PDD NOS V Aspergers

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First I would like to thank everyone for their insight and answering my many questions!

I have posted lots of questions and have explained the difficulties getting dx for my son. I have been advocating for my son who is 13yrs for 5yrs suspecting there was problems long before that and I must admit I was hoping they would go away.

I have gone private and seem to get answers without any difficulties, the difficulties arises when I use the local services, I explained before I live in a small town and here in Ireland private consultants are limited and offer no real after services other then giving you a dx and referring you on to local services.

Huge battle with local services my son had a review today eventually they have agreed that he meets the criteria for ADHD and OCD but not for Aspergers they are suggesting PDD NOS. I have searched the internet which is quiet vague. The one thing that sticks out is speech/language delay my son never had this problem, he has difficulties in communicating and expressing himself, but his speech was not delayed.

He has been dx with Aspergers privately and after many days/nights researching, seminars and posts here I feel that this is the correct dx.

PDD-NOS is just a way of saying, "You're autistic, but you don't fit any specific type of autism." I don't know why they are excluding him from Asperger's; it could be that he doesn't match enough criteria, or has some delays that exclude Asperger's. Or it could be that he doesn't fit the AS stereotype.

PDD-NOS makes up about two-thirds of the autism spectrum; it's the most common type out there. You might as well call it "miscellaneous autism", because that's what it is.

Look at these diagnostic criteria:
http://www.autreat.com/dsm4-aspergers.html

As you can see here, every other PDD (except for PDD-NOS) takes precedence over Asperger's. So, if your son is diagnosable as Autistic Disorder (a.k.a. classic autism or Kanner's autism), then that takes precedence over Asperger's.

Autistic Disorder diagnostic criteria:
http://www.autreat.com/dsm4-autism.html
To meet these crieteria, a case of autism should include two from section A, one from B, one from C, and six total; and there have to be delays in social interaction, language, OR symbolic/imaginative play. I'm assuming that since Asperger's includes social delays, your son simply doesn't have enough traits from the first three sections to fit Autistic Disorder. Does that sound about right?

OK, so let's look at the Asperger's criteria. The main difference here is that there are fewer traits--two from the first section, one from the second section required. Section III means there has to be some kind of disability involved (or you wouldn't diagnose in the first place). IV means no language delay. V limits adaptive skills delays to social interaction only.

So.... let's list the reasons someone who doesn't fit the Autistic Disorder list might be put into PDD-NOS rather than Asperger's.

Any of the following might cause a doctor to diagnose a case that looks like Asperger's as PDD-NOS instead:
1. The person had a language delay.
2. There was/is a cognitive delay (developmental delay). This could be either a low IQ test result, a diagnosis of mental retardation, or a diagnosis of developmental delay.
3. There were/are problems with self-help skills/adaptive behavior--that is, the person has problems learning to take care of themselves, adjusting to new situations (school, etc.), safety, etc.
4. The diagnosis was difficult to make for some reason: Testing was difficult or impossible; childhood records could not be found; parents were unavailable; the person had some other condition which changed the clinical profile. (For example, in a child with fetal alcohol syndrome, it might be impossible to tell whether their delay was caused by autism or the FAS, and so they might be diagnosed with PDD-NOS.)
5. The patient is quite young (usually younger than four years old) and his language and social functioning are not developed enough to evaluate effectively.
6. The person has Asperger's traits that cause impairment, but there is either only one trait in category I or no traits in category II.

There are a few other reasons which get doctors to incorrectly diagnose PDD-NOS when they should diagnose another PDD:
1. The patient doesn't fit the Asperger's stereotype, though he should be diagnosed with AS.
2. The patient doesn't fit the Autistic Disorder stereotype, though he should be diagnosed with classic autism.
3. The doctor thinks that PDD-NOS means "mild" and perceives the case as "mild".
4. The doctor thinks that PDD-NOS means "severe" and perceives the case as "severe".
5. The doctor knows he should diagnose Autistic Disorder, but does not want to scare the parent with the word "autism".

Thanks Callista, again I look at the criteria for AS and my son fit. for me I just hate having any doubt it will keep bothering me. Also I need everyone in agreement to get support.

thanks again.

I really don't think it matters. Both are on the autistic spectrum, and research suggests that autistic vs non-autistic is a reliable distinction while autistic subtypes aren't.

I went into my diagnostic exam expecting an AS diagnosis and got PDD NOS instead. Surprised me, but I didn't really care - I'm autistic, that's what matters, not which specific type of autism they think I have.

You can ask for their reasons to consider a diagnosis of PDD-NOS over that of AS. There's nothing that says you cannot openly disagree with their reasoning and try to get them to see how your son does meet criteria for AS if he does.

Moms know some things best and relatives, tutors, teachers and such can back up that a behaviour is there/isn't there/is different from what the specialist gets to see. Totally go for that if the reason they don't think it's AS is something you totally know is rubbish.

Even if that all has been done in preparation of the testing, it can be worth collecting "more elaborative" descriptions later, a few short sentences can be sufficient, about the one or the two issues that (while already mentioned before in reports) definitely are there/not there/whatever.

Edit: and if you have all done that already - do it again. It's got to get through to them at some point. Don't give up! You and your son can do it, I'm sure of it!

Interesting, I'm newly diagnosed PDD-NOS and didn't know it was that common. I was just speaking to a counselor today about being placed in the middle, not quite having AS and not being entirely NT. Are there any specific communities on the internet that caters to adults with PDD-NOS? I'm new on WP, I guess I should be checking on here as well.

Question: Before I went into testing, I thought for sure I'd test to be AS, but was diagnosed as PDD-NOS. I had a language delay, didn't talk until age 3 and didn't form sentences until age 4. What is the possibility of that me being diagnosed as PDD-NOS instead of AS?

Thanks in advance!

WP is for PDD-NOS people too. It's a kind of autism, just like Asperger's is. That's what the "other autism spectrum disorder" option is for.

Oh okay, thank you. I can't wait to get to know this board, view the different topics and most above, find people like myself!

I agree that it probably doesn't really matter. PDDNOS and AS will both be officially ASD in a little more than a year and a half, so there shouldn't be an issue. Both are on the spectrum. Did the doctor tell you which of the Aspergers criteria your son did not fit? Maybe there was one minor thing that excluded him from AS, but he is still on the spectrum. But again, shouldn't be an issue. Either way he has ASD.

Probably your language delay is one of the reasons why you are diagnosed with PDD/NOS instead of AS (AS requires no language delay).

He didn't say, but he is ignoring a report from speech and language therapist whom specialises in ASD query Aspergers. I spoke with her and her opinion is the he does meet criteria.

As you say its not going to matter, but for myself and my son whom keeps having different labels thrown at him its frustrating. I had done my research on AS accepted this is the situation and then another label.

He has a dx for AS privately I feel this is the right one was just wondering what was the symptoms for PDD NOS. Again as I say my son did not have a speech delay he had good vocabulary.

At this stage I am probably overly sensitive and they don't particularly like me at the local services as I always seem to disagree. But I was right they told me in 2006 that my son had no issues and discharged him from the services.

Well, if you use the term ASD now, maybe you won't have to worry about all those other terms. That way it will not matter whether he is PDDNOS or AS. At least maybe use it to him, to lessen the confusion as he will have to deal with the change soon anyhow. Other than that, I am not sure, though I do understand that it is very frustrating. People are diagnosed with PDDNOS only when they do not match the diagnostic criteria of AS or classic autism, so I am surprised you haven't gotten specific information about why he missed the criteria for the more specific label of AS. Maybe he is not basing his decision on a speech delay but on something else (you do not need to have a speech delay for PDDNOS--it is just a catch-all for people who are definitely on the spectrum but who miss ANY of the criteria for the other disorders).

There are no set symptoms for PDD-NOS. That's why I had to describe it as "autism that doesn't fit into any specific category."

The DSM has it like this:

Ironically, of course, "atypical" is now typical--PDD-NOS is the most common ASD diagnosis.