Monday, November 27, 2006

PDD-NEK

In the continuing saga of diagnostic ambiguity —

Last week the psychologist who had previously taken her copy of the DSM-IV-TR off her shelf and read the diagnostic criteria for autism to Fathersvox and I, told me that Sweet M doesn't have autism. Now she says that Sweet M has PDD-NOS. Atypical autism.

But, she says, she still can't make the diagnosis because she didn't do the developmental history.

So we're back to PDD-NOS. Atypical autism. Sort of.

I knew Sweet M wasn't neurotypical. And now it's confirmed, she's not even typical in her autism, in her atypicality.

I find all of this sad, and funny, and tiring. Very very tiring. It reminds me of the problems of thinking of neurodiversity as a linear spectrum that is being discussed over on Autism Vox and elsewhere.

The entire catagory of Pervasive Development Disorder needs to be rewritten. It's a mess.

I think that what Sweet M and many of us are suffering from isn't PDD-NOS, it's PDD-NEK: Pediatric Diagnostic Disorder – Not Enough Knowledge.

6 comments:

Kristina Chew said...

Then there's the elusive "FLK" syndrome previously given to those kids no one knew how to classify,,,,,,,, the funny-looking ones.

Kassiane said...

I hereby diagnose her with profound Autistic Sweet M Syndrome, Prognosis to be determined by her, her family, her educators, and her development from here on out. Coded 299.7 in my imaginary DSM (all the ASDs are 299.x). ASM Syndrome is very rare, and brings both frustration and joy to the people lucky enough to have it AND the people lucky enough to know them. A Sweet M is a treasure indeed. Not like I'm qualified to REALLY diagnose, but this is what a peer dx I got once (since the docs were playing "scramble the dx" with me) looked like. Profound autistic Kassianeism *nods*.

Where she WAS when she was 2 doesn't matter. Where she is NOW is what matters. I don't understand why psychologists don't understand that...but I guess this is why I can go to 5 different docs and get slapped with all 5 different PDDs, huh?

Do I need to send her a home painted "Property of Club 299" shirt for the doctors to get it? I'd do it...it may take a while but I would...heck, I should make some and just stick them on cafepress, if I can get a good design...it'd be more readable than my writing...*rambles off, & looks for her OWN 299 shirt...*

mcewen said...

I never both mentioning the 'atypical' bit, it just confuses people further, the PDD-NOS is enough to send the average mind into free fall.
cheers

MothersVox said...

I love the Club 299 t-shirt. And then we could also have "Friend of Club 299" and "Mum of Club 299er" t-shirts, too. I can see folks lining up at Cafe Press to buy 'em, so might as well get in on the holiday shopping season!

Kassiane said...

Well, the 'property of' shirts are up...I need to get the friend ones up...and I think we did Mom (USA'ers are horrid) or parent but didnt upload yet.

And we also have a cool puzzle one to get on everything...you pushed our creative buttons. They'll be listed on the rettdevil site soon (main, not blog) if you were serious...

speechmom said...

Hello, I understand how difficult it is. I am a Speech Pathologist and a mom. By 2 I knew something was different with my own daughter. All the Dr visits . I worked with children on the "spectrum" and saw alot of the behaviors in her. PDD NOS - well thats what some said. I didnt stop there I began looking into alternative medicine, nutrition, allergies, etc. After about6 months she was diagnosed by an alternative Dr as having hyperthyroidism, which was causing the delays. She had so much thyroid harmone that her sensory system was going crazy. I followed up with a nyc hospital that took my insurance and it was in fact thyroid disease. Once she started the meds she was able to learn. Now the average lay person would not know about her previous diagnosis. I dont understand why they dont do regular screenings on children with PDD. I cant help but think about some children who might be out there with a diagnosis who might benefit from a simple blood test. Speechmom.blogspot.com