The Speed of Dark

October 5  (today as I write this; I may not finish it by midnight) is the 21st anniversary of my mother’s death, so naturally I’m remembering details of that day.

One of the memories is of someone who arrived about half an hour after she died–unaware of that fact–to visit her.  When I told this woman, she was of course shocked, and then blurted out the least suitable thing she could have said:  “You should know that although everyone in town thinks you’re a bad mother, I think you’re doing the best you can.”  That would be rude (and unanswerable) any time, but right after my mother died?   I was speechless with shock.  She went on to detail why people thought I was a bad mother (my kid was autistic: proof enough, 25+ years ago, that I was a bad mother, but she was full of specific things I was supposed to have done or not done.)

This is definitely something not to say to parents of disabled children.

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A friend from the area emailed me today to tell me that I had wrongly reported the details about the woman in Irving who killed her two young autistic children.  Her husband is alive; she is not a widow.

I didn’t bookmark the other sources of information I’d found, so now (of course) I can’t find them, to see where they got theirs.  My friend thought I’d confused two different tragedies–another killing of a child by a mother occurred not that far away, with different circumstances.  Whether I conflated stories about two different killings, or the sources I read had already done that, it’s still a mistake, and I failed to check deeply enough.

So death of a spouse was not part of the problem.

I apologize for sloppy fact-checking.

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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Uneven development across various cognitive domains is more common than most people realize, but people with autism usually show extreme unevenness.    Anyone working with autistic children needs to be aware of these extremes–and mapping developmental levels in each domain can help target interventions to that particular child’s actual needs.    These interventions should not be aimed at raising the child’s gaps to equal his talents–or stifling the talents to the level of the gaps.  Instead, the goal should be to scaffold progress in each domain from where the child actually is, at the best rate that the child can manage in each.

I learned this first as a tutor, coming in to rescue a child who had started failing in a subject or had some other problem.   To do my job, I needed to find out what the child knew, what the child thought he/she knew, and what had gone wrong–as fast as possible and while building a working relationship with that child.

How do you approach this problem?   It starts with careful, precise observation of the child’s current behaviors in each domain.  Big sheets of graph paper help both the mapping and charting progress.   An ordinary “baby book” that gives general information about normal development allows parents to do at least a rough approximation themselves.

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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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When our son was little, he was considered “low-functioning” because he was nonverbal and tested severely delayed on just about all developmental measures.

A friend’s son was considered “high-functioning” because he was highly verbal and had a high IQ.

The story of how verbal ability became a marker for “high-functioning” in autism is grist for another post, but the implications, for both verbal (Asperger’s) and nonverbal (classic autism) varieties of spectrum disorders is today’s topic. There’s a long history in our educational system of assuming that IQ measures “global” intelligence and thus determines what can be expected of a given child in every aspect of their lives (other than, maybe, sport.) The kid with a high IQ is expected to make A in everything; the kid with a low IQ is expected to struggle in everything.

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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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