Asperger's / PDD-NOS Diagnosis

[TalusJumper]

Well the results are in- I have officially been diagnosed with PDD-NOS. I am actually more confused than I was before the diagnosis- apparently, the diagnosis process only takes about 20% of the Asperger's symptoms that are shown online into account. By DSM-IV, I believe I fully qualify for Asperger's, however, ADOS testing doesn't reflect the same symptoms. I suspect that ADOS testing Module 4 is either very subjective or not very good with older adults like me. I feel I have about 80% or so of the difficulties typical to Asperger Syndrome people (as I have read in various books, on forums, my diagnosed brother, etc)., however, apparently, I don't "act" like I have it (physical tics, reciprocal conversation and empathy) and this disqualifies me.

The report seems to conflict all over the place, shows Asperger's symptoms everywhere then concludes with PDD-NOS, then recommends that I read multiple Asperger books. Why would a therapist recommend aspie books to someone they don't believe has Aspergers? Besides, reading and relating to multiple books put me there in the first place!

It brought on insomnia and depression. Not because I was wanting to have AS, but more because I still have no idea where I stand and still don't fit in. So much for clarity and closure.

Just wonder if anyone else on here has followed a similar path and can relate?

 

[MoeSzyslak]

All the PDD-NOS diagnosis means is that you missed one (or more) of the criteria for an AS diagnosis. It's could mean your 90% aspergers but just missed that one criteria. The criteria are rather vague and open to interpretation. So it is also somewhat subjective to the person doing the diagnosis. Most doctors won't give a AS diagnosis unless you have a special interest. Yet Tony Attwood in his book states 20% of people with AS don't have a special interest and he still would reccommend the AS diagnosis. So its definatley open to the interpretation of the person doing the diagnosing.

PDD-NOS in and of itself can be either more severe or less severe then AS, so its not related to severity. PDD-NOS is also the most commonly given PDD diagnosis.

I know people in the local autism support group that have had their kids diagnosis change from PDD-NOS to AS (or vice versa) as time moved on.

The last I read, the proposed DSM-4 is going to do away with the sub-catagories such as PDD-NOS and aspergers and just call it all autim/PDD.
So come next year it will be a moot point which diagnosis you have we will all be thrown into the same autism/PDD bucket. (I'm not saying I agree with it, just stating what it is.)

 

[Letter Never Sent]

Sorry to hear about all the confusion. Sounds like pinpointing symptoms to a specific disorder can be tricky. Things aren't as black and white as we would like. Continue to focus on God and your family

 

[Letter Never Sent]

I still have no idea where I stand and still don't fit in. So much for clarity and closure.

Just wonder if anyone else on here has followed a similar path and can relate?

I think this is the main issue for me:
Where do I stand? Where do I fit? Can anyone relate?

I think I found my answers - right here. Right here is where I fit, with all my Christian brothers and sisters. Right here we can all relate. Where are we? I don't know, but we're all together.

 

[TalusJumper]

Thanks for the insight. It is important to me right now and I really appreciate the point of view from your perspective ('Moe' and 'Letter')!

Here is my take on it. I now believe that the results of the diagnostic assessments are as varied as those giving the tests. Depending upon the clinic, some patients are diagnosed in just one or two interviews, others require multiple tests and interviews (with the individual and also family members). If I had the time and resources, I would like to get no fewer than 5 assessments to compare- I have a feeling all would vary quite a bit and I could then throw out the inconsistencies.

My theory is that much of the diagnostic criteria is based heavily on research with children and young adults, I suspect not much has been done on older adults (like me). I am very suspect of the ADOS testing for older adults as Module 4 is generally used from ages of 12-14 through 80 or so. "Module 1 is used with children who do not consistently use phrase speech, module 2 is used with those who use phrase speech but are not verbally fluent, module 3 is used with fluent children, module 4 is used with fluent adults". It seems unrealistic that a test such as ADOS would have the same fit for a 15 year old as one at 50. I know I would have scored significantly differently back then as I do now.

At any rate as Letter Never Sent mentions, as Christians with social difficulties, we can all relate to each other on some level. After all, isn't that what we come here for?

 

[MoeSzyslak]

At any rate as Letter Never Sent mentions, as Christians with social difficulties, we can all relate to each other on some level. After all, isn't that what we come here for?

I am here because this is the only christian fellowship I have. It may not be very deep or very often, but it's all I have. It is comforting to know there are at least a few more people like me in the world.

 

[Letter Never Sent]

Hey TalusJumper ~ how are things going?

 

[dayhiker]

I agree with the idea that we would test very differently at 50 than 15. I've learned so much in those years that it was like I was a different person!

I did get diagnosed as AS, but it was very simple compared to what some went thru. Just a talk with a psycologist or what ever his title was.

 

[TalusJumper]

Hey TalusJumper ~ how are things going?

Hi Letter,

Thanks for the inquiry- been difficult for a while now. Our daughter (20) has been diagnosed with anorexia and was in an eating recovery center for a month. The bright side is that it explains a lot about her previous bitter behavior (eating disorders are very complex and go way beyond poor self image). But now it will be a long road to recovery for her (and us) but we know that with God, all things are possible!

 

[dayhiker]

So the recovery center was able to track down some of her issues so you all know about them now?

 

[Letter Never Sent]

Sorry to hear! Sounds like you're on the right track now though. I'm not much of a prayer warrior, but I'll pray!

Crazy here too - just started homeschooling my 5 year old.

 

[TheChristianAspie]

I am here because this is the only christian fellowship I have. It may not be very deep or very often, but it's all I have. It is comforting to know there are at least a few more people like me in the world.

Please PM me. I would like to send you a link to a (free) book on being a Christian with Asperger's Syndrome. I think you may find encouragement in it.

There are a lot more of us than you may think.