Death of the Syndrome

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But he seemed to have problems with self help skills (although I not remembered well of the details of the movie)

Since he seemed to get by in the hostel with routines, he probably could have outside of such given time (he was left alone -- it was pretty much like living with your parents, which is a common occurrence for adults with AS now. They used to be in institutions, and that's what we called HFA individuals in the past. They don't now unless it's necessary). People have to remember that he was effectively abducted from his life and taken on a ride across the country.

I doubt most with AS that need routines (not all do) to function would be any better if plucked from their homes.

Whilst his outward appearance is pointed out due to it needing to be for the audience (say like Monk and OCD in the show Monk), but the core disorder is there.

He can be seen as HFA though (Autistic Disorder, but then, you can put a lot of people who have AS with that too), and Lorna Wing put him as that. She put Mr. Bean and Sherlock Holmes as more typical of AS, and they're more functional. Not by much though. The latter needs a nurse to get by, and the former is..., well, he's awesome.

The real Rainman (who the character was based on) was diagnosed with savant syndrome not autism. The condition developed because of brain damage he recieved as a child.

I can see how this is a bit complicated.

Obviously, this is all going to be so much easier under the new system. Everything will suddenly be crystal clear and the best part will be to be a newly diagnosed autistic person--the new DX will just make it so obvious what your diagnosis means, why they gave it to you and what you can do about it. (/sarcasm)

Diagnosis under the new system is supposed to include evaluation of severity of each symptom and the kind of supports that might help best. It's not supposed to just be a label and that's it.

While I can see that this would be helpful in recommending accommodations or creating an IEP, I don't see how that is going to help people understand what this thing is that they have.

I don't understand why people will have problems understanding the thing that they have if it is called ASD instead of AS.

Well the S in ASD is huge multi-axis thing. How do you convey where on the spectrum you fall? It was useful to point to the area of the spectrum formerly known as Aspergers with that label, I don't see how not having does anything but complicate communication about what that ASD diagnosis means. This is why I don't think it's going away. Just as the aspie community will keep using the term, clinicians will direct parents to books with the name in the title and so on--because they are useful.

It seems to me that ASD, as it covers the whole spectrum, is less useful for those explanatory purposes--or do you see a way to make it work?

Didn't the AS diagnosis just mean meeting the criteria for AS? But the criteria for ASD are similar to criteria for AS.

The only purpose I can see for specific AS diagnosis is to apply AS stereotypes to people on spectrum.

I have no problem with it.
I don't care if they call me ASD or AS, nothing will change for me.
As a child the severity of my symptoms was between HFA and AS, and they diagnosed me with AS eventually just because I didn't have speech delay.

Now I'll be re-diagnosed with HFA, and for me is the same thing.

I was told I meet the criteria for DSM-V, and even if I didn't, nothing would have changed.

I don't understand how it will prevent people from understanding. Is there really something uniquely special about AS that demands it have a label separate from the rest of the spectrum?

The label didn't help me understand much of anything. I had to get it by studying, reading research, reading other autistic people's accounts (and in this case, I mean people all over the spectrum).

I don't know, I have not read as widely or for as long as you, Verdandi, so that may be a big factor in this.

I am not saying that the new diagnosis will prevent people from understanding, I am saying that without supplementing it with something like the old AS/HFA idea, you are requiring people to look through much more material before they can find things that are relevant to their situation--if they are fairly close to the stereotypical AS description. In those cases, the stereotype for AS has been useful.

I don't know what else to say. It was useful to me, I know others for whom it has been useful and I have heard form diagnostic clinicians that they found it useful, too. Therefore I don't see it actually going away anytime soon, even though the official diagnosis will now be ASD, mild. I still expect people will say "Tony Attwood's guide is useful" or "Aspergirls is useful" etc.

I am currently reading a book called "Cognitive Behavioral Therapy for Adult Asperger Syndrome" by Valerie Gaus (Guilford Press, 2007)

On page 2, there is a note about terminology:

This makes sense to me. I can see that the new ASD diagnosis helps put all the different presentations of autism under a single name that makes their autistic nature clear--and that's fine. But all people across that spectrum are really not dealing with the same thing. The book I am reading is really right for me as a cognitively able autistic person with realized independence potential and the father of a boy with a similar set of talents and challenges. Not having a quick reference to AS as a shorthand for this kind of idea about relative cognitive ability and independence potential would mean using many words to do the job formerly done by a few--that is not helpful.

Being able to use the term Asperger lets me find books like this -- full of useful information -- quite quickly. In other posts, I showed Youtube videos that individuals with an AS diagnosis created under the AS label that I had found useful in explaining what the diagnosis was based on and how autism presents in me.

It is my current understanding that the ASD label covers a lot of autistic presentations that are less relevant to me, less useful in understanding what this means for me, less useful for explaining all this to my family and friends. Perhaps this is just ignorance on my part and when I have read as widely as you it will make more sense--but at the moment, this is the way it seems: A useful shorthand for a set of autistic traits at the cognitively able end of the spectrum is being removed and at best replaced with the less helpful "ASD mild." For this reason, I expect the useful term will continue to be used.

HFASD is used in research, so the HF vs. LF distinction is critical, while the HFA vs. AS vs. PDD-NOS distinction is not. Whenever we talk about "autism" in research studies, we almost always mean "high-functioning autism including people diagnosed with autistic disorder, AS, and PDD-NOS who are cognitively and verbally able."

I think I said this same thing in different words in another post in this thread. Repeat Repeat Repeat.

OK, that's how the term is used in research. What does that have to do with how these terms are used by a family that has just received a diagnosis for their child or an adult who has just been diagnosed? They are not researchers, have no background and are eager to find out what all this means. How does what you have just said help? The image most people have in mind when they use the word that "we" almost always mean as cognitively and verbally able is of someone who is neither cognitively nor verbally able, perhaps rocking in place, banging their head against the wall and emitting wordless noises. Really--this is the image a great many people have when they think "autism." You are doing really well if you get as far as "Rainman" without a lot of explanation.

What is so difficult to understand about high functioning autism that it must have a Asperger label for people to understand it? How does the Asperger label help more than the HFASD one?

Nothing, but we seem to be talking at cross purposes. You are saying there is a perfectly good replacement in HFASD--fine. I am saying I don't see the term Asperger going away because there is a generation of momentum behind it, so it is a useful reference. ASD is very broad and refers to conditions that are quite different. HFASD seems like another way of saying Asperger and that's fine--it may be the term that, over some span of time--years I would think, will replace Aspergers--but it isn't going to happen overnight, and it isn't going to happen because the DSM V is now replacing the DSM IV TR.