Higher than Mountains or Lower than Valleys?
October 27th, 2007Are you “somewhere on the autistic spectrum” (NOT the “autism line going from higher to lower” or such)?
If so, I’m going to say this plainly.
Don’t tell me you’re high functioning. Don’t try to distinguish yourself from “those” people. You might find out you have more in common with those you label as “low functioning” than you think. There are tons of intelligent, funny, creative, etc, people who are “those” people. There are plenty of “those” people who want more out of life, and know exactly what the deal is that they have received in life.
Not only that, but don’t tell me you’re low functioning. This isn’t a game, and no points can be scored by proving that you are “worse” off than someone else. Everyone has problems, even people not on the autistic spectrum (most people who kill themselves, for instance, are not autistic). Suffering is not limited to any one group of people. Not only that, but happiness or sadness has nothing to do with functioning level, physical pain, the lot you’ve been dealt in life, or many other things – you’ll find people with any combination of bad things that are happy, and you’ll find people who “have it all” who are miserable. Misery is misery, and doesn’t make you or anyone else “low functioning.” It means you are suffering and is independent of the autism diagnosis. But, that all said, you might be surprised if you learn how many “high functioning” people have exactly the problems you have that make you “low functioning.” You might even be surprised to learn that some of these things are just as “bad” but perhaps not obvious to you.
Finally, if you call yourself “Asperger’s” to differentiate yourself from “Autistic”, ask yourself this question: WHY? What makes you different? Are you sure that really makes you different?
For too long, outsiders – people without autism – have tried to separate us into nice, neat categories. These categories have been designed to support pet theories and prevent dissent. Many researchers have thought, “So what if some people with autism claim that my theory is wrong, and doesn’t match their experience. I’ll just call them ‘Asperger’s’ and say I’m talking about ‘autistics’.” It’s about time that we, autistic people (regardless of whether we have a piece of paper that says “PDD”, “Asperger’s”, “Autism”, or “Just Plain Crazy”), stop aiding in this. None of us – contrary to what some might think – could determine what diagnosis 20 randomly selected people, with diagnosis’s of “Autism”, “Asperger’s”, and “Other”, fit which category, nor would any two of us categorize these people the same way. Nor would any two of us agree which of these 20 people are “high” functioning and which are “low” functioning. Perhaps that means these categories aren’t quite yet fit for use…
When I first learned of Asperger’s, I felt the need to distinguish it from autism. In fact, I wasn’t even comfortable thinking of it as being “related to” autism.
That view disappeared pretty quickly as I learned more about autism and saw that it was more than the stereotypes, and found it increasingly difficult to see a distinction between “Asperger’s” and “high-function autism” or “low-functioning autism”, and now I just saw “autistic” and don’t bother with the various divisions.
As someone who has bounced around the specturm like some renegade radio frequency I’ve always been baffled by the arbitrary nature of autism nomenclature. I know from personal experience that I can be simultaneously “high-functioning” and “low-functioning” in just about everything I do so the divisions have always felt like an additional burden to carry about as if autism was a giant gameboard filled with goalposts and a million referrees all shouting and competing to get you on the team. I think what’s harmful is that I tend to internalize this ‘name game’ and it only complicates my emotional or inner life. I know that if I feel miserable or lonely or display irritability or if I fumble with the ‘control dials’ involved with navigating a supermarket or decoding assembly directions or being overwhelmed by product packaging that I tend to associate these kinds of feelings and behavior with my “lower-functioning side” and then I automatically out of some guilt or shame try to hide these feelings or displays of “bad” or “incompetent” behavior because on the surface I’m supposed to be a “higher-functioning autistic” or Aspie. That somehow I should know better; should get back on the team so to speak. This contant exposure to organizational word posturing and diagnostic categorization is so harmful, so hard to decompress that it feels like a matter of life or death at times. All I know is that I need to figure out how to stop internalizing so much of this kind of spectrum static if I’m ever going to establish a clearer, less degraded ’signal’ or life frequency. The first step for me was to stop using the Aspie label to describe myself and acknowledge that I am simply an autistic person who oscillates on a wider bandwidth. The name of the radio station, program, or format; or the band assignment begins to not matter as much and helps to declutter one’s inner life. But believe me, this “denominating process” has taken a few years and the reassignments have not always been so elegantly carried out! I went through an agonizing period over 3 years ago when I finally was goaded enough to resign from the advisory board of a NYC-based organization that was and continues to be heavily invested in maintaining what I can only call “high-end autism”; namely, an autism hierarchy in which high-achieving, photogenic, and telegenic Aspies dominate the broadcasting station. Bad or inappropriate behavior (as deemed or doled out by the coach or his point people), struggling to see through team-engendered bullshit, or true dissent were all routinely dismissed and bundled off as exanples of lower-functioning autism (you know, its ‘darker side’) and it was presumed that there were “other” organizations better suited to handle “those” kinds of people. In other words, stop that babbling and drooling and eminently “not ready for primetime” behavior and learn how to talk the Aspie talk. And let me tell you, they know how to talk. In any case, thanks again Joel for a very poignant reminder of how easily we pull ourselves down when we play the name game.
love your blog and GOOD FOR YOU!
THANK YOU.
Anytime someone uses the word “high-functioning” to describe me, I say, “Okay, let’s throw the words ‘high-functioning’ and ‘low-functioning’ out, right now, and the assumptions that go along with it.”
I am finding out, for example, that my mom withheld information about me being diagnosed as autistic in childhood. Usually the “Asperger’s” diagnosis is made if a child can talk, but even though I can be verbal, I am “higher-functioning” on some days and “lower-functioning” on others. I was also diagnosed with autism, not with Asperger’s. I wish my mom had told me this years ago, before my mis-diagnosis as an adult, but yeah… at least I know now.
I actually went head-to-head this past week with a so-called “disability advocate” in my county who decided to say she was more “high-functioning” than the other autistics in the community, and then told me I am a “severely low-functioning” autistic. She had made some derogatory remarks about MR, as well, and this is nobody who should be allowed to work around disabled people, period.
I rant about this because it’s symptomatic of a greater whole. In my local autistic community, EVERYONE loves the words “high-functioning” v. “low-functioning” and “Asperger’s/PDD-NOS” v. “classic” autism. I was diagnosed with “classic” autism as a child, I may be verbal, but I am also very obviously autistic.
Besides the term of functioning used as assumptions about a person’s abilities, it also smacks of a remark on the quality of a person’s life. I’ve met some so-called “low-functioning” autistics (as in non-verbal, which seems to be the deciding factor out here as of functioning) who impress me with their intelligence and I think they are beautiful as they are.
I had made a rant not long ago, about how ableism strikes even in the disabled community as a whole… how it’s accepted (if not okay) for people with other disabilities to make fun of individuals with MR, schizophrenia, and autism (which seem to be the “bottom three”), and then there seems to be an Elitist Competition between autistics.
I think it’s important to remember in all of this, autism affects individuals on an individual level. My autism isn’t going to be the same as yours isn’t going to be the same as Amanda Baggs’, etc. But we are still all autistic. Rather than making divisions between levels of “functioning” and then different subtypes of the spectrum, we need to understand that each of us are affected differently by our autism, and therefore cannot make comparisons. We’re just autistic.
Thanks, again. I am so glad I’m not the only person trying to point this out.
Nice post!
My son can certainly bounce around from high to low functioning. So much so that we don’t use those descriptors at all. And if he “slides up the spectrum” we won’t call him PDD NOS or Aspergers either.
Okay – I’m going to explain why I make the distinction, and some of it may be gender-based.
Back when I was working for a University mailroom, a phrase on the back of one of the newsletters caught my eye. The phrase was “Pretending to be Normal.” This phrase summed up a huge chunk of my life experience, perhaps the one thread running through it, so after reading the review, I read the book and then bought it. The author said she had Asperger’s. Her story read so much like my own biography on another time track, I decided I probably had it too.
Then I started reading about autism and ran across such concepts as “great spatial sense – excellent with numbers – musical prodigy – see patterns at a single glance – not very verbally adept – don’t care what other people think, don’t even notice it – ” etc. That was SO not me!
My spatial sense stinks. I’m very verbal but not very practical. Numbers were not my strength, nor was music. I cared a lot for connecting with other people (though I’m a major introvert and can’t take too much interaction) and have always been in great distress over my many faux pas, misunderstandings, and failures to connect.
Therefore, I reasoned, two things that manifested so differently must be two separate things.
As I said, perhaps the difference in manifestation is one thing being filtered through the second X chromosome and however much estrogen I have. Who knows? But there’s my reasoning, make of it what you will.
“Finally, if you call yourself “Asperger’s” to differentiate yourself from “Autistic”, ask yourself this question: WHY? What makes you different? Are you sure that really makes you different?”
There’s sod all that makes me different with the sole exception that according to the DSM Iv criteria I had communicative pharases before the age of 3. That’s it. So yes, I shouldn’t use the difference and say I’m Aspergers. It’s just that I only got the answer to why I am as I am fairly recently and before I knew much the description of Aspergers fitted me well.
*nods emphatically*
Besides, they throw MY variation of club 299 out entirely when they do that. And I’ve found that in many ways I have more in common with much less chatty autistic persons than with those who verbalize superficially as well as I do (I swear, under stress if I stop talking for too long I forget how…). The categories aren’t sensible–otherwise, how could people regularly be labeled in 2-3 of them as a matter of course throughout their lives? Getting hung up on one arbitrary skill set to determine someone’s worth is stupid anyway-and it is almost ALWAYS speech, gah…
Great post.
And being verbal doesn’t mean that a person can swan through life with no communication issues. I’m verbal and I struggle to tell someone about my needs or wants. I can rattle on about a historical event, but can’t say I’d like a drink, or that I’m in pain. I rarely initiate talking, struggle to enter group conversations, pause in odd places, used to speak far too fast and sometimes lose understanding completely of words. Then there’s the things that aren’t a problem for me, eg doing long monologues to myself and very ocassionally getting stuck on saying one particular word.
But yes, it is wrong to think that speech is the be all and end all.
Pat Mathews, you may wish to read about Nonverbal Learning Disabilities. Debate rages about whether these learning disabilities are on the autism spectrum — personally, I think there’s a lot of overlap documented. And there is a theory that more pre-natal estrogen helps the verbal skills and messes up the spatial skills. (I am not kidding.)
Well, I say “Aspie” because I have strong verbal skills and always have. But that doesn’t really make me much different from a friend of mine, who started out with a speech delay and now has similarly good verbal skills. He’s actually at a higher functioning level than I’m at because I have more sensory problems and he has a higher IQ.
Anyway, I don’t think the big problem is so much splitting the Spectrum into high, low, and I-have-no-clue; but the effect that has on us–the way the low-functioning people figure the rest of us are hardly autistic at all, and the way the high functioning people look down at the low functioning people and say “they need a cure and I don’t”, as if it’s impossible to be happy if you need an aide, or something…
It’s stupid. The lack of communication, lack of unity. It’s really costing us.
The definitions aren’t at fault, though. Just like the word “disabled” should have a neutral connotation but has a bad connotation, the functioning labels shouldn’t have connotations either… but they do… and that separates people.
And then there’s the people who don’t fit in anywhere, who are considered high or low functioning depending on who you ask… they don’t even have solid definitions.
In my perfect world, high and low functioning would have one solid, consistent definition; and neither would really matter to either the person or anyone around him–it’s just be another descriptive word, like “redhead” or “female”.
I was more limited in my ability to communicate when I was supposedly ‘verbal’, and that’s something very few people appreciate.
{Nodding.} My older son is often seen as high functioning because he looks so typical (er…), while my younger son is considered low functioning because he’s nonverbal and quite atypical. Yet today was our neighborhood Halloween party on the cul-de-sac, and which of those sons do you suppose had the time of his life, and which one had to go back to the house no fewer than three times because of sensory overload, anxiety and frustration? Not the one “they” might expect!
My official DXes are “Pervasive Developmental Disorder” and “Asperger’s” (both are in my chart, not sure which, if either, takes precedence). But I’m perfectly fine with just describing myself as “autistic”. From interacting with other autistics, it has become abundantly clear to me that it’s not a person’s “spectrum label” (or whatever you want to call it) that determines how much I’m going to have in common with them. I’ve got more in common with some “functionally nonverbal” folks than with some who are a lot more verbal, etc.
However, it took me a while to get to the point where I was comfortable saying, “I’m autistic”, because I didn’t want to deal with people saying, “How dare you claim that term for yourself and in doing so trivialize the struggles of those real autistics!”
Eventually, though, it dawned on me that if I refused to identify myself as “autistic”, I was actually doing more to trivialize others — e.g., I would have been perpetuating the notion of a false dividing line between “high functioning/Asperger’s” and “low functioning/Autistic” that doesn’t actually exist.
It took me a while to come around to this viewpoint, because the “you’re trivializing the folks who really struggle!” argument was so vehement, but then I learned more about the politics of classification.
Classifying some people as “high functioning” and others as “low functioning” (a) doesn’t provide any useful information about anything a person can or cannot do, and (b) tends to sequester off entire segments of the autistic population as completely subject to the control of institutions and related authorities.
I think that some people are terrified of autistic self-advocates because they don’t like to think that the people they’ve recommended for institutionalization, etc., actually have real thoughts and feelings.
One of the most common uses of the “low functioning” label I’ve seen has been that of justifying treatment that you’d get arrested for if you did the same thing to a dog or cat.
I know some people believe that the designation is important in order to ensure that certain people get the right educational services, etc., but I think that services should be provided on the basis of what an individual actually needs — no need to assign them to an overall “functioning level” category at all.
Still, though, I occasionally slip. I occasionally get lazy, and don’t feel like explaining how all autistic people are different, etc. I have used “Asperger’s” and “high-functioning” on various occasions to describe myself. But I’m trying to break that habit. I don’t think it does anyone any good!
Great post and interesting comments.
The best quote I received about the high/low debate was from the psychologist who DX’d me:
“You’re doing very well for an autistic person.”
Thanks…now what the [insert expletive of choice] does that mean?
And yet…
…the phrase “neurotypical” still seems to be OK as if the rest of us 6.5 billion all are the same.
Double standard?
Jim S, I think you missed the point. You may want to re-read the post and comments.
Great post. I often have difficulty when people ask me about my son. I avoid giving a high/low descriptor, and just say he’s Autistic. Some people challenge that by saying he doesn’t “look” Autistic, and that is where I usually insert the “spectrum” explanation.
Speaking of the Spectrum, if you think about it, a spectrum doesn’t have clear lines between colors, it’s fuzzy where the colors meet. I think I’d like to see my son (and others) that way. Although he struggles, yes, he is verbal. He also has times where he welcomes physical touch, and times where his tactile difensiveness is just too much. Sometimes he doesn’t like you to look at him. Others, if you look away from him, he gets angry. There are times when he is the most loving child in the world, and other moments when he tries to kick my ass with his 3 foot self.
Like a number of people in the above comments, my son too can swing from “high” to “low” functioning depending on the situation, and who’s evaluating. We are a society who loves labels. My kid needed a label to receive services for school- other than that, he is my S.O.N.
Well I feel that it is unreasonable to demand that people categorically declare themselves according to your whims, even if the proposed declaration is a more generic term.
People will declare themselves with the terms they are comfortable with.
Get ready to handle it.
Actually, I’m not demanding anything – I can’t force you to do anything, and I am in touch with reality enough to recognize that.
As for the terms, it’s not about a “more generic” term, but rather an “accurate” term. “High Functioning Autistic” just plain isn’t accurate, at least if people think there is a difference between that and a “Low Functioning Autistic”. That’s my gripe – accuracy, not generality.
I feel I have to be cautious about this because I’m self-diagnosed, so I usually don’t volunteer the information at all, and if I have to for some reason I just say I have “autistic traits” but no diagnosis. If people want me to go into more detail I will- and I don’t use functioning labels because none apply. I have moderate executive dysfunction that wreaks havoc on my life, extreme anxiety, super-sensitive senses, and other traits, but almost normal social skills for a person my age, excluding some things I have a lot of difficulty with. My social skills are actually good enough that I probably couldn’t get a diagnosis if I wanted- yet I’m very clearly autistic, if you take the time to hear me explain it and/or see me during one of my more “low-functioning” moments, where stimming increases, social and verbal abilities plummet, and sensory problems are even more easily aggravated than before.
I do think there are dangers in categorizing. Unfortunately, in school systems being labeled is necessary to get any help at all. That, however is one reason we decided to home school. It is much easier to focus on strengths and even pointing to positives in areas of struggles. When a child is in the public school system parents are forced to play a bizarre game of labeling to get help and not agreeing with a label.
Great post. I admit I often feel compelled to say “Asperger’s” because that is what my diagnosis says, because my social impairments really are relatively mild and because I think people won’t understand otherwise. I’m afraid no one believe me if I try and call myself “autistic.” But I know it’s wrong to try and distance myself from other autistics based on people’s stereotypes and misconceptions and I need to stop doing it.
Sarah: Yep, that’s similar to the position I’m in (though whether a given characteristic is “mild” or not really depends on the environment, what’s going on around me, etc. If I’m seriously overloaded, I doubt I resemble anyone’s idea of “high functioning”.)
Though so far nobody has actively disbelieved me when I’ve used the word “autistic”, I did get a question on my blog recently from someone who asked, “So, are you really ‘full-blown autistic’ or do you have Asperger’s”?
In response to that I went off on some long babbly essay about the history of autism and how not everyone fits the modern stereotype, etc. That sort of response is feasible in print, but if someone puts me on the spot in realtime, face-to-face communication, there’s no way I’d be able to come up with something like that. So I’m never really sure what I “should” be saying in such situations yet.
I guess I just hope to see the day when a person can say, “I’m autistic” or “My kid/brother/cousin/friend is autistic” and have the response be something like, “Ok, what are you/they interested in?”, as opposed to an immediate question about the autistic person’s “functioning level”.
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comment number 16 by: Anna
October 29th, 2007 at 8:51 am
The best quote I received about the high/low debate was from the psychologist who DX’d me:
“You’re doing very well for an autistic person.”
Thanks…now what the [insert expletive of choice] does that mean?”
It means precisely the same thing as the math professor meant when he said I’d done very well for a girl.
My own expletive of choice included reference to pigs of the male chauvinist variety.
Great points raised but I TOTALLY disaggree with “most people who kill themselves are not Autistic”…
Rubbish…
most people who kill themselves are males with Asperger’s and that’s Autism in pure form without mental retardation…. you can’t get any more Autistic than that. Sorry!
I have Asperger’s myself and I’ve tried to kill myself 3 times now and constantly have to fight those suicidal thoughts on nearly daily basis.
My best friend who was a boy (I’m a girl, ok, a woman) had AS and killed himself. Also, someone I care about killed herslef and she had AS.
Just because when someone kills themselves they don’t have an official diagnosis (or if they do – nobody mentions it to YOU!) it doesn’t mean people who killthemselves are not Autistic.
Normal people don’t have the same “problems” with two-faced society because THEY ARE A PART OF THIS TWO-FACED REALITY!!!!
Like hello, anybody there?!!!!!
Autistic people kill themselves because we are predisposed to existential depression, which for those who don’t know what that is means: we see stuff the way it REALLY IS and it sucks how much injustice is out there, how people say one thing but do the opposite and how much injustice is out there… It’s depressing as hell… and then nobody seems to understand you or even want to try and it’s apparently “all your fault!” for seeing the world through your “eyes with faulty perception”…. They lie, they say one thing but they do the opposite, they stub you in the bag but you’re the loser…. Logic in that? none what so ever, but you’re the sucker who’d asked so now you deal with it….. Why even care? just do a line, smoke and drink and it’ll be alright on the night….. who gives a s****…..
I do, I care a great deal and tjhat’s why I’m almost permanently depressed….. cause life’s not what you’d imagined and than it gets worse….
little children get molested every day and then their Souls die, if they don’t kill them first (they’d be better of dead…) [Blog Owner removed some sentences from the comment that discussed the women being sexually abused in terms too graphic for this blog]….. It’s all warped, it’s all “f***** up, but what are you gonna do? Kill yourself? Like you have a choice…. really? Democracy? it does exist? in whose dream?
What a lot of crap….. My Autistic mind boggles……
Roza,
I can see the pain in your words, and am sorry for that.
But I am also autistic and male, and know lots of neurotypicals. Neurotypicals are no more all hateful than autistics are all wonderful. We all have character flaws and problems, and there are neurotypicals – included among them the people you talk about who were abused. Do you not think they see evils in the world?
I’ve been abused, and in ways that even my closest friends don’t fully know. I know what abuse is like, I know what it does to people, and I’ve barely survived it. But autistics aren’t the only ones abused, and we don’t corner the market when it comes to suffering.
I also refuse to get into the game of trying to figure out “who has it worse” in life. First of all, when you play that game, you might be surprised who you’re talking to (you do not know my life or what I’ve lived through, for instance, and you very well may be making assumptions, just as you certainly are when you group all neurotypicals into the “two faced” category). I’ve also met two-faced autistics, BTW.
Secondly, all suffering is suffering. You can’t compare it. And all who suffer need relief.
Autistics are also not the only ones who get a life that they don’t want. Many neurotypicals share that with you.
Finally, I disagree with your comments about abuse survivors and “souls dying.” There are amazing people, stronger than I can understand, who have endured truly horrific abuse, yet love life today. I don’t understand that, but it is true. There can be healing. Does it ever go away? No, it does not. But is there no hope? There is still hope.
Once again, I’m sorry that you have experienced more pain than pleasure in this life. I hope you believe me when I say, as someone who may have walked closer to your path than you think, that there is still hope.
It seems there could be some middle functioning autistics if the terms high or low functioning don’t apply consistently. But denying distinctions in functioning level is a sick lie. It is not a show of respect or inclusion or whatever, but a very self serving thing for the high-functioning to do. Common traits found along the spectrum don’t make the disparities less real or significant. You should set aside some of your own petty grievances for a second when you consider denying the hardships of the less fortunate. Some of you high-functioning ones clearly don’t want to share your mental qualities with those without them. You want it all for yourself.
Lurker, it amazes me at how invested some people are in the high/low thing. Just because there are differences doesn’t make those differences best explained by calling people “high” or “low” functioning. But I also note you don’t directly address any of the points I made.
Lurker:
I’ve seen “functioning level” applied to all kinds of disabilities, and I’ve never seen clear standards by which it is measured. The closest thing to a standard I’ve found is IQ scores. (The official definition of “high-functioning autism” is “an autistic with an IQ over 70”). But IQ tests don’t measure how well you function: they measure how well you score on IQ tests.
How someone functions depends on a HUGE variety of factors, many of which have nothing to do with any disabilities they have. (Their environment, for instance). There is no way you can average all these factors together. What people seem to do is take one or two that they think are important and make blanket statements based on them. (In autism, “speech” is one of these. In my disability, it seems to be “grades in school”).
A big problem with the concept of “functioning level” is that it doesn’t measure how someone functions: it seems to measure how much they appear like a non-disabled person. When I was in school, I got good grades and lived pretty much like most college students do: I probably would’ve been considered “high-functioning” then. Now I live at home, am unemployed, and only know how to get to a few places on my own. I would probably be considered “lower-functioning” than I was in the past. Even though nothing about me has changed.
Saying I was “high-functioning” in school and “low-functioning” out of it says nothing about how I actually function
. I have much less anxiety now that I’m out of school and don’t have to be in a strange building for several hours every day; I have more time and energy to learn things. (Like, where certain places are in the neighborhood–I didn’t know how to get anywhere on my own when I was in school). So I think I function better now, because I don’t have to pretend to function like someone else.
Speech and IQ aren’t always enough to determine if one is high functioning or not. There are other abilities to consider. But those with high IQ and who are good at speech tend to be high functioning, even though there are exceptions where high/low functioning labels don’t apply well. There could be many variations in speech ability. Functioning level could be continuous. But there are still disparities, where some will live much better than some others. There is a lot that can be missed out on. And claiming that everyone has problems or that anybody can suffer or whatever is far from convincing or valid to the argument.
Lurker, there are *LOTS* of reasons other than anything intrinsic in someone’s presentation of autism that can cause them to “live much better than some others”. Type of supports, abuse, medication, and institutionalization all have really major effects, and sadly MOST of the research that deals with autism is studying not just autism, but autistics that are abused, institutionalized, medicated, and/or lack proper support. Yet these variables are not considered by the researchers and are not controlled for in almost any study. That’s a big, big problem right now. But it means that two people with absolutely identical intrinsic autistic characteristics can seem at complete opposite ends of the “do they live life like the neurotypical ideal” spectrum.
You missed the point of my statements about everyone having problems – suffering doesn’t make anyone “low functioning” and you don’t need to be “low functioning” to suffer. These are completely independent variables. I do not doubt that suffering exists, nor do I doubt differences in functioning exist. I do doubt that these are dependent variables.
Finally, the “exceptions” are key to any theory. You cannot just dismiss contradictory evidence by claiming “exception”.
Negative, culturally determined, and weighted variables such as abuse, institutionalization, medication, degree of support, etc. do affect research protocol and outcome with respect to determining what constitutes “low-” versus “high-functioning” autism. In a sense the concept of a clearly presented autistic subject is doomed from the start when research doesn’t screen out or set up controls for the above variables. You can’t assign a predictive value (i.e., “low” versus “high”) to a performative outcome like functioning if your data is already flawed. I think the real issue is that a performative outcome like “functioning” itself is open to debate in that it often fails to separate cognition from the social. I think here’s a case in which research in general could benefit from an autistic mindset; namely, the overly determined, socially-biased, and labile nature of functioning ability. If it feels “constructed” and arbitrary to so many autistics then maybe the concept of “low-” versus “high-functioning” needs to be ditched or reconfigured in a new way.
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I agree there are disparities among autistic people (or any other kinds of people to whom “functioning level” is applied). I just don’t think those disparities separate them into two distinct groups.
There are studies that try to find differences between “high-functioning autism” and Asperger Syndrome. Most of them use the DSM-IV criteria for each. There was a study at Yale a while ago that found that the “high-functioning” autistic subjects and the Asperger subjects had different neuropsychological profiles. (Among other things, that those with HFA had better visual-spatial skills than verbal skills, and those with AS were the opposite). At the time this study was done, they said that all the AS subjects had this particular profile. Then later, they tried to replicate this study and said only 80% of people with AS had this profile. The original study is here:
http://tinyurl.com/2jrz68
Then other groups tried to replicate this study–some found similar neuropsychological differences, and some haven’t. And at least one study found that the AS subjects had *better* visual-perceptual skills than the HFA subjects:
http://tinyurl.com/3a2fya
So basically, all we know for sure is that autistic people don’t all think alike . I don’t even think we’ve proven that there are two–and only two–neuropsychological profiles that autistic people can have.
In the Nonverbal Learning Disability community (or, at least in the “people with NLD and their families” community”), we describe all the disparities between us without a clunky binary system. While professionals might write papers talking about “high-functioning” and “lower-functioning” people with NLD–without defining their terms, BTW–we just describe the skills, needs and disabilities that each of us have. It’s far more informative and helpful to describe our differences this way. The only “problems” are that it takes longer, and people don’t end up in nice, neat categories.
Lurker said: “But there are still disparities, where some will live much better than some others.”
Well, then it’s worth looking at WHY some people are living “better” or “worse” than others, and trying to see what can be done to help people live better. The problem with “functioning levels” when used in this regard is that when people are designated as, say, “low functioning”, their problems are likely to be blamed by default on intrinsic “deficits” as opposed to, say, environmental problems or abuse or even illness.
I read a while back about a woman who died in an institution from a stomach perforation. She’d been showing signs of illness all day (e.g., refusing to eat, lying down a lot), but this was interpreted as “bad behavior”, and she was punished instead of helped. It is absolutely not true that we need to classify people’s overall “functioning levels” into High or Low in order for them to receive the kind of help they need — the data seems to indicate otherwise.
There are, unfortunately, plenty of autistics who end up missing out on needed medical treatment, or who end up staying in abusive or inappropriate environments because either (a) their issues are assumed to be the result of their “low functioning” level, or (b) their speech or other abilities cause people to assume that they’re “high functioning” enough to be able to ask for and seek help when needed (when that isn’t true at all).
In either case, the “functioning level” label isn’t helping anyone, and is actually contributing toward harm. I know that in some cases a particular “functioning level” label does make or break a person’s ability to get a particular service, but that’s a problem with the service system, not objective proof that all-encompassing high/low functioning labels reflect the intrinsic reality of a person.
Functioning labels should be related to the GAF (global assessment of functioning) given to a person when they are assessed by a psychiatrist. This is a 1 to 100 scale which gives a number to a person’s current level of functioning, mostly related to the level of symptoms, how well they are coping with daily life, and whether or not communication and reality testing are impaired. Below 20, danger of physical harm is also involved.
The advantages of using this scale:
–It measures functioning level at one point in time. I have been assessed as functioning at different points along the scale, from 20 to 90. That would make me high-functioning sometimes, low-functioning other times–as is true of most autistics.
–It’s concrete in its definition of “functioning”, using a scale that depends on how well you are coping with daily life.
The one thing I don’t like about it is that if you are nonverbal, you are automatically placed at 20 or lower… autistic people are a special case in that respect because we usually have coping strategies in place for when we aren’t able to communicate.
Aha. The GAF, here:
http://www.avapl.org/gaf/GAFSheet.html
I would like to suggest an alterntive way to think about it, which worked for me, passing/nonpassing autistic works well, because it put the ball back in the NT court, this isn’t about me, it’s about whether a bunch of NT’s work out whether or not someone is non-NT when they meet them, and how that changed the way they interact with them.
Well, the GAF can be somewhat problematic as well – perhaps particularly when an autistic person is superficially verbal but not so well equipped to describe his or her life, etc.
I got a score of something like 75 on the GAF the one time I was given it, even though I had no concept at the time of how to avoid dehydration or malnutrition, and even though I couldn’t readily identify physical illness, pinpoint pain, or assess my fatigue levels.
I basically was in a stage where I said “fine!” to every question, but it didn’t mean that I WAS actually fine. Joel has written in the past about “underreporting”, and that used to be a *huge* issue for me. It’s a lot better now but I still have trouble with it sometimes.
Indeed. Evaluating a person is hard to do when there are communication problems. Chances are that, had you evaluated yourself, you would have come up with a different number.
When evaluating someone, it is important to try to see things from their perspective and to communicate as well as possible, because many types of barriers–culture, religion, age, language, etc.–can otherwise cloud the evaluation rather badly. Autism (and other communication problems) is one of these barriers.
The GAF is probably more accurate when someone first learns about how to score it, and then applies it to himself… however, the criteria must be objective rather than subjective, or one’s self-esteem and optimistic or pessimistic tendencies will skew the number one way or the other.
I have a six year old autistic boy. Non-verbal (almost no communication of any type), with sleeping issues and food issues, but no big ref flags as far as being out in public, and (so far) no self-injurious behaviors. Very very happy, too.
In the beginning, I was so envious of the parents whose children could communicate. At various meetings with other autism parents, at schools or what not, other parents with communicative kids would talk, and all I could think was, “at least your kid can TALK to you”. It was a bitter thought, one I’m not all that proud of. I recall thinking that despite not having a lot of stereotypic behaviors, our boy was somehow worse-off than theirs. There was almost certainly a lot of self-pity in there.
Now my husband works at a school for disabled children, as a teacher’s aide in a pre-k room with children with developmental disabilities. Not being a teacher or a therapist, he does not have access to their IEPs and therefore does now know their specific diagnoses, but he comes home daily with stories of his day, of this child who is incredibly communicative, but who is so incredibly sensitive to sounds and touches that he is nearly always crying, or this other child who does not speak at all, but who is creating very detailed pictures with his markers or crayons, or another child who wants so desperately to be liked by all the other kids, but whose rigid insistence on always doing things exactly his own way constantly causes fights with classmates… the list goes on. It’s taught me that all of these children have strengths and weaknesses, and none of them can be fairly called “high” or “low” functioning. It’s just like with the rest of us NTs. We are what we are, multi-facated and complex.
Honestly, the whole HFA/FLA thing always makes me thing of a thing that someone I know once said to me:
“There are only two kinds of people in the world, the people who think that there are only two kinds of people in the world, and everybody else.”
The point is that there aren’t only two types of autistics. There are at least as many types of autistics as there are autistics in the world.
I am an aspie who has always been considered weird. Highly talented in math, physics, writing, computers, but socially inept, and extremely shy.
After a lifetime of pain and fun, I find that my talents have more than compensated for not being “normal”, and wouldn’t trade for anything.
Hello,
Very thought provoking post. The reason I call myself Aspergers is because thats what my medical diagnosis is. I’m very well aware that Aspergers is under the umbrella of Autism Spectrum Disorder and I don’t do it to make people feel bad.
Congratulations on falling in love. I hope your relationship grows.
The GAF is problematic because it takes all functioning at once and lumps it all together. (My scores on the GAF have ranged from 10-60 when it’s been applied to my life, which it hasn’t in awhile. Even the year I attended college early it was assessed at 60. My General Adaptive Composite from the Adaptive Behavior Assessment System was 47, although individual scores on various sections would translate to both higher and lower than that. The ABAS only goes down to 40, and goes up to 130, with 100 being average, much like an IQ test.)
I’m at some point going to post my own answer to the whole concept of “functioning level” on my blog, but it’s taking me awhile to prepare it.
I am almost always introduced by the people in special services as “very high-functioning, but has a hard time socializing” or some variant of this. Which is quite ironic, considering that socializing with friends comes quite easily to me, but I have a very hard time initiating speech to indicate a need or want, and there’s usually at least one time a day I can’t speak at all, or only in short phrases. I have told them numerously of these and myriad other difficulties, but over the last 8 years since diagnosis it’s hardly changed. Maybe it’s because I study math and say I want to study quantum physics.
It actually makes for a very intriguing interaction, when someone says something like, “You wouldn’t be happy to be autistic if you did X or Y or Z like those low-functioners” – and most often, I do or have done some or all of these things. Maybe it’s just too difficult to reconcile the image of someone who does college math in high school but headbangs and whose speech is intermittent with the preconceived duality of “the HFA awkward geek” and the “lost in their shell LFA” stereotypes. But I don’t believe people are stuck there. People can learn to think differently about us. Indeed, I have seen it happen often.
To add a sarcastic remark, if I may:
Everybody KNOWS autistics can’t do physics!
[...] work with people who are “lower functioning” than I am (apparently with no awareness of how problematic that label is), as if that makes them more qualified to speak and [...]
I’ll be the first to admit that I couldn’t begin to apply a functioning label to myself, even if such things were clearly defined. So many things determine how I’m doing day to day, even second to second. I can go from speaking in a way that makes people question my diagnosis to being completely non-verbal, it only takes a small stimulus.
It annoys me so much when a professional remarks on how high-functioning I am (in his or her quiet office on a largely low-anxiety day for me no less) that I often stop seeing said professional. Apparently I’m high-functioning to some because I speak. Others because I hold a job. Yet others because I have friends and even a SO.