Feminist Aspie

Functioning Labels 101: What’s The Big Deal?

on March 13, 2015

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”.


40 responses to “Functioning Labels 101: What’s The Big Deal?

  1. gwenhwyfaer says:

    Of course, anyone who had a disability or difference during childhood knows all too well that it doesn’t matter what words are used to describe it; allies will muff the terminology sometimes, and foes will use the most innocuous terms as insults.

    Also, a blanket refusal to discuss severity doesn’t necessarily help us. I was a bit miffed when I found that a suggestion that someone who was in a stable home relationship might not have quite such pronounced social issues as someone who had found they couldn’t possibly ever be in such a relationship because of their own inability to deal with sharing space, trust and the emotional turmoil involved in a relationship (ie. me!) was dismissed with the sentiment “functioning labels aren’t helpful”. Firstly, what the actual! – and secondly, if we can’t talk about the differences in the way in which autism affects each of us to each other, without censorship, then how the hell can we talk about it to neurotypical people?

    And lastly – it’s obvious, but I’ll say it anyway. We’re not all nice and understanding to each other all the time either. Sometimes we are manipulative, or boorish, or we overreact. Sometimes we get the hell on each other’s nerves. This is not because we are autistic. It’s because we are *people*. And in general, people only occasionally forget to suck; we’re not miraculously better than that, just because we’re autistic. We just know a little better than most how much it can hurt.

    • Thanks for reading! 🙂

      “…when I found that a suggestion that someone who was in a stable home relationship might not have quite such pronounced social issues as someone who had found they couldn’t possibly ever be in such a relationship because of their own inability to deal with sharing space, trust and the emotional turmoil involved in a relationship…”

      That sentence, in my opinion, is actually a perfect example of how to talk about your abilities/disability/support needs in relation to other people *without* a functioning label ever being required. The problem with functioning labels isn’t that they describe the different ways autism affects us – the problem is that they *don’t* do that. Instead, they stick all autistic people into two really stereotypical, inaccurate groups: “has the maximum level of every possible autistic trait” and “can’t I just pretend they’re neurotypical?” As you’ve pointed out, it’s entirely possible to be more “obviously autistic” in some skills/areas of life and less “obviously autistic” in others, which is why blanket “high-functioning” and “low-functioning” just doesn’t work; it’s not just harmful for “passing for NT is the goal” reasons, it’s also usually a totally inaccurate description anyway.

      As for censorship, I’ve always seen functioning labels as the problem there too. Abled people created functioning labels (based on how close we are to being like them, of course) and use them to silence us. I don’t know you so I don’t know how you’re perceived, but for many abled people, even being able to type out a comment on the internet is enough to see you “high-functioning” and they think this gives them licence to completely ignore and dismiss the other areas of life you find difficult, even as you’re actively explaining them. Also, when an autistic person disagrees with a neurotypical person on their own neurotype/experiences, they’re often told that they’re either too high-functioning to be believed, or too low-functioning to understand (neither is true – the former is erasing the difficulties faced by an autistic person just because they’re less obvious, and the latter is just one huge ableist myth) and this means that while neurotypical people are seen as “autism experts” and “autism champions”, autistic people ourselves are rarely even allowed into the conversation.

  2. Uncom says:

    Brilliant post.
    I’d add that people should not just talk ABOUT autistic people but also talk (or type) WITH the individual.
    To answer the other comment I don’t believe this is about censorship. Functioning labels are reductive. The alternative would be a much more nuanced language that doesn’t negate any autistic person’s experiences and needs but enables their accurate articulation.

    • Thank you! 🙂

      “I’d add that people should not just talk ABOUT autistic people but also talk (or type) WITH the individual.”

      Yes, this is something I hadn’t thought to include to be honest; I was mainly aiming this post at neurotypical people who up until now didn’t think functioning labels were a problem in any way, but many (though not all) of these people can make assumptions based on what’s visible about the person (essentially, whether or not they “act neurotypical”) and in most cases that’s barely the tip of the iceberg. That’s why, for example, harmless stimming is seen as a huge issue that must be prevented at all costs, but sensory issues are only just beginning to be acknowledged by mainstream media. Very few people think to actually ask us.

  3. jemima2013 says:

    I love this, I feel like Jem- mother, committee member trainee counsellor, student, is not even allowed to be autistic, jem who cant make phone calls, cant cope with crowds, needs to sleep most of the day after being in college, and who has meltdowns is supposed to be a totally separate person, and a dirty secret, even by people who claim to be aware of what autism is, and/ or claim to care about ableism.
    High functioning completely erases the effort that goes into interacting with the world, and with neuro typicals, as you say, its a threat, saying behave or have our approval withdrawn.

    • Thanks so much! 🙂

      “High functioning completely erases the effort that goes into interacting with the world, and with neuro typicals, as you say, its a threat, saying behave or have our approval withdrawn.”

      ^^^ This.

  4. Bigger On The Inside says:

    Brilliant post.

    I think there are some fundamental questions to be asked about the whole concept of “functioning,” let alone high or low functioning. It’s fairly easy to work out whether a washing machine or a toaster is functioning; but what, exactly, is human functioning? Does a human being have to do or be something to be considered useful – or, worse, to be considered human?

    The logical outworking of the functioning concept is surely that great swathes of the human population aren’t actually functional at all – babies, older people, hospital patients, people experiencing mental health difficulties, the unemployed, etc., etc., etc. And the logical outworking of that is – well, we all know what to do with a non-functioning toaster or washing machine. I don’t think it’s an overreaction to say that it’s a slippery slope from functioning labels to concentration camps.

  5. […] me, this subject has started to seep into the glorious anonymity of the blogosphere.  Both feministaspie and ischemgeek have excellent posts on it this week.  In reading ischemgeek’s satirical but […]

  6. […] post in this series, “Functioning Labels 101: What’s The Big Deal?” can be found here. Once I’ve established that I actually will write a regular series of these posts and not […]

  7. […] Feminist Aspie explains the problems with functioning labels […]

  8. […] On the flip side,  people labeled as low functioning are more likely to be abused, as described by Feminist Aspie. […]

  9. […] “Functioning Labels 101: What’s the big deal?” (FeministAspie blog). “[Functioning Labels] are inaccurate due to being highly context-dependent. 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.” […]

  10. […] the Difference Between High Functioning and Low Functioning Autism? Functioning Labels 101: What’s The Big Deal? | Feminist Aspie. If you’ve seen the #HighFunctioningMeans and #FunctioningLabelsMean Twitter hashtags, or more […]

  11. […] Functioning Labels 101: What’s The Big Deal? – On the various problems with imposing functioning labels on autistic people, and what to say instead […]

  12. Sara says:

    Hello, I am an aspie research student and currently writing a paper about greater academic inclusion of autism at the university level and part of that involves a brief statement challenging functioning labels. The nature of the paper means that I am trying to cite as many ‘insiders’ rather than ‘experts’ as possible, and I would like to ask you for permission to cite this blog post in my paper please? It will be submitted for publication, and if accepted, a copy will be made available to you on my blog. There is already some info up there about the paper. I am also happy for you to see the abstract and specific section I would by citing you on prior to submission for publication. If you are happy for me to cite you, could you please let me know what name you would like me to use (you are able to use an alias for privacy if you prefer)? My email is smc.judge@gmail.com if you would like to contact me privately. Thanks! 🙂

    • Sorry I’m so late getting back to you on this! All the best of luck with your project – I’m very happy for you cite my blog! (And very flattered :P) I’m supposed to be anonymous (even if I am terrible at it in practice lol) so Feminist Aspie is okay re: credit. Hope it all goes well! 🙂

      • Sara says:

        Thanks so much, I noticed you’re following my blog now, so as soon as the paper is published (if it gets accepted of course), I will put it up and you will get a notification. 🙂

  13. […] on the inside. For a better understanding why functioning labels are useless, here’s a link, one of many posts by Autistic people explaining the issue with functioning […]

  14. This field was intentionally left blank says:

    Wow!! Excellent post! Brilliantly written. May I reblog?
    Cheers! 😊
    ~The Silent Wave Blog writer/Laina ❤️

  15. This field was intentionally left blank says:

    Reblogged this on the silent wave and commented:
    This is a wonderful and much-needed post! In it, the lovely author takes us through what exactly is a “function” label as applied to the Asperger’s/autism spectrum, why they’re inaccurate at best and harmful at worst, and they also debunk the persistent myths, objections, and protests we often hear in defense of “function” labels. To be clear, this fantastic post explains why these labels are bad and should not be used. In fact, we shouldn’t even be thinking inside this box or along these lines; this type of thinking (and vocabulary) are quickly falling out of favor, as well it should. It’s becoming passé, and it belongs in the past. Excellent read! I recommend following this blog 🙂 ❤

  16. Thank you for this very informative post. I have had issues with “functioning age labels” (being labeled as “functioning at the level of (arbitrary age under 18)”, despite the fact that I identify as an adult who sometimes needs support. You are correct in that arbitrary “functioning levels” fluctuate based on stress. Both functioning labels, and functioning age level labels need to be permanently retired.

  17. […] they’re so high-functioning” is a bad reason for locking someone out of the system. I’ve written before about why functioning labels are unhelpful and ableist, but for these purposes, the important point is that how well someone can pass for neurotypical […]

  18. […] on the grounds that they happened in 2013). He agreed to use identity-first terminology, and not to use functioning labels (although he did try to maintain the high/low dichotomy using other […]

  19. autistasangeles says:

    Reblogged this on autistasangeles.

  20. […] Source: Functioning Labels 101: What’s The Big Deal? […]

  21. […] fact, some days I barely function at all. For this exact reason a lot of people don’t like high/low functioning […]

  22. […] check out Functional Labels 101 by Feminist Aspie for accurate descriptions on why functional labels pose threats to the wellbeing of everyone along […]

  23. […] to identify and refer. This concerns me because it appears to take us back to highly problematic functioning labels, and an understanding of autism that has more to do with learning difficulties and IQ than it does […]

  24. […] are so many posts and articles written by Autistics about how utterly wrong “functioning labels” are. How inaccurate. Why we generally don’t like them. Responding with a functioning label-based […]

  25. […] check out Functional Labels 101 by Feminist Aspie for accurate descriptions on why functional labels pose threats to the wellbeing of everyone along […]

  26. […] am not the first person to explain why this is so very very wrong. You say that we are not like your […]

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