Aspies For Freedom

Is there any commonality in the way PDD-NOS patients manifest, which would lead one to suggest they are a distinct group, separate from Asperger's patients?

I know PDD-NOS is where you fulfill some of the criteria for Asperger's (let's limit this to just the HFA part of the spectrum), but not all of it.

But then, what I see far too often on AFF is people saying they think they have Asperger's (or have been diagnosed with it), but then going on to say they may have PDD-NOS or something else because they are "too different from the stereotypical Aspie mainstream, with all their Math skills and rational, stable way of thinking."

Really... is being an atypical Aspie grounds to suggest you are not Aspergian after all, but you have PDD-NOS or something else instead?

Talk about "exclusionary."

I did not have any language delay, so far as I know.  But I do have some "cognitive difficulties," or at least I think that's what they are.  What kind of cognitive difficulties would we be looking for in someone who has PDD-NOS rather than AS..?

Lemme know, thanks

Well, people with "HFA" generally had some speech delays whereas "Aspies" generally didn't. "HFA" and "Asperger's" are not exactly the same although they are often lumped in together. I think PDD_NOS isn't a very good descriptor because if it relies on things such as clinically significant delay in speech, it overlaps too much with "HFA".

I think it is a bit of a cop-out diagnosis really and yes, I know I have said this many times before. I believe "Borderline Autism Condition" or BAC would be a better way of describing those who have some autistic characteristics but not quite enough to be formally diagnosed with any of the other autism types.

Yep, that's right. If there is a cluster of symptoms such as Breeze describes, it should be possible to fit these kids/adults into a discrete category rather than the catch-all "diagnosis" of PDD-NOS.

This might be something for the next DSM.

Yes, and I note that in states in Australia where psychiatrists are only funded when they diagnose children with autism of one form or another and get no funding for a diagnosis of PDD-Nos, there are barely any diagnoses of PDD-Nos.

This suggests to me that it is a bit of a joke.

By "typical profile", I was referring to the exaggerated stereotypes that rarely apply to anyone. Sorry about being unclear with the language (something I seem to find unavoidable, both due to my own limitations and those of the English language).

So I was meaning to say that the stereotypes of the "gifted, socially awkward computer geek loner" (a "high-functioning" stereotype) or of the "cold, autism-imprisoned hopeless changeling" (a "low-functioning" stereotype) are not useful, and most people don't come close to them, and they are not definitive of autistic people. Some autistics may fit (at least the first one, the second one is loaded with BS). That's the minority though.

And one reason that a person might be diagnosed as PDD-NOS is because a diagnosis of Autistic Disorder may incline insurance and government services to think of the individual as hopeless and be reluctant to provide assistance.

So I guess that my "true" definition of a "typical Asperger profile" is rather hard to express in words. No single configuration of characteristics is going to be definitive. Even the "official" criteria have things like "4 of 6 criteria met" or "1 of 3 criteria met". There is extreme variability, and even if your particular "profile" is unusual, that doesn't make it any less valid than a more common cluster of characteristics.

It's ironic because here, you need a specific diagnosis in order to find assistance eg. HFA, Asperger's, Kanner's etc. The descriptions above of "PDD_NOS" sound very much like what I understand to be HFA.

The "PDD-NOS" label is a pretty silly concept to me, and it's used in such a broad range of situations.  My partner was dxed with it before AS entered the DSM, which actually made sense at the time.  I don't think there's as much of a need for it today, though, and the term is just so non-specific.  Today my psychiatrist was debating whether to change my dx to "PDD-NOS" even though I already have an AS diagnosis from someone else.  Psychiatry is a mess rather than a science IMHO.

Yeah, the whole "aspies are great at math" thing is a stereotype. Even with people who do have some mathematical ability, even if it is significant, they might also have a lot of difficulty with a related mathematical type activity.

For instance, when I was younger, I was good with manipulating numbers but really bad with abstract math. Now I'm the opposite, and can understand abstract math pretty well but for the life of me can't make change or add up the cost of a soup and a salad even when prices are listed clearly. And there are plenty of auties with difficulty in both types of things, as well as other things.

I feel that the most damaging part of the "autistics are savants/great at math/high IQ" is that it makes it seem like, "well, so-and-so wouldn't have much worth, except that they have this great ability in X, Y or Z" - the perfect set-up for devaluing a person based on ableist assumptions that worth is dependent upon / connected with abilities.

Do some practitioners use PDD-NOS just to mean "Asperger's, but more mild than I think Asperger's is even though this person seems to fit a lot of the criteria"?  That's how I think my psychiatrist meant it.  Sigh.  Of course, I'm not sure I put a lot of stock in what she says, given that she thought "Asperger's NOS" was an actual diagnosis until looking it up.

I'd have been severely P'Oed if given such a diagnosis as it would be as if they were saying that there wasn't really anything the matter even though I knew there was.

It would be better to remove PDD-NOS as a diagnostic label and ensure all diagnoses fall into one of the other categories.

But you might as well be telling parents that there is nothing the matter when you say PDD-NOS. If it is subclinical, why not just call it Borderline Aspergers or Borderline Autism and have done with it?

I have several friends with Asperger's who also have or had learning difficulties. I still think it would be far less confusing to do away with PDD-NOS as a diagnostic criterion.