrum.” If you haven’t heard this in a everyday conversation, consider yourself lucky. But you’ve probably at least seen it in articles or organizations that are meant to support the autism population.

I get it, its been common terminology for a long time. It’s not entirely your fault if you use it, but now’s the time to learn and change the use of functioning labels for our autistic friends, family, and community. I am autistic. On my diagnosis paperwork, it does not say high-functioning or low-functioning. It just says autistic, yet I am constantly called high-functioning from doctors, support workers, family members and more. It sounds like a compliment, right? I might be autistic but at least I’m high-functioning, right? Wrong.

When you call an individual high-functioning, it can be used in a way to diminish their struggles, or suggest we don’t have it as hard as typically considered “low-functioning” autistics. But that’s not true. Everyone’s ability changes depending on the situation, their mood, the amount of sleep they’ve had, etc. I went to a typical high school and wasn’t in any special education classes after grade school. I can communicate verbally (most of the time), I’ve been working for years as a caregiver for other people with disabilities. I am now in college. Therefore, it may seem like I am doing pretty well and that I might not struggle as much as people with autism on other sides of the spectrum. But you don’t see the times when I am that person on the “other side.”

I have horrible meltdowns — head banging, screaming, crying meltdowns — that last over an hour sometimes. When I am uncomfortable and around new people, I lose the ability to speak and become nonverbal. I barely made it through high school. I can’t drive because of all the sensory input. I tried living in an apartment alone, but spent most nights with my parents because I couldn’t go to college all day and still manage to cook, sleep, and be alone after. I cry every time I go to the doctor because I can’t stand the lights and the smells. I rarely go anywhere alone because I’m afraid of people, of having a shutdown and sitting on the floor of a store. I cannot shower and get dressed within an hour timeframe. I can’t remember to take my meds unless someone tells me. If I’m in sensory overload, I hit myself, scratch myself, scream and pull my hair. And those are just some of my common problems from being autistic.

I definitely wouldn’t be considered “high-functioning” if people saw those sides of me. But I have the ability (sometimes) to hide those autistic traits of mine until I am home alone or with people I trust. If I feel sensory overload coming on at work, I hold it in until I am at home. That doesn’t make me high-functioning, it just means I’ve been bullied so much for being different, I’d rather put myself through physical agony to hide it as much as I can.

For the people who are considered low-functioning, I have been their caregiver. I have been their teacher and their friend. Autistics who are normally called low-functioning may need 24/7 care, may be nonverbal, may not be able to go to the bathroom on their own etc. But that doesn’t make them any less intelligent, wonderful or awesome. It just means they need higher support. Imagine hearing someone label you as low-functioning. It would hurt. It would make you feel like you cannot achieve what you want to. It would make you feel embarrassed and powerless. So why would you call your son/friend/client that? They may not be able to communicate verbally, but from an autistic who has been nonverbal many times, I promise they hear you say it.

The low-functioning label dismisses what those individuals are good at. It takes away some of their humanity, and it can make people less willing to help them achieve more because they automatically think they wouldn’t have the ability. The high-functioning label dismisses the struggles those individuals have. It makes them feel like their disability isn’t as challenging as they feel it is sometimes.

What else do we use? How do you explain them to someone, then?

Replace the functioning labels with support labels. They have “high support” needs or “low support needs.” That takes away the judgment of who they are as a person, but lets teachers and caregivers know what to expect in terms of how much help they may require. If someone needs a 24/7 caregiver, an AAC device to communicate, and assistance with feeding/bathroom, they would have high support. It’s not a hurtful thing to say; it focuses on what supports they need to be their best self. It won’t make them feel as defective like a “low-functioning” label would.

If someone doesn’t need any help and can live completely independently, they’d be low or zero support needs. Personally, I feel like moderate support needs fits me best. I don’t need a caregiver, I have a job, and I am in school. But I need supports in the form of accommodations both in work and school. I cannot drive or use public transit often due to sensory struggles, so I need people to give me rides. I am in therapy and support groups, on medications, need stim toys, communication cards if I go nonverbal, and so on.

I’m not embarrassed to admit I need support. Because supports are accessibility. They make an inaccessible world accessible. They help an individual manage their disability to the best extent possible. It’s not shameful to admit the world was not made for you.

I am autistic and proud. And you should be proud of your autistic friends and family for existing in a world that was not built for them, too. Give them support and do not base their personhood on their abilities.

Originally published: July 23, 2018
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