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, March 1, 2009

Vent.

Thanks for your comments. (And for indulging my vent.) I realize I have to keep going with the vent. To wit:

In the post and in comments below, I complained that the doctor who first diagnosed Brad wasn't helpful. She examined him in an hour. She produced a form letter at the end, the entirety of which reads as follows, verbatim but redacted:
To whom it may concern:

Bradley X (DOB 01/22/2006) is followed in PAC clinic at HOSPITAL. He has been diagnosed with PDD-NOS. Please refer him for Autism Specialty Services though the Department of Public Health. As is recommended by the National Research Council (2007) and the American Academy of Pediatrics (2007), he requires a minimum of 25 hours a week of individualized instruction to address the core deficits of autism, social communication, and play. I recommend instruction based in ABA, Floortime, or a combination.
I asked her to prognosticate in the general sense, or to reassure me that he would be verbal, since he had good gestural communication. She demurred. She said something like: "sometimes I privately predict a child is mildly affected and it turns out to be more severe, and vice versa, and therefore I don't make predictions." She then drew a line, with typical at one end and classically autistic at the other end. She put a point near the typical end, and said that with services, she was hopeful he would migrate over to typical. This is exactly how that exam went down.

So I left with the impression that without Floortime or ABA, there was a chance he might not acquire speech.

There were a number of red flags here, which I picked up on at the time and which provided a basis for my skepticism:

1) There was no wait for this appointment.

2) It lasted for just an hour.

3) The dx and prescription for treatment were produced and printed in a matter of seconds.

4) She qualified her dx by saying: "I might be wrong."

5) She didn't administer CARS or ADOS.

Back to the issue of acquisition of speech: I did what any parent would do under the circumstances - I opinion shopped. I asked Brad's SLP if she thought Brad would acquire speech. She looked at me like I had two heads. "Will he?" she asked. "He is acquiring speech. Now." She didn't hesitate to say with certainty that Brad would be a verbal child. Now why couldn't the Developmental Pediatrician, an MD, do the same? Another red flag.

Although I was skeptical, I felt the need to do the diligence. I met with an ABA provider, and gave the therapy serious consideration. I decided against it for a number of reasons but it wasn't an easy decision. After finding a provider that would administer Floortime, I signed Brad up for 6 hours per week of that therapy.

When I returned for a routine follow up 3 months later, Brad was significantly more verbal. Ironically, I had fantasies of the doctor undiagnosing him then and there. I couldn't have been more wrong: she barely observed him, and was intent on getting me to increase his number of hours of services. Quantity, not quality, was her focus.

3 comments:

Janice said...

It's interesting. When we suspected youngest might be on the spectrum, we began with her GP who referred her to a pediatrician who observed her for an hour, said that he couldn't conclude exactly what was going on but something seemed abnormal and she could be on the spectrum.

However, his observation was enough to open the doors to the specialized diagnosticians and services. We had hearing tests and speech therapy, gross and fine motor skills analysis and even though she did not receive a formal diagnosis until age five (PDD-NOS; autism diagnosis came eighteen months later) we were getting appropriate treatment, I believe. But those formal diagnoses took weeks of work, including hours of observation in the school/daycare settings, at home and in the office with a whole range of tests.

Nobody focused on ABA and floortime in prescriptions, but we did get a lot of suggestions of ways to help her out from the speech and physiotherapists. The services also provided training for her daycare staff and still do some therapy work through the schools to this day.

Long story short, I think that your first doctor crazily overstepped the bounds of what could be appropriately drawn from that brief observation!

goodfountain said...

That doctor should not be evaluating children for ASD.

I have a similar story for when we took Chee to a developmental pediatrician. She met with us for close to 2 hours and at the end she put her hand on me knee, looked me dead in the eye, and said, "she is positively NOT on the spectrum." How do you know, I ask, and she says "because she's far too social and engaging."

Well, yes, with adults she is. Not so with kids (and even LESS SO back then).

She then went onto suggest she had Apraxia of Speech (how odd since she was very verbal).

After that appt and seeking the opinions of our SLP, PT and OT, we decided just to keep on as we were doing and not worry about the follow up visits with the Developmental Pedi.

What I think, now, is that it pays to get referrals for doctors. Some are quick to diagnose, others are quick to dismiss.

I'm sure PDD-NOS would have fit for Chee a couple of years ago too if she had been properly evaluated.

Sigh. Not much to all this really. Just kind of commiserating with you. :-)

Laura said...

Janice, thanks for the note, that's interesting. You know, bureaucracy isn't fun, but maybe it's better that the wheels turn slow sometimes.

goodfountain, interesting, so you did go to a developmental pedi. Apraxia, really? Sounds like your therapists have otherwise served you well.