There are so many different characteristic behaviors of children on the autistic spectrum. It is a condition defined by an inability to predict the actions of others, and by challenges to social skills, communication and emotional and physical regulation. Every child is unique and represents a unique point on the spectrum. But "restless sleep", "toe walking" and a lack of eye contact (or "shared attention" as it is called), are common traits.
We spent the Friday morning session listening to Dr. Michael Chez. He introduced himself as being from Chicago, so he was already a made man in my book, and then when he said he had been a doctor at Children's Memorial Hospital there, (a place where I had memorably spent an uncomfortable semester once as a 4 year old diagnosed with Rheumatic Fever, back in the early '60's when this was a life-threatening disease), I was curious to hear him talk about autism from a medical perspective.
He told us that there are all types of autism, from low to high functioning, primary or secondary, regression or non-regression, involving sleep issues or gastrointestinal issues or not; there seems to be no single cause, and no single symptom. There is a lot of research being done looking for the genetic basis for autism, and he was fairly dismissive of the widespread myth that mercury in vaccines is a root cause. He is an expert in the field of epilepsy, and he told us that 10-30% of autistic children also develop seizures during their lifetime, often peaking in adolescence. And that 61% of autistic children have some kind of sleep abnormalities. He works a lot with EEG testing, looking at brain wave patterns and spikes, and has even had some success treating kids with valproic acid, which he claims has in many instances helped them to regulate and lead to improvements in communication and language.
My irrational and innate distrust of doctors and drugs and the medical establishment probably is too big a prejudice for me to overcome to be open to some of the things that Chez was prescribing. I can't imagine giving Diego valproic acid. Even the name sounds dangerous! But it was very informative for us to hear his scientific analysis.
Thanks Dr. Chez!
But by far the best, most informative and most entertaining speaker we saw at the conference was Peter Gerhardt, who is from New Jersey, went to Rutgers, looks a bit like David Crosby, and stumbled into a program 30 years ago that sent him on the path of working with teenagers and young adults on the autistic spectrum. So much attention, research and therapy is directed towards young toddlers and pre-schoolers, and there appear to be many myths out there about autistic adolescents and a common bias as to how any chance at real breakthrough progress with autistic kids basically ends at age 5. And, according to Peter, so much that seems to be standard operating procedure out there in the real world for these older kids is basically very limited support and a lack of emphasis on practical, real world skills training.
But Peter is one of those "keep-it-real" guys, with tremendous hands-on experience in the trenches. As he emphatically put it, he'd rather have a kid learn to travel independently, to use a public urinal, or shop at Wal-Mart, with a one swipe Visa card if he can't count money, than to name colors, shapes, or fill out a page of bog standard math problems on a laminated sheet invariably backed with velcro. He clearly loves what he does, and loves the kids in his charge, even the one who he told us hit him 90 times on the first day they met and started working together, and broke his nose twice in the first week!
Of course, he was undeterred, and as he said, he wants to talk about a kid's strengths, not his deficits. "What CAN you do?" is way more important to him that what you can't do! FIND A SOLUTION! He said that behavior changes should be socially relevant and contextual.
He reminded us that "There are 300 million people in America, so a 1 in a million occurrence actually happens to 300 people every day." He appears to be willing to take on all comers, and he feels there is no one for whom he cannot in some way, however small, help to achieve a better functioning, higher quality of life.
We were very touched by his stories of taking his kids out into the real world. How he would go out in advance to prepare the ground, and try to gain the cooperation of store owners or employees, and educate them away from their prejudices, to help him construct positive experiences for his kids in shopping, or eating out, or bowling, or whatever. His life sounded like a daily episode of Candid Camera or Punked, filled with drama and humor and unpredictability.
He made us think a lot about the future for Diego. We are so focused on his life right now, and his therapies, and our fervent wish that he might be ready to be included in a classroom of typically developing kids come his time for kindergarten. So we haven't thought much about the long term, what his life might be like as a teenager, and how the steps and choices we make now can help him, and us, to prepare for that eventuality. Hearing Peter talk made us think we are sometimes too protective of the little guy, and too sensitive of our own need not to place him in situations that could be embarrassing to us, or stigmatizing to him.
Peter told us a wonderful anecdote of a boy he took out to Wal-Mart for a shopping trip, who found the whole sensory experience too overwhelming, and gave up his activity to stop and stand in the center of the store and start rocking back and forth. Was he embarrassed by his actions? Was Peter? "Hell no", he said. He was sure the boy was looking at all of US, and saying to himself, "What is the matter with these people? Why aren't they rocking?"
Thank you Peter!
Even More Heroes, tomorrow!