The Fallacy of Functioning Labels

Spend enough time in the autism community, and you’ll notice the popularity of the “functioning label.” “I’m a high functioning autistic,” people will proclaim. “My brother has low functioning autism,” people will say. You could also put talks of severity in this category with “My son is only mildly autistic” or when people ask “how do I interact with someone who has severe autism?” You will see this relatively frequently.

However, these labels are not as straightforward as they are sometimes made out to be. These labels are entirely arbitrary and are neither accurate nor useful for describing autistic people, as I will discuss.

“But, Quincy!” I can hear you yelling through your computer, “That can’t be! Obviously there are distinct differences between high functioning and low functioning autism!”

People will observe and see an autistic person who is highly intelligent, seemingly articulate, attends regular school classes, and is even an outstanding student in honors classes. He participates in sports teams and in the school band. He makes jokes and has friends and talks to people. I mean, he’s got a few sensory problems and is a little different, but seems fairly alright.

And then people see another autistic person who has severe emotional regulation problems; he has trouble recognizing and responding to emotion and can be so overwhelmed by everyday feelings that it pushes him to meltdowns. He needs to be reminded and prompted to do the most basic of tasks, including simply to eat food. He was, at some points, incapable of working in a regular school environment and had to be pulled out of school at one point as an intervention. He often paces, chews on things, bounces, and talks to himself in scripts. He can’t sit still or stay seated for any extended length of time. He is echolalic will repetitively repeat things himself or other people have said. He engages in self-injurious behavior such as hitting and biting himself. His communication deficits prevent him from starting conversations about certain topics, even when they’re important, and has difficulty talking on-they-fly about non-concrete topics.

People compare these autistic people and say “see, obviously one is high functioning and the other is low functioning. This is a clear distinction you can make.” Well, they would be wrong because, guess what, both of those descriptions are of me. I cherry picked examples to build the two profiles, but of course both of them offer a distorted picture of me. You can cherry pick examples of “high functioning” and of “low functioning” for every autistic person. No one is homogenous, and therefore homogenous functioning labels are not accurate when describing autistic people. Let me elaborate further:

It is common knowledge that autism exists on a spectrum. The full diagnostic title is “Autism Spectrum Disorder,” with Spectrum referring to the fact that no two autistic people are the same, and that autism is not just a checklist of symptoms. However, people tend to erroneously think that the autism spectrum looks like this:

img_3950-1

A one-dimensional Spectrum labeled “high functioning” on one end and “low functioning” on the other in which you can put an autistic person at one point on the line and say that this is where they “function.”

However, this is not accurate. And really, what’s depicted above isn’t even a spectrum it’s a scale. In reality, the autism spectrum look more like this:

img_3954

(This image is from a comic by Rebecca Burgess who used it to explain the same concepts I am. Links to everything at the end of the post.)

The real autism spectrum is not linear, it is three dimensional and incredibly nuanced. Every autistic person will have different abilities and disabilities, and no autistic person is homogenous in their abilities/disabilities. A person may be very disabled in one area and not in another and a different person might be the opposite of that. Functioning labels are inaccurate because you can’t accurately label an autistic person as being “high or low functioning.” Autism doesn’t work that way.

The third dimension to the above two-dimensional spectrum is the fact that abilities and disabilities can vary depending on time, place, and circumstance. Just because a person can or cannot do something at once place or at one time doesn’t mean the person can’t do it under another circumstance. Not only are skills and abilities not homogenous or linear, but they can change with circumstance as well.

People tend to use functioning labels as if they’re some sort of distinct, set in stone categories. Nothing could be further from the truth. No where is “functioning” ever defined, not in any official piece of diagnostic or otherwise material concerning autism. I mean, what does “functioning” even mean? Living on your own? Having a job? Talking? Because I can think of people who can do all of those things and people still pin them as “low functioning.” And I know people who can’t do some of those things and people still call them “high functioning.” Everyone who uses these labels has a different definition for them. This makes these labels completely, 100% arbitrary on top of being inaccurate.

And any definition you use for a functioning label falls prey to the same problems I mentioned above: you can’t use a single example and make it to categorize a person because the autism spectrum is not linear and because abilities and disabilities can vary.

For example, some have suggested we just make it simple and define “low functioning” as non-verbal. But someone’s ability to verbally talk is not a measure of themselves in their entirety. All you have to do is read the writings of non-verbal autistic people to know that non-speaking does not mean non-intelligent or heavily disabled in every way. There are non-verbal autistics who I would argue “function” better than many neurotypical people! And, though he wasn’t autistic, Stephen Hawking was non-verbal for much of his career, and no one is suggesting that we call him a “low functioning” person.

When erroneously assigning functioning labels, people tend to do exactly what I did above and just cherry pick what stands out to them the most. And, because of this, I quote the legendary Amy Sequenzia and say “The only difference between high functioning and low functioning is that high functioning means your deficits are ignored and low functioning means your assets are ignored.”

These labels can be harmful as well. When people are pigeonholed as high functioning, they may lose access to necessary supports because they need to just “high functioning” their way through it and suck it up. If you’re pigeonholed as low functioning, people may underestimate you and you’ll lose opportunities to prove yourself as capable. Either way a bad situation. This is hard in advocacy too. It seems that when autistic people speak about autism they’re labeled either too high functioning to know what “real” autism is like or too low functioning to have cogent, valuable viewpoints and opinions. There is no middle ground.

And I’m sick of it.

So, please please PLEASE don’t use these labels. They are inaccurate, arbitrary, and can be damaging to autistic people. I would even encourage that you speak out when other people insist on these labels. Instead of using functioning labels, talk about specific needs a person has. Follow the model of what the DSM has done and talk about people using the specific supports they need in specific areas. (No, the 1-3 numbers in the DSM are not equivalent to and should not be taken as functioning labels. The DSM specifically states this. They’re about supports in specific areas, not arbitrary “functioning.”) We can always expand and improve the way we describe autistic people, but please take this first step with me and stop with the functioning labels. Remove them from your vocabulary.

Please.

Rebecca Burgess comic on The Mighty:

https://themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/

10 thoughts on “The Fallacy of Functioning Labels

  1. Great article Quincy! I’m glad you identify the way people misread the use of levels in the DSM too! You’ve provided a very thorough overview of the issues with functioning labels. Thank you! I’ll be sharing this.

    Liked by 2 people

  2. great article. i just have one little quibble. autism spectrum disorder isn`t about a spectrum. it`s literally a spectrum disorder, which has a specific definition:

    “A spectrum disorder is a mental disorder that includes a range of linked conditions, sometimes also extending to include singular symptoms and traits. The different elements of a spectrum either have a similar appearance or are thought to be caused by the same underlying mechanism.”

    Liked by 1 person

    1. They did not say that autism is not a spectrum, but rather that the spectrum is not linear. If we consider autism a linear spectrum, then we will, as they said above, ignore deficits in one group and miss assets in the other.
      We will miss opportunities for accommodations, and we will miss opportunities for fostering strengths.

      Liked by 2 people

  3. Great article and I thoroughly agree with not “pigeon holing” any individual by use of broad terms.
    I think that, ironically, the use of broad terms has arisen from the need to provide a description which can be even vaguely understood by those with no understanding of autism, i.e. the vast majority of the population. So, the problem lies, as usual, with the difficulty of trying to succinctly, fairly & positively describe what is an extremely complex condition to people with no real understanding of autism. I often find myself trying to describe my son’s condition to other people and finding that to do so adequately takes a good half an hour!
    I agree that broad terms do little to adequately describe an individual’s condition, but they are useful in trying to communicate with those who do not have any understanding of autism.

    Liked by 1 person

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