By Norm Roberts
Weston Roberts is nine years old. It’s been more than seven years since we realized he has autism. As his grandfather I follow the news on the subject with more than passing interest and am continually disappointed with the lack of progress in understanding the nature of the disease, its causes, and effective treatments.
Not that there hasn’t been any. We’ve seen real progress in Weston’s behavior and in his physical symptoms. He has gotten a lot of help from therapists, doctors willing to prescribe unconventional treatments, from his school who welcomed him into class and assigned a teacher’s aide to watch over him, and most of all from parents determined to leave no stone unturned in doing for Weston whatever they possibly can. He is a precious child and we treasure him. Still, Weston isn’t where we had dreamed he would be by now.
My disappointment is with public health officials and the mainstream medical community. They have been frustratingly slow to deal with this devastating disorder, and maddeningly oblivious to its likely causes, its connections with apparently related medical issues common among children with autism, even to acknowledge that the explosive increase observed over the last twenty years is real, not just the result of increased awareness, better diagnosis, or an expansion of definition to Autism Spectrum Disorder. Weston has classical autism and there are a lot of children like him. Seventy years ago it was vanishingly rare.
In 1943 Leo Kanner, a child psychiatrist at Johns Hopkins, published the first paper describing 11 children who had what seemed to be a common disturbance. He had never seen it before and was convinced no other psychiatrist had either. Kanner soon labeled the condition early infantile autism. He believed it was present from birth and, incredibly, that it was caused by bad parenting – cold, unfeeling mothers who didn’t give their babies the love and affection they needed early on. Kanner later rejected the refrigerator mother hypothesis but never came close to identifying the true cause. It is sometimes called Kanner’s disease but more commonly autism, reflecting the reality that it can be regressive with onset as late as age 3. It isn’t always present at birth.
Scientists are still trying to blame it on the parents, thinking it must be genetic based on the observation that autism in one sibling appears more likely to occur in another – especially among identical twins. It isn’t unheard of for pediatricians to ask mothers of children with autism if they are related to the child’s father. I can’t find any reference to research going back to earlier generations to see if it has happened before. If Kanner was right they wouldn’t find it. He thought he was seeing something new. A review of 19th and early 20th century medical literature would seem to bear him out. If it was there it went unreported. Autism’s features are distinct enough to expect it would have been described earlier. Nor have there been any current reports of adults with autism finding the disorder in their children.
An English researcher named Simon Baron-Cohen promotes a theory called assortative mating suggesting that people who are unusually analytical (engineers or computer programmers, geeks if you will) are more likely to marry these days. He would use that as at least a partial explanation for autism’s modern emergence. Professor Baron-Cohen doesn’t really offer any evidence to support his hypothesis and in its absence such a bizarre proposition amounts to offensive speculation.
Nevertheless the assumption that autism is genetic and exclusively behavioral in its nature continues to guide public policy in researching possible causes and treatments. Most public funding for autism research goes to brain and behavior or to genetics, reflecting a predisposition to regard autism as a psychiatric disease unrelated to the physical distress experienced by most children with autism, and a persistent belief that it is not caused by environmental triggers. This is absurd policy if the increase is real and these children are suffering from chemical poisoning as they appear to be. A few independent researchers are beginning to point that out.
CDC is currently sponsoring a study called SEED, for Study to Explore Early Development, involving some 2700 children with developmental disorders including autism. SEED will look at, among other things, overall medical history and risk factors to include interaction between genetic and environmental factors. CDC says it is the largest study of its kind to date. So far as I can tell it is the only government funded study of its kind to date. It is encouraging that they will look at all. Given the prevalence and disastrous consequences of autism it is disappointing that it has taken them so long. SEED doesn’t seem to have gotten much press. I googled the news for it and came up blank.
Many in the autism community (including this grandparent) are skeptical of the motivation behind all this. It appears to come from what can only be willful ignorance. Autism is an epidemic, pandemic actually. More cases are being reported because there are more children affected. CDC will say only that a real increase can’t be ruled out.
It would be easy to check. If it’s been here all along there should be a couple million adults among us with undiagnosed autism. Where are they? Why don’t these people want to look for them? And why don’t they acknowledge autism is a whole body disease affecting not just brain function and behavior but the immune system, sensitivity to pain and noise, and the digestive tract? CDC blandly reports that people with autism have medical costs that run about $4000-$6000 higher than those without autism. My son and daughter-in-law would say it’s higher than that and insurance won’t cover much of it because the treatments are “experimental”.
I don’t see how we can really address autism until we look at it clearly. We need our health care community to deal with this scourge seriously. So far it isn’t clear to me they are ready to do that.
Norm Roberts is a retired business analyst living in Plano, Texas.