Decoding the High Functioning Label

Aspies are often labeled high functioning by default. Some people even seem to think it’s a compliment.

“You must be very high functioning. You don’t seem autistic.”

“Why, thank you. And you’re not especially ugly.”

Because, yeah . . . being told you’re “not that autistic” like it’s a good thing is hard to swallow.

Functioning Labels in Practice

Applying functioning labels to autistic people is problematic. Maybe an example will help illustrate why.

I’ll describe two autistic women, Mary and Joan. See if you can tell which one is high functioning and which one is low functioning:

Mary is a wife and mother. She’s been steadily employed since age 16, has a BA degree and runs her own small business. She exercises regularly and is health conscious. When her daughter was younger, she volunteered for parent committees, hosted sleepovers, coached softball and drove carpool. As the more detail-oriented spouse, Mary has always managed the family finances and investments. She has a diverse set of hobbies and pastimes that include dog training, target shooting, reading mystery novels and fiction writing.

Joan is a wife and mother too. Her marriage has been rocky at times, thanks to her undiagnosed ASD, and she has no close friends. Joan works at home, avoids speaking to people on the phone and prefers to spend most of her days alone. Joan sometimes needs to be reminded to brush her hair, shower or put on appropriate clothing before going out. She’s never negotiated a lease or car purchase by herself and has never lived on her own. She enjoys going to the zoo, vacations at Disney World, animated movies and has several stuffed animals that she likes to hug after a hard day.

It’s obvious that Mary is high functioning and Joan is low functioning, right? 

What if I told you that Mary and Joan are the same person–that I created Mary and Joan by selectively using aspects of myself to construct two polarized versions of me? I am all of those things–”high functioning” one moment and “low functioning” the next.

functioning

A Nonuniform Set of Competencies

One of the central problems of functioning labels is that they presume a uniform set of competencies. Just as neurotypical people aren’t uniformly skilled at everything, autistic people have varying levels of competence in different areas of our lives. For some of us, these levels can be wildly and incongruously varied. They can shift over time, meaning that we might appear to very competent in one area today and much less so a month later.

Driving is a good example. Some autistic people drive and some don’t. Some learn to drive later in life and some as teenagers. I learned to drive at 15 and got my license the week I turned 16. I’m a good driver but I’ve learned that there are times when I need to be extra careful. If I’m overloaded, my ability to take in all the information required to drive safely is diminished. I’ll do some minor “careless” thing like drive over a curb and back into a parked car (or a telephone pole or a payphone).

Most of the time I’m a “high-functioning” driver. Sometimes I’m not. I’ve learned how to recognize when I might not be at my best and make allowances.

Functioning is Nonlinear

Sometimes I see people use high functioning as a badge of honor, like they’ve won the autism game.

My son has high functioning Asperger’s.

I’m a high functioning aspie.

The subtle implication is often “not that defective.”

I understand the urge to want to signal “not that bad.” Autism carries stigma. Simply saying “I’m autistic” or “my child is autistic” can be stigmatizing. That’s a fact of life and one we can’t escape. So people say high functioning as a way to lessen their discomfort.

But there’s a danger of people hearing high functioning, with its “not that defective” undertones, and equating it with “doesn’t need supports or services or accommodations or even any sort of understanding or acceptance.”

If you’re high functioning, you must be fine, right? You don’t really need a little extra time to complete your work or to get instructions in writing or to sit in a quiet place so you can concentrate. You can just high function your way around all those little problems and get stuff done like a normal person.

Because if you’re high functioning, you’re practically normal! So close to normal. So, so close.

If only you would work a little harder and get the rest of your functioning ducks in a row, you’d be all set. And then the question becomes, why aren’t you doing that? And why are you suddenly backsliding? We fixed this thing and that thing and the other thing already. Why is it a problem all over again?

Just as functioning isn’t uniform, it isn’t linear either. There is a commonly seen phenomenon in autistic children where they’ll make big gains in elementary school then “regress” when they hit adolescence. Or a child will be labeled a late bloomer, seeming practically “normal” in their teen years, then “backslide” dramatically when they go off to college or enter the adult world of work and independent living.

The idea of backsliding or regressing implies that the executive function deficits, sensory sensitivities and other cognitive differences that come with ASD can be fixed, like a broken leg. Parents and others are surprised when, after the metaphorical cast has been off for years, their child suddenly starts limping again.

What they don’t see is that life has delivered a metaphorical baseball bat to the kneecaps.

Those kids or teens or adults who appear to have improved their “functioning” have in fact found coping mechanisms and adaptations. They haven’t changed the underlying differences in their neurology. When the demands of life outstrip those coping mechanisms or adaptations, the underlying difficulties resurface. This isn’t a cause for alarm. It simply means that new coping mechanisms, supports or adaptations need to be found.

“Functioning” is fluid, nonlinear and nonuniform.

As Walt Whitman said:

Do I contradict myself?

Very well then I contradict myself,

(I am large, I contain multitudes.)

More on why functioning labels don’t work:

——

Note to regular readers: I haven’t posted in over a week because I’m a little under the weather. Finally starting to feel better but this may be the only post this week.

145 thoughts on “Decoding the High Functioning Label”

  1. Great post! I’m always struck by how subjective and comparative these functioning labels are and as you and I have discussed before, these labels are a double standard as they are not applied to the non autistic population. For example, let’s say “Mary” (a fictionalized version, not you) is all that you wrote above, but isn’t Autistic, has an eating disorder that only she and her therapist know about. In addition Mary has rung up a tremendous amount of debt, but because she has been able to keep this knowledge hidden, does that make it any less problematic? Would she be considered “high functioning”? Or let’s take a guy named “Bernie”. Bernie owns several homes, has a beautiful wife, several successful kids and is on the board of numerous charities. By society’s standards, Bernie is considered a role model for anyone who wants to succeed in the world of finance. Except that, it turns out, Bernie was responsible for creating the largest Ponzi scheme in the history of finance and is now spending the remaining years of his life in jail. One of his son’s committed suicide, thousands faced financial ruin as a direct result of Bernie’s scheme. High functioning?
    The labels are confusing and unhelpful. So glad you’re shining a light on them!

    1. Thank you! I loved your post on this, as you probably guessed by my ability to still recall it months later.

      Your fictional Bernie sounds suspiciously familiar. :-) I don’t think there is anyone, NT or otherwise, who could qualify for the high functioning label at all times. We’re all human and functioning labels manage to pathologize an autistic individual’s humanity in odd, unhelpful ways.

  2. “Why, thank you. And you’re not especially ugly.”
    Snort! I would love to say this some time before I die.

    It’s a strange thing that if you are autistic, you are expected to be a certain level of autism most of the time. As you pointed out, just not true. I feel that at most times in my life I would be called high functioning, but the past few months I’ve had massive executive functioning problems due to the stress of a side job and my driving skills, speaking skills, shopping skills (And I’ve worked SO HARD on the stupid grocery shopping skills and now it’s like they never were there) and other various “normal” everyday things have just plummeted into chaos.

    I think it’s difficult because high functioning is seen as good. It’s seen as being more normal than not. It makes people less uncomfortable than if you’re not “high functioning.” It has pros and cons, the biggest one being that the expectations from others that you won’t have low functioning periods grows until, when you do have one, people freak out. At least that’s my experience.

    1. Oh, if only. I think most people really do see those kinds of statements as compliments. The high functioning label is definitely code for “more normal”. I’d much rather see people described (if we have to describe anyone) by their strengths and needs. For example, low functioning is often code for nonspeaking, so why not just say nonspeaking autistic person?

      I guess that becomes harder when you try to replace high functioning with specific competencies, which is a good argument for how little a functioning label actually says about someone. Does high functioning mean the person speaks, drives, has a job, goes to college, lives on their own, is a superhero? It’s all very vague when you start digging into it.

      My functioning fluctuates quite a bit over time and you’re right, people can really freak out when we hit a rough patch. :-/

    2. I so agree with Terra. Right now I’m working at a job where, in addition to my duties as a paralegal, I’m also the office receptionist. I hadn’t realized until I started this job that I’ve had control over my work – what I do, when I do it, how I do it, and the environment I do it in – for my entire adult life. Now here I am, in the middle of a room with no door, answering phones, trying to be responsive to attorneys and clients, each of whom have different demands, without a comprehensible filing system, and I’m expected to do it all correctly. I really like the folks I work with, but it can be mind-bogglingly stressful. There can be lots of noise and activity (the copier is just five feet to my left), the amount of paper is staggering, and everybody wants their stuff NOW. My EF just can’t handle it at times, but everybody thinks I should be able to. I used to have an office with a door that I could shut so I could focus on what I was doing. Now I have to multi-task like mad, and it’s really, really hard. I’m so scared that I’m not measuring up and will lose my job for poor performance.

  3. I so recognise this, with my SO it is just the same. At times I would almost forget he has ASD, and he is just a great guy with an awesome sense of direct humor. Then there are days, like yesterday, when he f.i. had a hard day at work. Then he does not say anything about it when he comes home, but he promises to cook, and I find him crying on the kitchen floor, because one of the main ingredients of what he wanted to make is not there while he expected it to be, and he stays in bed for the rest of the evening with his huge stuffed toys – the ones he can cuddle, and that do not cuddle back and tickle him, like I would. I would almost say that because he is ‘high functioning’, days like yesterday are even harder, because he realises that the things that upset him would not upset a NT person.

    1. I just had a milder version of that happen. I went to make lunch and when I got to the kitchen, making sandwiches felt entirely too complicated so I went to lay on the couch. My husband eventually came out of his office looking for lunch and made the sandwiches. If he hadn’t, I probably would have just grazed on fruit or whatever was handy until dinner. Which he’s promised to make. :-) I can usually handle basic household tasks like that, but sometimes everything gets to be too much.

      And it is frustrating because I expect myself to be able to do today what I was able to do last week.

      Also, it’s awesome that you understand what’s happening with your SO and can give him the space he needs.

      1. THANKYOU. You have finally explained to my why some days are ‘good’ days and some days are ‘bad’ days. I’ve never been diagnosed, but I ssooo fit what you’re talking about. THANKYOU – it’s nice to fit a little better into my skin

  4. And of course the horribly insidious “if only you tried a little harder”. It always seems to come down to autistic people either being unable to make their own decisions, or it all being our own fault for not trying hard enough to act normal. We always seem to be the wrench in whatever little fantasy neurotypical people have about us.

    1. Or the more aggressive, “it’s not that hard!” I hate that as much as I hate “if only you tried a little harder.”

      On a bad asthma day, reasonable people don’t call me lazy for not wanting to walk the uphill to home from my work and don’t fault me for taking the bus instead, even if my age-peers could – and do – find the walk easy. Why, on a bad executive function day, do people call me lazy for wanting to stay active with stuff I can pick at rather than trying to force myself into something I just can’t do that day?

    2. Yes! Where is the middle ground?

      So many autistic people have their decision making rights taken away from them because people fail to presume competence. That’s a very real, serious problem and one that I hope doesn’t get overshadowed here. Everyone deserves to have their basic human rights preserved in the greatest measure possible for their cognitive and intellectual abilities.

  5. I can draw a very similar set of contrasts using just me. My level of functioning, varies wildly depending on what we’re talking about. I’m 25 and have never signed a lease for my own apartment, have been bullied and belittled to the point of having an extremely hard time saying “no” even to unreasonable requests, and can’t for the life of me get out the door at the same time two days in a row, but on the other extreme, my boss asks me to help write and edit his research proposals for him and I have two black belts and an MSc.

    1. I really want to address the “saying no” issue in a post because I have huge problems with that too. I’m getting better, but 40 feels a little late to be growing a spine.

      Fellow lack belt here! I used to teach martial arts, mostly to the littlest kids at the school. It sounds like autistic adult hell but put me in room with 30 five-year-olds and some kicking targets and there will be serious fun had. The kids loved me and the parents thought I was a little cracked. :-)

      1. I also teach! It’s fun.

        Not fond of our current venue, tho – too echoy. I have a hard time making out what’s being said.

        1. Ew, is it a gymnasium venue? I really struggle with gym echoes, especially if the martial art is one that involves lots of yelling or target striking. A nice padded floor and low ceiling help calm the noise down a lot.

          1. Yeah, it is. :(

            In the fall, we might be getting space in a dance studio (with mirrors! Eee!), but until then, we have to put up with an echoy gym. For me it’s not that I’m hard of hearing – if anything, my hearing is above-average – but that when everything is echoing on top of itself I can’t pick out what’s being said to whom by which person… I get overwhelmed with trying to pick out who’s saying what in 4+ person groups, and in a gym it’s just so much worse. Ick. I do a lot of lip-reading to understand what people are asking of me.

      2. For me, I think my problem with saying no comes from being aggressively socialized out of ever asserting any boundaries. Don’t know if that’s what the adults in my life meant to teach with those lessons of don’t shout and don’t be rude, but that was the lesson I took from them because they never gave me any alternative way to assert said boundaries. So I asserted none and was trained to let everyone around me walk all over me.

        1. Thank you for the link! I don’t know why I wasn’t following your blog, but I’ve fixed that.

          I want to write a sort of combined social skills 101/how autistic kids are socialized to comply post. Not sure if that’s possible but I have a bunch of notes about the first part.

  6. Incredibly insightful and much needed post.

    My view on why folks may be so quick to claim ‘high functioning’ is to pacify and become acceptable to those who don’t understand autism. You want them to know why you’re a bit odd, “but don’t leave me, I’m cool!” Then spend months trying to uphold this ‘high functioning’ standard in front of them in an effort to gain a bit of acceptance. Stress. Ok, so I’m talking about me. I have done this in the past. And isolation becomes the only perceived option once the ‘low functioning’ bit is exhibited. I think with self-love, understanding, and acceptance comes strength to not hide under a pacifying title. I find these days I just say I was diagnosed with autism or that I am autistic. My job isn’t to seek approval of others, and this now gives me the stress free freedom to be me. And hopefully because I accept me, it will allow others in to see the real me and then learn to accept autism’s wide spectrum. :0)

    PS Oh my word, I also love the zoo. ;0)

    1. Thank you! I increasingly use autistic to describe myself, though I still use aspie too. Autistic feels more comfortable and inclusive; aspie has specific uses, especially when talking about certain subjects like the high functioning label.

      I like the way you described why the high functioning label can be a comfortable “ice breaker” and how it can also lead to difficulties down the road in a relationship. It can be hard to hold up that first “good impression” on a permanent basis, especially when executive functioning isn’t always something we have a lot of say in.

  7. This post is so amazing! I relate to so much of it, as I am starting to realize that I probably have lived my entire life with undiagnosed ASD! Reading posts like yours makes me want to change my blog name. I started it as a benign play on words, not realizing that it would ever be construed as offensive! :(

    1. I thought of you when I was writing this post. I see your likes on my post and your blog name is catchy so of course I noticed it and then I was like “oh gosh, I hope she doesn’t take this personally!” Changing a blog name is serious business. I thought about changing mine with the retirement of the AS diagnosis, but decided it would create too much upheaval. *sigh*

      If you have an autistic child, the odds are pretty good that you might on the spectrum yourself. If that’s the case, welcome to the tribe! :-)

  8. When a family member suspected I was autistic, she also said, “Ah, you must be high functioning!” Like I didn’t have that many problems as other people did. Actually, even she was subconsciously aware that I had problems socially-she noted that I was doing great in middle school and had decent friends, but that after I moved things changed. For some reason, though, she didn’t quite make that connection between my autism and my social problems.

    On the other end, I also worry, sometimes, about telling people in real life I’m a self-diagnosed autistic. Some people would only believe it if I got a professional diagnosis, and, heck, even if I did end up getting one, they still might not believe me! lol

    1. I wonder if people see social competency as less “necessary” for life than say, speaking or being able to prepare your own meals? I think it can be written off as a personality quirk rather than a fundamental impairment and so out comes the high functioning label.

      You’re probably right about some people not believing you even with a professional diagnosis. There’s always the “maybe you should get a second opinion” suggestion . . .

  9. You know what is funny? I knew they were the same person before I kept reading…because you described both sides of me exactly… I am the exact way in driving. My friends get annoyed that I will not drive on highways or on certain days “But you drive fine in town.” It’s frustrating.
    I also regress and than perform amazing…depending on all the variables. I can do the same event one day and be overloaded and do it again and be fine or vice versa. I did better in childhood as a whole, but then again, at least in adulthood I can control my environment more…This was an exact description for me:) Thanks!

    1. I didn’t have you fooled at all! :-)

      I seem to get into the most trouble in parking lots. It’s ridiculous. Like, I’m great at 65 mph and can’t manage to not back into a stationary object?!

      On the comments to another post, I was talking with Mados about how we both felt like we had less issues with getting overloaded in childhood. My theory is that as a kid, I was able to leave a great deal of the external stuff (where I needed to be, scheduling,etc) to my parents and simply withdraw into myself when necessary. That ability to withdraw and be completely oblivious to the environment is much less available as an adult, especially when I’m in a parenting or hostessing or networking role. So yes, getting more control over our environments is a huge plus, but then again, no one is going to put me in my jammies and carry me to the car at the end of a long evening out. :-)

      1. That point about driving actually makes sense to me. I’ve never actually gotten my driver’s license, but from what I remember of having had a learner’s permit, driving somewhere at 65 mph is a much more open space, whereas a parking lot can be claustrophobic and kind of requires you to be more precise in where you’re going. I think it’s kind of similar to the difference between fine motor skills and gross motor skills, if that makes sense – although that’s just speaking generally, because I have no idea what your motor skills are like.

  10. THIS. SO MUCH THIS. A MILLION TIMES THIS. THIIIIIIIS.

    I think I mentioned this on your anxiety post, but “demand exceeding coping mechanisms” looks like it’s happening to me now, after a year at uni. Hopefully it’ll just sort itself out. I’ve started a diary of this stuff, so…

    Get well soon!!!!

    1. Thank you for the good wishes.

      Keeping a diary is a great idea. I found it helpful in sorting out my nightmare/anxiety issues because it allowed me to see things more objectively. Hopefully you’ll find yourself naturally picking up new uni coping mechanisms and things will smooth out for you. Necessity being the mother of invention and all that. :-)

  11. Wonderful post!

    I was kind of like, oh, Joan is a lot like me…. Except for the undiagnosed part, and never living on my own. Heh.

    But yeah, I’ve definitely noticed that my “functioning” and competencies can vary wildly, especially lately. I can handle finances for someone else, but not my own. (Partially, I think, because when it’s someone else, it’s their money, so I can’t spend it on things I want.) I’m capable of living on my own – but only if someone else reminds me that I have to clean up the place weekly, and clean myself up as well. I can cook, but in the last week I’ve found myself unbearably sleepy a lot of the time, and have been doing the minimum work possible. I love driving, especially on the highway (my long-delayed Stims Post #1 will talk about this, once I get it finished), but in town I need a lot more concentration, and don’t talk to me about driving at night!

    As for “labels”… I called myself “an aspie” until my sister (the speech language pathologist) told me about AS being removed in the DSM-5, at which point I began to refer to myself more and more as simply “autistic”. If anyone asks, I would say, “Yes, I was diagnosed specifically with Asperger’s Syndrome”, but as far as I’m concerned, that simply means that I was speaking at a “normal” age. That is the main difference between the diagnoses of Classic Autism and Asperger’s Syndrome.

    Anyway, {{{Virtual Hugs}}} to you, Musings, and I hope you feel better soon. Thanks for this post!

    :) tagAught

    1. Yes, the technical difference between AS and classical autism is small and I think a lot of people don’t realize that. Once you’re an adult, it’s basically irrelevant because it’s based on childhood criteria.

      Interesting about you being comfortable with other people’s finances more so than your own. I’m like that with a bunch of things–there’s a detachment that allows me to dig into something faster and easier than if it was my own project.

      I want to write a companion piece to this about self-care because I think that’s another issue that people assume “high functioning” autistics don’t struggle with and like you said, sometimes we need reminders to get basic stuff done. That’s nothing to feel bad about. Knowing the kind of support we need and asking for it is a good thing.

      Thank you for the well wishes! :-)

  12. Once again you just write the perfect post at the perfect moment! I am still smarting from a comment made over a week ago that I ‘can’t be that autistic,’ because I ‘don’t seem autistic.’ I really wanted to yell a very, very bad swear word at that moment!
    So thank you for this, you total star.
    Also, did you write kidney infection? If so, very horrible, you poor thing. I hope you are feeling better, just rest, watch and read stuff that makes you laugh and know we are wishing you well. x

    1. Oh, thank you! You made me grin. :-D People are just uncool sometimes. Why do they need to be getting all up in other people’s business and having opinions about stuff that doesn’t concern them anyhow. Ack.

      Kidney infection, yeah. It’s not fun. I’m resting a lot and trying not to get antsy about all the stuff I feel like I should be doing instead. Thank you for the good wishes!

      1. Get well soon! I’ve never had a kidney problem, but I’m told they hurt incredibly, so I hope they’re keeping your pain under control and that you have a speedy recovery.

  13. The issue I have found is that on the rare occasion I tell someone I’m autistic, the only way I can get them to even start to believe me is by using the term ‘high functioning’. If I just say autistic they seem to assume I have some strange psychological disorder that drives me to claim a disability I don’t have, rather like someone pretending to have serious illness in order to gain people’s sympathy.

    I’m getting dental work done under sedation next week, and the receptionist was quite happy when I told her I found dentistry difficult because of high functioning autism. I suppose in her mind it probably also explained my ability to book the appointment myself!

    I hate the term HFA, and I never use it in a superior sense, but bizarrely it’s the only way to have a chance of people believing me.

    (oh, and I didn’t learn to drive until I was 32!)

    1. In reference to the driving, I am relieved to hear someone else say they were in their thirties before they got their license. I’m 31 and just got mine this past March. And Mary, I am the same way about freeways and parking lots. Houston’s freeways are terrible but I’m not nearly as afraid of them as I am the local grocery lot.

    2. Okay, I can see using HFA as a strategy to get someone to accept that you’re autistic. Stereotypes are so hard to overcome. Also, I know that you aren’t in the US and that there are certain countries where HFA is used more commonly (than say AS or ASD) in the research or clinical communities.

      I’m increasingly thinking that the more we keep telling people that we’re autistic, the easier this will get, simply by virtue of repeated exposure. The more people are exposed to autistic people who don’t fit their stereotype, the more likely they will be to believe the next person they meet when that person says “I’m autistic”. There shouldn’t be a burden of proof, really, but we have to work with what we have and try to change things for there I suppose. *sigh*

    1. I have mixed feelings about that. From what I’ve seen, clinicians will “rate” people in two areas: social communication and rigid repetitive behaviors based on how impairing the traits are. In some way this could be an improvement on the HF/LF designation because it’s more specific. Someone who is said to have severe impairments in social communication is at least being descriptively labeled. It’s not ideal but it’s a move toward more informative, less sweepingly generalized descriptions. But then people will probably default to simply saying “mild autism” or “severe autism” which puts us right back in HF/LF territory. :-(

  14. I know the traits can be mild to severe all in the one person some days, depending on what is happening. But I can see that being non-verbal or having a low IQ could be perceived as “severe”, but they are not synonymous either, as someone who is non-verbal may have a high IQ and someone could have a low IQ in one area but high in another (but I may be wrong about that last part). Then again, I saw in one study that the challenges faced in one aspect were higher in those with Aspergers. I’ll have to see if I can track down that study. I’m not explaining it very well, at articulating what I mean here about traits sometimes being mild-severe along the spectrum. Tony Attwood and Lorna Wing both used the term “continuum”, which I guess is synonymous with “spectrum”.

    1. You’re not wrong – IQ is measured as both an overall score and as sub-domain (probably not the right word but my brain isn’t working so hot today) scores. Often people with ASD have very spiky IQ profiles with above average scores in some areas and below average in others. That can lead to an average IQ overall (when the sub-domain scores are pooled) but very uneven sets of skills, especially with respect to verbal/nonverbal. Also, IQ tests can be unreliable measures of capacity for some autistic people because they’re designed to be taken by people with certain communication abilities/modalities.

      Great point about being nonverbal or having a low IQ not being synonymous with “severe.” Last night someone on Twitter said that “low functioning” people can’t participate in this conversation about labels. Obviously they’d never heard of Amy Sequenzia who’s article I linked here and who would be labeled by most people as low functioning. She’s a brilliant writer and activist and a very active participant in the conversation (among many others). Amy is not the only nonspeaking activist–there are many others who are actively participating and perhaps many more who could, given the right supports and opportunities. The danger of labeling nonspeaking or low IQ people is that they are then not given the opportunity to even try to participate.

      Sorry if that got ranty – it just drives me bonkers when people try to carve us up into segments instead of recognizing that the autistic community is one big tribe. :-) Also, I’d love to read that study if you can find it.

  15. yet another super blog. That high functioning label is really making my daughter suffer. It also makes finding an appropriate school impossible. Yes she is clever and has a huge vocabulary but she can’t write well nor can she read at the level of her peers. Also her sensory issues and anxiety effect her so badly she cannot function in the most basic daily tasks! High functioning is as far from the description that suits her as possible.

    1. Thank you I’m sorry your daughter is struggling because of that label. The odd think about the school system seems to be that you get a two word label to go with a fifty page (or more?) IEP and neither is very succinct in conveying what the child needs.

      What would be so much more helpful would be a list of strengths and needs just like the one you put here. It wouldn’t take more than a couple of sentences to sum up, it sounds like, and then school admins, teachers, paraprofessionals, etc would have a solid starting point for working with her. Grrr.

  16. First off, I hope you feel better soon :-)

    I was quite pleased with myself for spotting the trick question about which person was high-functioning, but hadn’t stopped to analyze it before I read on to the “answer”. Don’t think I’d have realized that they were aspects of the same person.

    I find that the hardest two things to get people to understand are that, as you say, competences are not uniform and that the levels of competence vary depending on a number of factors (energy levels, state of mind, phase of the moon ;-). That’s true even for NT folks, otherwise Roger Federer would not have lost his match at Wimbledon yesterday!

    I totally identify with the driving part: I’ve been driving since the age of 17 (minimum legal age for it in these parts), passed my test first time,… and avoid reversing like the proverbial plague. I’ve had several near misses when I’ve been overloaded (and a couple that weren’t misses, most recently when I backed out the driveway into a van). Although I realize later that my attention was impaired, it seems that one of effects of the overload is that I am less aware of this at the time.

    I agree that the HF label is, at best, misleading and there is a danger in its interpretation as “mostly normal”. Although I never used the term much in any case I’ve stopped over time because I’ve come to see it as detracting from people’s understanding rather than adding descriptive value. I do despair of some people ever understanding autism because in their eyes everything is measured against the yardstick of their “normality”; I sometimes feel as if they’re awarding points for how well I pass. They come out with comments like the classic “you don’t seem autistic” or “I wouldn’t have known”. Really. I guess I forgot to staple the label to my forehead when I left home this morning. (I’ll stop here before this turns into a full-blown rant: does it show much that this is a sore point for me?)

    Anyhow, in conclusion, thanks for this post – thought-provoking.

    1. Thank you – I do finally feel better today than I did yesterday, which is a good start.

      I hope your accident wasn’t too serious. I’ve had a bunch of minor fender-benders but have so far avoided anything major. In nearly 30 years of driving I still haven’t learned to parallel park and will get out and make my husband (or daughter!) do it for me. I guess that’s more of a spatial issue than an attention issue, but parallel parking in city traffic is more than I can deal with.

      Labeling is a sore point for many of us it looks like, based on the comments here. :-) It’s frustrating to feel like we’re being “rated” on our performance or even that others are an accurate judge of that performance simply by virtue of not being autistic. We are all adults, after all. I suppose there’s a natural tendency to judge others by some internal yardstick and we all do it to some degree but in general polite people don’t rate other people’s intelligence or whatever out loud, do they? So why is it okay to describe “normalness” in that way. Oh, now I’m ranting.

  17. My mum was one of the only people to support me in getting diagnosed (I’m 36) but even she shies away when I say “Autism” instead of “Asperger’s”. There’s this huge divide in the minds of neurotypical people. Whereas for me, I feel far more affinity with all autistic people regardless of their “functioning” label because their experiences and the way they see the world helps me finally make sense of my life. It’s all so recognisable, regardless of functioning.

    On the other hand, the Dutch goverment has no qualms in grouping everyone with ASD together. The law says that anyone who’s been diagnosed on the spectrum needs to get additional tests before being allowed to get their driving license. No reference to functioning labels whatsoever. Yay government!

    (In all honesty, when I first found out I was annoyed, because I can “pass”. But then I reasoned, hey, this makes sense. We could all have issues with driving regardless of how well or how badly we do in other areas. So this is fair treatment, based on ability instead of label. Which is cool.)

    1. I think there is a lot of stigma around “autism” and saying “Asperger’s” can lessen that for some people. Perhaps in some way your mom’s discomfort is “on your behalf”, if that makes sense? I’ve heard a lot of parents of younger children talk about wanting their children not to be stigmatized and using that as a rationale for redirecting stims to more “socially acceptable” behaviors, etc. But really, that’s just putting the onus on the autistic individual when what really needs to be addressed is the way society views autism in the first place.

      I’m quite fine with saying I’m autistic, even if that means I need to clarify that I’ve been diagnosed with AS to get people to accept the ASD label.

      There are a few states in the US that require self-reporting of an ASD diagnosis and it may result in getting your license reviewed by a medical board but I don’t know if there is a separate test or what happens as part of that review. I do like the ability -based determination better though. If you can pass the test, you should be allowed to drive, plain and simple. :-)

  18. Where do I ever begin? I’ve long been struck by how well so many Aspies express themselves in writing, with such a powerful point of view. I am so gratetful to you for helping me better understand loved ones in my life on the autism spectrum, and also the clients that I work with as a therapist. You’ve become another one of my teachers!

    1. I don’t know about others, but I actually find it a lot easier to express myself in writing than in speech. Maybe having speech impediments has something to do with it, but I’ve always had to concentrate on getting words out smoothly and pronounced properly and that leaves less brainpower for thinking about how best to translate my thoughts to words. Add in that my ability to talk coherently is inversely proportional to my depth of emotion, and expressing things I strongly feel is much, much easier in writing.

    2. Writing is my wheelhouse. :-) Also, I’ve been working on this particular piece on and off since January so it’s not necessarily always easy to get a piece to the point where it’s expressing what I want it to express. But given time, I can get there eventually.

      Thank you for the kind words. What a humbling and flattering comment.

  19. Thank you for writing this. I need my son’s teachers to read this. When things are going “well”, supports get pulled as if suddenly he’s “better” and then they act surprised when behaviors and challenges creep back in. But like you said in your last paragraph, it’s just that new coping strategies need to be found. I have always hated the “high functioning/low functioning” or “mild autism” labels. I really appreciate this perspective. Thank you.

    1. That’s a perfect example of what I was talking about! The supports are what is enabling him to do well! I think there might be an instinctive tendency by educators to focus on progress and being able to work without a support is seen as progress over working with one in place. If a kid is doing quality work, does it really matter if he’s doing it with supports in place or he can do it without them?

      For autistic people, support/accommodation is a lifelong thing. We don’t outgrow the need for it, even in our thirties or forties or sixties. Some folks need to wear noise cancelling headphones to work in a noisy workplace. If they work well while wearing them, it would silly to say, “well that’s great, I guess we can get rid of those now since you’re doing fine.” An extremely obvious example, but still.. :-)

  20. I finally found the article I was looking for and it looks at clusters within the spectrum. Now I’m struggling to understand exactly what the information in this table means, but as far as I can see, there are variables right across which indicate that the traits of Autism are not necessarily “Mild”, “Moderate” or “Severe” in just one cluster (Cluster A = “Autism”, Cluster B = “AS”, Cluster C = “PDD-NOS”) but with some differentiation throughout the spectrum.
    Are There Subgroups within the Autistic Spectrum? A Cluster Analysis of a Group of Children with Autistic Spectrum Disorders
    Margot Prior, Susan Leekam, Ben Ong, Richard Eisenmajer, Lorna Wing, Judith Gould, David Dowe
    Article first published online: 9 OCT 2003
    DOI: 10.1111/1469-7610.00389
    1998 Association for Child Psychology and Psychiatry

    http://academia.edu/1754488/Are_there_subgroups_within_the_autistic_spectrum_A_cluster_analysis_of_a_group_of_children_with_autistic_spectrum_disorders

    1. Thank you for tracking it down. There was, at one time, a big argument over whether AS and HFA were the same or different. Some researchers even spent a lot of time trying to find brain structural differences to delineate the two. That never really went anywhere and I think this article/study was meant to be a supporting argument for one side or the other.

      The way I’m reading the table is that there is little correlation between what the children in the study were originally diagnosed with and the clusters that the researchers sorted them into based on symptom severity. This may be as much an issue of misdiagnosis as anything else. The PDD-NOS kids are almost evenly distributed between the mildest and most severe study clusters, which makes no sense because PDD-NOS is basically subclinical autism. If they’re correctly diagnosed, there’s no way they should be exhibiting the same symptoms as the classically autistic kids. The AS kids are more correctly clustered in the B cluster but for the kids with an autism diagnosis, less than half are in the most severe cluster in the study.

      That may have just made you more confused. Looking at the raw data they provided about symptoms, there is some correlation between clusters and symptom severity but there are also weird outliers, like the B cluster kids being most likely to have impaired nonverbal social skills. The B cluster kids are also more likely to have classic AS special interests and rigidity as well as higher rates of impairment in some social skills. I almost wonder if this is due to parent expectations for kids with AS vs. classical autism? A parent of a “smart” kid with AS might expect more socially than a parent of a child who was, say, nonverbal until he was 5. One of the pitfalls of parent reporting vs. using something like the clinically administered ADOS in research, I guess.

      So yes, I can see one of the conclusions being that kids with AS struggle more in certain areas and I think some of that is actually due to all that people have been talking about here–they’re so close to normal that life can be an endless series of frustrated expectations (both from self and others).

      Oh, hey, have I mentioned that autism is one of my special interests? Yeah, I’ll stop now. :-)

      1. … actually, reading medical studies is one of the things I do for fun, too – mostly asthma-related, but parent reporting is a big deal there, too. Parents consistently (and severely) overestimate how well controlled their child’s asthma is and underestimate how much breating trouble the child is having. Combine that with the social trope of asthmatic = lazy, and you get a looooot of kids who are punished for their chronic illness by being made to run extra laps in school when they can’t keep up, being told to sit out for yawning too much (a warning symptom of a flareup, but a lot of adults think the child is making a show of being bored for attention), etc. I used to have my parents gaslight me about my breathing when they were making me go to malls with them back when most malls weren’t non-smoking. “My chest hurts.” “No, it doesn’t, you just don’t want to walk anymore.”

        (not coincidentally, often I would end up in the ER that night because they refused to treat my flareup)

        But, anyway, my point is that parent reporting = not very accurate for, uh, pretty much anything. Parents are human and fall prey to the same prejudices and biases as everyone else, and that clouds their judgement, plus it basically amounts to eyewitness testimony, the flaws of which are legion and have been well-researched and documented.

        Plus, nothing about being a parent is a substitute for training and education in What This Symptom Looks Like 6001. Many parents, turns out, barely have What This Symptom Looks Like 1001, if that, unless they’re the sort to do the homework to make up for their lack of formal education. And, frankly, most parents either can’t because they’re too busy trying to keep their kid(s) safe, sheltered, and fed or won’t because they either don’t think it’s a big deal (happens a lot with asthma because a lot of adults think kids can’t get real/serious/dangerous illnesses) or because they buy into that alt-med baloney attitude where they seem to think that having kids at all is worth more in being able to figure out what’s going on and how to treat it than having decades of training and experience in treating kids who have what’s going on with your kid. Because Mommy Sense. *eyeroll*

        I mean, yes, parents know their kids better than anyone except the kids themselves. I will not argue that. That does not mean that they know, say, what childhood asthma looks like and needs for treatment better than a competent pediatric pulmonologist. But these studies based on parent reporting ignore the fact that the problems with parent reporting are legion and also well-researched and well-documented across many fields of pediatric research and seem to place parents on par with professionals in their ability to evaluate, record, and report symptoms accurately. I don’t mean to come off insulting to parents here, because it’s frankly not their fault, but they very often just plain don’t have the training to do a good job of it.

        That’s not a problem with the parents, but with the researchers who make the mistake of assuming parent reporting will be accurate and reliable. I mean, it’s better than nothing, but without giving the parents training in how to do it properly and what symptoms actually really look like, you’re just taking the plural of anecdote and calling it data.

        Annnd I’m getting way too long-winded here. I’ll stop now.

        1. That pretty much sums up how I feel about studies that exclusively use parent reporting too, especially for children who can communicate in some form. Granted if you bring a kid into a lab, you won’t be getting a snapshot of their natural behavior, but there are ways around that (observing a child in a setting they’re comfortable in) and certainly most kids of a certain age can answer questions about their own feelings and behavior.

          I’ve seen studies about autistic teens and adults that relied entirely on parent/caretaker reporting! I know that there are some autistic adults and teens who would not be able to complete a self-report questionnaire of some form, but researchers should at least make an effort to give participants the option to do so. Automatically assuming that parents or caretakers are the best reporters for the experiences of autistic people is demeaning and suggests an inherent bias in the research to begin with.

          (Also, not meaning to ignore your experiences with asthma studies but I’ve only done in-depth reading of ASD studies. I can easily see how asthma could be equated with laziness or lack of motivation, etc by adults who didn’t understand how debilitating it is.)

          1. No worries, I haven’t done a lot of in-depth reading of ASD studies yet, and I only brought up asthma because a) it’s in my wheelhouse and b) I wanted to point out how parent reporting is an issue in other fields as well, for many of the same reasons.

            Also, erm, I do have a tendency to monolog at people a lot about stuff I like learning about, so… yeah. Apologies for the derail, though I do kind of think it was relevant because parent reporting = unreliable in a lot of different fields, so there’s little reason for them to think it’s accurate.

            1. No worries! It’s totally relevant and good to know that it’s a problem in other fields as well. I just didn’t want to seem like I was monologuing at you. :-)

              Perhaps we need to just declare a “no apologies, monologue all you want” zone. I love learning about new subjects and how things are same/different in other fields or areas of interest. I hadn’t even considered that parent reporting might be an issue with physical conditions like asthma so I was intrigued by that but also didn’t have anything to add to it because it’s such a new concept to me. So yes, relevant and interesting and don’t hesitate to tell me lots of things because I’m a sponge when it comes to knowledge.

            2. Ischemgeek, I love reading your ideas about asthma as well! Maybe Aspies/Auties just automatically assume having to apologise for sharing knowledge about their interests. I think it’s fascinating.

            3. I like hearing others monologue at me (love learning & reading stuff), but I’m used to having to apologize for it when I do it, yeah. When I was a kid, I’d be told I was being domineering or rude and then made to apologize… which didn’t have the effect of teaching me not to monologue because I’m usually 5-10 minutes in before I realize I’ve been talking a while, it just taught me to apologize when I realize I’ve monologued. Anyway, thanks.

              1. I’m curious to know how many other aspies enjoy hearing people infodump/monlogue . . . might be a post in this. We’re so conditioned to hide our knowledge. As a teenager and even when I recently went back to college I often resisted the urge to contribute to conversations or class because I always have the sense that “no one wants to hear that” or “no one likes a know-it-all” probably something I picked up as a kid as well.

                Also, you’re not the only one here who shares interesting info and then apologizes for it! I do it sometimes and I’ve seen others doing it as well. Interesting. This definitely needs to be a post. Do you mind if I mention you as the inspiration? (in a very positive way of course)

            4. Feel free! Apologizing too much is definitely a bad habit of mine – I was told by a college classmate, “Would you stop apologizing for all the time? It’s like you’re apologizing for existing!” I get the impression that’s pretty common to autistic people…

              1. I have been doing this lately, as a friendship ended and I know I made some major blunders! My ex-friend even said not to be too hard on myself. I do need to stop apologising for everything though, as it does take too in the end, to make a friendship work, even though I did become over focused on the friendship! ;)

  21. I think it is a very well written piece.

    I hate it when I say my daughter is being assessed for ASD and they say “she must be high functioning”
    Yes because that makes it all ok then?

    1. Thank you. I’ve been amazed by the number of parents who have commented about experiencing this with their children. I thought at first that it was perhaps more of an adult problem but I can see that it’s pervasive across all age groups.

  22. TY TY! We label things; people, others ,ourselves because it makes us feel in control- oh that’s happening because he she is this- etc… In someway labels help us to understand and help, no she’s not “acting out” her brain is wired that way. So we need to change our approach to this person not expect them to change for us. On the other hand labels are so damaging, so limiting so controlling. Wonderful article thank you

    1. You’re welcome! I think that labels can have a place but, as you say, they can also be limiting or confusing, preventing us from really looking at another person as an individual with particular strengths and needs.

  23. When I tell people I have Asperger’s or my son has autism, I will often get a response about how he or I must be high-functioning. I never quite know what to say to that because it can require a long discussion to find out their level of understanding and educate them. Do you have a scripted answer to that that doesn’t come across as offensive? I really want to come up with a standard reply. Maybe I should just be a bit joking and say something like, “Only on a good day.” What do you think?

    1. Oh dear, I wrote a long response to this the other day and I guess WordPress at it. Sorry about that.

      If it’s someone that you aren’t especially concerned about educating, then I think the joking answer can be an easy to provoke thought without getting into a long discussion. If it’s someone who will be dealing with your son (or you) and you want to do some education, then maybe something about how autism is more complex than many people realize and while some autistic people have a lot of coping mechanisms that help them function on a daily basis, they still need some support, especially in difficult situations or on bad days. I’m still not widely disclosing so I don’t face this often enough to have come up with a script but I should.

    2. My cousin, when told he’s high-functioning, uses, “In the right environment, yes. Moving on….”

  24. Thank you for writing this post! I can certainly attest to having a varying level of competency in different areas of my life and at different times. You are able to put this sensation into words, in a way I have felt, but not been able to precisely articulate.

    I’ve spent so much time comparing myself to other people, wondering what I should be doing. It’s been difficult sometimes, when I feel like I have no guide and no answers for how I should adjust to people. I’m constantly trying to find ways to cope, and hearing what you are doing is really invaluable for me. Thank you.

    1. It’s great to hear that you found it helpful. I think it’s natural for us to compare ourselves to the people around us, which can set up some unreasonable expectations for how we should behave or what we should accomplish. I catch myself doing it all the time and have to remind myself that it’s okay to be me, whatever that entails in each moment. :-)

  25. Oh, how I hate those terms!
    As a speech pathologist, these are the “accepted” terms in the industry, but I usually avoid them, instead referring to ‘strengths’ and ‘areas to focus on’.
    Also, I could give a description of myself as “can’t stand the texture of sand, hates hearing electronic noises at bed time, will try and divert every conversation to a discussion about her cats, doesn’t like talking on the phone to strangers, likes doors to be either open or shut, not half closed.’ Is that representative of ASD? Nope, that is just a small list of the idiosyncrasies of an NT. But nobody would ever bother listing these things together to see a ‘pattern’ in order to make a judgement about my ability to participate.

  26. Very well said. Missed this when you posted it originally but hits home. We have been hearing it a lot lately and it drives me nuts. Zak, my son, has come a long way but he compares himself to other kids and struggles with the notion. He is told that if HFA and that seems to give everyone else an excuse. Great post. Thanks for sharing.

    1. It’s so hard on kids to be labeled “high functioning” because what it really says is “defective, but not really” and who wants to be held to that standard. :-/ Poor kid. I hope things get better for him.

  27. You described me, aside from the steady employment thing. I’m not diagnosed, probably won’t ever be, just because I’m an adult, I’m female and I’m poor so don’t have money to drop down $2500 for an evaluation. My Mini V has been accused of being ‘high functioning’ from his teachers at school. I need to have a conversation with them, clearly. Thank you for posting this. It gives me words to begin the conversation!

    1. I’m so glad you found this helpful and a good starting for talking with your son’s teachers. And yes, getting diagnosed as an adult can be so so difficult. Hopefully that will change at some point, but in the mean time, at least we have each other to learn from and a growing body of online resources for those who want/need to self-diagnose.

  28. Thank you for sharing this awesome post. I’ve used the term “high functioning” too often to describe my son, and then people assume all sorts of things. Now I just say that he has Autism. That it’s a neurological disorder and since the brain is crazy complicated it affects everyone differently. Liam is amazing at some things and has challenges with some things that are different from people without a neurological disorder. And, yes, it can change from day to day. I guess the good thing is that most other parents want to understand. I recommend that they read posts like yours, so that they can really, REALLY understand from the inside out. You’re a teriffic writer – and a wonderful voice for “the tribe!”

  29. I was searching around the Internet for info about aspie and driving. Wanting to give myself permission to not feel alone most likely. My 17 year old, 11th grade son is a wonderful driver. After drivers ed I also sent him through a 30 hour driving school with 6 hours of driving instruction. Anyway, after all that and getting his license everything was fine. But then he started to struggle with things he knew and his anxiety leading to sensory missory has been so difficult to watch feeling so helpless. More than anything has been not knowing what this is and why now! Everything was going along so ‘perfect’ for him. Now his depression is worse and I just want to fix it but I know I can’t and I kno it’s not my place. He and I work great together and are very close! I’m gonna let him know about the baseball bat concept. It makes this so much easier to understand and sometimes that’s enough to spark change, just knowing what happened so u know how to fight back and win!
    I’m pretty sure I was unable to explain how difficult my son’s situation is right now. But I firmly believe he is goin to see life different n a little while when he get home from school than he did when he left out this morning.
    Thank you for giving me the opportunity to get my child and I back on the road nstead of sitting, watching life go by till we could figure out what and how to get himself together and away we vroom :-)

    1. It’s really common for young people to have a period of “going backward” in the late teens or early twenties. I wrote about it in more detail here: http://musingsofanaspie.com/2013/12/19/autistic-regression-and-fluid-adaptation/ It might help both of you to read that and talk about what might be causing his increased difficulties right now. (And keep in mind that sometimes it’s just the effects of hormonal changes) Also for him to know that going through periods that seem “regressive” is perfectly normal and in time–perhaps with some help from you and some adjustments to what’s going on in his life–it will get better.

      Good luck with it – I know at times it can feel really gloomy but autism is a constantly changing thing so keep encouraging him and working with him.

  30. I use this post to link to when someone on the internet tries to silence me because I’m too “high functioning” to know what their precious baby goes through. You do a great job of breaking down what a pernicious, duplicitous set of terms functioning labels are.

  31. This is exactly the message I have been trying to spread for years . . . I am continually telling people, if you want to understand autism, talk to someone who is autistic. I have two boys on the spectrum and I am right there along with them. I used to use the terms high/low functioning until I realized what a disservice it actually was. If we say high functioning, too much is often expected, if we say low, no one expects much at all. Thank you so much . . . Do you mind if I reblog?

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