Does an Autism spectrum diagnosis expire or abate?

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RobertColumbia
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08 Jan 2017, 4:49 pm

I recently discovered that I received a diagnosis of Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) in childhood, most likely around 1990 or so under the DSM-III-R. That diagnosis was soon "changed" by my doctor to ADHD, and I received an "adult" ADHD diagnosis later.

Right now, I am suspecting three things: 1) That I really am a person on the Autism Spectrum. 2) That a *formal* Autism Spectrum diagnosis might help me get the services I need. 3) Already "having a diagnosis" would help me avoid having to find and pay for a formal Autism diagnosis today (money, time, specialists, etc.).

My question is, does anyone know anything about whether or not such a childhood PDD-NOS diagnosis still "counts" as a valid label that can be claimed? I suppose that I can just write to the organizations I am looking at getting services from and ask them if they will accept a 25-year old diagnosis without a re-evaluation, but I wanted to see if anyone had already tried something like that or if they knew the standard "rules" regarding something like that.

I do not have a burning personal need to get re-diagnosed as an adult as I already know that I have a great many Autism Spectrum traits and I am fairly convinced that Spectrum-related services are likely to be helpful to me.

My guess is that the diagnosis is still "good", but the two big concerns I have are that it was made under a previous version of the DSM and that the diagnosis was "changed" to ADHD.



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08 Jan 2017, 8:39 pm

You might ask around to see if the services you want are really available to older adults. In a lot of places, services are only available to young people.



BTDT
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09 Jan 2017, 9:56 am

I'll add that some services may not require an expensive diagnosis. I believe Roses for Autism has helped those on the autism spectrum get job training even without an official diagnoses. Their funding model is to get folks off disability assistance--the exact diagnosis may not be a factor as long as they can do that.



honeymiel
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10 Jan 2017, 6:30 am

You will need to write the places that you are hoping to get support from directly to ask if they will accept a childhood diagnosis. You may find that getting re-diagnosed will be helpful to you anyway in the future, as the DSM-5 now streamlines all disorders under the one title, and you won't have to waste time explaining to people what PDD-NOS is and how it affects you. I'm not sure, but I would imagine that having a current diagnosis will make it easier, especially as the diagnostic criteria has changed since you were originally diagnosed and there could be some doubt now about whether the issues you experience may in fact be subclinical



Veilmenacex
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22 Jan 2017, 2:25 pm

hey



AspieUtah
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22 Jan 2017, 2:42 pm

RobertColumbia wrote:
I recently discovered that I received a diagnosis of Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS) in childhood, most likely around 1990 or so under the DSM-III-R. That diagnosis was soon "changed" by my doctor to ADHD, and I received an "adult" ADHD diagnosis later.

Right now, I am suspecting three things: 1) That I really am a person on the Autism Spectrum. 2) That a *formal* Autism Spectrum diagnosis might help me get the services I need. 3) Already "having a diagnosis" would help me avoid having to find and pay for a formal Autism diagnosis today (money, time, specialists, etc.).

My question is, does anyone know anything about whether or not such a childhood PDD-NOS diagnosis still "counts" as a valid label that can be claimed? I suppose that I can just write to the organizations I am looking at getting services from and ask them if they will accept a 25-year old diagnosis without a re-evaluation, but I wanted to see if anyone had already tried something like that or if they knew the standard "rules" regarding something like that.

I do not have a burning personal need to get re-diagnosed as an adult as I already know that I have a great many Autism Spectrum traits and I am fairly convinced that Spectrum-related services are likely to be helpful to me.

My guess is that the diagnosis is still "good", but the two big concerns I have are that it was made under a previous version of the DSM and that the diagnosis was "changed" to ADHD.

Diagnoses like PDD-NOS are considered lifelong unless the diagnosis was mistaken based on new behaviors, characteristics and comorbids. Certain changes in diagnostic criteria might also affect a prior diagnosis. If your PDD-NOS was changed by another clinician, that usually means that you no longer diagnosed with PDD-NOS. But, when you describe your PDD-NOS was "changed," could it be that your ADHD was actually "added" to your pre-existing PDD-NOS, not replaced? That might make a big difference.

As others have written here, it would be best to track down any and all of your diagnostic papers before you get too far ahead of yourself. If it turns out that your ADHD did replace your PDD-NOS, you might need to be re-assessed for Autism Spectrum Disorder. If you have your papers collected, it might be considerably more affordable to find a clinician in private practice who could review the papers and recommend your next steps.

If you do have your papers and simply want to pursue certain governmental, educational and professional supports for yourself, contact an autism-related organization near you.

Good luck with your pursuit to re-discover your past. And, don't worry about asking more questions. :)


_________________
Diagnosed in 2015 with ASD Level 1 by the University of Utah Health Care Autism Spectrum Disorder Clinic using the ADOS-2 Module 4 assessment instrument [11/30] -- Screened in 2014 with ASD by using the University of Cambridge Autism Research Centre AQ (Adult) [43/50]; EQ-60 for adults [11/80]; FQ [43/135]; SQ (Adult) [130/150] self-reported screening inventories -- Assessed since 1978 with an estimated IQ [≈145] by several clinicians -- Contact on WrongPlanet.net by private message (PM)


RobertColumbia
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23 Jan 2017, 1:52 pm

AspieUtah wrote:
...Diagnoses like PDD-NOS are considered lifelong unless the diagnosis was mistaken based on new behaviors, characteristics and comorbids. Certain changes in diagnostic criteria might also affect a prior diagnosis. If your PDD-NOS was changed by another clinician, that usually means that you no longer diagnosed with PDD-NOS. But, when you describe your PDD-NOS was "changed," could it be that your ADHD was actually "added" to your pre-existing PDD-NOS, not replaced? That might make a big difference.

As others have written here, it would be best to track down any and all of your diagnostic papers before you get too far ahead of yourself....

If you do have your papers and simply want to pursue certain governmental, educational and professional supports for yourself, contact an autism-related organization near you.

Good luck with your pursuit to re-discover your past. And, don't worry about asking more questions. :)


Thanks, I'm working on trying to find a good way to get the documents (if they still exist).

Does anyone have any suggestions on organizations? The primary service that I've been looking for is job placement. When I've investigated local organizations, the typical answer I get is either that they do not do placement, or that they only do placement for menial jobs (e.g. janitorial, laundry, box packing, etc.) and that someone with a university degree, high IQ, high reading level, and high math level such as myself should be able to get a job on his own. I also get a lot of offers for services that I *don't* need, like basic literacy training (it's as easy as G. E. D.!), basic computer training (from people who know less than half of what I know about computers), and training on how to ride a bus. Surprisingly enough (or not surprisingly enough), when I mention that I'm an expert traveler and express interest in teaching a bus-riding class, there is no interest.