The Speed of Dark

Welcome to Guest Blogger Darcy Javanne Kramer!

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First, a quick introduction:  I am a counselor at the Disability Resource Center at Portland State University, the largest four-year public college in the state of Oregon.  Elizabeth asked me to guest blog about transition from high school to college for students on the spectrum, which I gladly accepted.

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You’ve probably heard of this movie.   If not, or if, having heard of it, you had reservations about it (I did), here’s the good news: it’s better than you think.  It’s an incredible, brilliant movie that shows Temple Grandin’s triumph over both the problems autism gave her, and the society that did not have a clue and did not believe autistic people had a future.   And it shows the value of her life’s work, her designs for livestock management.  Because of her, half the livestock facilities in the world–not just here–handle their stock more humanely.  And–(yes, there’s more) it shows how she thinks–because it is a visual medium, a movie can show the pictures she thinks with. Read the rest of this entry »

Sometimes I feel like jumping up and screaming “FINALLY!” at the research end of things.   This summer there have been several really good research reports, some mentioned in national media as well, on autism-spectrum issues.  But what I want to highlight tonight is the one that sparked the “FINALLY!” reaction.

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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.

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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Thirty years ago,  children with disabilities were not guaranteed education in public schools.    My state had residential schools in the state capital for deaf children and for blind children, but nothing for children who had other disabilities.     I remember the mother of a childhood friend fighting with the school board so her daughter–with severe hearing impairment–could attend regular classes.   (Her daughter is now a professor of chemistry.)    If they weren’t institutionalized,  disabled children were home-schooled, usually by tutors, like Helen Keller.

But now that federal law requires schools to educate all children, why would a parent choose homeschooling?  And why are the advantages–and challenges–of doing so?    Here are some things to think about, from someone who did it.

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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 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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