DSM-V Is taking away our identity.

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I'm in Scotland and my son was diagnosed with Asperger's as set out in WHO ICD-10. During the assessment and at its conclusion it was consistently referred to as a form of autism and/or an autism spectrum disorder. I don't think I've met anyone irl who wasn't aware of Asperger's and didn't know that it was a subset of autism. I also don't think I've met and spoken with anyone who doesn't know, or know of, at least one person with Asperger's or another form of autism.

So far, and I see no reason for this to change, everyone who has dealings with my son whether in a formal or informal setting - teachers, SLT, OT, Ed Psych, church - has looked past the label to the individual and his own particular strengths and difficulties and all aspects of his personality.

I think the proposed changes to DSM are positive and will oblige those who don't already look past the label to do so. It seems that many people do have problems now because the various subsets of autism, including Asperger's, encourage a kind of lazy thinking which assumes that all people within that subset will be the same - which they clearly are not.

To be honest, I'm offended that you wouldn't want to be associated with "people like me." I have a diagnosis of Asperger's from one doctor (though she says it could go either way, autistic disorder from another. Asperger's is technically an incorrect diagnosis for me, as I fit the criteria for autistic disorder. I'm not always/necessarily what you would call "high functioning," either.

I need a lot of support to get by from one day to the next, but you know what? I do a lot better socially than a lot of "Aspies" (I put it in quotes because they refer to themselves as such; I personally hate the word) I know. I have good manners and I'm very kind to people, or at least I always try to be, which is a lot more than most people in my HFA/AS group can say for themselves. I work part time, I drive, and I graduated from college. I have friends, both on the spectrum and not. Even though my diagnosis sometimes precedes me, because my mom tells people, it's never kept me out of any job, rigorous university, or relationship I've ever wanted.

Please tell me, chadmaster, what it is about me that you do not want to associate with. Is it the constant echolalia? The AAC? The self-injurious tendencies? The melt downs? I'd like to know.

That's great, but not everyone with classic autism is low-functioning. A minority of autistics are low-functioning, even. If you seriously feel that separated from those more "severe" than you, or can't relate to them at all, I would reevaluate your view of yourself as on the spectrum. If two people have a cold, should you call it something different because someone's cold is more severe than yours? (not likening autism to a cold, but just using it to compare label-wise).

I also don't think this is the purpose of Wrongplanet. We use the term Asperger's because that is what most of us are being diagnosed with. It's awareness that high-functioning autism DOES exist, but the barrier between the two terms classic autism and asperger's is imaginary. I would also show that the tagline says first, "The online resource and community for AUTISM..." (which I must point out isn't due to any alphabetising).

I don't see how the amount of time it took to begin speaking makes a difference. No one can tell the difference between HFA and aspergers without knowing about the individuals first few years of life.

"Together we stand, divided we fall" comes to mind.

I only knew of autistic people growing up. It wasn't understood why I identified with them, even though I was constantly reminded by others of being an "outsider". It's just something I felt deep down inside, but it couldn't be validated. Through AS I learned of the spectrum, so in that sense it's helped. But I feel no shame in seeing myself as being on the autistic spectrum, no "subset" required. And indeed, "Asperger's" is such a silly sounding label.

I definitely do feel that the DSM-V is a threat to me. Not because I could be lumped in with other autistics. That's not a bad thing, once we change the stereotypes (which becomes easier once everyone who's actually succeeded in life stops being Aspie by default regardless of whether they fit the diagnostic criteria). Although I fit the DSM-IV-TR criteria for Asperger's Syndrome, and come very close to fitting the DSM-IV-TR criteria for Autistic Disorder (but I don't quite fit, otherwise that should be my diagnosis rather than Asperger's). However, I don't fit the DSM-V criteria.

I don't want to be excluded from the Spectrum. I don't feel that I have the right to speak for (or even as a full member of, in some cases that really shouldn't be cases) any other group. Women? No, they like shopping, and they emote to each other, I can't speak for them despite my anatomy. Humans? No, they're herd animals, that's a pretty big difference right there. Teenagers... well, they do drugs and act without thinking. (Me, I think, come to the conclusion that whatever action I'm about to take is a stupid idea, and do it anyway. ) But I am definitely, certainly, an Aspie, and I can claim a sort of kinship with other Aspies. (I always feel awkward claiming the same kinship with Auties. I have no prejudice, but I hear the curebies telling me I'm different, they're nothing like me, I can't know what they're thinking. I want to make them shut up, but that doesn't mean they will.) It's like I can say... yeah. These people are like me. Maybe if I point out that I'm unlike other humans, that's irrelevant, because real humans don't feel like I do... but what I say about the Spectrum matters. It has as much weight as what any other Aspie or Autie says.

But what right do I have to talk about a diagnosis I won't even have soon? Soon enough, I'll be NT.

Except I won't be NT. I'll be an NT who paces constantly, touching everything in my path. I'll be an NT who has meltdowns and can't socialize. I'll be an NT who doesn't qualify for services, has no excuse or reason for being odd, and is... well, broken. It's like I've been a cat all my life, but now, because I wag my tail, I'm being told I've been a dog all along, and instead of being a cat, I'm a very strange dog, a dog who can't do what dogs ought to.

But I wouldn't mind being "lumped in" with people who are like me in all except superficial respects. (Now, certain Auties aren't. For instance, the style of thought that Amanda Baggs has is completely the opposite of mine. There are probably Auties who think like I do and Aspies who don't. And that's a valid way to break down the spectrum, but then what about NTs who think like that?)

Besides, it'll help all of us in the end if the "super high-functioning Aspie" becomes the face of autism. It may be no more accurate, but...

Why not a whole nother word, though? Given what the word "autism" means, it might be prudent not to keep the name. Maybe some other word could describe us better.

I'm curious as to what criterion you don't fit in the DSM-V?

Yes, you do.

If you can be diagnosed with either Asperger's or Autism today, you can be diagnosed with DSM-V autism.

Proposed DSM-V Revision
For example: Stuttering, stammering, speaking in a monotone, odd pitch, odd rhythm; lecturing, occasional mutism, very formal speech, functional echolalia, scripting; odd or absent body language; odd or absent eye contact.

Forgetting to contact friends; staying alone most of the time by choice; being unable to have a back-and-forth conversation; not bonding easily with people other than family; not sharing your interests with others; talking "at" someone rather than to them (lecturing/monologues); being unaware of trends; not picking up on others' emotions; not picking up on the emotions of a crowd or the emotions of people in a story.

Having friends much older or much younger; having no friends; having friends only if the other person makes all the moves; being much older than most people when the first friendships begin to form; having very unstable relationships that fall apart easily and never get past the acquaintance level.

Stimming, sensory overload, self-injury, tics, deliberately avoiding certain sensations, having sensory integration disorder. Pacing; rocking; hand-flapping; spinning, etc.

Needing schedules and lists to organize yourself; having routines that help you do things like dress yourself or clean your room; using routines to control your environment; doing things the same way every time; eating the same lunch every day; wearing the same style of clothing whatever the circumstances; being thrown off when schedules change; having meltdowns and transition anxiety; being overloaded by unexpected events; using routines to reduce anxiety; using routines because they are comforting and familiar.

Special interests. Memorizing statistics; intense concentration on a single book, TV show, or game to the point where you know all the minutiae of that world. Fascination with topics in science, history, mathematics, or literature. Spending all your time doing the same thing. Fascination with a certain experience or sensation, such as the sound of car engines or the feel of roller coasters. Spending all your time practicing a skill, such as repairing television sets or playing the harmonica. May change often, or may last for years.

AS starts in early childhood.

That matches Asperger's easily. Unless you are somehow an Aspie who speaks exactly like an NT, made friends just as easily as NTs do, and has absolutely no trouble with conversations, parties, or small talk, you match the first criterion. And the criteria in the second section are so closely related that unless you are an Aspie without stims or special interests, you'd match those.

I think they're trying to avoid diagnosing kids who are doing just fine despite being eccentric, who can make friends and have conversations and do all the things that NTs do; and that's a good thing. Why put them in therapy if they don't need it?

Last edited by Callista on 17 Jul 2010, 10:01 pm, edited 1 time in total.

My concern is how do you explain to other people what makes you the way you are if you can no longer use the term Asperger's Syndrome.

People outside the autism community have a very limited understanding of the autism spectrum to begin with. If you tell someone you have Asperger's Syndrome and they have at least vaguely heard of it, it's an explanation that makes sense to them and they might be able to understand what makes you who you are to a certain degree.

But if you tell them you are autistic, they just won't know what you mean, since most people have heard of autism as it relates to people who are most severely affected, and their response is likely to be, "No you're not."

And my AS is mild enough that I don't fit the criteria for the proposed DSM V description but do fit the one in the DSM IV reasonably well. Yet my functioning is affected quite significantly, but I will not longer qualify for a diagnosis.

I also have Chronic Fatigue Syndrome, and because of the name it very often doesn't get taken seriously, and this is a huge issue in the CFS community, Having a name that explains one's condition is very important.

So what stops you from explaining "Actually, autism is a much broader category than the stereotype"? After all, you'd normally have to explain Asperger's to them; so why is this any harder?

I've called myself "autistic" for years. I got a diagnosis of Asperger's initially, though a few doctors have admitted that due to the craziness of the autism diagnostic categories, I really should be labeled PDD-NOS, along with the majority of the Spectrum. I originally thought that "Asperger's" would be easier to explain, but it's really not. Saying "autistic" and then explaining that the media blows autism all out of proportion to what it actually is, is much easier. People already know what autism is; they just have to have it explained to them that "autism" covers a very wide range of phenotypes.

You could say, "I have a mild autism spectrum disorder. It used to be called Asperger's, if you know what that is, but they changed the name on us and just call it all autism now." There; easily fixed.

I have "LFA" friends and am not ashamed to share a label with them. I have described myself as "on the autism spectrum" for years. Changing a word does not change me.

I agree.
This has been talked about so much here and to be honest, it seems that too many people on here base their identity on Aspergers and not much else.

I agree with anbuend.

There are some people with HFA, who have what is now an "Autistic Disorder" diagnosis, who are just as functional as some with AS.. So i don't see how it's more of a stigma to stick Aspies with the "autism" label that those with HFA, who already are. And we are all autistic, other people's ignorance shouldn't be why we keep a certain classification that isn't needed. And you can still use the word 'Asperger's' to help give a description of your symptoms to people. People still say "ADD/Attention Deficit Disorder" and that hasn't existed as a diagnosis since 1994.

Not true.

The new criteria require every "social" criterion to be met, where the old criteria only require some of them. So, anyone who was diagnosed but only had some of the social criteria, doesn't meet the new criteria.

The new criteria eliminate the "communication" criteria that were in the autism diagnosis. So, if an autistic person was diagnosed primarily on the strength of meeting the "communication" criteria (with as little as possible of the other criteria), there's a chance they won't meet the new criteria either.

There's a lot to dislike about the DSM-V criteria. A lot. The only thing I really like about them at all, is that they finally make everything into autism. But they make many people diagnosed with AS and autism undiagnosable by the new criteria (which won't affect those of us who were already diagnosed, but will affect those who haven't yet been diagnosed who could have been by the old criteria but not the new). And of course most people diagnosed with PDD-NOS are out of luck in the new criteria too.

One thing to be aware of though -- if you're already diagnosed, the new criteria won't affect you unless you are re-evaluated by someone using the new criteria. (And often people don't use the DSM criteria to diagnose, but rather either ICD criteria, a number of criteria set up by specific professionals, the ADOS, and/or the ADI-R.)

But if anyone wants to get any services, won't they have to be rediagnosed? I doubt any government assistance will go into effect with an oudated diagnosis, right? I could be wrong. Just wondering.