April 28, 2011

What Should Really Be Done For Autistic Children?

if only he had been diagnosed earlier

Though not my field, my recent experience (N=1) lead me to ask myself, and now you, a terrible question.

There are numerous modalitlies and medications and theories that are used to help autistic children.  You try to find a treatment program that suits the child and the family, and you begin; then ordinary life intrudes: missed appointments, effective medications aren't well tolerated; unforeseen consequences, etc.

So I wondered: given unlimited resources, unlimited access, the best "clinicians" available in the world-- what could be done?  I don't just mean rich parents; I mean someone like the president of the United States, with enough clout to be able to command the attention of anybody he wanted.   What's the best possible outcome? It seems like we should know what that is before we move to a general approach.

For ease of discussion, let's just take the simple(r) case of a high functioning Asperger's boy.  Bill, age 6, has social delay, speech and language delay, motor coordination problems but most major milestones hit appropriately, and no intellectual deficits. Struggles with empathy, with articulating emotions, acts out when frustrated.  Fails the Eyes Test.

Is there a theoretical maximum to improvement?  I can predict remission, "cure," in depression.  Is it possible to take Bill and make him into an adult who would not be detected as ASD on objective testing?  (Let's leave aside whether other people can tell there's "something about him.")

If the answer is yes-- that using the best of the best of all of the world's resources a child can eventually "lose the diagnosis"-- then the terrible question I asked is, does the treatment itself cause even worse damage?

Here are some of the structural problems of the treatment:

0. The diagnosis will make the parents want to try and help the child.
  This is axiomatic.  No parent with access to services will be told their kid has a diagnosis of "PDD" or Asperger's and say, "not interested, let's wait a few years and see how this goes."  Once a diagnosis is made, the psychiatric juggernaut is activated. 

1. The race against puberty.
  That's how long you have to teach meaningful coping strategies before the gigantic burden of sexuality and adolescence hits you in the face.  So let's agree that the majority of the work has to be done in childhood; parents won't wait.

2.  Do you tell the school?
  Remember, these parents do not need the school to access services, they can get them on their own.  Should they tell the school anyway?   We talk about stigma, but the more dangerous and pernicious force is the contextualization of all behavior.  Even if we predict "remission" by age 18, the existent diagnosis of ASD alters how they see him. If the kid fights another kid at recess, it could just be a fight, but it will be impossible for the school to see it as anything other than a manifestation of autism.  The y may not treat it differently this time, but the kid is always going to be operating from a defensive position.

3.  The treatment harms self-esteem.
  Sending a 6 year old to psychiatry and etc is fine, but as the kid gets older and understands the social interpretation of psychiatry, it is likely to be a blow to his self-esteem.  (True?)  And as the kids get older, they may make fun, or just  treat him differently.  Does treating autism lead to marginalization, poor self image, and... depression?

4. The treatment is necessarily ab-normalizing.  The best treatment probably includes different things, e.g. play therapy, social skills group, horseback riding-- again, I am positing access to the "dream" treatment plan.  All of those things take up time.  When does the kid get to watch Secret Of The Kells and play Legos instead of "you only have time for one, we have to get to Dr. Miller's by 4"?  At some inflection point the treatments are taking time, energy and interest away from ordinary activities.  Does he lose by not having them?

5.  Other parents.  Posit again that this treatment works, it makes the kid completely "normal" by age 16-- as defined as undetectable on objective testing.  He has, however, been long identified as in intensive treatment.  When the kid is 16, what parents are going to allow their daughter to go out with "the autistic kid?"  I wonder if parents would much sooner let their daughters out with the "odd" kid (who never got treatment) then the perfectly normal kid with a diagnosis. 

Etc.  Certainly at the low end of functioning services become more valuable, but at some higher end of the spectrum... does intervention cause (un)forseen consequences?

Neither is this a question about "too much of a good thing."  The question is: is the mere activation of the psychiatric infrastructure more harmful than helpful?  If Bill Gates had been diagnosed... then what?