The Speed of Dark

A woman in Irving, Texas killed her two autistic children, then called the police and turned herself in, saying she didn’t want them to live like that.
The story, and the reactions to it (both here and the Star Telegram: http://www.star-telegram.com/2010/07/20/2349223/09-cps-inquiry-on-irving-family.html) reveals a lot–but not enough–about the woman, her situation, the state’s social services, and the attitude of the public towards women who kill family members, including children, v. men who kill family members, including children.

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For parents,  a child’s “pathology”  or diagnosis may sometimes seem to encompass the whole world.   You’re in the trenches, dealing with it every day–the child’s behaviors, the child’s struggles, the reaction of those around you to the child and the child’s struggles, and your struggles, the therapy appointments, the judgments so many people make about you as a parent and your child as a child.   Anyone in any of life’s “trenches” (whether it’s a health or economic or social trench)  begins to feel that the sides of the trench and the shells raining down from above define reality.

But that’s not the case.

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It’s understandable that parents of children with autism, like parents of children with any developmental problem, want to know what caused  it–and often want to know who’s to blame.    Unfortunately, in the case of autism and childhood immunizations, a combination of greed, bad logic, and outright lying by some unscrupulous  “investigators” has created a situation in which innocent parents have come to believe that evil vaccines caused their children’s autism.

It’s not true.   Yet, like many errors, it’s become ingrained in some peoples’ minds–largely because of three factors.  First, it gives parents someone to blame and gets them off the hook with relatives.   If it’s caused by vaccines, they don’t  have to consider the known causes, including genetics.  Second, it makes a huge profit for those who promote the vaccine hypothesis and offer goods and services to ameliorate the supposed damage done by the vaccine.  And third, there’s the profit motive: if autism were caused by vaccines, then suing vaccine manufacturers (and now, the government because it’s taken over the liability) could make a lot of money for lawyers and parents alike.

To understand why the vaccine hypothesis is wrong requires some history as well as good science.

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Thirty years ago,  children with disabilities were not guaranteed education in public schools.    My state had residential schools in the state capital for deaf children and for blind children, but nothing for children who had other disabilities.     I remember the mother of a childhood friend fighting with the school board so her daughter–with severe hearing impairment–could attend regular classes.   (Her daughter is now a professor of chemistry.)    If they weren’t institutionalized,  disabled children were home-schooled, usually by tutors, like Helen Keller.

But now that federal law requires schools to educate all children, why would a parent choose homeschooling?  And why are the advantages–and challenges–of doing so?    Here are some things to think about, from someone who did it.

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The basis of a healthy social contract between individuals is reciprocity.  At root, individuals bond–as family members, friends, lovers–because they give each other pleasure.  The more pleasure–and the more equal the sharing–the closer the bond.

The game starts at birth.   Adults must start it, as they are the more competent partner (or should be.)  Given the average infant, the average advice on child-rearing results in a baby who soon realizes that people make him feel safe and comfortable and happy.  Within weeks, the baby is responding to this with signs of happiness as well as notices of “something’s wrong, fix it!”    Caring adults are then rewarded by the baby’s joy.  They like the smiles, the coos, the wiggly arms and legs, all the signals that the baby is happy and likes having them around.

Adults then intensify their attempts to get these happy reactions from the baby, repeating the ones that work–because they’re enjoying the baby just as the baby is enjoying them.    Before the average baby is a year old, he knows that adults take pleasure in him–some of the time–and can tell when he’s pleased an adult.   Average babies begin consciously seeking to please their adults at least some of the time–more if the adults are also playing fair, not demanding more than the baby can give.  (Adults have longer attention spans, and often want babies to interact longer than the baby can.)

This is the basis of healthy social motivation.

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A recent Commentary in the international science journal NATURE (11 December 2008, vol 456, p.702)  discussed the science and ethics of the use of cognitive-enhancing drugs by the healthy.   As the article pointed out, substances believed to help people control attention, remain alert when working at night or extra house, and learn faster/better are now in widespread off-label use–used by those who do not have the diagnoses for which these substances were developed.

Coercion–pressure to use these substances even if the individual doesn’t want to–is already being applied (for instance, by the Armed Forces for the use of certain stimulants, and by teachers who  believe a child will be less trouble in the classroom if put on Ritalin) and employers began to looking at the possibility of enhancing work performance with drugs some years ago.   Since coercion by an employer is one of the plot drivers in The Speed of Dark it seemed like a good topic for this blog.

What is “cognitive enhancement” and what kinds of issues should be considered when anyone (disabled or not) faces a decision about the use of pharmacological or any other method of “enhancement?

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