Just diagnosed

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I don't know a lot about this but surely this is confirmation that you are on the autistic spectrum, and more precisely that two independent professionals consider after assessment that you have atypical autism.

I'm probably re-iterating what others have written but I wanted to lend my support to this thread and to anyone else questionning what this might mean for them.

Maybe its not what you want to hear - but it is still confirming that you aren't NT ?

Atypical autism sounds good to me - as it is a diagnosis- I'm without one at the moment, and I'm already getting fed up fielding responses like - no there is no way you're on the spectrum.....etc.. I'd love to have something other than read up about the subject, or you don't know me v well. Any diagnosis now would be gratefully received... :0(

Carry on posting here - everyone is welcome!

I think that the NOS label is overused. Isn't more than half of the spectrum PDD-NOS? That doesn't make sense to me. Is it just to cover the suckage of the clinician's understanding that they apply the NOS label whenever they have a bit of uncertainty? It doesn't sound like they explained why eggsacly you weren't diagnosed with AS or HFA, like what eggsacly didn't fit either of those.

Also, does an AS diagnosis require high verbal scores? That doesn't make sense either. Not everyone with AS has high verbal scores.

Atypical Autism, and Pervasive Developmental Disorder - Not Otherwise Specified, literally this just means that they are certain you are autistic, but they can't justify the STRICT criteria set for a diagnosis of Kanner Autism (Classic) or Asperger. Another way of understanding it, is this. You are obviously autistic to the person(people) doing the evaluation, but you do not conform (for whatever reason, means of coping, just how you are., etc) to the Stereotype of Aspergers or Kanner autism.

My heart goes out to you Ojani, my own recent struggle with my official diagnosis and figuring out what it means is different, but no less easy. While I received a PDD Aspergers diagnosis, I was listed with a co-morbid diagnosis of Depression-NOS (which I find totally ludicrous myself). It was explained to me that while I don't meet the strict criteria for a specific depression disorder, it was obvious to her that I am experiencing depression that isn't easily categorized, thus the diagnosis.

PDD-NOS is autism, just as Aspergers is even without it being a part of either name. When they change the DSM, you won't suddenly stop being autistic, and honestly your diagnosis depends just as much on the doctor, and what traits they can observe in the setting as anything else. (EDIT: There is an interview on the web somewhere I am sure I could dig up with Tony Attwood talking about Temple Grandin and her diagnosis that is great. In short he relates the idea of her being a perfect candidate as a child for a "Classic Autism" diagnosis, while if she saw a doctor today for diagnosis she would receive HFA or Aspergers). I think the specific labels, while useful for treatment, tend to be misleading and I'm gladdened that they are both rewriting the DSM to include ASD as a diagnosis, with sub specifics relating to the individual types of stereotyped ASD diagnosis we currently have.

And Ojani, don't let anyone minimize your issues, receiving a diagnosis of Asperger, PDD-NOS, HFA does not mean you aren't affected, god thats been one of the worst things dealing with so far, is telling those close to me and hearing "It must be very mild" or other such nonsense statements. If you go back to the social thinking paper you linked and re-read the WISC category, I think they summed it up very well there. Just because we can cope well enough to "get by" doesn't mean we don't need help with other parts of our lives and a support structure for the rough times.

Whatever our specific PDD diagnosis is, we are all Autistic, and as the saying thats popular around here goes "If you've met one autistic, you've met one autistic", it shows just truly how unique all of us are, even those that share the same current specific diagnosis within the autism community.

Hope this helps, its been what I've been spending a lot of time lately thinking about, so I hope its relevant for your journey, as it has been for mine.

Ojani,
I've been told that in the US, the diagnostic differential between PDD-NOS and Aspergers often comes down to the clinician's determination of the degree of perseveration. Do you have the "special interest" characteristic?

I suppose some diagnosticians assume that they are doing the client a favor by making the diagnosis as lite as possible. It could be institutional policy, based on a misunderstanding of what this does, and does not mean to us.

It may also have to do with who pays for what, and who pays the diagnostician salary. Government agency?

I think that the A-DOS is more accurate for children than adults. The tests make sense for children without adaptive behaviors, but not for adults who have developed some.

Again, thanks for your replies, I'm already feeling better now.

One question bugs me, though, why I can't see more people here with PDD-NOS? They are statistically the largest group. I know it's under "Other autism spectrum disorder", together with classic autism, but it's seemingly under-represented here. People with such a diagnosis don't usually consider themselves "autistic"? Or it's just me?

Every time someone would say "Aspie" or "Asperger's" I would think that it's no concern of mine. Bad terminology, overdiagnosed AS, disacknowledgement of PDD-NOS as atypical autism, strong indication that they should be merged into ASD, or what? Ok, I'm probably pushing the limits too far by now. Besides, it's too late here, I'm tired, I have to go to bed...

plantwhisperer, I have special interests, though I'm not very good at them, I mostly only enjoy them. I wanted as correct an evaluation as was possible, I paid only a small part of it, the rest was government funded.

btbnnyr, I didn't like how I showed up during the ADOS interview. So much was missed.

PDDNOS is an autism spectrum disorder. That means you are still autistic. I don't think it is so much given when the psych doesn't know, it is supposed to be used when you are clearly on the spectrum but do not fit the complete diagnostic criteria for either classic autism or aspergers. It doesn't mean you don't have ASD.

When it comes to the ADIR/ADOS, I did both (and module 4 is made for teens/adults--the psychs are supposed to know what they are looking for). Out of all the scores they take, they must go with the lowest score. So if your lowest score was classic autism, then you would have been been diagnosed with autism. If your lowest score was other autism spectrum disorder, then you would receive either Aspergers or PDDNOS, depending on which diagnostic criteria you filled (and some people have some scores in ASD, but if they got one that says no ASD, then they do not get a diagnosis on the spectrum). It is supposed to be the most accurate test currently available.

Perhaps the reason why you didn`t get a diagnosis of HFA is because there is no such diagnosis. HFA is a label some people use to discribe your functioning level, but it is not an official label even when a psychologist uses it. HFA can refer to either Aspergers or PDDNOS. It can also refer to high-functioning classic autism (but those people are simply diagnosed with autism, not high-functioning autism).

littlelily613, Thanks to you too, it sounds reasonable. It appears so that this bad feeling I have from getting such a diagnosis (PDD-NOS) isn't the psychs' fault at all, rather it is the fault of this category itself, which is so vague it would naturally irritate anyone. I have a growing feeling that the proposed merging of PDD diagnoses into a single umbrella diagnosis isn't primarily driven by the need of eliminating Asperger's, eliminating PDD-NOS is just as (or more) important.