chaoticidealism ([info]chaoticidealism) wrote,
@ 2009-05-31 19:40:00
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Entry tags:autism spectrum, identity, psychology

Let's clear this up...
When I say I am "Autistic":

I use "autistic" as a general term for the entire autism spectrum. I think Asperger's and other types of autism are too similar, with too much overlap between them and no clear dividing line, with too many cases on the borderline between them, to be truly separate entities. Certainly you can pick examples of other types of autism that are very far away from certain other examples of Asperger's, but you can also pick examples where they are entirely indistinguishable. I am more in favor of a broad range of expressions of Autism than separate entities with different names.
When I say I am "autistic", I am saying I am "on the autism spectrum", not that my official diagnosis has suddenly switched from Asperger's Disorder to Autistic Disorder (it hasn't, and there's been no reason to re-classify, since one is as good as the other and it gets me the services I need).

The way the ASDs are diagnosed, the names have become pretty close to meaningless. There's the whole annoying problem of the diagnostic criteria overlapping to the point that most Asperger's cases, including mine, can also be diagnosed as Autistic Disorder. Diagnosis is often based entirely on what the doctor thinks will get the child the proper services, or the doctor's impression of functioning level (which doesn't actually even have an official definition), or even an attempt not to say "autism" and diagnose PDD-NOS in a person who clearly fits into the Autistic Disorder category.

The only diagnostic sure thing I know of is that someone who is labeled Asperger's generally has some use of spoken language, though whether it's reliable or whether it was delayed is anyone's guess. They don't diagnose by-the-book, so the labels don't mean too much; and if they did diagnose by the book, the labels still wouldn't mean very much because the Autistic Disorder category would pick up so many more cases from the PDD-NOS and Asperger's groups.

In any one ASD category, you'll have wildly different people with the same label. Pick one person diagnosed Asperger's, and you might have a shy bookworm with a PhD; pick another one, and you might come up with a wildly eccentric extrovert who repeatedly embarrasses himself and doesn't care; pick a third, and you might have an overly polite housewife who doesn't get out much and spends a lot of time on the Internet. For that matter, you could pick the same three people out of the "Autistic Disorder" or "PDD-NOS" boxes.

If you can't predict what someone will be like based on the particular ASD they have, and if you can't predict what particular ASD they will be diagnosed with based on what they are like, then aren't the specific categories a bit meaningless to begin with?

So I have decided to forgo identifying as any precise diagnosis and simply gone for calling myself "autistic". This is the general term for anyone with a PDD--Autistic Disorder, Asperger's, Rett's, CDD, and PDD-NOS--and I much prefer it to compartmentalizing the spectrum artificially, especially since I have grown very annoyed with the tendency to say one group is either "better off" or "more truly autistic" than another. There's too much divide-and-conquer going on as it is; until there are better official criteria, I'm going to forget about specific labels altogether.

We're just going to have to deal with the fact that we are too diverse for any one way of experiencing autism to be anything near universal; and we're better off wasting no time making it clear that human rights apply no matter what sort of weird brain you have. Who says you can't demand universal human rights for people who don't experience autism the same way you do?

No, you don't know "what it's like" to be someone else. No, you can't speak for them any more than you could speak for your identically autistic twin. (Those who think we share an "autistic hive mind" are sadly mistaken and should see us argue some time!) Of course you can't; you can't move into someone else's brain and know what they are thinking! Besides, a lot of what this neurodiversity thing is all about is that everybody gets to speak for himself. That, and actually being represented by people who are autistic, not NT psychologists, which is about as silly as having somebody who's lived all his life in Canada represent the interests of people in Madagascar.

Bottom line: Despite all the diversity, there's no reason we shouldn't work together. After all, the only thing you really need to demand human rights for someone else is to be as human as they are. Last I heard, we all had that in common.




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[info]fleecyblog.blogspot.com
2009-06-01 12:24 am UTC (link)
I agree - for similar reasons I refer to everyone as plain "autistic." I see the abbreviation "autie" being used this way too, which is interesting since some people are still using "auties and aspies" separate nickname lingo, and some people just say "autie" short for "autistic person"...

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[info]fleecyblog.blogspot.com
2009-06-01 12:25 am UTC (link)
Buhh... everyone ON THE SPECTRUM, rather. Not "Everyone" everyone.

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(Anonymous)
2009-06-03 08:52 pm UTC (link)
I do not think anyone is competent to diagnose, either clinicians or researchers unless they understand the inherent social construction of this phenomenon and there own social/economic and cultural position within this manufactory of autism.

Autism is only the extent to which a category of diversity and humanity does not fit within prevailing paradigms and norms.

I don't care what anyone wants to call it, because for all there ADOS and "gold standard" diagnostic schedules they have effectively invented something to keep themselves in a job and a position of perpetual uncertainly and questioning.

The last thing the professionals actually want is an answer because there are effectively on a boojum hunt.

Larry

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stephanielynnkeil.blogspot.com
(Anonymous)
2009-06-01 01:08 am UTC (link)
I'm going to just start saying "ASD." I mostly do this already and I think this helps this problem more. "I have an ASD." Or how about, "I'm an ASD." There. We have a new term...

I do have a problem with people who are diagnosed with Asperger's saying, "Well, I COULD be diagnosed with Autistic Disorder according to the criteria, but I'm not. I COULD be though."

According to the DSM, Autistic Disorder "trumps" Asperger's. If you meet the criteria for Autistic Disorder than you can't be diagnosed with Asperger's; it says it in the DSM.

So, if a doctor actually follows the DSM and you are diagnosed with Asperger's that means you don't meet the criteria for Autistic Disorder.

But, to solve this, let's just use ASD.

So, people with Asperger's have a "mild ASD" and people like my couisn, who is profoundly LFA, have a "profound ASD."

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Re: stephanielynnkeil.blogspot.com
[info]fleecyblog.blogspot.com
2009-06-01 02:15 am UTC (link)
Interestingly, I hear they're doing quite a bit of reorganizing the whole autism/PDD section in the DSM-V. I'm curious how it's going to work when they're finished. I hope it works better than their current system. Systems always could stand improving (if it can be found), especially something like this.

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Re: stephanielynnkeil.blogspot.com
[info]chaoticidealism
2009-06-01 02:40 am UTC (link)
"According to the DSM, Autistic Disorder "trumps" Asperger's. If you meet the criteria for Autistic Disorder than you can't be diagnosed with Asperger's; it says it in the DSM."

Yes, exactly; only doctors don't use the literal ASD criteria, and didn't when they diagnosed me. That's probably because they're as annoyed with the written criteria as I am. Most professionals seem to be going with the criterion that if you use spoken language and have an 80+ IQ, you're diagnosed with Asperger's--even though, technically, most of those cases would be Autistic Disorder.

That's why I'm saying that, if they did diagnose by-the-book, the Asperger's category would be very small--it's because most Asperger's cases would have to be re-categorized as Autistic Disorder.

The problem with trying to fit autism into categories is that there's so much overlap. The guy with the childhood speech delay may now be completely independent; the kid who spoke on time may still be so naive that he's living with parents at thirty. Asperger's plus mental retardation is automatically Autistic Disorder even though you may have spoken at the same time as NT kids with similar IQs. There are even people in the narrow category diagnosable as only Asperger's who are severely disabled and require 24 hour care (usually due to meltdowns) despite having normal speech development.

The problem of most Aspies fitting the Autistic Disorder criteria too is symptomatic of a messy DSM write-up; but it also illustrates the underlying fact that the Spectrum is just too diverse to put into clear-cut categories.

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Re: stephanielynnkeil.blogspot.com
(Anonymous)
2009-06-01 06:55 pm UTC (link)
So, I guess this is the doctor's fault then. I don't have this problem, I have an IQ over 80 and use spoken language (definitely not very well) but I have a diagnosis of Autism, not Asperger's; I also had a much more severe form as a child.

I really think doctors need to go by the book; it's THERE for a reason.

I guess they must not follow this, then:

"Asperger's Disorder is not diagnosed if criteria are met for another Pervasive Developmental Disorder or for Schizophrenia."

I definitely think that a person with severe autism as a youth can grow up to be much more successful than someone with Asperger's, which is why I, personally, think they are different types of ASDs. I've noticed many differences between myself (and other people diagnosed with autism) and people diagnosed with Asperger's. There seem to be different cognitive "things" going on in the brains of people with AS vs. HFA. I know most people think the only difference is a speech delay but, from my experience, I REALLY disagree with that.

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Re: stephanielynnkeil.blogspot.com
[info]chaoticidealism
2009-06-02 10:35 pm UTC (link)
They often do diagnose by childhood history rather than by current symptoms. The criterion that mentions "delays or abnormal functioning in..." can be fulfilled if you had a speech delay, even if you haven't got one now.

I do think that people who had speech delays can be different from people who didn't, even if they now match identical diagnostic criteria. In general, it seems to be a matter of cognitive style; the non-delayed group often tends to be better with verbal information than with visual-spatial, and the delayed group tends to be better with visual-spatial information. It shows up on IQ tests as a sub-score gap, one way or the other, with verbal or visual being higher.

Functionally identical and diagnostically identical does not necessarily mean that they think the same way.

I don't know whether I'd agree that they are two different kinds of autism; people with and without sensory integration problems are fundamentally different, too, as are people with and without severe difficulty reading non-verbal communication, or people with and without the desire to socialize. I think autism is just simply very diverse, and they are making a big mistake when they assume two people with the same diagnosis must be the same.

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Re: stephanielynnkeil.blogspot.com
(Anonymous)
2009-06-03 04:53 am UTC (link)
By what book?
The one *you* made up?
Because on your blog you not only repeatedly claim that people with AS aren't autistic (wrong by "the book") and you also question the diagnosis of autistics with an autism dx, even if they made their dx papers available to the public.

In the name of avoiding hypocrisy I want to suggest the following:
Everyone who posts vicious rumours on their blog questioning the diagnosis of other autistics should maybe post their own dx to prove *they* have a right to represent autism.

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Re: stephanielynnkeil.blogspot.com
[info]gonzogalore.blogspot.com
2009-06-03 04:57 am UTC (link)
^^^Apologies for the anonymous comment. That was me in response to Stephanie.
(I forgot to paste in my URL.)
Gonzo

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Re: stephanielynnkeil.blogspot.com
[info]chaoticidealism
2009-06-03 05:39 pm UTC (link)
The "book" in question is the DSM. It does say "autistic disorder" trumps "asperger's disorder". However, the criteria for autistic disorder include ever having had a speech delay. That's the confusing thing. In adulthood, it is possible for someone with an autistic disorder diagnosis and someone with an asperger's disorder diagnosis to have identical check-marks in the DSM boxes--all except for childhood history of speech or developmental delays.

I don't know whether the people with autism who are diagnostically identical to people with Asperger's in adulthood tend to be more successful. I've been digging through the research a lot, and that's an awfully long-term study that I haven't seen yet. If so, it may simply be that if you choose someone who has learned an awful lot since childhood (the classic autistic) compared to someone whose development has been more typical (the Aspie), you could simply be comparing someone with a large capacity for learning with someone whose abilities are more average. The closest thing I could come up with is a study revealing that among classic autistic and PDDNOS two year olds, 88% were talking by age nine and thirty-some percent were holding back-and-forth conversations. It only had an experimental group in the twenties and was blinded only to the extent that it's usually hard for a doctor to recognize a child at nine that he last saw at two.

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[info]autistscorner.blogspot.com
2009-06-01 02:54 am UTC (link)
Yep. I use "autistic" generically too, for the same reasons.

(Also, with the diagnostic-category overlap, you also have to factor in at what point in time the person is diagnosed. I was evaluated before the DSM-IV came out, and thus was tagged with PDD-NOS rather than Asperger's, which didn't exist yet).

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[info]gonzogalore.blogspot.com
2009-06-03 04:23 am UTC (link)
This is so excellent, I'm gonna link to it next time I get some of that Aspie/Autie nonsense. That's been annoying me for quite a while now.

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(Anonymous)
2009-06-03 09:49 am UTC (link)

I am ok to refer to myself as Aspergers (and yes, I do have a formal diangosis). I am verbal, I have perfectly fine understanding. What I do have is very significant difficulties in being able to initiate things, which include talking, to be aware of what others are doing around me and what they are thinking and doing in relation to me (this is very hard for me to explain, but I'll give it a go in a minute) and to express myself. This doesn't just mean I get a little awkward or shy in social gatherings, it means that I can't ask for drinks or food or painkillers. I can't say when something is bothering me. Now, probably one reason why I would not be considered severe in terms of communication is that if someone approaches me to talk, then I can usually talk back to them. But if they don't I will remain doing my own thing. After 15 years with my husband I still find it very difficult to initiate talking with him. I've said before on other sites that it is also as though the words are locked in my head, it is annoying when I'm waiting at a reception desk, for example, and I just need to say "excuse me" and I can't. I find it much easier to initiate talking online.
The not being aware of what other people are doing or thinking in relation to me, I'll try to give a few examples:
1: When I was 19 I had a temporary job grading potatoes and one day we finished early. All the others, it turned out, headed back to the main farm buildings to get a lift back to town. I walked five miles down narrow country lanes, on my own, not telling anyone where I was going as it didn't occur to me others would need to know where I was.
2: When I pick my younger son up from playgroup I do not look at the other mums and think "oh I can't go up to them to talk, I won't know what to say", I don't think about them at all. I automatically look at something that interests me.
3: I know the theory of manipulation, I can not do it myself. I can not exaggerate on a CV. When my parents told me to go to bed at a set time I would never argue the point. I never did "pester power" or playing one parent off against another. As for telling people how I feel I have only been able to really start doing that properly when I got to my late twenties, via writing. Before that it was sporadic and never voluntarily.
I do have difficulties with interacting with other people, I can have friendships online but not maintain them in real life, with the exception of my husband. I can do work perfectly fine if I am working on my own, or in a small office, but working as part of a team or supervising people is something I'd struggle with, even though I have a degree.
I was never diagnosed as my mum didn't want me labelled and because I was verbal and seen as intelligent (my IQ is above average for verbal and quite a bit below average for non verbal, so it is uneven) and because I was very quiet and withdrawn I was overlooked. In hindsight I do know that there were some exceptions made for me that other children didn't get and I know the teachers and paediatricians picked up that I was different. I'm not saying that I would have been given a firm diangosis of classic autism as a child, because I don't think that would have been the case, but I think it's very possible I'd have been given some sort of PDD label.
Sorry for such a long post. It was very difficult to me to type this. If I've given the impression that my personal life is awful, it's not. I have difficulties, but I do not fuss about what others think of me, I find ways round my difficulties and I use what I can do (eg good long term and rote memory) to help myself.

Bullet.

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[info]chaoticidealism
2009-06-03 05:49 pm UTC (link)
(If you've heard this fifty times before, feel free to ignore.) With initiating conversations, have you tried a non-speech method, like maybe PECS? If you can't ask for something you really really need, that could be very annoying. It might be hard to use with strangers (you could get an "I have Autism" card to use for that, though), but with your husband, you could just tell him what you were up to and have some back-up for emergencies. This is assuming that physical actions are easier for you than speech production, so handing somebody a card would be easier than talking to them. Any kind of "I want to talk to you" signal should work, if he knows how to get a conversation going, right?

I've occasionally had that kind of problem, when very stressed. I remember once having to give an assisted transport bus driver my ID card because I couldn't figure out how to start talking to say my own name. That was under extreme stress, though, so I really don't know what it would be like to have that happen every day.

I had the "Mom doesn't want you labeled" thing, too. I got through OK, except when I got out of school and left for college, I didn't really know how to take care of myself. It took a while. I'm finally on my own now, kind of. I wish nobody would have to worry about kids getting labeled... the label shouldn't be shameful. Not knowing why you are different can make things very difficult.

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(Anonymous)
2009-06-03 11:07 pm UTC (link)
Well, if it's something that I have to talk about and I haven't been able to verbally do so I do either send an email, or write a letter. It's almost certaintly something psychological going on rather than physical as I find it a lot easier to initiate talking with children (though not when I was a child, obviously). As an adult a lot of the issues are ok, as, as I said, if someone talks to me first I do ok and I can get most things myself that I need, so I rarely need to ask for help. It was more problematic when I was growing up as I wasn't as independant.

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[info]autistscorner.blogspot.com
2009-06-04 10:43 pm UTC (link)
Wow, Bullet; you sound just like me!

Apart from all the stuff you mention, I don't think to volunteer information. I have to be asked directly, and usually in very specific terms, before I'll think to tell somebody something. And, especially if it's something I have trouble perceiving or understanding, like a feeling or a bodily sensation, I won't even be able to describe it if asked. Usually, I just assume that whatever I am feeling --- even something like pain, dizziness or severe nausea --- is perfectly normal and everybody gets it. (Or, alternately, I'll know something is *wrong*, but won't think to articulate it. Or be able to articulate it even if the notion to do so should occur to me).

I also cannot always talk back to someone, though. And sometimes my speech is quite halting and broken --- my verbal abilities are really uneven.

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