High and low

People, especially medical professionals, are very fond of saying that real autism is nothing at all like how it’s depicted in Rain Man, the famous 1988 film with Tom Cruise and Dustin Hoffman.

Guess what? I disagree.

In this clip, Ray (Dustin Hoffman) is trying to explain to his brother Charlie (Tom Cruise) why he’s not comfortable wearing the pair of underwear his brother gave him. He always wears boxer shorts and these are Hanes. They’re too tight. They’re not comfortable. So he didn’t put them on. He tries to explain which kind of underwear he prefers, but gets stuck on saying which ones he always buys, the boxer shorts at K-Mart. And so Charlie ends up screaming at him that it doesn’t matter where he buys his underwear. “What difference does it make?! UNDERWEAR IS UNDERWEAR!”

No it isn’t. Even neurotypical people have their preferences. Some people can’t stand boxer shorts. Some people hate lacey knickers. Some people prefer cotton, others prefer synthetic fibers which have more stretch. Loose or tight, sexy or functional. We’ve all tried out different types and settled onto something we like to wear.

The difference between autistic people and non-autistic people is that deviating from our preferences is really hard for many of us. Either it’s because our routine gets interrupted, which means we need some time adapting to the new situation. Or our sensory processing difficulties make it impossible to think of anything but the unpleasantness of this strange fabric against our skins. It’s like having an itch you can’t scratch. There comes a point where you can’t think of anything else, let alone focus on what someone else is saying.

And when you’re speaking a different language, when you don’t know the “normal” way of explaining this, you get accused of making a big fuss about nothing, like Ray.

That’s why I actually recognise so much about this scene. This is a fairly spot-on example of what autistic people deal with every day, down to the anger and frustration of the neurotypical people around them. Of course it’s fictionalised and overcharged, because hey, it still has to be entertainment. But it’s not as inaccurate as the medical professionals often claim it is.

Maybe because Ray is visibly autistic. He’s what is often referred to as low functioning. And low functioning is bad. It gets you institutionalised and treated like a child, incapable of making rational decisions.

Guess what? I can be low functioning too.

Other people will say I’m not at all like Rain Man. I own my own house. I work 40 hours a week. I have a higher income than most people I know. I don’t receive any government assistance or disability benefits. I go to parties and socialise with coworkers and do my own grocery shopping and meet up with friends for drinks and even go on holiday by myself. That’s so high functioning that nobody believes me when I say I am autistic.

I will say that I am like Rain Man. That is why I posted a video of me being nearly non-verbal. That is why I showed how much trouble I have keeping my house clean. That is why I wrote an angry post about peeing myself in public.

Triplets eating lunch on a couch

We are alike © Msphotographic – Dreamstime.com

I am both. It depends on the activity (I’m crap at paying bills, I’m good with shopping on a budget). It depends on circumstances (I’m fine on the phone when it’s work related, I try to postpone personal phone calls as long as possible). It depends on how much I’ve forced myself to go beyond my comfort zone lately. Functioning on a neurotypical level takes a lot of effort for me, which means I run out of spoons faster than you’d expect.

So if I can be both, what exactly do high or low functioning labels mean? Have we really looked at a person’s strengths before labelling them low functioning? Or do we just look at the obvious symptoms that set them apart from neurotypical people?

Do we judge people only on either being visibly or invisibly autistic?

Guess what? I think the answer to that last question is yes. And that is why I reject functioning labels. Because it says nothing about my functioning. It only describes what others think of me.

If you know of any other insightful posts on this subject, please let me know in the comments! Shameless self-promotion is allowed as well!

40 thoughts on “High and low

  1. The bit where Charlie starts shouting and hitting the wheel and Ray puts his hand up to his ear to protect himself from the noise and aggression: THAT IS ME! (Only it was socks, not underwear. Or it was shirts. Or… but you get the picture!)

    Totally with you on the functioning labels being misleading and inaccurate — I hate inaccuracy! People assume that functioning levels are consistent across all activities and from day to day. I have days where I can’t pick up the phone or answer the door and days where I do it without hesitation. Unless, like Ray in Rain Man, you exhibit obvious symptoms autism is an invisible disability. People expect you to fit their idea of normal and when you don’t they can treat you like it’s your fault.

    So yes, I’m strongly against functioning labels. They cause real harm.

    • There’s about 2-3 brands/types of socks I can wear, and they depend on the season and my activity.

      Nothing made of synthetic fabric because it traps the sweat and then I get blisters and also it smells and it’s really distracting to smell your feet through your shoes (nobody else notices but I do). Fabric must be soft. In winter it must be thick and plush otherwise my feet get cold, but it can’t be linty. In summer, it must be thin and stretchy with built-in elastic arch support since I do a lot of walking in summertime and have weak arches.

      Color doesn’t matter. I rather like wearing mis-matching socks color-wise, but they type has to be exactly the same (socks of different thickness subtly affect the length of each leg and then I get off balance and clumsier than I normally am).

      Shirts, I’m not as picky about, but they must be of soft, breathable fabric that is smooth and not rigid or scratchy. Cotton is my favorite because it’s also work safe.

      • I thought I was the only person to get that foot smell thing because, as you say, nobody else notices it.

        I’m very picky about my shirts: they have to be a particular brand, style and color. I’ve got 9 that are identical. Always buy them from the same store.

        I wear the same type of sock every day – thick, soft natural fiber hiking socks. Even in summer!

      • I also cover my ears (well when I can) whenever someone like Charlie starts to shout and get very violent. And cry, a lot.

        Not as picky about underwear (although when I find good ones, I feel so comfortable and calm! Maybe I should be pickier about this). I’m pretty picky about outerwear, though: I like my clothes to have a lot of detail and bright colors, and I prefer floral or animal prints, because they’re visually stimulating for me. I also prefer a specific synthetic material (prob 10% cotton?) that feels almost silky to the touch. At the same time, I don’t want to put together a complete outfit by myself, so if the fashion of the day involves only boring solid colors and requires you to mix and match with accessories, I prioritize comfort first and just wear jeans and a t-shirt.

        I’m also sensitive to shoes-they have to be small enough that I know they’re there, and the soles have to have enough padding so I don’t feel like I’m hitting the ground with my feet.

        I remember someone telling me that Rain Man was autistic because he was extremely smart. That confused me a lot and actually discouraged me at the time from researching autism because I didn’t have a memory like his. I need to re-watch Rain Man now that I know autism isn’t just about being extremely smart.

        • Dustin Hoffman is an incredible actor. I mean, there is a lot of exaggeration but it’s almost like it’s used to explain how differently an autistic person can respond to things. And not every autistic person will recognise everything. But so far, I’ve seen more that I can identify with than things that would be alienating or wildly inaccurate. Even though that is what people commonly say.

  2. I so agree with you and can relate! There are some people who are low-functioning who still can do certain things that high-functioning people might not be able to do. The labels are so confusing and misleading often.

    • I can do things that so-called “normal” people can’t do! I made my autistic job coach laugh when she asked me for my social security number and I immediately told her without looking it up. Non-autistic people usually just assume I’m either mad or lying when I do that.

        • I could do my passport number too, before they changed it to mostly letters. Sequences of numbers are easier for me than letter sequences, even though I’m not good at maths in general (but rocked at geometry).

      • Me too! I really shocked an appliance parts salesman once. I had walked into the store and asked for a certain part for my refrigerator. He looked at me as if I were a complete moron and said that I would need to get the make and model number of my refrigerator before he could look up the part. His jaw dropped in disbelief when I recited the entire model number from memory! I guess most people don’t do that.

        • There was another autistic memory moment today after my son’s psychiatrist appointment when we scheduled the next appointment. The lady at the desk asked if I needed a reminder card. (I never knew there was an option, they’ve just always given me a card with the date and time of the next appointment.) When she asked, I realized that no, no I most definitely DON’T need that. In fact, it’s much easier for me to remember to come back on October 28th at 5:10pm than it would be for me to figure out what to do with the card, and/or remember where I put it for the next 6 weeks. I’m far more likely to forget to wash clothes than I am to forget the day or time of that appointment!

        • Hahaha! I always lose those cards. Same as diaries, I haven’t needed one since high school, although I am trying to get into the habit of entering things in my online calendar. Don’t really know what for, though, because I’m always ready to leave the house before I even get the reminder thingie.

  3. If Charlie thinks underwear is just underwear, I can acquire a lacy thong he can try on for size. See how long he can stand it before he has to take it off. 😛

    Underwear is not “just” underwear. It’s some of your most important clothes because it goes over the most sensitive parts of your body and if it chafes or bunches or rides up or itches or what have you, that’s really distracting. Really, really distracting. So, underwear is the foundation for your comfort for the day.

    … anyway.

    Also: I think why LF/HF labels are so innaccurate is more because they’re vague and ill-defined, and thus vulnerable to stereotyping. People hear HF, and they think a caricature of a geek, and when they hear LF they think a caricature of someone who’s nonspeaking. Never the twain shall meet, two completely different things.

    • I said somewhat the same to Notesoncrazy further on, but I don’t mind repeating it: the danger lies in being told that we need to accept those stereotypes for ourselves. That we are told we should be flattered when someone says we seem very high-functioning. That our access to services is based on how visibly disabled we are, instead of on our actual disabilities. That’s what I’m fighting against. Stereotypes are fine, but keep them to yourself. Don’t go spreading it around like it’s the truth, or a compliment, or medically accurate.

      • To me the issue with holding stereotypes is when you allow them to prejudice you to such an extent that you are incapable of taking someone where they are. Case in point: I was never taken to a DD expert because as a “gifted” kid, they thought I couldn’t have a DD. As I got older and my symptoms got more pronounced, they ignored it because only boys get autism and ADHD.

        • OoT on stereotypes and referring to a post you’d written, ischemgeek: overheard a lady joke to a group of women about how women are more efficient than men, and I got offended for the males who weren’t there to listen! So turns out I am ok when it’s my very close friends and family doing the joking, but complete strangers….not so much.

  4. Yes! I was trying to explain to Patrick a couple days ago why I included “high-functioning” on my list of potentially offensive terms in my survey, and we were having trouble with communicating about it. Neither of us was angry, and it wasn’t even that we were disagreeing, we just didn’t really see what the other meant.

    I was trying to say that while some people likely find the term incredibly offensive (because it’s just kind of a touchy subject), I think more than being outright “offended” most autistic people who could easily be labeled “high-functioning” don’t like the term because they don’t feel it gives an accurate and full description of what they deal with, and they may feel it minimizes what they really do struggle with or is dismissive of the fact that they struggle with anything. Eventually (well, pretty quickly) I stopped saying “they” and started saying “we” because I’m in that particular camp.

    He was saying (I think this is what he was saying, but I might still be way off) that there’s a word to describe someone who has strengths on the autism spectrum and weaknesses on the spectrum and some things are invisible and others are very visible and others are nonexistent…he says the word is “autistic.” He feels like the functioning labels (again, we were having trouble communicating so I could be misinterpreting him) are useful and accurate, because they aren’t trying to describe the whole of what a person deals with or point out their less visible struggles. Instead, these labels are a way of describing how that individual is understood by other people.

    I still don’t like the terms, but I do see his point. If they aren’t used to describe the actual experience of the autistic person but instead the perception of the autistic person by others, well, then I guess they do end up being accurate. Just kind of by definition. I mean, words that are descriptors of perception and not core identity are pretty common and have their place and usefulness. Like, if I say “Autisticook is the coolest blog I follow” it’s not a meaningless statement. It shows my understanding and opinions and tastes and values and whatever else. But it doesn’t really get at the heart of what your blog is. I mean, I personally have been described as cool (rarely, but it’s happened), but I feel like this descriptor isn’t even CLOSE to true about who I really am. But do we throw out “cool” as a word because it might be debatable or because it doesn’t fully describe something or someone?

    But I mean, HF and LF have totally different connotations from “cool” so don’t confuse me with saying it’s the exact same situation. With high- and low-functioning, we open new doors to questions like: Why do we need labels for that? If that is what those labels are designed for, how do we deal with the fact that most people see them as a guide for the actual experience and ability of the individual? How useful can descriptive terms be if they are as strongly stereotyped as these (like how the comment above me describes the associations of HF with geeky and LF with nonverbal)?

    • Patrick is right, high and low functioning are useful and accurate labels for non-autistic people to judge autistic people.

      Because as I’ve tried to explain here, all that gets judged is the visibility of our autisticness. So to non-autistic people, the label says “visible, stands out in the crowd, obviously in need of support” or “invisible, doesn’t stand out, so don’t need to pay attention to it unless the autistic person asks me to”.

      Not saying that Patrick literally thinks that way. But this is the way the label is used and why non-autistic people, especially professionals, think it’s useful. Because it describes THEIR experience with OUR autism.

      “You don’t look gay.” That’s offensive.
      “You don’t act like a man.” That’s offensive.
      “You don’t look like a muslim.” That’s offensive.
      “You don’t act black.” That’s offensive.

      Yes, I label people every day. But saying it out loud, to people’s faces, that not only do I have the right to label them with my experience of them, but that they need to accept that label as their own? That’s incredibly offensive.

      • Yeah. Patrick is a minimally offensive dude, so don’t read to much into that little snippet of our fairly unsuccessful conversation.

        I think one complicating factor is that calling someone “high-functioning” almost seems like a compliment. I mean it could if you weren’t aware of how it came off to the autistic person. It’s similar to the experience of telling someone you are autistic and getting a response like “no way!” or “nobody here would ever think that about you!” It’s meant to be encouraging and make you feel less self-conscious, but it has the polar opposite effect.

        I don’t know too many people who wouldn’t see “low-functioning” as an offensive term, but I think when people use HF they honestly don’t mean to judge…they’re just trying to be nice. Ok well sometimes they are just judging, but I really do think that’s not always the case.

        Not that it’s an excuse! It’s no better! It doesn’t make it ok!

        I’m really just throwing this stuff out there as a conversation and not because I want to make excuses for offending or judging people.

  5. This is a great post and these are great comments. I am not visibly autistic and some people, including my former therapist, doubt whether I’m actually autistic. Then again, I display many autistic behaviors sometiems and can be very low-functioning. What that therapist based her idea on, was that I have relatively good empathy. Well the whole autistics-lack-empathy thing is bullcrap, so it’s stupid she based her jdugment on only that. As you said on one of my blog posts, a lot of autistic behavior can be interpreted as stemming from fears, cognitive distortions, etc. That is not okay really.

    • Exactly! My initial diagnostic person kept asking me over and over whether I was comfortable with looking people in the eye. As if autism only consists of not making eye contact.

  6. Thank you so much for this! I am going to reference this on my blog and also send it to my son’s team at school. He doesn’t really have this kind of sensory issue, BUT I think it’s important for them to see things from the “inside” perspective, even if it doesn’t pertain specifically to his particular symptom base. So glad I found your blog!

  7. Love this. So much of what we consider to be functioning is really quite superficial. If an autistic person has a full-time job or is getting stellar grades at school but is miserable every day due to bullying or not fitting in, how well is that person really functioning? Sometimes our challenges are hidden. I can remember getting frustrated and overwhelmed and only being able to express it by running into a dark room and flapping my hands and spinning around. I felt a sudden sense of empathy during those times for people labelled low-functioning. But that’s the sort of thing other people don’t see.

    The low-functioning label keeps people’s unique talents and strengths from being recognized, and the high-functioning label so often keeps people from getting the help they need. Both labels keep people from realizing their full potential.

    • I would even say that the label “low functioning” keeps people from getting the support they NEED, as opposed to the support others think they should need. Say for example that you’re pretty much non-verbal, but you have decent motor skills and a good visual memory. Maybe you like preparing your own meals, but because you’re non-verbal and trained to comply with authority, you don’t have the tools to tell your aide that you don’t want them to provide you with microwave meals, you just need them to help you do the grocery shopping. I can FEEL the frustration that this would cause. Simply based on the assumption that if you’re non-verbal, you can’t be trusted with an oven or kitchen tools either.

      • I agree that the low-functioning/high-functioning and people’s arbitrary definitions of normal keep people from realizing their full potential. I might look normal at first glance to other people, but I really don’t fit the definition. And when it becomes apparent that I don’t, the first response is, “Why don’t you ask more questions?” “This should be very simple, why can’t you do it fast enough?” These are the times where it’s necessary to keep defending who you are so people will *eventually* take you seriously…But while I understand the need for labels, they don’t really help someone who really needs helpl!

  8. Pingback: “Schools are underestimating the abilities of children with autism all across tthe spectrum.” | aspermama

  9. Pingback: Hang on, I’m different | ...autisticook

  10. Pingback: Autistics Speaking Day 2013: This Is What Autism Looks Like | letters from a patchwork wizard

Leave a reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s