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Jun14
What Does “High-Functioning” Really Mean?
18 CommentsMore and more, I’ve been trying to avoid making a distinction between Asperger’s Syndrome and autism. Such a distinction feels needlessly divisive and confusing. The new report of the DSM-V Neurodevelopmental Disorders Work Group does away with the distinction altogether, removing the category of Pervasive Developmental Disorder (PDD), and replacing it with the umbrella term of Autism Spectrum Disorders (ASD). If the logic of the new draft is accepted, PDD-NOS, AS, and autism will fall under a single diagnosis of ASD, with varying degrees of severity.
I like simplicity and coherence, so this whole idea appeals to me. Given that AS is an ASD, the present distinction between AS and autism is maddening. And I’m not just saying that because verbal logic appeals to me. Fairness and honesty appeal to me, too. Saying that I have Asperger’s Syndrome feels more and more like a fancy way of distancing myself from the word autism, with all the fear and trembling that the term engenders in the general population.
Enough of that. Time for some solidarity. The first order of business is to stop this nonsense and start using the word autism early and often.
I recently wrote an article for my local paper about my autism diagnosis and all the myths I’ve had to dispel in order to see myself clearly. In the article, I wrote that I was diagnosed this past November with “Asperger’s Syndrome, a high-functioning form of autism.” From that point on, I used the term Asperger’s Syndrome only two more times. In contrast, I used the word autism nine times, and the word autistic twenty-six times. I wasn’t particularly conscious of making these distinctions when I was writing the article. They just happened.
So, that’s progress. I’m about to come out in my local community as a full-fledged autistic person. Doing so feel absolutely right.
But then there’s this high-functioning adjective that appears every single time I define Asperger’s Syndrome. At the moment, there is no consensus in the scientific community about what high-functioning actually means. From what I can gather, it generally describes autistic people with a) average or above-average intelligence, b) a desire to relate to other people, and c) relatively normative language acquisition (even if language development happened a bit later than the norm).
Well, great. I can basically demolish all three parts of the definition in about five minutes:
a) Using an IQ test that relies upon verbal skills (such as the WISC) is not an adequate measure of the intelligence of autistic people.
b) Just because a person doesn’t show a desire to relate to other people doesn’t mean that he or she doesn’t have a desire to relate to other people.
c) Using verbal language is only one way of relating to one’s environment and the people in it.
So what does high-functioning really mean? To me, it means that we can pass in a neuro-typical world. It means that we know how to pretend that we’re no different from anyone else, and that we have marvelously adapted to the norms of the larger community. The higher our functioning, the less of a nuisance we are.
Why, oh why, oh why does the world insist on defining high-functioning by how we appear on the outside, rather than by what’s happening on the inside? Perhaps it’s the neuro-typical reliance on reading nonverbal signals and making an educated guess about what’s going on inside. Do most people simply make the assumption that mind-reading is possible? Do they assume that they don’t have to go to the next level and ask us what’s going on inside? It certainly seems that way.
I’m perseverating about this whole issue right now, because last week, my AS-literate therapist said something that’s been bothering me. She told me about an Asperger’s support group starting in her area, and before I got a chance to get too excited, she said that I might not like it. When I asked her why, she said that most Aspies don’t have my social skills or level of insight.
Oy. Just when I thought she knew what she was talking about.
How does she know about my supposedly great social skills? From two sessions in her office? Yeah, I can definitely navigate my way around a therapist’s office. After all, it’s a highly structured, one-on-one interaction in which I’ve only had 25 years of practice.
I wonder what she’d think if she saw me out in the world. Actually, she might arrive at the same conclusion. I can fake it pretty well. The problem, as I described it to her, is that the gap between how I feel inside and how I appear on the outside is widening every day. She nodded her acknowledgment, but I don’t think she really understands what a crisis this is for me.
And as for my having more insight: Just read the comments to this blog. Or the content of any other AS blog. Or WrongPlanet. Or the many autobiographical books written by autistic people. Given that we don’t just yack all day long about nothing, we’ve had a fair amount of time to quietly observe human interaction and draw some amazing conclusions.
The truth is that I don’t feel particularly high functioning—at least, not in the way that the larger world defines it. There are so many basic tasks that are becoming more and more difficult—driving, cleaning my house, and food shopping. Being around other people right now is close to impossible, because while I’m sick of impersonating a neuro-typical person, I’m not quite sure what the alternative looks like. Plus, my sensory issues make spending large blocks of time with other people very difficult. I feel everything so acutely that it takes me days to recover from things that most people just shrug off.
So, I don’t know whether I want to keep going with using the high-functioning label. Why can’t I just say, “I have Asperger’s Syndrome, a form of autism” or even “I’m autistic”? After all, based on my behavior, people will draw their own conclusions about me. In fact, they may even be confounded by the idea that an autistic person can do whatever it is that I do.
Confounding people is the first step toward breaking down their stereotypes about autism. And that, my friends, is a very good thing.
© 2009 by Rachel Cohen-Rottenberg
18 Responses to “What Does “High-Functioning” Really Mean?”
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To me, “High Functioning” sounds like an apology or an attempt to explain that the autism isn’t “that bad.”
“Just because a person doesn’t show a desire to relate to other people doesn’t mean that he or she doesn’t have a desire to relate to other people. ” So true. NTs have no idea how lonely it can be to be autistic. If one wants to be safe, one pretty much has to be isolated much of the time. Trying to have a casual relationship just doesn’t work and an intense one that works is very rare, and for me at my age, not worth the risk of being hurt yet one more time.
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The Husband June 14th, 2009 at 9:15 am
What jumps out at me here is the parallel to ADA (Americans with Disabilities Act) issues. Used to be that those “otherwise-abled” folks were marginalized — usually by the society that didn’t want or know how to “deal with” them. Or with gays. Or with non-smokers. Or the one-armed bowlers. At some point, enough people (on both sides of the line) realized that marginalizing is not the way to go. (To paraphrase: If one of us is marginalized, we all are marginalized…) Change rarely comes from the dominant society looking around and saying, “How can I help?” It usually comes from the (hopefully metaphorical) barrel of a gun: people speaking and acting up in a way that says, “Here we are. Deal with us. Now.”
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i’ve felt, too that the HF part of the explanation sounds apologetic. i can’t deny that most people have no idea what AS is, but they DO think they have an idea of what autism is, and it’s usually scary.
the spectral nature of autistic disorders, means that labels rarely feel adequate, and always seem to come with caveats. this makes the explanations longer, and sometimes painful, and risks losing sympathy and understanding from otherwise decent people.
i don’t really expect understanding from most people any more, for so many things. it leads to disappointment and hurt (which sounds really depressing), but i would like it. everybody does, even if they can’t admit it.
we would all like to be close to somebody, and we don’t want to scare them. this means educating them, but this is exhausting. the alternative is being alone. sigh. -
John Dale Lyons June 14th, 2009 at 11:20 am
Smells like Aspie Spirit (apologies Nirvana)
Load up on meds
Long for friends
A diagnosis
Not psychosis
I am Austic
Not faralistic
I know I know
A dirty wordchorus:
Hello (x 16)With the DSM out it’s less verbose
Here we are now
Accommodate us
I’m empowered, not contagious
Here we are now
Accommodate us
An ability
An affinity
A mind theory
Not a query
YeaI’m worse at what I want most
And for this “gift” I feel cursed
Our little group has always been
And always will, whatever NT’s thinkchorus
And I forget
Just what it takes
And yet I guess it makes you smile
I found it hard
It’s hard to find
Oh well, whatever, theory of mindchorus
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You rock, John! Great stuff.
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“The higher our functioning, the less of a nuisance we are.”
There you have it.
I prefer the umbrella of ASD, myself. I frequently use autism and Asperger’s interchangeably. In our home, we have three Asperger’s and one Autism. Now, aside from my son’s substantial speech difficulties, he’s not any different that we are. And the HFA label, I think it is misleading. As you noted, the internal dialogue is not necessarily what people see. “Better able to fake neurotypical” is not a marker of the degree of our ASD.
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You CAN say you have Asperger’s or you’re autistic – I do. The distinctions don’t matter to me.
I use whatever I feel like.
And youir therapist was completely wrong. You got it right. Social skills are relative and every Aspie I’ve ever known has had tons of insight.
The difference is how reliably they can show it to outsdie world
Kate -
This makes perfect sense to me on an intellectual or theoretical level.
But when I’m in conversation with someone, I have a hard time not adding that my daughter’s autism is high functioning. And I get how it might seem like an apology, although I’m not feeling apologetic.
I guess I think back to pre-ASD days when I had such a negative impression of the word Autism, and therefore I think others have that same negative view as well. And then I think I don’t want them to think negatively of my daughter, so I throw out the term ‘high functioning.’ As if that explains that she is practically normal.
But all that’s really doing is becoming complicit with the notion that a not HF autistic is something negative or not normal.
I can see how the descriptor high functioning has turned into something that you hate.
I admit I have not fully embraced the term Autism, but I am working on it. I feel a great deal of shame in admitting it even.
Thank you for writing this post. It has really made me think.
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I am also working on embracing “autism” and “autistic”, although I do feel like perhaps Asperger’s as a category has some descriptive value. It feels that way to me, personally, but maybe that is because of a lifetime of baggage related to the “autism” word.
And you are spot-on about what “high-functioning” means. It is a definition of how a person relates to the NT world, and not how the person is on the inside. It’s not meaningless, but I think too often it is an excuse to assume that someone “high-functioning” is less in need of support/services than someone less “high-functioning”, which is not necessarily true. The cost of functioning in the NT world can be high, as you and I both know, and it carries its own problems.
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Jennifer Gardner June 15th, 2009 at 10:59 am
When the time comes that I feel like someone should know that my husband is an Aspie, I get the deer in headlights look from the individual I have told. So I ponder for a moment and say, “He has a form of autism”. Then the person loosen’s up. Oh OK, they say.
To be honest, that response gets on my nerves. Ask me questions if you don’t know. geez
My husband had a melt down this weekend. It was a nasty one. In the deli at a grocery of all places. He and I had a miscommunication. With me, my husband is very together. He is in control a lot. You wouldn’t know without him saying that he suffers internally. One minute we are a well oiled machine. He acts like he has a plan. The next minute, because the deli clerk made him feel “funny”, he mentally runs away. He drops the control like a hot potato. I’m left standing there to grab the steering wheel. Suddenly, we are a run away car. I scramble to take control. My husband’s position with me hasn’t changed though. The whole time he is a backseat driver. From an NT standpoint, he sounds like a jerk who should just order the damned meat himself since he is so critical of the way I am doing it. From an Aspie standpoint, he is terrified and just wants help. Later he asked me, “Why does everyone always think I have it all together with a master plan?” My response to him is that he is so principled and plans things so masterfully all the time, people just come to expect that he has it together. I am no exception. . . .
To answer your question Rachel, us NT’s forget that just because you look good on the outside, the inside is doing something else. I am guilty of it everyday! -
Jennifer Gardner – wow, I can really relate to what you say here. My husband and I have the same relationship, only reversed. I feel much more relaxed and confident when I’m with my husband, especially out and about. He’s definitely the force moving us through situations….and I’m a backseat driver, too . I’ve been working on that for years, though. With some improvement!
Rachel – you’re absolutely right, though I’d never thought about it this clearly, I suppose because trying to pass for NT has been my goal for most of my life (though of course I didn’t call it that before I knew I was autistic). Whether someone is “high” or “low” functioning is all about how NTs percieve that person to operate in the world, relative to how an average NT operates. Which is why so many kids start out lower and end up higher, or “outgrow” their diagnoses. Pffft. Outgrow your neurology? I think not. Get better and better at practiced NT skills? Yes.
I’ve actually thought quite a bit the past week or two about Amanda Baggs, who is considered “low” functioning. She doesn’t speak with her own mouth, and she does lots of autisticky flapping and moving and noisemaking. But she’s a bright, articulate woman, and quite an activist. I’m sure, before she got her speech simulator (think Stephen Hawking) and internet access, that people thought she was retarded, unreachable, largely “not there,” because she didn’t communicate or behave in typical ways. I’m sure *I* would have thought the same thing if I’d just seen her somewhere, or seen her “my native language” video (on YouTube) without the accompanying text. But I’d have been so incredibly wrong.
Of course, now that she’s got ways to communicate with the outside world that most people can relate to, her diagnosis of “low” functioning is considered “inaccurate.” While nothing’s changed about *her*.
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The more ways I learn to be like “everybody else” the less I feel like myself. My first twenty years I had no idea I was “abnormal” because my home was very, very dull and routine (and very good therefore!) My next ten years I tried to adapt, thinking this was a cultural issue and all I got for it was a lost feeling and a huge cluster of “psychosomatic” illnesses. I looked the part on the outside but my body sure did everything possible to make me stop. I wish those around me could understand that trying to conform makes me sick, and not metaphorically so!
Thanks for another fine entry. Every day I spend with your words is a day I get stronger.
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Jennifer June 16th, 2009 at 3:17 am
“The new report of the DSM-V Neurodevelopmental Disorders Work Group does away with the distinction altogether, removing the category of Pervasive Developmental Disorder (PDD), and replacing it with the umbrella term of Autism Spectrum Disorders (ASD). If the logic of the new draft is accepted, PDD-NOS, AS, and autism will fall under a single diagnosis of ASD, with varying degrees of severity.”
I would go a step further….I think that there is even an autisitic component in the neurology of every NT’er, to a lesser or greater degree.
I wouldn’t rule out if some degree of autism can be out-grown, but whether it’s a matter of time, social conditioning, or something else.
What April said about routine is one of those things I have been wondering about too….I wonder whether routine is really as good for an Aspie as people think. Of course everybody has some degree of routine, such as waking, having breakfast, and dressing…..but do those things always have to be in the same order, for an Aspie to feel comfortable?
Can challenging the comfort zone be a good thing too?
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Wow, everyone, thanks for all your comments. It’s really strengthening to know that I’m not alone in having these feelings.
Jennifer G: The same kind of “backseat driving” has happened with Bob and me–with me turning over a task to him and then backseat driving as he attempts to do it. Thanks for putting it into words.
Saja: Amanda Baggs’ video really broke open the whole question of high versus low functioning for me. It’s an amazing thing to watch. I wonder if the “high-moderate-low” hierarchy is simply reflective of the way that the larger world likes to put everything into rank order, and that we’ve bought into it in our quest to appear NT.
Jennifer: I don’t know how other Aspies are, but some of my routines are extremely important, and others come and go. It’s really individual. Consult your local Aspie.
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All of this is fascinating to me and has given me so much to think about. I have witnessed first-hand the difference between how people treat my child who might be introduced as having Non-Verbal Learning Disorder versus introducing him as having Aspergers or even ASD. I live in a small town, and the word “autism” scares even old friends away. They simply can’t be “responsible” or risk having their child around someone with that diagnosis. I am sure that perspective is crazy for so many people, as well it should be, but it is the reality of our lives at this point. Introduce a child to a church or camp or group sports situation and explain that he or she has ADHD or NLD and you get nods of recognition and a cheerful inclusion. Introduce a child (even a highly social, reasonably compliant child) as having “autism” and you might be turned away.
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Really interesting reading this stuff.
I’ve wandered around for years thinking something was wrong because of how I view things and people, how I feel and so on. I thought for quite a while that I was OCD and a bit mentally ill or something.
As I grew up I was bright, verbose and emotionally in real difficulties. I had few friends (actually none) and even now as an adult I’ve never managed more than 1 or 2 at a time. I’ve managed to have 2 friends now for 4 and 6 years but I’m in my 30s and have to work at contact.
Problem is being so hurt by other people and not understanding them left me feeling it was all my fault and led to some spectacular melt downs. So in my early 20s I began to learn how to mask what was going on inside. I now feel like a master chess player when dealing with people as I deploy all my strategies to understand and second guess people so I don’t get hurt. Trouble is my learned banter responses often miss the mark but the people around me just assume I’m a bit eccentric. I still desperately want people to like me but want to run away and hide as well.
I work in special needs education and always thought one or two too many of the ASD traits fitted me but not entirely, even AS wasn’t spot on. I can socialise, I can empathise, I get jokes and sarcasm. BUT it feels analytically applied, like the chess game I alluded to. So I took a couple of on line tests and came back with quite highish scores (e.g. 164/200).
Many of the presentations of ASD/AS seem to fit, routines I get distressed if I can’t follow, overwhelming emotions or none at all, struggling to read other people, meltdowns that include lashing out at inaimate objects like a four year old, don’t like dealing with people. My wife even says I have a work voice/persona which I kind of put on compared to the real me at home. I feel like I do this with friends and to an extent even her. Loneliness, what is it they say about a lack of appreciation of layered language?
Now my closest friends seem to think I’m off my trolley. My wife thinks there is something in it but after so long learning to cope and mask it it’s hard to spot. My main strategy is being detached to the point where I’m actually inside looking at someone else running my body for me so I don’t need to deal with people, he does it for me.
When I work with ASD pupils we look to skill them in coping strategies and communication skills. We don’t really think about helping them with learning about themselves and being at peace.
So what happens if you learn all this coping strategies so you can ‘pass’ in neuro society before you realise what might be wrong??? How then do you know what you are anymore?
Does anyone have resonance with this? Why is it the more blogs I read from autistic people the more it sounds like the ‘symptoms’ list only covers a small proportion of the behaviours? For a group of people whom are supposed to have problems with feelings seems like we have them too deeply to always cope with.
For me now I have a journey to find out where I fit into this equation. I’ve felt lost and alone all my life living inside here, maybe this time I’ll find an answer.
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Rob, you’re not alone in all the things you’re feeling. So many of us have gone through it, and continue to. So much of what is written by the “experts” is off the mark because most of them are neuro-typical and can’t intuitively understand what’s going on inside us. The best of them listen and learn. The worst of them try to shoehorn us into their theories and say some very damaging things in the process.
I’ve gotten the best information and solace from other autistic people. We are the experts, as far as I’m concerned. Just as even the most sensitive man cannot be an expert on what it’s like to be a woman, so even the most sensitive neuro-typical person cannot be an expert on what it’s like to be autistic. It’s simple neurology. It can’t be done.
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Taylor Selseth October 26th, 2009 at 11:29 pm
Learning about Amanda Baggs was really eye-opening to me, and showed me that a lot of assumptions about so-called “low functioning” autistics are totally wrong. She is Autism Speaks’s worst nightmare. Even since then I have had no problem with calling myself autistic.
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