Sunday, May 04, 2008

Autism turns into Asperger's - how did that happen?

"Sam" (pseudonym) isn't "autistic" any more. Now he has "Asperger's".

He used to have "autism", so what happened? What was the key intervention?

Was it abstention from immunization? No, he gets poked regularly.

An alternative or experimental medication? No, he's never taken any medications (unlike his sib - we treasure medications when they're valuable).

An intense program of behavioral therapy? No, he's mostly inherited the fringes of the home built behavioral program his older brother needs.

Dietary changes then? Vitamins, supplements, abstention from gluten? Well, he only accepts a very limited diet, but it contains a reasonable amount of gluten, wheat, etc. He's finally accepted his sister's daily multivitamin, which might help avert scurvy.

A quiet, calming, nurturing home environment? *Cough*. No.

A brilliant set of therapists and teachers? Actually, we've been pretty lucky with his school teachers and he's had some very good therapists. So points there maybe.

Really, though, as you've probably guessed by now, the "transition" is due to two things:

  1. The slow change in the definition of "autism".
  2. The unstudied and mysterious natural history of disorders of the developing brain.

First, the change in definition.

"Sam" had significantly delayed and disordered language development, that, in combination wiht other findings that gave him a "slam dunk" diagnosis of "high functioning" autism. It used to be, "once autism, always autism", even if the subsequent course looked more like Asperger's.

Well, definitions, like species, evolve. The new fashion is to make the labels "descriptive" of the current state, perhaps as part of a recognition that we really don't know what the heck these things are beyond "developmental brain disorder".

It's this kind of change in definition that confounds naive research. It's the first part of "Sam's" reclassification.

The second part of the reclassification is "Sam's" course. In many ways he's done very well. We're happy, but how unusual is that?

We don't know.

We really don't know the "natural history", that is, the expected course, of these disorders. I've been tracking the medical literature on this topic, and there have only been a handful of studies tracking the course of children labeled as "autistic". As in maybe 1-2 half-decent studies.

We don't know if it's common to improve, we don't know if one can see pre-adolescent improvement and then adolescent regression, we don't know much at all.

It's pretty hard to study treatments of a disorder when you don't know how it usually goes!


Maddy said...

Too true, but I believe the situation is even more confusing for girls on the spectrum where the statistical data is even more sparse.
best wishes

John Gordon said...

Excellent observation Maddy. As weak as our knowledge base is for autistic-spectrum boys, it's much worse for girls.

There's good reason, based on what we know about gender-specific brain development esp. in adolescence, to expect the course (natural history) to differ considerably by gender.

Lee said...

Four years on from this posting and now it seems that Asperger's syndrome is going to be re-classified as 'mild autism.'

JGF said...

Hi Lee. I think that four years from now it will be obvious that we need a new way to classify all the neurodevelopmental disorders of childhood onset. (Some call these "connectopathis", but I think that's premature.

The word autism is not terribly useful.

Incidentally, four years later, this young man continues to progress. He is not "normal" (whatever that is, perhaps nobody is) and he still has (relative) disabilities in many domains. I think he'd still meet diagnostic criteria for autism spectrum disorder. I do believe he will graduate from college one day.