The Speed of Dark

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.

When our son had his first full neuro evaluation, at about 30 months, we were told he was functioning on a 6 month-old level.    That was certainly true for some things, but not all (he was walking and running, for instance, which is not typical at 6 months.)   He had been slow to master going up and down even one low step and could not climb stairs except by crawling.   So though his gross motor skills were delayed, they weren’t 6 month skills–they were more like 15-18 month skills.   His fine-motor skills were more delayed than his gross motor (he was still not crossing midline with his hands; he had only a palmar grasp, not the pincer grasp he should have had) and his language and social skills were still more delayed (he had no words at all, but he did understand quite a few words.)   He had low muscle tone, and since he was large for his age, that made movement even more difficult (if you have weak muscles, it’s harder to control a larger, heavier body.)

Within the next six months,  he continued to develop–fast in some areas, slow in others.   He learned more words and showed the ability to generalize (that “window” meant all the windows in the house, and “door” meant all doors, for instance.)    He learned the alphabet and showed a very clear interest in learning to read–despite being unable to talk.   His cognitive awarenessl–in terms of being able to show that he knew the names of basic colors, household objects,  letters, numbers–was age-level or above, even though expressive language was far behind.    On the other hand, his spoken language consisted of a few very blurry syllables (buh and duh were the first) , barely understandable and not that useful.   He could not recognize objects or people in photographs, but could recognize very clear line drawings and the labels of foods he liked.   He did not watch television (would not watch it–seemed almost unable to see it.)

This last was an important aid in teaching:  I found that teachers and other adults assumed that every child could recognize objects in photographs and in cartoonish drawings, as well as on television (I was told many times “You should have him watch Sesame Street.”  I tried: he would not look at it.   When we realized that he could not integrate the rapidly moving dots into an overall picture–then it made sense.)     If the child did not respond “appropriately”, they then assumed the child didn’t know what the object was–not that the child could not see the object in the picture.

To map the limits of his ability to recognize a 2-dimensional image as being that of a 3-dimensional object–and to expand that ability–I started with  pictures of spoons and bowls…which one would he “get?”  From that, I  set up a sequence in which I drew a spoon while holding one and looking back and forth, and labeling both verbally (since I already knew that he knew the word spoon.)    When he “got it” that spoon-drawing meant spoon,  I did other drawings.  He had no trouble telling me from my husband from my mother…how?  What did he use to visually distinguish one from another?  Was it color?  Size?  Outline?  Smell?

Why this level of detail?  Because it helps.

Here’s one way.  Though by age six, our son was above age level in some cognitive areas (typical for an autistic child, he was advanced in math and early reading skills) he was still socially/emotionally very immature.    He was incapable of behaving like a mannerly six year old….he was more like a two-year-old.   But he could be a mannerly two-year-old.  As long as our demands fell within his developmental level–he could achieve success.

A well-behaved two-year-old is more pleasant to be around than a bratty, out of control, having melt-downs six year old…so, by meeting him where he really was, in that domain, we had a six-year-old who was increasingly perceived as polite, even though he was very, very immature.   He needed more quiet time; he needed shorter periods of intense work and more recovery time; he needed more assistance with transitions than most six year olds…but given that, he was clearly trying to be what he was expected to be.   Year by year, by setting the bar no higher than his developmental age in that domain–by insisting on good behavior at that developmental age but not demanding that he be older than he was–his social/emotional level increased steadily.

In other words, by understanding the real amount of disability–the real problems he had in picking up the visual and auditory cues that guide most of us in social interactions, and recognizing that his developmental delay was not “defiance” or “resistance” or any of the other labels commonly used,  we avoided many problems while still helping him make steady progress towards a healthy adult understanding of how to get along with other people.

This could not have happened without a clear understanding of where he was on the inside–without accepting that chronological age was a bad guide to what he could do, and working from where he was.  It was not done without many a struggle–there are struggles with neurotypical children as well–but now we have a young man in his twenties who’s managers at work praise his pleasant, cooperative, polite behavior.

Meanwhile, his development in areas less impaired went on at its own best rate:  reading, math, geography, music.

Behavior analysis of this type is more flexible (and more responsive to the child) than typical ABA programs–it’s more open-ended, less tied to shaping the child to do specific behaviors on cue, and more about finding out all possible avenues for interaction, while being open to alternative routes to the goal of an adult who is honest, reliable, kind, helpful, cooperative, and as far up the skills/independence scale as the rest of the disability allows.