The Speed of Dark

One of the things people sometimes complain of with persons on the spectrum is their “rigidity” and their strict interpretation of,  and adherence to, rules.   Rules they’ve internalized, that is.  But the flip side of “rigidity” is “reliability”–a trait prized by employers.    I was strongly reminded of that today, when our son left me an email (at 7:30 am, that I didn’t see until much later) that he was going out with the man who takes him to interview for other jobs–and I knew he needed to be back in the afternoon to work a shift at his current job.

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Today I gave a presentation on The Speed of Dark over the internet to a group at Howard Community College in Maryland–while sitting on a comfortable couch in Texas.  Technology has advanced to this point, and I wanted to try it–besides, I knew I would not be able to travel to Maryland in person in the time-frame they wanted.

What fascinated me, besides playing with technology I didn’t know, was the degree to which this particular setup messes with sensory input.   I had a light-bulb moment when I realized that the audio breakup (just enough of one) and the blurriness of the faces looking back at me–blurry enough that I could not see any of the usual cues of facial movement–and the delay between when I said something and when they saw/heard me say it–all made my experience more autistic than I’d expected.   I was having to put way more energy and concentration into figuring out their reactions, and what they were saying than usual.

The organizer sent email telling me that discussion went on in the hall after I “left”, which is a good sign.   I hope it was as valuable for them as it was for me.

When an autistic child, on the first day in a special needs school, gets upset and crawls out a third floor window and won’t come in, you hope for someone like this Thai fireman.

Some points to consider:  the boy’s mother (not the teachers) knew that his favorite superhero was  Spiderman.   (When in doubt about what to do with an autistic child in some situation, ask the parents–they really do know more about that child than anyone else.)   Mr. Somchai, the fireman, had the costume and clearly didn’t worry about the possibility that some adults might find a fireman in a Spiderman costume a little…silly.

Sometimes, working with children with autism, we need to be willing to risk our dignity (one of the hardest things for adults to give up–we worked so hard to get it!)    But to make that contact–to make the social, human linkage work–it’s worth the risk.

In another venue someone asked if anyone else’s child on the autism spectrum hated to hear their mother sing.

My answer was yes: when our son was pre-verbal, he didn’t much like singing at all (with the exception of a lullaby I’d made up for him early on) but he did like music…until the 18 months when he didn’t.   For about two years I was choir director for a very small church’s very small choir, and I could not have him in the church while we rehearsed–he’d scream the whole time.

Once he began to talk (a process that took years to achieve) he complained about singing.  He liked music–he liked to have me play the piano, and began playing himself very early–but singing, especially in groups, seemed almost to hurt him.   (His early ability on the piano, combined with being nonverbal, made us consider if he might be a musical savant.  Not many preschoolers will start playing along with very complex difficult classical music.)

Though he gradually came to accept some vocal music, with a single (very good) singer,  things changed again for an 18 month period.   Suddenly (as in, within one week) he could not stand any music at all, even music he had enjoyed before.   Music in the mall, music in a restaurant, music on the radio or TV–none of it.   His language  at this stage was what is called “right-brain”–the way people speak who have had damage to their left-brain auditory processor,  the main language center (Broca’s area.)  Stilted and downright peculiar syntax, little emotional expression, etc.    And music is processed (for most people) mostly in the right-brain auditory processor.  Were the two interfering when both words and music came in together?

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This was originally a post over at my LiveJournal, but generated so many comments that I thought it might be of even more interest here.  I copied & pasted, which seems to have preserved the LJ font size (and I haven’t a clue what to do about it…or why, when I posted this and then looked at it, only one paragraph is “that” size…)  Over there (for anyone who wants to go look and read the comments) the title is Language and Autism.   I have invited the people commenting there to consider coming here and continuing the discussion.

Our son did not learn to talk early, and for years after he said his first word (many years) his syntax was odd enough to make his speech barely intelligible to most people.   Though it has improved a lot, he still gets “tangled’ sometimes, and often “mazes” (repeating parts of a sentence several times.)   It’s clear to me that he’s constructing the sentences in chunks, and has to repeat every chunk to get the whole thing out at the end (like those songs where you have to repeat a key part of previous verses–Old MacDonald’s Farm, for instance.)

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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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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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