Changing My Mind: Language and Labels

As I explained in my last blog post, I’ve decided to take a break from activism and focus on doing concrete things to help other autistic people in concrete ways. At the same time, I’m reevaluating a lot of my beliefs. Scrolling through the posts on this site that I wrote back in April and May, I can’t help but be a little disappointed in myself. I put a lot of energy into arguing about what words people should and shouldn’t use to describe autism, or me. And into insisting that people never use terms like “high-functioning” and “differently abled.” And into convincing others to take on “the fight” as their own.

Those posts now strike me as well-intentioned, but still sanctimonious and fundamentally misguided. Here’s why.

1. These aren’t the biggest problems. My life is pretty damn good. I am lucky in a lot of ways, and I’m not facing the challenges – bullying, abuse, poverty, financial struggles, and so on – that many autistics are. When I think about things this way, it feels more than a little self-indulgent to put so much effort into the difference between “person with autism” and “autistic.” Why not save my energy for the work that has the biggest impact?

2. I actually don’t need everyone to be an ally. Or anyone. This might sound extreme, but hear me out.

When I go to my college classes, I don’t need my professors to be neurodiversity experts. I need them to be experts in whatever they’re teaching.

When I go to get my wisdom teeth out, I don’t need my oral surgeon to know a lot about disability theory. I need him to know a lot about oral surgery.

When I get on a plane as soon as this wretched pandemic is over, I don’t need the pilot to be thoroughly familiar with autism. I need her to be thoroughly familiar with planes.

Would it help for my professors to know about autism? Yes! That way, they’re able to make classrooms more accessible, which benefits everyone. Would I like oral surgeons to understand autistic experiences? Absolutely! Going to dentists can be an enormous difficulty for autistic people. Would I be happy to know that the pilot treats disabled people with respect? Of course!

But I can’t expect everyone to spend tons of time on the autism stuff. Besides, many people don’t have the luxury of time to read up on every social justice movement, or even any of them. My goal here isn’t to boss people around and tell others what they’re doing wrong. I don’t want to just identify problems. I want to create solutions. So that means offering to tell my professors a bit about autism, so they know how to help me and future autistic students. It means letting my oral surgeon know about my sensory sensitivities, which will make the surgery go smoother all around. I don’t interact with pilots that much, and shoving a brochure in someone’s face while they’re flying a plane seems like a terrible idea, to put it mildly. But that’s okay. The pilot will figure it out.

3. What’s even better than allyship? Kindness.

There’s a well-known Jewish anecdote that goes like this: A man interested in converting to Judaism asks for a rabbi to explain the Torah to him, the entire thing. The scholar Shammai dismissed him. Rabbi Hillel didn’t. Instead, he said, “What is hateful to you, do not do to your fellow: this is the whole Torah. The rest is commentary. Go and learn it.”

That’s where I’ve landed. Be kind. Be kind to autistics and non-autistics alike. Be kind to yourself and those who live. Be kind to people whose ideas you hate. Be kind to those who you feel are the least deserving of kindness. These are the most important things, the things I’m aspiring to do.

I try to operate off the premise that most people are fundamentally good and are doing their best. Ignorance is inevitable, which is why kindness is so important. We will get things wrong. We will make mistakes. Kindness is what allows us to learn from those mistakes, to work together instead of splitting apart, to keep moving forward anyway.

As for the language and labels? I usually stick to “autistic person” or “autistic” as a noun, rather than “person with autism.” I don’t see autism as an accessory or a part of myself that can be extracted, which is why the former phrasings seem more appropriate. As long as you understand and respect my perspective, I’m not too worried about it. And if you have a different perspective, I’d like to hear it.

The functioning labels piece is a bit more complicated. I don’t love “mild autism” because I think autism is a lot more complicated than the term would imply. I actually would prefer “high-functioning” over “mild” because it seems more accurate to me. I’m not “less autistic” than any other autistic, but I am able to do things that many autistic people cannot. However, I dislike the notion that because I’m “high-functioning,” I shouldn’t struggle. People have made that assumption about me for years, and as a result, it took way too long for me to get the support I needed. This is part of why I cringe a little at the term “high-functioning,” but I’m also trying to get used to the idea that it’s a shorthand, and sometimes, shorthands are necessary. Rather than making an assumption about what another person is assuming about me, I want to ask and understand before I judge.

Incidentally, my functioning is not an intrinsic quality. It is quite literally a description of how I function, not who I am. It has changed over time, and it will probably change in the future. About a year and a half ago, I was institutionalized, and I don’t think anyone would have called me high-functioning then. If, God forbid, I were to experience a traumatic brain injury, I might become a lot lower functioning. Maybe comparative terms like “higher-functioning” and “lower-functioning” could be useful to describe autistic experiences. In a weird way, I’m a lot higher-functioning in quarantine than I was at school. No meltdowns, no crippling anxiety, no nonverbal episodes. That comparison provides valuable information to me; it lets me see that my functioning is influenced by environmental factors, and I can then figure out what environments are most conducive to my well-being.

Finally, I owe a huge thank you to a few of my autistic friends on Tumblr who are low-functioning. They’ve explained to me that this is the term they prefer for themselves, and that the insistence that “there’s no such thing as low-functioning” actually negates the reality of their disabilities. That is the last thing I want to be doing here. These are friends who struggle much, much more than I do in every area of life. I have tremendous respect for them and I’m so grateful to know them. I’m particularly grateful that they’ve taken the time and energy to share these opinions with me, because I know that because of their disabilities, doing so requires a great deal of effort. If they say they’re low-functioning, they’re low-functioning. As one of these friends has articulated, “You don’t get to tell someone how they should feel about their own self.”



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