Do not call me high functioning

Do not call me high functioning.

Many times, in various Facebook groups I’m in, I have been called a high functioning autistic. This is not only demeaning to me, but it is demeaning to other autistics.

Functioning levels just mean that someone is or isn’t good at an IQ test. That’s it. They’re a crappy way to determine worth.

When you insist on calling me high functioning, you are diminishing my struggles. When you insist on calling me high functioning, you are demeaning other autistics. You are saying that I am better than them, which is simply not true!

Functioning levels are not helpful for me. They make things more difficult. They’re used to deny me help I need. “You’re so smart, Nora. You shouldn’t need help with this.” “I have confidence in you, Nora, you can do the thing.”

They’re literally saying that I should be capable of doing things that are impossible. Or that because I can’t do these things, my life lacks worth. I’m not more intelligent than others – my IQ is actually crap because I am incapable of testing well despite being a good student in high school. Give me an essay? I’ll overachieve and write the hell out of it. Give me a test? Meltdown.

When I tell you that inspiration porn bothers me, and you tell me that because I’m high functioning I should celebrate the achievements of other autistics, you are now demeaning to both of us.

So knock it off with functioning labels. Knock it off with “mild” or “severe” autism.  Stop using functioning labels, because they are of no help to me.

Image is of a female with multicolored balloons. Text reads "Stop using functioning labels."

Image is of a female with multicolored balloons. Text reads “Stop using functioning labels.”

I am Autistic

When the words are spinning and everything is blurry and fuzzy, I am autistic.

When every sound hurts my ears and pierces my skin, I am autistic.

When I melt down, I am autistic.

When I am stimming, I am autistic.

When I am echolalic, I am autistic.

When I lose my speech, I am autistic.

 

When  I make phone calls, I am autistic.

When I am verbal, I am autistic.

When I am passing, I am autistic.

When I manage to do tasks, I am autistic.

When I self advocate, I am autistic.

When I DO ALL THE THINGS! I am autistic.

 

This is why functioning labels are useless. This is why there’s no such thing as mild or severe autism. This is why trying to fit me into your neat little boxes doesn’t work well.

I am autistic. Always.

When I appear autistic.

When I do not appear autistic.

I am autistic…no matter what.

I am autistic-2

Ah, labels, again

Image is of a background with clouds. Text reads "I am not functioning. I am living."

Image is of a background with clouds. Text reads “I am not functioning. I am living.”

 

Today and yesterday I was “high functioning.”

I made phone calls. Scary phone calls – to the bank, to my student loan company. I went to Walmart. I’m high functioning, you see. I went to the Sprint store because my cell phone wouldn’t activate and you know, it’s kind of hard to make phone calls without a functional phone. You would have no idea how hard I was working at being high functioning and passing in a world that’s equipped to speak out against me.

I see so many things on the internet about being high functioning. Functioning labels are bullshit and I think they need to be eradicated. They don’t help me define myself, but rather help others define me. They don’t help me get services or agency, rather they deny me service and agency.

You know how I mentioned I was “high functioning”?

Later that same day, my PCA had to make me food for the weekend to freeze so I can actually eat. Because I cannot use a stove by myself. That’s right, the same “high functioning” person cannot use a stove without serious risk of injury to myself or my apartment. I’ve melted a blender and set fires. I wore children’s shoes with velcro because I couldn’t tie my shoes that day. I played with the rubber coil bracelet I always wear on my right risk.

And today, after more phone calls, I am now non verbal. Talking isn’t possible. I can type and communicate, but my “signs” are more severe. The truth is autism is exhausting.

The world calls me high functioning. Parents say “you are not like my child” even though I was once your child and your child will someday be me. I have very real struggles and very real issues. I don’t hate being autistic. I don’t think autism is evil. But it doesn’t change the fact they are very real, and very annoying struggles. It doesn’t change the fact that I need supervision – I will literally walk into things or people unless I have someone telling me “hey, watch out!”. I can’t use a stove. I can’t do many executive function tasks.

I would love to be able to eat whatever food I want. But I can’t. I would love to be able to talk whenever I wanted about what I wanted but the words literally become stuck inside me and there’s no way to pick them out. We are like your child. We have experienced things your child has. But when we try to speak out, when we try to say anything, you shut us down. And you are helping your children internalize the message that their autism is something to be ashamed of. That they are lower functioning and that their lives aren’t worth living. That they are burdens.

What I need isn’t your labels. Your labels help you define me, not help me define myself. What I need isn’t for you to tell me what my functioning is. What I need for you  is to listen when I talk to you. What I need for you is to accept me. I don’t need your awareness and I don’t need your labels. All your labels do is dehumanize me. All your labels do is tell me how you expect me to live up and the standards you keep me to. Despite the fact that countless other autistic advocates, dozens upon dozens of activists, and myself are telling you how harmful these labels are, you insist on using them.

Please stop.

Today and yesterday I was high functioning.

Right now, I am low functioning.

But the truth is, I am neither and that’s acceptable. I am living.

In which I like my labels

I like my labels. “But labels are for soup cans, Nora.” “Labels aren’t for people.” “Use person first language!” “You’re not autistic. You’re a person with autism. You’re a person first!” So many times people try to take away the labels from me that I crave – the labels I’ve worked so hard to carve out for myself and accept as a part of the Nora-ness that I am.

I have food allergies. There are many foods that are not safe for me. I rely on labels to tell me what is safe and what isn’t. Sometimes the labels lie, but most of the time they are a huge help for me. I feel like it’s a similar concept in my day to day life – my labels help me know who is safe and what groups are safe for me.

Labels help me know that I am not alone and that I am not broken. Before I came out as asexual and aromantic, I felt broken. I tried to make myself act in a way that wasn’t me and didn’t make me happy, in a desperate attempt to fit the cookie-cutter molds of the world. It helped me find other people like me and have a word to put on the feeling I could never quite put my finger on.

Labels help me know what people are like me. When I connect with fellow autistics, for example, I know that I won’t have to explain some of my quirks. I can use jargon that they understand or use themselves. Or explain it in a way that makes sense to them, whereas explaining them to an allistic (or a person without autism), it wouldn’t quite click on the same way.

In the same way, labels help me know what places are not safe for me. If you’re labeled with puzzle pieces, I am on my guard because I assume you support autism speaks. If you use certain slurs, that label shows me that it’s not something I want to be in support of or contact with. My labels not only help me, but they protect me.

Image is of a pale brunette wearing blue glasses. She is wearing a sweatshirt with various Studio Ghibli characters on it. She is disabled, autistic, asexual, and aromantic - and bloody proud of her labels.

Image is of a pale brunette wearing blue glasses. She is wearing a sweatshirt with various Studio Ghibli characters on it. She is disabled, autistic, asexual, and aromantic – and bloody proud of her labels.

By trying to take my labels away from me, you’re diminishing who I am. You still use labels in your day to day life like “doctor”, “teacher”, “blogger”, and “friend”. But when it’s something that the world perceives to be negative or something that doesn’t fit with what they perceive the world to be like, these labels are suddenly bad. These labels are suddenly undesirable. These labels are suddenly not what we want them to be.

It seems to me that the people who are most against labels aren’t the ones who benefit from the labels. They get a sense of self pride and think they’re being ever-so-clever and such a BIG help to us by reminding us that we are more than our labels. That we shouldn’t choose to use labels. That labels are not for people.

But the thing is – they are. As a disabled person, my labels are everything to me. They assure me that I’m not doing anything wrong. They assure me that I am not broken, that I am not flawed. They assure me that there are others like me in this big, beautiful world full of all different types of people and all different types of labels. It allows me to say who I am in less words.

I like my labels. Please don’t take my labels away from me because you don’t like using them for me. Call me autistic. Call me disabled. Call me Annora – because that is who I am. It’s messy. It’s not perfect. But it’s beautiful – just like I am. They all mesh together to create the whole picture of who I am. My labels are me.