DSM-V Is taking away our identity.

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Well, you don't have to meet all of the current social criteria in the new criteria. They do take out the one about spontaneous seeking to share enjoyment in the new criteria.

Okay; I guess it's technically possible to fulfill DSM-IV Asperger's criteria, but not DSM-V autism criteria; but it seems so ridiculously unlikely to me that it should almost never happen.

Part One:
These are the current diagnostic criteria, of which two must be fulfilled:

And the revised version requires all three of these:


If you fit criteria A (old), then you probably also fit criteria a and b (new) because of the many nonverbal and verbal behaviors involved in "social reciprocity".

If you fit criteria B (old), then you probably also fit criteria b and c (new) because a failure to form relationships implies a lack of reciprocity (unless you were rejected by everyone else despite active efforts to connect).

If you fit criteria C (old), then you probably also fit criteria b (new). Not sharing your interests is a lack of social reciprocity.

If you fit criteria D (old), then you fit criteria b (new); these are very similar.

There are hardly any Aspies who don't have communication impairments; it's only this group--the group which uses language, both verbal communication and nonverbal communication, exactly like NTs use it--which seems to be excluded. And that seems to make sense to me: If there is no communication impairment at all, shouldn't you be looking for something other than autism, such as repetitive movement disorder, OCD, or social anxiety?

Part Two:
The old criteria; one of these:


The new criteria, two of these:


Here, the "preoccupation with parts of objects" has simply been deleted, and two criteria required instead of one. But I've yet to meet an autistic person who doesn't have two or more of stims, special interests, and rituals.

It may be theoretically possible to fit AS DSM-IV but not DSM-V, but it would seem to me that these cases are almost nonexistent, and those that do exist are highly likely to be either subclinical or some related disorder that isn't quite autism.

I am sorry for the length. I have little control over the length of my posts, and often find my fingers just going and going repeating stuff I've said elsewhere. And such is what happened in my post. I don't intend to make it difficult to read, it just is, and if it's any comfort, I can't read it easily either.

Not that I really like either. But I would rather see Asperger's separated from autism, than "AS/HFA" separated from "LFA". There is so much... wrongness, in how many autistic people view "LFA", and functioning labels in general. And this frantic distancing-from-"LFA" thing just doesn't sit well with me.

Partly because I've been labeled low functioning by professionals, and have had traits most people would see as high functioning, and therefore if you remove "AS/HFA" from "LFA" you are effectively cutting me in half -- "these bits we like, we'll call these high functioning, these bits we don't like, we'll call these low functioning". Eurrrrrgh.

Partly because functioning labels aren't accurate ways to view autism in general. Autistic people are simply not divided up that way if you actually look at what functioning labels mean. What they mean is this -- "We have looked at maybe three of your autistic traits out of dozens, and based on what those traits are, we will call you high or low functioning." They don't have anything to do with a person's overall skills, simply their (apparent) skills in a small number of areas.

What would you do with people who go back and forth between what people regard as high functioning and what people regard as low functioning? "Sorry, this moment/hour/day/week/month/year/decade you're Not Like Us ("LFA"), but next moment/hour/day/week/month/year/decade you are ("HFA/AS"), and these are two totally different categories that have nothing to do with each other, and let's emphasize that when you're "HFA/AS" you're a totally different person than when you're "LFA""?

Seriously, at least the autism/AS split just has to do with early development, and doesn't mean that a person can switch back and forth between the two "totally different things" all the time. (Although there are people diagnosed with AS who later in life become what you would probably call "LFA". The fact that an autism-related movement disorder causes this among those dxed as AS, HFA, and LFA alike... would make you think maybe they're part of the same thing.)



None of that seems to me to be "advocacy that AS isn't autism", but rather "advocacy by people with AS". Huge difference.

I'd also seriously question what "neurodiversity" means if it only applies to those with the smallest deviations from the norm, but stops at the larger deviations. In fact, those who are the furthest from the norm (those you call LFA) stand the most to benefit from an idea like "neurodiversity". I have been saying for years that "neurodiversity of the most privileged" is kind of useless -- moves the norm over a bit, makes sure that those who were just a little ways off from being considered valuable parts of human diversity, are now considered valuable parts of human diversity, leaves the rest of us who are much further off from being considered that, in the dust, considered broken, left with every tired old disability stereotype firmly in place. That's not my idea of a great thing to work for.

And I don't consider advocacy that is mostly taking the form "we are not THEM" to be legitimate.

As for the divisions between different forms of autism, one of the biggest arguments against the current divisions lies in my personal experiences. Apologies to all who have read this before in my other posts on the same topic. Basically, I have found throughout life that there are people, usually considered on the autistic spectrum, who have a lot in common with me. More so than just any autistic people do. We seem to be a genuine subtype of autistic people. We are mutually comprehensible to each other. Etc.

And we have diagnoses of AS, "just autism", HFA, LFA, PDD-NOS, and "autistic traits". Which diagnosis we have has absolutely nothing to do with how similar we are to each other. The person who has more similarities to me than anyone I have ever met and probably will ever meet, has, I think, official diagnoses of AS and PDD-NOS at various times, whereas I've officially been PDD-NOS, "just autism", and "low functioning" (not counting our various non-spectrum diagnoses and misdiagnoses -- and the "low functioning" has sometimes been at the same time as the PDD-NOS thing). So we all share labels with many people who have nothing in common with us practically, and fail to share labels with people we have the most in common with. Even if the vast majority of our skills line up with each other, people will look at a couple superficial traits and dump us in totally different categories.

(Part of this has to do with the difference between what is true of us, and what people perceive of us. Perception is highly determined by stereotypes and other such things.)

What are the skills and difficulties we have in common? Sensory-pattern-based thinking (which may not even feel like thinking at all) is a strength. Idea-abstract-logic-category-based thinking is not (though we might fake it or be able to do short bursts of it followed by crashing back down into our more comfortable skills). We have severe receptive language delays, which have an extreme effect on the way we have perceived the world since childhood. (Our expressive language varies, and often looks more advanced than it actually is, us having learned to fake it using patterns. But some of us have no expressive language and some have lots, even though among ourselves level of expressive language means nothing to who we are.) How much receptive language we learn in the end varies, but no matter how much we learn, we always start back at "no receptive language" as our default point. A "passivity" (as in, most of us would fall into the "passive" category rather than "aloof" or "active but odd" in Lorna Wing's somewhat flawed category system) that extends far beyond social situations, into movement, thought, action, memory -- basically we need something to react to that triggers us into moving or thinking or remembering or socializing, rather than being able to initiate easily ourselves. Lots of knowledge stored up that we can't consciously access, but that comes out when triggered situationally (hence, this post). Tendency to react to the sensory aspects of our environment more than the mental idea-categories in our environment, leading to both skills and difficulties particular to this. Mutually comprehensible body language. Tendency to appear to learn certain things, but not actually having done it, and we may appear to "regress" as that learning gets dumped (same thing happens if we're capable at "cognitive sprinting" -- doing really well in shorter amounts of time at a particular cognitive task that is hard for us, due mostly to brute force, but then losing it all when we're done). A certain kind of lack of connection to our bodies, feeling our bodies' input as the same as external input from our surroundings. Other stuff too.

Now, since that's just what a bunch of us have come up with, rather than researchers, there's no official category for it. We've just noticed the patterns (that being, what we do, after all) and slowly come to realize what traits we seem to identify with in each other. These are the traits that matter to us when we identify with each other. But the rest of the world only sees what our current outward appearance is, and shoves us into one or another category based on that. And that is how we are separated from each other yet kept in with others we have little in common with. For instance those of us diagnosed with AS have little in common with the stereotypical "aspie" who is really into logic and ideas. Those of us who cannot speak have little in common with those who have always understood language well but merely have trouble speaking it (who may themselves have more in common with the stereotypical "aspie" than they have with us, but be unable to express it and get labeled LFA as a result). Etc.

Which is why I can see even on a personal level that the categories are messed up. If they were legitimate, all of us with the same important sets of traits in common, would be in the same category.

i see things from a non-autistic parent perspective, so my views are from a different angle. as bad as it makes me sound, when my son was first being evaluated this past spring, i was concerned and hopeful that he would get an aspergers diagnosis over hfa. mainly thats because of the preconception so many people have that autism = cognitive impairment. my son is very bright and i didnt want people assuming he wasnt based on his diagnosis. he ended up with an aspergers diagnosis, but we actually think he was misdiagnosed and is actually classic autism. and in the months since his diagnosis, ive flip flopped my thinking on which i'd prefer.

aspergers is not well known. no matter how much work you think has been done, majority of people dont know what it is, but they do know the word autism. when i talk about his diagnosis, i dont bother to say AS anymore because that just leads me to have to explain that its a type of autism. its easier, and just as accurate, to say he has autism.

for school issues, aspergers isnt a benefit to a childs iep that ive found. in fact, for us its been a hinderance. weve had to fight harder to get him services because he is dx AS instead of classic autism. school personnel are just as ignorant when it comes to aspergers as is the general population. they seem to have an idea that hes either a) too young to have aspergers therefore he is not asd at all or b) he doesnt need services since he is academically not behind and its only aspergers and not classic autism.

aspergers IS autism. you cant disassociate it. thats like trying to say pit bulls arent dogs.

its true there are a lot of negative stereotypes associated with the word autism. i dont think the solution is to try to segregate the high functioning from the low functioning. all that will do is further the stereotypes, for both. but by putting all the autism disorders under one umbrella, it will in essence dilute those stereotypes. and awareness is the best solution.

I suggest you focus on your son's exact issues--the specific traits--rather than saying "He needs this because of diagnosis X". The parents in my local AS/Autism group seem to have had a lot more luck when focusing on specific traits rather than diagnosis, whether their kid was diagnosed autism, Asperger's, or PDD-NOS.

Say you're a special ed teacher, and you're told, "My child needs permission to wear earplugs in class because he's autistic." What's your reaction? Is it all that different if that sentence ends, "...because he has Asperger's"?

But what if it's phrased as, "My child needs permission to wear earplugs in class because his auditory processing is difficult and he is easily overloaded by extraneous sounds while trying to listen to the teacher"? Explaining the exact issue is a great deal easier than just slapping down a diagnosis and expecting it to explain itself!

Actually, it's really easy. The DSM-IV-TR requires "one or more" special interests abnormal in intensity or focus. I have more than one, and they can change. This does not fit the criteria. (Although it isn't the case with me, you can have as your only criterion from category 2 that you're preoccupied with objects or parts of objects, whatever that means, or that you stim.)

As for your last comment, well, duh. But just because you can function as you are doesn't mean you're not on the Spectrum. It's worth knowing what you are, even if that doesn't cause problems. I mean, I really liken it to NTs taking personality tests. There's no requirement in those that it cause an impairment in functioning, and there shouldn't be for us. Social model of disability, right? You can't claim that it's okay to be autistic and then claim that you can't be autistic if you function. If this world were set up for me I wouldn't fit that criterion, and nor would you or anyone else.

Sensory overload isn't a behavior. That's exactly the kind of thinking we don't want. I don't "behave" in some strange manner; I feel something. (Actually, a great many somethings. Without cease. That's rather the problem.)

Besides, my stims don't count because they aren't stereotyped. Sometimes I pace in my room, and sometimes I pace in the office, and sometimes I pace in the backyard, and sometimes I pace the downstairs, and sometimes I pace half the basement, and sometimes I pace the whole basement... sometimes my touching-my-face stim goes right thum left index left thumb, sometimes it involves the right cheek or the left or both or neither, sometimes it goes right thumb left thum and there's some stuff with just the hands in between... it's not a stereotypy unless you do it the same way every time. And I wouldn't know what an unusual sensory behavior is, because NTs stim too (or at least my mother says so, although convincing me I'm normal seems to be her goal in life, when it isn't making me normal), and they definitely have stereotyped verbal behaviors ("hello, how are you?" "I'm fine, how are you?" "I'm fine"... though I did turn that up to eleven by making my response to "how are you?" "fine, you?" no matter what, so that I sometimes had conversations that went "how are you?" "I'm fine, how are you?" "fine, you?" until I learned not to do that).

Anyway, I guess what I'm saying is, it's a matter of semantics... but this is certainly the right crowd to find someone to argue semantics with. After all, the meaning of the word "is" is SRS BSNS. And I have my own ideas about what would be good diagnostic criteria...

Plus, I hate these conversations. They always serve to make me second-guess myself and feel like I don't really belong here.

I'm not sure how organized this post will be... I'm going to try, though. I just ask that you please don't pick me apart because it's taking all my energy to attempt to write this out.

I think (part of) the reason we have functioning labels is the same reason we have labels period. Sure, it would be less burdened (er, struggling for words here, but stay with me) to say "my child has symptoms x, y, and z" but the collection of those symptoms = autism, or Asperger's, or whatever other diagnosis you want to pick. When we say "autism," it calls up a general picture in the person's head (right or wrong). When we say "HFA" or "LFA," it also calls up a general picture in a person's head, right? I'm not saying that it's an accurate picture at all, but I think the functioning labels are an attempt to simplify. A failed attempt.

I think that it's inaccurate to say that someone has HFA or LFA, but I do think that you can say one person is higher or lower functioning than another person IN A CERTAIN AREA (ew, sorry about the caps, but the italics on here confuse me). But there are also other ways to express this, and they are perhaps better. For example, one might say that while my verbal communication is lower functioning than that of a typical person with Asperger's, one could also say that my communication is worse or more limited, and that choice of words is preferable, though both are accurate.

I also think that there are people that functioning labels work better for than others. Someone (a hypothetical person) who just crosses the border of "significantly impaired" in all areas could accurately be described as a person with HFA. Meanwhile, a person who is so limited that he or she forever requires constant supervision in absolutely every area of adaptive functioning may be said to have LFA. But the reality is that many of us have traits that are all over the place, and in general, these labels don't WORK (again with the caps!).

I also don't think IQ is an accurate way to designate HFA and LFA for several reasons. The first is that people on the spectrum are notoriously hard to accurately test. Personally, I've tested within a 50-point range throughout my life. Secondly, IQ and adaptive functioning are TOTALLY different. While I have a high IQ (regardless of which of the tests were correct), my adaptive functioning is in the mild-moderate mental retardation range, for the most part. Essentially, while I know the definitions of many words and can solve puzzles easily, I function like a person with MR. So, HFA or LFA? It doesn't work.

So for those of you who use HFA and LFA to describe people on the spectrum, please (seriously) explain to me which traits signifiy "HFA" and which signify "LFA". I mean, where do you put head banging? Self injury? Echolalia? AAC? Talking on the phone? Going to college? Driving? Living on your own? Needing intensive supports (24/7) to do it?

And, given that I currently do all of those things, what would you call me?

It's kind of sad that you seemingly base your entire personal identity on a single medical diagnosis.

Misread. Ignore me. I need to go to bed and stop posting.

Last edited by SuperTrouper on 18 Jul 2010, 12:12 am, edited 1 time in total.

I find the subject heading over-dramatic. One's identity should not be based on having a disorder. I think the post itself has merit, though. The beginnings of a worthwhile discussion. But, if your identity is based on something about you being considered a disorder by the DSM folks, that's kinda sad.

...Sorry, my brain didn't work fast enough to post that when it was still relevant. The same will probably happen here. What good is typing 45 wpm if your brain can't keep up?

I agree with anbuend on the matter, and anyway, she said it better.

And why should you look for some other diagnosis because you can fake the language? Along the lines of what anbuend says, the issue with a false-positive on a Turing test is the issue of throwing someone who doesn't speak or read Chinese into a room where he's forced to communicate only through written Chinese, seeing the results of his actions only in written Chinese. He gets very good at faking it, so good in fact that he convinces the people outside the box that he's a native speaker. And he doesn't understand a single character.

I socialize well enough to the extent that I want to. I do it my way, stimming constantly, looking at whatever's most attractive (when relaxed) or most dangerous (when not relaxed). My friends are the sort of people who don't notice because they're all either outcasts themselves or very nice. (The very nice NTs don't seem to get as close to me as my fellow outsiders, though.) That's not doing it like an NT; that's slamming through the wall of "this matters" until they have to listen to you and until they come to like you in spite of it. It's being nice, being loyal, being willing and ready to make jokes and conversation, and to explain when they fall flat because they require familiarity with terms like 5150.

It's pretty sad if you make a neurological disorder your identity (no matter which type).

Yeah I agree if functioning labels must exist they should be "for this particular skill at this particular point in time". Although I think it would serve everyone better if we were just to say "does this thing well" or "does this thing not as well as..." etc. because then people wouldn't get caught up in the "high" and "low" of it and the status implications.

Even that gets tricky though because sometimes the difference is qualitative rather than quantitative. Who has a more severe movement disorder? A person with cerebral palsy who can do some movements but it's very difficult and clumsy and they can't move far? Or a person with the kind of movement disorder more common in autistic people, where the person can be incredibly deft on their feet and agile when the movement is not voluntarily undertaken, but who may not be able to move at all, not even the little bit of the person with CP, on purpose? The reason you can't rate the two of them on a scale is because the difference is qualitative, they have different kinds of movements and so you can't compare them that way.

Similarly, who has more social trouble, a person who cannot approach people socially but understands a lot of social stuff, or a person who can approach people socially but makes themselves universally loathed due to lack of understanding of social stuff? What about a person who can either approach people or understand social stuff, but not both? Or a person where their abilities fluctuate between understanding and not understanding, approaching and not approaching?

That's why I think a description is usually best, rather than a rating of low to high, even when it comes to specific stuff like that. (Although I'd prefer low/high on specific stuff than as a general term.)

Last edited by anbuend on 18 Jul 2010, 12:43 am, edited 1 time in total.

I think that part of the issue is that the word autistic carries a stigma that the term Asperger's Syndrome does not. It's not right, because no one should be stigmatized whatever their disability or severity of symptoms, but it's an unfortunate reality. Perhaps that could be avoided if the term used were "autistic spectrum" which emphasizes that it's a continuum that includes everyone on the spectrum, including those who fall short of a diagnosis.

There are those who have personality disorders like schizoid and schizotypal personality that are on the schizophrenic spectrum, but I don't think that people who have those disorders would want to be labeled schizophrenic, not only because there is a greater stigma attached, but also because it would be inaccurate. There are different symptoms associated with each, and people who have personality disorders don't typically have symptoms of psychosis.

I would feel almost presumptuous calling myself autistic, like I was borrowing a label that rightfully belongs to someone who is having more severe problems than I am. My bf works at a school for autistic adults. Most of his students are non-verbal or can only say a few words, some are not able to stop themselves from soiling their pants, and some are physically aggressive (he comes home with scratches and bruises every day). I can talk, write, go about my life without assistance. It seems unfair and presumptuous of me to say I am autistic like his students, who are struggling so much more than I am. I don't want to distance myself from them, I just think that having truthful and accurate names for medical conditions is useful and more honest.

It's pretty rare for someone with AS to go through life without assistance. Most don't work and live at home with their parents or in residential housing, and it stays the same way for most of their lives.

My friend, who is autistic, can speak and read and has better fashion sense than I do. She draws, though her style's not my cup of tea. By your reasoning, she shouldn't be called autistic either.

That sample is of autistic people who as adults avail themselves of services. That means they have to be pretty badly off to begin with (to need services as adults).