The Speed of Dark

When you have a child with disabilities–especially developmental disabilities, whether autism or something else–you want to do the absolute most for that child you can.    That child, you feel–or I felt–deserves–needs–a perfect parent.    That child, of all children, shouldn’t have to deal with parental imperfections–he has enough problems already.   He/she is so fragile, so vulnerable, that any mistakes parents make are likely to be the tipping point that makes it impossible for the child to have a happy life.

Then comes the day…you know the day.  The day you lose your temper.  The day you forget something vital.   The day you aren’t perfectly controlled, calm, supportive, firm enough and flexible enough,  diligent in getting through his/her therapies, the house isn’t clean enough, the vital paperwork goes missing.  That day.

Here’s the story of the day I contributed to stunting our son’s initiative.

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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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Whether someone’s autistic or not, being rigid and inflexible make life difficult for everyone else, and a constant stress for the rigid person…because life just does not cooperate.

Helping a child–or adult–or oneself–cope with inflexibility brings lifelong benefits.    Each individual is different, some more rigid than others, but starting early to build in small variations (not chaos)  into routines is one way to encourage flexibility.    Different methods may work for different people, but the unifying idea is to demonstrate that something new/different/nonroutine can be fun.

“Demonstration” is the operative word, because if children with a tendency to rigidity are around rigid adults–especially if routines and schedules and the One Right Way to Do Things is always around them, where would they learn flexibility?   They need to see other people making choices–choosing to change, to try things, and then enjoying it.   So parents need to check their own behavior.   Are they themselves rigid?    If not, do they talk about and make visible the choice-making process?

Giving choices early on allows an individual some autonomy and requires initiative (to make the choice) even if it’s the same choice.   Try giving three choices: A, B, and “other”.    We found that quite often we’d guessed wrong–our guesses (A and B) did not encompass our son’s first choice and made him seem more rigid than he was.  (Of course, then you have to figure out what “other” might be, and that does take time.  But the goal is worth it.)

As mentioned before, familiar routines are comforting, and also make order out of life’s chaos–there’s nothing wrong with familiar routines.  But to build flexibility, try having regular variation within the routine.  Have two routes to the grocery store, and (even if sure the child can’t understand yet) explain why you choose one over another.   When chores can be done a different way, or in a different order (some obviously can’t)  use the other methods.   Do the colored wash first one day, and the white wash first another day….and don’t just do it that way, point it out.

This may provoke concern–definitely will, with some–but by introducing small variations in routine activities, within the shelter of organizing routines, a little flexibility becomes routine as well…and thus less stressful.

Expanding this requires flexible thinking in the person doing the planning, as well as sensitivity to t he tolerance limits of the rigid person–and that includes trying to expand your own flexibility.    When someone is tired, sick, hungry, thirsty, too hot or too cold–this is not the time to push for more flexibility in other things.

It’s also important not to overvalue flexibility–the person who has no stability in their desires, who is suggestible and can be talked/pushed/lured into anything–or who can’t make decisions–is not really better off than the person who can’t stand it if one sock is not as white as the other.   They will both have problems in life–just different ones.     So while moderate flexibility allows for easier coping with life’s crises and smoother interaction with others,  none of us is required to suit someone else’s wishes and convenience all the time.

More on flexibility another time–this is not being a routine day at our household and I need to fix supper now, not half an hour from now.

A word of hope:  the same kid who, at six, could still not stand the noise and confusion of a typical birthday party, may be able to attend the holiday party at his job and later gleefully announce “We had Chinese food for free!”

There were a lot of years in between and a lot of work, but gradually, step by step, tolerance for noise and confusion and strangers led to where we are now:  he likes parties.  He likes parties here, he likes parties at friends’ houses, he likes parties at restaurants…parties with and without music (including music way too loud for me!)

True, he needed assistance in buying a present for the office party (parent conference with supervisor over what would be best), and some assistance in obtaining/wrapping/presenting it, but he did it, and he’s happy about it, and so are we.

I could grieve about all the parties he missed when he was little…but it seems more useful to be glad that he now thoroughly enjoys them.   The long-term goal trumps short-term disappointments.

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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Years ago I took a graduate school class in Animal Behavior.   The study of animal behavior had made great leaps forward in the decade before, after pioneer students of animal behavior learned how to analyze animal behavior in detail.   The study of human behavior lagged badly…it’s now catching up, but still bedeviled by the very assumptions we were taught to avoid when studying animal behavior.

All behavior, we were taught, is meaningful–it means something, it communicates something about the subject.  Probably not what you first think of, either.   For instance, most of us interpret behavior in terms of a critter’s conscious intent:  we think of a cow or a horse or a small child as “stubborn” when they don’t do what we want.  We may think they’re “trying to make me mad.”   In autistic terms, we fail to demonstrate a theory of mind–the understanding that reality, to the other person or animal, is not necessarily our reality.

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Humans all find routines comforting to some degree.    Infants and small children commonly like routines–they want the same food at the same time every day; they want to know what’s next and how long it will last.   Older children and adults build their own routines–it’s easy to get into a rut, walking to school by the same route, driving to work at the same time every day,  meeting friends at the same place on the same day every week for dinner or bridge or a run or a hike.   We put on our clothes in a logical order (instead of putting on jeans, then having to take them off to put on underwear.)   Life without routine is disorganized, and one of the things “SuperNanny” and various “organize your life” experts recommend is setting up routines to ensure that everything that needs to be done gets done as efficiently as possible.   So “routine” by itself is not bad.

Persons with autism are often described as having excessively rigid routines–truer of some autists than others, but the tendency is certainly there.    Children with autism do not like change in a familiar unless they initiate it (and they rarely do so).   The appearance of a substitute teacher…a change in the school schedule…the changes that come with school vacations…a parent taking a different route through a supermarket…someone in the family coming home late from work…any of these can trigger extreme distress.   This need for consistent routines is usually seen as a problem.

But it can also be a strength.   An autistic child readily learns a routine and will usually then stick to it.  First A, then B, then C…no steps will be skipped, and they’ll all be in the right order.   Moreover, if the family can set up useful routines and subroutines to use in emergency/change situations, the familiar routines will  help the child cope with change.   A familiar routine is comforting, calming, to everyone–all of us have some routine that helps us calm down.   Instead of fighting the child’s need to control his/her environment by running through a familiar routine,  use it–understand what that routine accomplishes.  Create routines that accomplish other long-term goals.

My agent reported that The Speed of Dark sold 80-something copies in Austin last week.  He wanted to know what I’d done (nothing–I was starting this blog.)

I suspect that one of the local colleges/universities is using it in a class.   If I knew who chose it for his/her class, I’d offer to come speak to the class if they were interested.

Autistic individuals have differences in sensory processing.   They may have perfect vision according to an eye chart…perfect hearing when tested with pure tone audiometry–and yet be unable to “see” and “hear” what others see and hear.   In addition, autistic individuals react to environmental inputs others tend to ignore, and do not react to those others find important.  Thus the autistic child’s near-universal intolerance of tags in the back of shirts, seams in socks,  “floaters” in orange juice, and inability to judge the speed of oncoming traffic when crossing the street.

One of my textbooks on autism dismissed the idea that sensory processing problems could be central to autism because the writer saw no way that these differences could result in the more obvious social and language deficits.    That person clearly had no experience in programming computers, where “garbage in, garbage out” is a common mantra.

If a person is not getting the same sensory information in, they will not experience the world the same–and will not behave the same.   The color blind person does not see that the traffic light is red–and does not stop unless its position warns him.   Normal social interaction rests on the senses–on our ability to extract information from our senses, assign meaning to it, and respond in a way our society approves.

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