About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Friday, August 29, 2008

Stability of PDD-NOS, Part II: Analysis

Peer-reviewed, published research indicates that children diagnosed with autism spectrum disorder at an early age can later go on to lose the diagnosis. For example, this study reported that 19% moved off the spectrum. The abstract lists three possible reasons for such movement:

1) True improvement based on maturation,
2) Intervention, or
3) Over-diagnosis at age 2.

The merits of these reasons is the source of much debate. In this regard, let's examine the public remarks of Professor Camarata, the controversial doctor whose research provides support to Einstein Syndrome author Thomas Sowell and shock jock Michael Savage. In a published article, he states:
The broader question is how one can tell if a child has mental retardation, autism or other pervasive developmental disorder, or language disorder-or will simply "grow out" of the problem. [Emphasis mine.]
Camarata doesn't appear to allow for the possibility that an individual can have a pervasive developmental disorder and grow out of the diagnosis. He phrases it as an either/or proposition.

But when we consider these studies in the aggregate, is it even plausible to source all of this movement off the spectrum to "over-diagnosis at age 2" or misdiagnosis. After all, each of these children were formally diagnosed (probably videotaped), and the results of the research were peer-reviewed. Is it even plausible that the researchers conducting the studies were guilty of sloppy diagnostics?

This blogger believes that the first reason - true improvement based on maturation - is the likely source of movement off the spectrum. I believe that the subjects legitimately met the DSM-IV criteria for PDD-NOS at age 2, and later grew out of the diagnosis. This belief is corroberated by the research, as well as my anecdotal experience.

Edited 09/24/2009

10 comments:

Laura said...

Thank you for your...er...comment. Let's recap. Late talker, per the Einstein Syndrome (which provides the foundational for the Yahoo group), means:

"1. Outstanding and precocious analytical and/or musical abilities
2. Outstanding memories
3. Strong wills
4. Highly selective interests,leading to unusual achievements in some areas and disinterest and ineptness in others
5. Delayed Toilet Training
6. Precocious ability to read and/or use numbers and/or use computers
7. Close relatives in occupations requiring outstanding analytical and /or musical abilities
8. Unusual concentration and absorption in what they are doing."

There IS something else going on that has nothing to do with talking. The controversy is what to call that other thing.

If your child doesn't fit the profile excerpted above, then perhaps you're in the wrong group.

My_Kids_Mom said...

Why are you so bent on classifying children WITHOUT autistic traits, save the late talking issue, as autistic? The main difference between PDD-NOS and kids who fall into the late talking 'syndrome', for lack of a better classifier, is that with the latter the delays are not pervasive.

Perhaps some children do grow off the spectrum, but if you believe that then you actually do agree with Mr. Sowell and Dr. Camarata, funny as that might sound, although you don't seem to quite grasp that.

Laura said...

My Kid's Mom - That's been my point all along. There are two different ways to skin the same cat. One is regressive, and one is progressive.

And don't credit me - it's developmental pediatrics that is going in this direction. I'm just pointing out that when a parent adopts the regressive philosophy, that parent will be at odds with the majority of developmental pediatrics, and, obviously, school administrators, and nosy neighbors and the like.

My_Kids_Mom said...

You wrote: There IS something else going on that has nothing to do with talking. The controversy is what to call that other thing.


All those traits you listed, which are part of what Mr. Sowell calls the Einstein syndrome, have nothing to do with PDD-NOS. There is no controversy over what to call that "thing", unless that controversy only exists in your mind. Mr. Sowell simply says the data he has collected is statistically interesting and should be investigated further.

You seem to be bent on grouping the kids that fit into the late talking model, but do not have traits that would define them as autistic per the DSM IV, under the PDD-NOS umbrella.

Why is that?

Laura said...

My moms kids -

The last "trait" (unusual concentration and absorption in what they are doing) is not only a symptom of autism - it's a defining quality. The word "autism" comes from the Greek "autos" meaning "self."

It's almost as though Powell set out to use his gift for rhetorical flourish to euphemize each of the signs of PDD. Clinging to routine becomes "strong will." Hyperlexia becomes "precocious ability to read". Self-absorption becomes "unusual concentration." Also, he compares typically developing children to trained seals. That's good stuff, but when you pull back the curtain (IF you pull back the curtain), you realize he's just pandering to his audience.

Amber said...

You wrote:

"But when we consider these studies in the aggregate, is it even plausible to source all of this movement off the spectrum to "over-diagnosis at age 2" or misdiagnosis. After all, each of these children were formally diagnosed (probably videotaped), and the results of the research were peer-reviewed. Is it even plausible that the researchers conducting the studies were guilty of sloppy diagnostics?"

I *do* think that over-diagnosis at age 2 is a possibility here that should not be ruled out. I'm not suggesting that sloppy diagnostics were at play, but rather that perhaps the diagnostic criteria cast too wide a net, and catch and diagnose some some normally developing children. The problem then, would be with the diagnosic criteria, and not necessarily with the researchers or their study design.

I wanted to add that I'm really enjoying (for lack of a better word) reading your blog (from the first post) and find it refreshing and honest. My son was diagnosed with PDD-NOS 5 weeks ago. While I may disagree with some of your ideas/beliefs regarding treatment (though I'm only just starting to get through all the literature out there and form my own ideas about these things) I really believe you're doing the best you can for your son and your family. I'm also grateful for all the links and resources you've pointed to in your blog. It's given me a starting point.

Barbara Potter said...

Hi-I have posted your blog on a page of my daughter's website. GAME YOGA gifts and miracles everyday. Free YOga for children with special needs. http://www.gameyogagiftsandmiracleseveryday.org/Special-Needs/Blogs.html
We wanted to share blogs written by parents of children with special needs. Pleas let me know if it is alright. Thank you Barbara

PDD NOS GIRL said...

Hey, I've started a blog about me, please check it out :)

PDD NOS GIRL said...

It's about life as a teenage girl is with pdd nos. Kind of a difficult time, but I've had many successes

Gent said...

If Camarata's theories are so wrong, why does he have such a reputation for predicting when these nonautistic late talking children will "normalize?" He does a much more thorough analysis of the children he diagnoses as nonautistic (administering several tests, with data to back him up) than does your average developmental pediatrician. They just blindly go by checklists and are afraid to predict anything.