Why This “High-Functioning” Autistic Really Wishes You’d Shut Up About High-Functioning Autistics

I really, really hate functioning labels.

My husband, who is and remains my greatest NT advocate, still uses them when talking about me to new acquaintances, which he does whenever relevant on the theory that parents and teachers (with whom he interacts frequently, being a teacher) need to know that autistic people can and do grow up to have real adult lives and “normal people” in those lives who think their autistic friend is frabjulous.  In the introduction to Autism and Representation, Mark Osteen postulates that the labels “high-functioning” and “low-functioning” are useful if they help us avoid allowing “high-functioning” voices to take over the discourse and effectively shut up the very “low-functioning” people they claim to represent.*

But I hate functioning labels.

Plenty of people have wondered why I, of all people, should hate them.  By any measure of “high-functioning” that pegs functioning to IQ, I’m “high-functioning” – yes, even by Kanner’s absurd “150 or above” standard (a cutoff that, as MIchelle Dawson points out in the linked post, means that better than 99 percent of the entire human population would be “low-functioning” by Kanner’s definition).  If you define “high-functioning” as the ability to produce intelligible speech with my mouth, I’m high-functioning.  If you define “high-functioning” as the ability to drive a car, I’m high-functioning.  In fact, I have yet to find a definition of “high-functioning” that wouldn’t reasonably include me.

And yet I hate functioning labels.

It’s not just because, like Cynthia at Musings of an Aspie, I am both Mary and Joan.  It’s not just because when I read pieces like that recent New York Times article, “The Kids Who Beat Autism,” that I want to cry, throw things, or commandeer all of downtown to start reading Chavisory’s “The Unrecovered” or Michael Monje Jr’s “Not That Autistic” into a megaphone.  It’s not even because I feel some kind of quasi-conscious defensiveness about the fact that I can pass, while people whom I greatly respect and value – like Mel Baggs, who recently wrote a Tumblr post on this very topic – merely wish they could.  (I don’t.  As Monje points out in the above-linked post, I am aware that passing is a privilege – and I am also aware that it comes with shortcomings nonetheless.)

It’s because, when I hear the words “high-functioning” applied to me, I see this:

(Description): a black vertical line, intersected about a third of the way down its length with a red, dashed line.  The red line is labeled "THE SIXTH BOLGIA, aka where the spectrum ends."  Above the red line is a label reading "all the non-autistic people ever."  Just below the red line is a label reading "high-functioning autism: hooray! look at you go! you are almost human! (not quite tho)."  At the bottom of the vertical black line is a label reading "low-functioning autism:  aka "tragedy cases." Poor things don't even know what an emoticon is.")
(Description): a black vertical line, intersected about a third of the way down its length with a red, dashed line. The red line is labeled “THE SIXTH BOLGIA, aka where the spectrum ends.” Above the red line is a label reading “all the non-autistic people ever.” Just below the red line is a label reading “high-functioning autism: hooray! look at you go! you are almost human! (not quite tho).” At the bottom of the vertical black line is a label reading “low-functioning autism: aka “tragedy cases.” Poor things don’t even know what an emoticon is.”)

If this diagram and my captions read as the biggest pile of trivializing, insulting bullshit you’ve seen since “The Kids Who Beat Autism,” good.  That was intentional.

Not only is this not true of so-called “high-functioning” me, who is as “human” as any non-autistic person, it is also not true of so-called “low-functioning” people, who are ALSO AS “HUMAN” AS ANY NON-AUTISTIC PERSON.  

I have heard “high-functioning” used to mean many things, from “has an IQ several standard deviations among the mean” to “has a job” to “talks.”  But I have never, not once, heard “low-functioning” to mean anything but “hopeless tragedy.”  And I have never heard either of these labels deployed to mean anything but “still not quite, you know…one of us.”

That’s what “____-functioning” means.  “Not one of us.”  And for someone who just about had a panic attack in the library this afternoon upon encountering the university’s not one but two copies of Bettelheim’s The Empty Fortress, someone who did have a panic attack upon reading ASAN’s latest release on the Judge Rotenberg Center, “high-functioning” is triggering as fuck.**

Because you know what?  I spent the first thirty years of my life trying not to let on that I was “not one of us.”  Out of fear that I’d end up someplace like the JRC if I did.  And I have needed a lot of therapy to learn how to stop that fear from taking over my entire life.  A disturbing number of autistic adults do…if they survive that long.

“High-functioning” is trauma.  Stop it.

 

*As someone with a keen interest in how Gayatri Spivak’s essential question “Can the subaltern speak?” applies to autistic people, I feel like i ought at least to pay attention to Osteen’s point, even if I’m not sure yet how to reconcile it with my hatred for functioning labels.

**Swear word deployed in direct proportion to intensity of emotion.

Advertisements

30 thoughts on “Why This “High-Functioning” Autistic Really Wishes You’d Shut Up About High-Functioning Autistics

  1. As a mother of 3 autistic boys, all on different parts of the spectrum, I am sorry you feel this way. I do find it necessary to use low functioning and high functioning descriptively even in comparison to each other as 2 of the boys are twins and all 3 share medical history. I do not think of any of them as “less than human” tho, not ever.

    Like

    1. I do understand how tough it can be to try to describe a person’s particular set of strengths and weaknesses in “shorthand.” I especially get the need for it when talking about autism, where “s/he is autistic” says exactly nothing about what kinds of help that person needs or what that person is good at, and where we so often have to talk about our own “functioning” and that of others in contexts where we’re either (a) seeking supports, (b) defending a right to inclusion, or (c) both at once.

      But the fact that functioning labels are our current “go-to” for autism-describing shorthand does not mean that they communicate useful information. It also does not mean that even if they do communicate useful information, they do not also do it in a way that is harmful.

      The reason my husband continues to refer to me as “high-functioning,” despite knowing how much I dislike it, is because it’s a shorthand label people understand – it paints a picture in their minds of where my strengths are very quickly. The problem I have with that, and with “low-functioning” as a way to paint a picture of someone’s deficits very quickly, is best summed up by Laura Tisonick thusly:

      “The difference between high-functioning autism and low functioning is that high-functioning means your deficits are ignored, and low –functioning means your assets are ignored.”

      When my husband’s colleagues meet me for the first time, they’re reassured by the label “high-functioning.” They relax a bit. I’m not too weird – I can be reasoned with, unlike “those autistics.” But this also means they’re not paying attention to where they can communicate with me better, like in lowering the pitch and volume of their voices or reminding themselves to have patience with my utter lack of modulated eye contact. “High-functioning” is reassuring because it says to them “this person is NT enough that I don’t have to be reminded not everyone is of my neurotype.” But that puts the onus on me to uphold that charade, or pay the social price. And that’s not a fair distribution of labor.

      I’m not saying this is how you approach your own kids – with three on the spectrum, I imagine your daily life reminds you regularly how to “see autistically,” much more than the lives of my husband’s colleagues do! I am saying that when your kids go out in the world with those labels, they’re labeled in a way that doesn’t help them as much as you, or I, would want it to help them. And it does nothing for helping them be accepted in a world that has, until now, either ignored or actively denigrated their particular way of being.

      I still don’t know what words to replace functioning labels with. But the first step to fixing a problem is identifying that it exists.

      Liked by 6 people

  2. I’ve had people tell me that high-functioning is a diagnostic criteria and they only use it because “that’s what I/my child was diagnosed as — high-functioning.” But I don’t think there are actual clinical criteria for what high/low functioning are.

    I think that if you place a person who is labelled as “low” functioning into an environment where they are comfortable, the environment is sensory friendly and they can demonstrate the skills they have, then people would probably assume they were “high” functioning. If you placed a person labelled “high” functioning in an environment with lots of sensory triggers and tried to make them do a task while having people shout conflicting instructions at them until they had a meltdown, people would probably assume they were “low” functioning. (The latter is what several work places have been like for me.)

    Liked by 4 people

    1. To my knowledge, there are no clinical criteria behind functioning labels. The post by Michelle Dawson that I linked to looks at the way the labels are used in various scientific pieces on autism, and also concludes that the uses are so diverse as to make the labels meaningless.

      Like

  3. I am a person on the Autistic spectrum and, like you, totally dislike labels. In describing my son who was dx’d as “Classic Autism”, whatever that is, if I need to, I say he has Classic Autism, non-verbal. I don’t know what else to say even though he does speak but not conversationally. I don’t see neurotypical people and ASD people on a hierarchical tower. I don’t see the difference between the two at all. We are different Yes,but .I honestly believe that those that sit inside the socially constructed bell curve and those outside it, actually are part of each other. I see all people as sitting along side each other, individually but overlapping, circles that overlap.. There are 7 billion people in the world, not one is identical to the other. We are unique and stand tall in that uniqueness, not to be compared with another. It is wrong to attach a label to a person. If you must, why not simply irecognise the differences. My son’s “way of being” is different than mine so others need to get to know him and me and our unique way of being. Do that by inter-acting with us without pre-conceived notions of our differences, without judgement or bias and without categorizing us. Stop comparing please. Each and every one of us has differences, value them. Like my son, I am normal, we are just different types of normal.

    Liked by 1 person

  4. Wow. As a non-autistic mom who is privileged to parent an autistic daughter, you put to words what my emotions have been trying to express since she was first diagnosed eight years ago. Thank you. I have trouble when people say, “Yes but is she high functioning?” I deflect with, “What do you mean when you say high functioning or low functioning?” See, I like to turn the questions back onto people because it almost always turns out that they don’t know the insinuations of such loaded language.

    They don’t know that they’re essentially asking me if my nearly-12 year old can toilet, bathe, and dress herself and if she speaks, attends school with her calendar-aged peers, has intellectual disabilities and cognitive disabilities, as well as the myriad of other factors that they’re simply not aware of. I don’t purge all of that onto them, but when they inevitably respond that they’re not sure what the labels mean I answer, “She has some wonderful strengths and her own set of challenges, just like anyone else. For instance she loves art and knows everything there is to know about cats. She’s a very creative writer and enjoys creating recipes. We have some things we’re working on, but I’d rather brag about what she’s good at.”

    Liked by 2 people

  5. Hi there, as a Mum of two children with Autism I couldn’t agree with you more about the frustration that “functioning” labels can bring with them. My daughter has Asperger Syndrome, or has a diagnosis of AS and my son has a diagnosis of Classic Autism. My son has always been more affected by Autism than my daughter. However, of the two, he is the less likely to suffer from depression as he is and possibly always will be less interested in how others feel. My daughter is the opposite. Both are loving, wonderful people, and both have their strengths. I think you express very well the frustrations I feel about ” functioning” when you say this.

    “The difference between high-functioning autism and low functioning is that high-functioning means your deficits are ignored, and low –functioning means your assets are ignored.”

    Like

  6. I’m still coming to terms with the labels. I only recently got my adult diagnosis, I have known all my life that I was different and been given so many different labels because of it. Autism is heavily on my fathers side of the family. I haven’t been given a severity of my quirks. But since my confirmation people have changed towards me. This saddens me. My two sons are also on that magical and oh so wonderful ( sarcasm ) spectrum. It makes me angry that it’s ok to label us, box us and up until not so many years ago lock us up and use us as clinical lab rats. We are only wired different and there are a lot more of us than you’d think. If the world was sensory balanced towards us the shoe would be on the other foot. But we won’t go in to the IQ or other brilliant things that come with being autistic. Sorry for babling.

    Like

  7. Personally, I believe that the only high-functioning Autistics are those who don’t get a diagnosis because it doesn’t affect their lives enough, and I use the low-functioning label as readily as I use the pill because it’s just as useful (i.e. not at all).

    Like

  8. Cursed labels! They (Normies) know that such symbolic representations are simply shorthand for ‘this one has SOME use (assuming IT behaves Itself and gives us small-g gods the obeisance we are entitled to)’ and ‘this one is of NO use – kill it and all of the other social liabilities that are p***ing on our parade’.

    Our Magical parade, by the way. It’s all magical in the unconscious. While T. Grandins says she has no such thing, I’m not sure about myself – namely, IF I have such a construct, it is radically simpler than the usual.

    Labels – especially used the way they are about us -are indicative of projective and narcissistic thinking on the part of those applying said labels.

    Liked by 2 people

  9. I dislike the high / low functionality labels also, but as, mainstream thinkers (neurotypicals) get confused easily, I avoid the high functioning I say, either more mainstream thinker compatible, (MTC) or just with good mainstream verbal abilities to highlight good verbalisation skills, though it does leave you the room to explain the expressive v receptive abilities may not mathc so expect andn accept questions.. Its not perfect alternatives but at least its not the awful high/low crap,,,

    Like

  10. I’m having trouble with this PDF http://www.kerrysplace.org/Public/Page/Files/534_PTSD%20Part%202%20Bob%20King.pdf is anyone else dealing with this or know how to access the article? It’s the one connected to these words: “… A disturbing number of autistic adults do…” . Halp? BTW I love what is said here! I used to understand autism/autistics in very almost cartoonish way[even though I am autistic myself] –a very fuzzy and confusing image. Now with this article and those linked to it I can see much much better. Thank you autisticacademic !

    Like

  11. I think the real issue here is the stigmatization of the neuroatypical. I suspect you wouldn’t feel better if your husband were to unqualifiedly describe you as autistic, leaving them to think what they will. “High functioning” and “low functioning” only denote people as less-than-human because they’re followed with the word “autistic,” which itself does denote people as less-than-human.

    The only way to really avoid that would be a description such as, “Just like you or me.” Of course, as long as that stigma is still around, even that wouldn’t prevent dehumanization if it were followed with “except that you might need to consider some things when interacting with her.”
    As long as we consider the neuroatypical less than human, whatever terms we use to describe them will be dehumanizing terms. The only way to truly fix it is to get to a point in society where “autistic” doesn’t mean “less than human.”

    Like

    1. I think the real issue here

      Is this the part of the conference Q&A where an audience member harangues me at length for nt giving the paper they would have given? Do go on.

      is the stigmatization of the neuroatypical.

      Yes! Did the diagram not make that clear enough? Do you need me to go back a few slides?

      I suspect you wouldn’t feel better if your husband were to unqualifiedly describe you as autistic, leaving them to think what they will.

      I am pleased to announce that your hypothesis has been tested in rigorous real-world conditions. After I shared this blog post with my husband, he started simply referring to me as “autistic.” When people ask (and they do ask), “but she’s high-functioning?”, he replies “sometimes.”

      Results of this study are as follows:

      1. His response causes great consternation,
      2. Fewer people, upon meeting me, say “I hear you’re a high-functioning autistic!” and instead just, y’know, get to know me,
      3. I am delighted with Results #1 and #2.

      Sorry about your hypothesis, science bro.

      “High functioning” and “low functioning” only denote people as less-than-human because they’re followed with the word “autistic,” which itself does denote people as less-than-human.

      Did you figure this out yourself? You’re so high-functioning!

      The only way to really avoid that would be a description such as, “Just like you or me.” Of course, as long as that stigma is still around, even that wouldn’t prevent dehumanization if it were followed with “except that you might need to consider some things when interacting with her.”
      As long as we consider the neuroatypical less than human, whatever terms we use to describe them will be dehumanizing terms.

      Wow. You’re way more high-functioning that most normies who are totes just like me or…me. Really, I don’t know when I’ve met a more high-functioning human.

      Since “high-functioning” is only condescending when attached to “autistic,” as you so high-functioning-ly note above, I’m sure you’re reading my above comments in a tone of nothing but utmost respect bordering on awe, and without even the barest trace of sarcasm or condescension. Of course you are. Your high-functioning brain could do nothing less.

      The only way to truly fix it is to get to a point in society where “autistic” doesn’t mean “less than human.”

      See Finding 2, above. Incidentally, the interrelation between Findings 1, 2, and 3 has not yet been explored, but would make an excellent topic for your next paper. I wish you all the best and I will not be attending your session later this afternoon.

      Liked by 3 people

    2. Porter, oh Porter. The real issue is that terms like high functioning and low functioning denote something far more insidious than “So, how well can you (or your child) bathe, feed, toilet, dress themselves; speak verbally; perform other tasks we establish that make you (or your child) feel like a trained monkey?”

      The terms high functioning and low functioning insinuate more wrong and less wrong. So when someone from the general public, a family member, or a friend, discovers one is autistic like my daughter and they ask me, ‘How high functioning is she?” what they’re really asking me is, “How damaged is your child?”

      That leads to people wondering how much of a burden she is to me, how much she costs me and will cost them, The Taxpayers, in the future because of hate groups and agencies like Autism $peaks.

      And so the only way to truly fix it is to change the conversation. I say this as a non-autistic parent, but also as a woman who has disabilities and works as an advocate for independent living helping individuals daily that have various disabilities in various situations. The Independent Living Movement has been trying to change the conversation regarding disability for 50+ years.

      Liked by 2 people

      1. Yes, this.

        Another reason I encourage my husband, and others in my life, to just call me “autistic” is because as “high-functioning” as I am according to all the actual criteria I can find, I’m also pretty “low-functioning” sometimes, too. I cannot feed myself without help. I can drive – but I can do so safely only a fraction of the time. I stim in public in ways that my family referred to for years as “going full retard” – and no, I never grew out of them. I self-injure. I cannot speak a good 40 percent of the time. I own adult diapers in my size for a reason.

        None of these are a reflection of my worth as a person or as a wife. My inability to feed myself doesn’t make me a crappy person or wife, and my ability to pick up my own pharmacy prescriptions or publish six times a year doesn’t make me a stellar person or wife. When we attach functioning labels to these clusters of ability, that’s what we’re doing: we’re judging some ability clusters as more valuable, because more “human,” than others. Screw that crap. I’m taking back “autistic” by refusing to add a judgmental qualifier to it.

        Liked by 3 people

  12. Thank you, thank you, THANK YOU!!!

    I have the same problem with the ‘functioning’ labels. Here’s the deal. They were created by non autistics to describe autistics. Other markers need to be created, and they need to be created by US. We know best how we deal with things, we know better than anyone what affects us, and we need to be allowed to have some input on how to describe something that is so intrinsically well, US!!!

    To say what is going on with anyone in shorthand is to short change them. Make them out to be less than what they are.

    Like

  13. If I was a parent, and a heterosexual, and had children who were LGBTQIA, I do not think I would be contributing to any debate about how LGBTQIA people chose to name themselves. Therefore I do not understand why non-autistic parents of autistics are posting here. This is not your debate. You are not us. You do not get to name us. And in the wholesale insistence that your experience of your child “is autism”, echoed a million times across the internet, you are drowning out autistic voices. And I expect in a few years you will be shouting about, “Why is there nothing for my autistic child now they have grown up?” Because you silenced us so much, that’s why. That’s the damage that does.

    Like

  14. Thank you Dani Alexis. That’s it. When I’m “autistic” I’m pretty low functioning. That is when I’m having a meltdown, I shut down. People think I’m a “perfect gentleman”, “charming”, until they see me meltown, then I’m a “psychopath’, or just a weirdo who “needs help” shaking, wild-eyed, running for the nearest natural open space. Yet I’ve been a qualified schoolteacher, civil servant, community carer, as long as I could stand the sensory chaos, a university researcher (I’m now a local historian and the best at what I do). High functioning and low functioning. The turning point came when as a washed up teacher I got a job in a “severely disabled” school, and saw the young people with autism doing the same things I do, obsessive grooming rituals etc. “I’m like them!”. And learning there was a Spectrum. It still took me 15 years and an encounter with the police to get diagnosed. Every little insight I get from reading autistic stuff online helps so much. I’ve been coping with meltdowns, at first internalising, as a child I self-harmed to protect myslef from my abusive mother… It all helps. Thank you all. (Also as a carer I’ve worked with parents and deeply sympathise, but realise the parent instinct brings a kind of blindness, which may be helpful in the short term, not so much the long term). Thank you!

    Like

  15. I know this is an old article but I really appreciate you writing/posting this. I am high functioning (my official medical diagnosis actually uses the term high functioning autism), similar to you even by Kanners revised >150 value, have savant traits and oft suspected of being polymath and so on but I find the labelling so condescending and have so many issues with it myself. It seems even more absurd such labels are used when it is known as a spectrum “disorder” with multiple factors & behaviours (even those only recognised from a diagnostic criteria PoV) that don’t always manifest together or manifest differently in same person at different times. So how do you turn that into a binary condition of is/isn’t? The labelling for the term seems to be how close to appearing neurotypical to strangers in general someone is. I know friends/family who are classed as LFA medically who can “function” better than I ever will in many situations. The labelling is derogatory at its root and is inaccurate and completely unhelpful from a technical perspective. It should just be scrapped IMHO.

    Like

  16. I’m very new to this conversation as the mother of a 12 yo who was just diagnosed with social communication disorder. “High functioning” was used to describe him since his cognitive and physical development were both on par or advanced for his age. The term felt somehow degrading, but I couldn’t put my finger on why especially because those terms are used so regularly by medical and educational professionals. Thank you so much for sharing your thoughts and experiences — I’m excited to read the rest of your writing.

    Like

  17. I find ‘high functioning’ labels annoying because I run the full gamut between ‘high functioning’ and ‘low functioning’. I can be hyperverbal or nonverbal, able to appear allistic or very much not, do things like eat and go to the toilet unaided or require help.

    It’s a dice roll.

    And even then, it’s a mix and match with what sort of care I require. And even more of a mix and match with what sort of care I’ll accept. The thing is that most of the people who would call me ‘high functioning’ only see me when I can appear ‘high functioning’.

    So no, I’m not ‘high functioning’ or ‘low functioning’. I’m Autistic.

    Like

Comments are closed.