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.

Sunday, August 17, 2008

Second Opinion: The Narrative

A Little Bit Autistic is feeling a little bit less autistic today.

On Friday, Brad was evaluated for a second opinion on his PDD-NOS diagnosis. Bottom line: still PDD-NOS, but the prognosis and plan for treatment are significantly changed.

Brad's evaluation lasted three hours. The developmental pediatrician is conducting a study relating to autistic spectrum disorders, the observation for which would be concurrent with Brad's evaluation. (I consented to the study in advance.) She administered two tests: Mullens and ADOS. In lay terms, Mullens is intended to measure Brad developmentally, but is not an "autism test" per se. ADOS is a standard test used to evaluate autism.

Thirty minutes into Mullens, the doctor offered an unsolicited remark: "I don't think this is PDD."

My jaw dropped. I was stunned. I didn't press her for clarification. I just sat in stunned silence.

During the ADOS test, Brad did well, but demonstrated PDD traits, e.g. mild aloofness and repetitive speech.

When all was said and done, the doctor told me that Brad has PDD, but just barely. One might even say he has the much-derided "checklist PDD" that we discussed in this thread, i.e. he meets the diagnostic criteria but perhaps lacks the essence of PDD. She told me that she won't include Brad in her study out of concern that he will "mess up the data." She added that his prognosis is good. It's extremely unlikely that PDD will be part of Brad's life long-term.

She added a novel observation: his fine motor skills and coordination are lagging for his age. She gave him two new diagnoses: hypotonia and lack of coordination. This was not entirely surprising, since Brad is in occupational therapy and his therapist had informed me of these issues. I just figured that they were part and parcel of PDD. The doctor seemed to indicate that his fine motor and coordination deficits go beyond the norm. FYI: Brad never missed a motor milestone when he was an infant. And to clarify, he eats fine with a spoon, and can thread a bead, so it's not like he's obviously or severely impaired.

Because of the motor/coordination issues, we're going to explore two possible neurological causes:

1) Mitochondrial disorder. This is best known as the metabolic disorder suffered by Hannah Poling, the subject of a controversial and highly-publicized government settlement. Brad is going to have a series of blood and urine tests. If anything comes up positive, then we get a referral for another doc.

2) Jaundice. Brad developed jaundice a few days after he was born. I don't know the levels, but it required him to undergo phototherapy, i.e. the "billi-lights". Apparently, severe jaundice can cause brain damage. However, I doubt there will be a connection because I believe Brad's billliruben was never dangerously high.

As for treatment, the doctor was very happy with the present composition of services. Her only recommendation was to add physical therapy to the roster to address the low muscle tone (hypotonia).


Jann said...

Well, Laura, I'm glad you got a followup, and the only surprise to me is that there is still a PDD label at all. Again, where's the "pervasive" aspect?

Your experience is happening to parents all across the country...half-baked "assessments" that stick labels on kids too quickly and cause the parents to freak out, because they feed them the line "if you don't act right away, your child will be ruined forever, and it's because you didn't act." Oh, and by the way, that will be 12 grand to do ABA therapy.

It's interesting you recognize the wisdom in this developmental ped., all the while making wild accusations accusing the Camaratas of "making things up," even they used the standardized tests your inital assessor failed to do.

In reality, the parents of the LT board are a lot like you. The core of the DX they got sounded wrong, so they started researching.... that led them to Sowell's book and then the Camaratas, and a correct DX.

Again, if you'd stuck around the LT board long enough, you would have found parent after parent who stopped by to visit the board just to say how great things were now that their LT had caught up on language.

But the toughest thing many parents find when they are thrust on this course is to try and ENJOY childhood with their LT, because they feel in the back of their mind they should be off on wild goose chases on the next big cure.

And then, by the time their kid catches up....they've lost those precious years to worry and grief and time spent driving to and from therapy sessions.

- Nann

Margery said...

Well said Nann.
It takes times to assess a child - not one hour.
This problem tends to be a larger amount of reports by parents who join late talker groups.The reason the larger amount results in delayed speech is because it simply is what it is - a higher number statistic in reality.
PDD is a smaller statistic so there will be smaller reports of PDD . But these parents with PDD children have been on the late talker list - I speak with some offlist quite often over the years.
The facts are in another parent's case , PDD can be missed because only an hour was spent with the child.
Also, a really good clinician will tell you that at minimum.... multiple hours should be spent evaluating a child. As well, the younger the child, its better to do two evaluations so there can be a more accurate ( six month ) window.
Therapies will differ when there is an attitude that a child's motivation to communicate is less ( PDD) and when a child really has a learning challenge with language ( receptive speech)
Floortime will address more readily following the child's lead, than some other therapies so it can be compatable with different children's needs.There are other therapies following the child's lead . Communication techniques by MacDonald has similarities to Floortime.
But to accurately address specific needs of a child , it is better to have an accurate assessment to better address needs.
If my child had trouble understanding language, I would want exactly that..... not the needs addressed by accident, but the therapist addressing it knowing this is what the child needs.

Laura said...

Expressive/receptive language disorder is intellectually dishonest. So too is pretending that a child who fits the diagnostic criteria for PDD doesn't have PDD. "He just acts autistic because he can't talk and it frustrates him." That's what passes for logic. No thanks. I like the autism rubric, flawed as it is (e.g., ABA for all). The "trauma" I experienced was only because I had a regressive mindset, much like yours and Margery/Esthart.

And Margery/Esthart: I read your comments on Jeanna's blog. I never stalked anyone. I blogged. Learn the difference. And look in the mirror if you're seeking harrassment and obsession. I can't lose you. But I like that you post because you make the case for me, i.e. "if he's lovable, he must not be autistic!" Keep it up so those lurking newly diagnosed parents know the true colors of the LT group philosophy.

Jann said...

Laura, again, you pick and choose and distort autism and PDD. That's what's intellectually dishonest.

SEVERE, SEVERE, SEVERE, SEVERE. That's what the DSM states. Not mild, not moderate, not a little bit. SEVERE deficits.

Expressive/receptive language delay is a medical dx, Laura. Not anything made up, even if it doesn't appeal to you personally. Maybe it's not dramatic enough for you?

And actually the heart of autism and PDD is a core desire not to communicate, or in Asperger's, not to be able to read the social cues.

And if you've ever met an older child or adult with autism, PDD or Asperger's, you'd see the truth.

Stretching out the "spectrum" (talk about dishonest!) only harms every child....it pushes out kids who truly need treatment to help kids who don't really need it.

With finite resources to help kids with autism, it's downright immoral.

-- Nann

Laura said...

Nann - correction: we're acknowledging the spectrum, not stretching it.

We're going in circles so I'm not going to protract the debate.

But I will say this: perhaps you should continue to read my blog. The mito disorder that my doctor is exploring is on the bleeding edge. My reasoning for joining the LT group was to gather as much info from as many sources as possible. You might wish to do the same. FYI mitochondrial dysfunction is treatable.

Laura said...

anon/Margery/eshtart - Feel free to continue to thread crap. I'm taking the high road.