The Speed of Dark

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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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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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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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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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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