A sentimental story

My First Lesson in Motherhood was published in the NYT "Fashion & Style" section. I read of it through Steven Levitt's ("freakonomics") blog, both of us have adoption stories so we can relate, and there is a clear special needs aspect. I also would have absolved her no matter her choice.

Autism: the label given to a wide and diverse variety of neurodevelopmental disorders

Autism and autism-like disorders are associated with a fairly large number of gene addresses associated with the clinical diagnosis of "autism":

Int J Dev Neurosci. 2007 Apr;25(2):69-85. Epub 2006 Dec 20. A review of gene linkage, association and expression studies in autism and an assessment of convergent evidence. Yang MS, Gill M.

In this article we review the past and present literature on neuro-pathological, genetic linkage, genetic association, and gene expression studies in this disorder. We sought convergent evidence to support particular genes or chromosomal regions that might be likely to contain risk DNA variants. The convergent evidence from these studies supports the current hypotheses that there are multiple genetic loci predisposing to autism, and that genes involved in neurodevelopment are especially important for future genetic studies. Convergent evidence suggests the chromosome regions 7q21.2-q36.2, 16p12.1-p13.3, 6q14.3-q23.2, 2q24.1-q33.1, 17q11.1-q21.2, 1q21-q44 and 3q21.3-q29, are likely to contain risk genes for autism.

It's more evident all the time that we use the word "autism" to describe a diverse group of neuro-developmental disorders with different prognosis and course. It's very hard to come up with good treatments if we're mixing different disorders -- one persons treatment may be ineffective or harmful to another. We need to divide "autism" into at least a half-dozen better characterized disorders.

The end of Down syndrome

Modern eugenics will soon eliminate Down syndrome. (aka Down's syndrome in Canada and the UK)

If researchers come up with genetic tests for Asperger's, or even mere reading disorders, those disorders may also decline in frequency. I hope, however, that the abortion rate for dyslexia will be much less than 90%.

I don't really know what this will mean in the long run, but I don't think we'll be able to do a lot about it.

Update 11/30/08: A screening program in Denmark has cut the Downs syndrome birth rate by 50%.

Behavioral interventions: talking with a child by talking about them

I've complained about the limited numberof behavioral interventions and techniques that we've been able to find. Now I can add one more that we "invented" (rediscovered no doubt).

We know of a child who can become "locked" or "pre-explosive" with very little warning. In this state it is very difficult to negotiate with him. We have been unable to devise a combination of tone, phrasing, cadence, posture, words or content that will divert an explosion more than 10% of the time. If we use the classic techniques of extinction or non-reinforcement he will usually, though not always, become increasingly anxious and angry (40% success). In this case he'll pursue us to maintain contact, and will increase his attention-getting responses until we are obligated to re-engage.

We were wracking our brains to try to devise a different approach when we recalled a technique used in patient care. Every patient, including every physician who's been a patient, knows that it's very hard to follow personal emotionally laden information when it's presented directly. On the other hand, indirect presentation can be very effective. So the physician talks to the patient directly, but knows that only the spouse listening nearby will be able to retain any information. The real communication is thus to the spouse. Alternatively, if one really wants the patient to retain information from the physician, one presents it to the the spouse so the patient is a bystander. (The latter is tricky since patients may think the physician is being demeaning, though in reality the physician knows they would have the same trouble were they in the patient's shoes.)

We've had some success with adopting this technique to our circumstances, though it has the significant disadvantage of requiring two persons in the room. (Ideally an other adult, though another child may do and, in a pinch, I'm going to try talking to the dog.) I direct the questions to the other adult (child, dog) in a neutral, casual way. "X seems to be kind of stuck. He is anxious/worried/angry about _____ because I ____. Can you think of something we could do to help him ....". We talk back and forth, going through the negotiation and discussion process that one would, ideally, hold directly with the affected child.

This has been far more successful than classic "extinction" or non-reinforcement. It seems to induce much less anxiety (we have not truly left), it is clear that the child is the focus of concern, yet it is also true that the child is in a neutral, observing, listening posture. Often he is then able to re-engage, gradually joining a process of negotiation. The moment the negotiation and communication begin, we know "we" (all of us) have won.

Worth passing on, perhaps.

PS. The technique commonly used with teenagers of having every important conversation while driving a car works on the same principle.