The Speed of Dark

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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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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When our son was just beginning to be verbal, and able to say words with a consonant on each end,  one of his therapists suggested we introduce him to rhyming words as a way of training his ear and his speech…extending the consonants he could say,  and so on.

This certainly helped, and he began to try out combinations himself (which was good) except for one little problem.   If you start rhyming one-syllable words in English…starting from harmless familiar words like for instance “bit” and “pit” and “sit”….you end up with words that are considered inappropriate for small children to say.   The child may never have heard those words, the ones that rhyme with “sit” and “bird” and so on, and have no idea what they mean…but if your larger-than-average, older-than-average-when-learning-to-talk autistic child says them,  social disapproval rains down all over the scene.   And autistic kids don’t need any more social disapproval than they get already.

So the day came when our bright-eyed little guy very proudly (and it was an accomplishment–he had just managed the /sh/ sound the week before)  went through his “–it” words and added “sh*t.”

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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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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.