Friday, August 31, 2012

Special needs adolescence: separating compulsion from poor choices

#1 son is deep in the unknown country of special needs adolescence. He hasn't necessarily added OCD to his ADHD, but there's always been an element of obsession and compulsion in his nature. That's a bigger problem these days.

When I consider the behaviors I'd like to change, I find it useful to divide them into two categories:

  • compulsive behaviors
  • poor choices
Of course all behavior is a mixture of both, but it's still, I think, a useful distinction. Consider, for example, a man who loses $1000 playing poker in Las Vegas. If he can afford to play and lose, he doesn't have a problem. If he chose to play and can't afford to lose, he made a poor choice. If he was compelled to play, whether or not he can afford to lose, he has a gambling problem.
There are ways to change behaviors, but the techniques for changing choices are different from the techniques for changing compulsive behaviors. Most importantly, his choices aren't in play if his behavior is compulsive. Until we address the compulsion/obsession aspects of his behavior we can't work on his choices.
So we're studying techniques that have been developed to address obsessive-compulsive disorder (OCD). These fall into two broad divisions: behavioral and cognitive. Because of his low IQ we clearly need to emphasize behavioral therapy.
From what I've read so far than means "Exposure and Response Prevention" or "Exposure and Ritual Prevention", which is apparently based on "Pavlovian extinction" or "respondent extinction" (something we're a bit familiar with).
Based on my limited readings I'm putting together a plan that we can review with his therapist, and a reading list (below). From the list I can see that if Ross Greene is the guru of the explosive child, then Enda Foa is the guru of compulsion management. 

See also (clearly Edna Foa rules):

Thursday, August 30, 2012

NYT OpEd on Immune disorder causes of autism: extremely suspect

The NYT has published an opinion piece by Moises Velasquez-Manoff claiming that at least 1/3 of autism is fundamentally an intrauterine inflammatory disorder associated with a widespread increase in immune disorders arising from our parasite-deficient modern lifestyle.

The extended essay includes this key phrase: "Generally, the scientists working on autism and inflammation aren’t aware of this — or if they are, they don’t let on."

That's a telling phrase. What we have here is an expansive theory outside the established research community claiming a dramatic breakthrough.

Well, those things do happen - particularly in medicine. I remember prion disorders and helicobactor pylori discoveries; two Nobel prize winning discoveries that were initially radical.

Except this appears to be Manoff's theory, and he's not a scientist. He has a BA in Literature and an MA in science writing. The number of breakthrough insights into long researched disorders delivered by non-scientist non-researchers is essentially zero.

Maybe our lack of a parasites is a problem; I well remember early studies on treating ulcerative colitis with iatrogenic parasite infection. Maybe there are immune abnormalities that correlate with some causes of autism. Maybe intrauterine inflammation, of microbial or other etiology, play some role in brain injury. 

But putting them all together into one package claiming a major breakthrough by a non-researcher? That's multiplying improbabilites. 

The New York Times should never have put this on the OpEd page. 

Ignore it.

Friday, August 24, 2012

Special needs adolescence: enter the unknown country.

To us raising a healthy neurotypical child seems almost absurdly easy. Send them to school, try to avoid major injuries, apply some basic behavioral modification measures, don't do bad things, have fun. It seems more of a hobby than a job.

Except then comes adolescence. Sometimes it's fairly quiet, sometimes it's hell -- even for a neurotypical child. Parenting starts over as the human brain goes through a painful and problematic reboot. Considering what we have learned about the extent of brain remodeling during adolescence, it's astounding that the young male can function at all. It's not surprising that things can go badly.

Special needs adolescence, is, of course, even more complex. It is truly an unknown country; unexplored and unmapped. In special needs adolescence brain remodeling is running against a background of dysfunction and compensation. Even more than neurotypical adolescence, it would be surprising if it went well.

In our case #1 does not disappoint. He is complex and challenging. Our mission therefore is to get through this with an intact family, no jail time, and have him positioned to resume life.

It may be helpful (or discouraging) to share part of his story - at least in the abstract. Imagine, to begin with, a mixture of behaviors from ages 3 to 15. A taste for both stuffed animals and educational web sites (I've learned a lot.) Imagine previous disabilities, but now with new features. So anxiety and irritability ("Explosiveness") remain - but now there are features of obsessive-compulsive disorder. Compulsions and obsessions not only with airport schedules and soccer teams, but also with unearned acquisition and icons of lost childhood. Now add confusions in sexual identity. Next add a growing and well deserved fury at newly recognized limits for independent life, for education, for sexual expression and partnership. Did I mention integration of an exceptionally difficult adoption narrative?

Yes, complex and challenging. Travel, for one, is far more difficult. Just as we would want him to be more independent, he requires even more monitoring. Alas, his guile and stealth belie his measured IQ; our monitoring is not always successful.

It could be worse of course. He's not a threat to himself or others. He's not hitting or biting. He's reasonably good to his siblings and kind to animals. He can still be charming. Alas, going by past experience, things will get worse before they get better.

So, somewhat creakily, we pivot. (Our pivoting doesn't get easier as we wear out.)

Now we need to learn about behavioral management for OCD. Now we need to meet with his psychiatrist and review medications. Perhaps we will need to decrease stimulant use, and consider SSRIs (though he did poorly on them as a younger child). We may ask his therapist to consider family rather than individual therapy, especially since he now likes to engage his younger brother as an advisor and "lawyer" in matters of family discipline.

We can expect some confusion from our consultants; #1 is usually a bit out of their playbook. As always, we will have to come up with our own program, based on bits and pieces from books and experienced therapists and our own experience and judgment.

We will have to map the unknown country as we visit it.