ASD Labeling: The Next Generation

Let's inventory some of the labels that may be ascribed to a child who is A Little Bit Autistic. There are the medical terms:

• Asperger's


• PDD-NOS


• Dyspraxia


• Developmental Coordination Disorder


• Sensory Processing Disorder


• Mixed Expressive/Receptive Language Disorder


• Communication Disorder

And the informal terms:

• "Autistic like"
  
  
• "Quirky"
  


• A Little Bit Autistic :-)
  

And now there is. Wait for it....

"Subclinical AS Symptoms"

Where to start.

In March, I blogged about the February 2008 summit in conjunction with the DSM-V "Neurodevelopmental Workgroup." Now, the April 2009 report has been published, and it is quite provocative, in this bloggers opinion. Unless I'm missing something, notably absent are "asperger's" and "PDD-NOS."

With respect to PDD-NOS, I say "good riddance", but asperger's? The reasoning appears to be that the asperger's/HFA differential diagnosis has little integrity. Anecdotally, spectrum bloggers often identify as "spectrum" or "autism" rather than "asperger's" or "HFA" for this very reason.

In the place of autism, asperger's and PDD-NOS are:

• Most Severe ASD


• Moderately Severe ASD


• Less Severe ASD

Not to leave any stone unturned, the proposed DSM-V revision provides for two off-the-spectrum designations: "Subclinical AS Symptoms" and "Normal Variation." There it is.

Click here to learn more.

I think Brad is currently on that line between "Less Severe ASD" and "Subclinical AS Symptoms."

"Subclinical AS Symptoms." Learn it. Love it.

[Via Change.org]

Update here.

The takeaway.

In comments, LT Mommy and Goodfountain make a compelling case against early diagnosis. These comments have merit, and I could probably be a poster child for the shortcomings of early detection.

My takeaway is different: at 24 months, I believe Brad met the DSM-IV criteria for PDD. During that first evaluation, I recall that, while I was talking to the doctor, Brad flipped over his wooden puzzle, dumped out all of the pieces, and started lining them up on the floor. That stage, when he persevated a lot, only lasted a few months. He didn't respond to name well back then, and he was mostly nonverbal. (When he started speaking, he persevated less.) So I don't fault that doctor for the diagnosis.

I fault her for her prescription for treatment. Effectively, she lumps the autistic spectrum - an extremely heterogenous group - into a homogenous box. If a doctor is going to apply the label liberally, then it's incumbent on the doctor to provide a more nuanced prescription for treatment. And not scare parents into signing up for services that their children don't need. 25 hours per week??? That's a lot of work. If a child doesn't need that, it's irresponsible to make the recommendation.

As I stated above, early detection had its shortcomings in our case. But I know - I'm certain - that there is a poster child for early detection out there. If your child is on the trajectory for classic autism, knowledge is power and time is of the essence. In this blogger's opinion, a parent should not dodge doctors or put off evaluation. The stakes are too high. And no one can force services on your child. The bunker mentality is just as bad, if not worse, than autism hysteria. In this blogger's opinion, there's got to be a better way.

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.

Second Opinion: Lessons Learned

When a child is flagged for autism, the parents' reaction usually falls under one of two categories:

1) "I always knew something was wrong." These parents are panicked and want a diagnosis ASAP.

2) "What????" These parents are caught totally off guard. They just want to know if their child is actually autistic, a seemingly modest goal.

This post is for parents in the second category. If you just want to know if your child is autistic, learn from my research and my mistakes:

a) Don't accept the opinion of an administrator, early intervention or any semi-professional.

b) Seek out a developmental pediatrician. If you live in the sticks, and there are none near you, fly or drive to your closest metropolis.

c) If you get an appointment with a developmental pediatrician, by all means, make sure it's for a FORMAL EVALUATION. Brad's first evaluation was informal; it lasted one hour and did not involve a formal test, e.g. ADOS or CARS. I got the appointment without a wait; literally, she saw Brad the first business day after I called her office. His second opinion, which I blogged about here, was the real deal, and left me feeling confident in the diagnosis. A formal evaluation may take months to obtain, but it's worth the wait.

Feel free to share your stories below, and leave additional tips for parents seeking an evaluation.

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).