Tuesday, November 22, 2016

Autistic Language: What "Functioning" Even Mean?

It seems to be universally agreed that what makes humans different from other animals is our language. All animals communicate, but human language goes beyond non-verbal methods like body language and physical gestures to using spoken and written words. Unlike physical communication, words have the most value in how people communicate our thoughts, actions, feelings, and ideas. We have all decided that above everything else, words matter the most.

It's with this concept in mind that I want to talk about the language surrounding autism. There's lots of ways to describe autism and how it affects people and as many different viewpoints on how autism is discussed in language and tone. I don't want to get into the various tones of autism discussion because I know that'll cause nasty fights that I want to avoid at all costs. But I do want to talk about certain terms used and what they mean in how autism is seen by the world. This will take a couple of posts as there's a lot to go into, so bear with me and my thoughts.

Please note that these posts only reflect my personal views on autism language. I'm not going to dictate how other people should talk about autism because A) I'm not the boss of everyone, and B) people can get really angry when they're told what to do. I just want to explain how I feel about these terms and I hope that I can be respected for feeling that way. I won't tell you what to do or feel, so please do me the courtesy of not telling me what to do or feel.

Got that?


Now let's talk "functioning" labels.

Autism affects people in many different ways. Some autistic people talk and some autistic people don't. Some autistic people can have some control of their body movements and emotional expression and some autistic people don't. Some autistic people can pick up various social and life skills when taught and some autistic people have trouble with it. Some autistic people live on their own and some autistic people need 24-hour care-taking. There's so much more I could list and of course with what I just wrote there are plenty of autistic people who are in between. Autism is incredibly complex and there are studies that that autistic brains vary much more differently between each other than non-autistic brains do.

But complexity is very hard to process. When faced with complexity, most of us have a hard time grasping at all the various elements of what makes a thing a thing. Thus what a lot of us do is try to simplify complex things into simple terms that we can describe it. And in a world where people tend to take grey concepts and issues and make them black and white, there are two terms people tend to use in describing how autism affects people: "high-functioning" and "low-functioning".

These "functioning" labels are used to assess how autism affects a person in the way they are able to present as "normal". With that in mind, "high-functioning" says that the autistic person is largely able to present as "normal" with some elements that make them different and "low-functioning" says that the autistic person does not and cannot present as such. These two "functioning" levels are often used to assess how much assistance and help the autistic person needs, and as you can imagine "high" means needing minimal and "low" means needing a lot. And when people use negative and/or catastrophic tones to talk about autism, they usually point to the "low functioning" people to prove their points.

So what are my feelings on "functioning" labels?

I don't use them. In fact, I refuse to use them.

Before I start on why I don't like them, I want to clarify that I get why people use these labels. As I said earlier, people like simplicity when dealing with complex matters. I know I like simplicity - it's just easier. But autism isn't a black-and-white condition. There are no two modes of being autistic and it's a disservice to assume so. And there are some very negative implications of using these labels to describe an autistic person.

Let's begin with the term "functioning". Dictionary.com defines "function" as "the kind of action or activity proper to a person, thing, or institution; the purpose for which something is designed or exists; role". With this definition, we can assume that people supposed to operate one "correct" way. Calling someone "high" or "low" on the "functioning" scale thus indicates how they are able to operate in that specific way. 

Think of it as comparing cars - there's the fully operational car, a car with maybe a few scratches and a wonky air conditioner but otherwise runs pretty smoothly, and then there's the beat up car that can drive well enough but in need of constant check ups to keep it running. Which car do you think has the most value? What car would you want to drive? And how would you feel is someone compared you to a car with problems?

I know I don't want to be compared to a car with problems. And I don't want anyone to be compared as such either.

Then there's the support and assistance implication with the labels. If someone is called "high-functioning", it's largely assumed that they don't need much support and can fend for themselves well enough. If someone is called "low-functioning", people see them as needing the maximum amount of support because they supposedly can't fend for themselves. These notions fuel what kind of services and accommodations people get, so these labels mean a lot to people's lives.

It's at this point I want to share a story:

I recently went to a community meeting for work about a law passed in California dictating people receiving state-paid services can be given the option to choose what services they get beyond what they may be currently granted through a bureaucracy system known as regional centers. During that meeting, a mother asked some questions about how the law would affect her "high-functioning" son. The meeting came to grinding halt as people got really offended by her using that term and were quick to tell her off. But this one analogy from a different mother explaining her discomfort with "functioning" labels stuck with me:

"Everyone has good days and bad days. Imagine if you were only defined by your good days - it would invalidate any bad days you have. The same goes if you were defined by your bad days - it assumes you don't have any good days. And that's a great disservice to you."

What I got from that analogy was how "functioning" labels define people by their strengths and weaknesses. Assuming someone needs all the services because they have so many issues doesn't allow their strengths to be taken seriously. And assuming someone presents so "normal" that they don't need help means that they don't get help when they need it. "Low-functioning" means no strengths, "high-functioning" means no weaknesses, and that's a big problem to me.

I've been faced with this very issue. I've been described as "very high-functioning" or being "mildly" autistic. If I didn't tell people I'm autistic, they would never guess so because I can blend in well enough to fool people as such. But I have my own issues that make me far from "normal". I have an exceptionally hard time making friends. I miss a lot of social language nuances. I can get emotionally overwhelmed to point of complete breakdown, which almost got me expelled from college. I've even been fired from jobs for not understanding certain unspoken protocols. I need help and support too, but because I'm "high-functioning" it's hard for me to get it. And it's because even if I ask for it, many people will assume I don't need it.

I don't have a good answer in what to do with "functioning" labels. People like simple terms they can parrot when describing people and there are no simple terms to replace these labels that fully conveys how autism affects a person. Autism isn't a straight line from A to B - it's more like a color wheel, as this comic perfectly illustrates. There's many attributes of autism a person can possess and it all varies from person to person. And I don't know what short-form language can best convey that.

So what do I do if I personally reject "functioning" labels? I replace them with the concept of accepting complexity. The world is not black and white, it's infinite shades of grey. This means that people are not the same way and sorting them into neat little boxes based on presentation doesn't fully realize who they are as individuals. We all have our needs and our strengths that make us who we are, and we need to accept and appreciate that when we assess each other. As Walt Whitman once wrote, we all contain multitudes and thus we cannot let single attributes define who we are.

We are all "functioning" human beings. We all operate how we're meant to. And I won't assume anyone is anything less than that.


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