If you’ve seen the #HighFunctioningMeans and #FunctioningLabelsMean Twitter hashtags, or more generally read or listened to a discussion by autistic people about functioning labels, you’ll know that, well, a lot of us really don’t like them, so I thought I’d write a 101 post about why that is, and what the alternatives are.
Wait, what’s a functioning label?
Many autistic people find themselves at some point being described as having “high-functioning” or “low-functioning” autism. Which label is given to the person can depend on a number of arbitrary factors, but often involves verbal ability, ability to live independently, and (especially in children) academic ability. In other words, functioning labels are basically another way of saying whether or not you think a certain autistic person can pass for neurotypical.
What’s so bad about functioning labels?
Well for a start, “passing for neurotypical” should not be the goal. We’re not defectively neurotypical, we’re autistic, and society needs to accommodate that. Being neurotypical should not be the only correct way to function. Calling an autistic person “low-functioning” is putting them down because they’re autistic. Meanwhile, calling an autistic person “high-functioning” works in much the same way as the “you’re not like other girls” trope – it sounds like a compliment and may well be intended as such, but in reality, you’re “complimenting” the person by insulting other people like them, which only serves to teach self-loathing and harmful attitudes towards those other people.
Having said that, I would argue that “high-functioning” is not only a thinly veiled insult, it’s a threat. People who cannot or will not pretend to be neurotypical to make you comfortable – the so-called “low-functioning autistics” – are treated appallingly in our ableist world; because their disability is visible, their personhood, feelings and strengths are ignored. Those of us who are more able to pass for NT more often – the so called “high-functioning autistics” – escape much of the worst of this hatred, but at a price; because we are accepted as people with feelings and strengths, our disability is ignored. When our autism is visible, if we openly discuss it, or – heaven forbid – if we request an accommodation, we’re told we’re over-reacting, we’re manipulative, we’re over-sensitive, we’re selfish killjoys; basically, we’re told we’re faking it, and should just try harder to miraculously not be autistic. In short, “high-functioning” means “act neurotypical at all costs, or we’ll see you as Really Autistic, and you know how we treat people who we think are Really Autistic”.
This binary stems from the refusal of abled people to recognise that disability and personality can co-exist – in fact, they ALWAYS co-exist, because disabled people are people. (And if, as an abled person*, you now want to correct me on my language because people-first requires literally putting the word “person” first, maybe think about why you feel the need to go against all syntax to show that in your words, and how instead you could show that in your attitudes and your actions.) It’s also used to silence autistic people standing up for themselves and their rights as a whole; we’re either too low-functioning to really know what’s best for ourselves, or too high-functioning to “count” as autistic (unless they want to include us in scare statistics, of course!) so in the end, the only ones that neurotypical people actually listen to are… well, neurotypical people.
Surely there’s some truth in them though? You’re not like my child!
There is a good reason why I’m not like your child, or anyone else’s child, or anyone else in general; every person is different. Autistic people are people. Therefore, every autistic person is different. I am an adult; of course I’m not like your child, I’m not even like myself as a child anymore. Anyway, leaving that aside, not only are functioning labels harmful, they’re also wildly inaccurate. Here’s a quick test, which I first saw by Musings of an Aspie but have also seen by various other autistic people online, in which I’m going to describe two autistic people.
Laura is verbal, and lives independently. Over the past few years she has undertaken a variety of responsibilities and committee positions, some related to her special interests, and has used these to develop an active social life. Laura is highly organised and rule-orientated, characteristics which have greatly helped her in her studies. She very rarely has full-scale meltdowns, and given the time and space, she is virtually always able to deal with shutdowns and the aftereffects of sensory overload by herself.
Faith is often anxious, particularly in social situations and crowds, and rarely leaves home without her earphones. She often prefers to communicate by typing rather than talking, and will avoid the phone wherever possible. Faith sometimes struggles to keep up with everyday self-care/household tasks, which can lead to overload in and of itself. She has a habit of pacing around her room on her tiptoes, particularly to music, and spent a large portion of last night listening to one song on repeat and spinning.
Based on these descriptions, one of these women would be considered high-functioning. One would be considered low-functioning. These women are both the same person, more specifically me. And that last part, about listening to one song on repeat? Muse are back! 90% of the fandom would have been doing exactly the same. The only reason “Faith” would be seen as weird for doing so is because of the additional stimming as well as the rest of her description; in other words, she’s already being seen as “low-functioning” so even the most innocuous of new information is automatically used to support that existing bias.
I include that last point to show how much of our “functioning level” is highly context-dependent. Everyone sometimes acts differently or feels more or less able to cope based on their mood, stress, events in their life, illness, being hungry or tired or uncomfortable, or even depending on where they are or who they’re with. As @theoriesofminds notes, functioning labels mean “how was your day going when you saw the person who diagnosed you”. It’s random, it’s arbitrary, and it’s based on two stereotypes in which no person wholly fits. So no, there isn’t much truth in them at all!
Okay, but some people do need more/less/different support to other people; how else can I acknowledge this?
As I said above, every autistic person is different, so in my opinion, the only way to accurately get across the support someone needs is to talk about them as an individual. For example, based on me again (though not my real name):
Gemma can communicate verbally, though in many cases finds typing easier, and finds the phone particularly difficult. She lives independently, but sometimes struggles to keep up with everyday self-care/household tasks. Gemma is often very anxious, particularly in social situations and crowds, but she very rarely has full-scale meltdowns, and given the time and space she is virtually always able to deal with shutdowns and the effects of sensory overload by herself.
Having said that, the support often depends on the situation. For example, in exams, I don’t need any particular accommodations, but another autistic person may need to, say, take the exam in a different room away from the distraction of other people. In parties, I might need my friends to occasionally check I’m okay and know to get me out of there/what to do if things go wrong, but another autistic person might not need any extra help at all. In short, functioning labels can be replaced with “you should be aware that this person is autistic, and in particular they have Autistic Traits A, B and C and will therefore need Supports D, E and F” and again answer any further questions based on the person themselves.
To sum up:
Functioning labels are used to demean and silence autistic people; they hold up “pretending to be neurotypical” as the ultimate ideal,and are based on two opposing stereotypes which no autistic person wholly fits. In addition, they are inaccurate due to being highly context-dependent; in the examples I use above, a band changes my perceived functioning level. Seriously, that’s how fragile these things are. As an alternative way of describing the strengths, weaknesses and support needs of the autistic people in your life, try talking about them as individuals, and actually describing those strengths, weaknesses and support needs rather than trying to force them into an ill-fitting box.
*I say “as an abled person” because some people with disabilities to prefer to be called “people with disabilities” and I don’t have a problem with that – it’s not what I use myself, but if that’s how other people want to refer to themselves, that’s their business, not mine. However, what I DO have a problem with is abled people reading posts and articles about the ableism they’re perpetuating and essentially reacting with “you’re the one who’s being offensive to yourself because I can’t see ‘disabled people’ as people”.