By DAN OLMSTED | May 3, 2005 at 12:05 AM
WASHINGTON, May 3 (UPI) — One of the great things about being a journalist in this day and age is how easy it is to interact with readers in a meaningful way.
In olden times, say 1980, there was the telephone, the letter to the editor, the occasional community forum, sometimes the angry subscriber at the front desk who made you think about slipping out the back, but that is nothing like the immediacy and depth the Internet and e-mail provide.
This new world was brought home when I began this series about autism. My purpose is to trace what scientists call its “natural history” — where autism first appeared, how it spread, whether it changed and what all of that might signify.
I invited feedback — “comment, criticism and suggestions” — and I got tons of it. One reader took me to task for describing the behavior of autistic children as “bizarre,” and clearly she is right. There is enough stigma based on difference in this society that adding to it is a bad thing. The point was autistic children behave in characteristic ways that makes them hard to miss, and that is what should have been said.
This reader also objected to my use of the word “ominous” in discussing the spread of autism to a wider segment of society in the 1940s. I disagree with her about that, because hard-core autism is awful, period. The rise of autism in the United States needs to be faced and fixed.
Most of the feedback — some quite lengthy — addressed the three questions at the heart of the issue:
–When did autism start, or was it always with us, and is it increasing?
–Why was it first diagnosed in the 1930s among children of an elite group in U.S. society — college-educated professionals?
–Is autism something children simply inherit, or is there an outside factor, and if so, what?
Those are the questions raised in the first three articles, and we will explore them in depth going forward, but I am turning over the remainder of this column to readers’ comments, edited only for length. These interactions make me more cautious, more curious, and, if nothing else, more considerate — and no, they do not make me want to sneak out the back door.
I think you have been badly informed about the nature of autism. I am sorry to be so blunt, but your articles reveal a serious lack of perspective of how autism plays itself out in families and in the lives of individuals.
As for why autism seems more prevalent today, one reason is: an autistic child born in the last 30 years is bound to be more frequently assaulted by noise and irritations like florescent lighting that can be inescapable; they are more likely to be exposed to overstimulating routines like being taken to day care at 7 a.m. 5 days a week. These things force more autistic coping behaviors to the fore and make the children seem more autistic.
The autism epidemic is a bogus construct that is kept alive by parents who love to whine and dramatize the pathos of their lives while demanding money from their governments. One might take note that the vast majority of these people are Caucasian and middle- to upper-class. Many of them are angry that their carefully planned-out lives have been disrupted by an autistic child or two and they are perfectly willing to exploit their children to get attention. I find it very disturbing to observe them in action.
I hope you will look carefully at what they are saying and that you will not write anything that will add fuel to the autism epidemic hysteria.
Autism is ancient. Look at Newton for example. Look at how Archimedes died — now that’s about as autistic as you can get. Putting concerns with geometry above concerns about the social order, he died when he reprimanded a Roman soldier for stepping on his circles in the sand.
Forget the recent assignment of the label autism, and look at the older myths. For severe regressive autism there was the changeling, a child that suddenly lost speech, the village idiot; for high-functioning autism/Asperger’s there was the eccentric genius, the asocial village blacksmith unmarried because he was unable to notice the advances of women.
Forget the words, look for the traits in history. The only advance in the term autism is understanding that Einstein and the village idiot had something in common. One condition covers both extremes.
I am the parent of a 15-year-old girl diagnosed with autism when she was 3. I have always been baffled about the community of experts who would maintain that autism has always been with us. They claim that they are just now so smart, that they are finally beginning to notice it. To the question, “Where are all these old autistics?” we are told that they were institutionalized.
I was brought up in the ’50s. I went to a parochial school with 50 children to a classroom. I remember seeing children with Down syndrome and I remember seeing children with epilepsy. I never saw anyone with autistic symptoms. I remember no stories about children who were “sent away” to institutions.
I have never read anything in old literature where a character was described, such that he or she might have been diagnosed as autistic. People love to say that Einstein was autistic or had autistic traits. I don’t buy it.
How many of the children diagnosed will marry? How many will have a satisfactory social life? How many will get a college or high school education? How many will have a successful career?
Talk to parents of children my daughter’s age. We diagnosed our children. We educated the doctors. They told us not to worry. They told us children develop at different rates. We knew there was something terribly wrong.
I have no idea what causes autism. Perhaps there is a strong genetic link. Until we investigate the clues right in front of our noses, we will not unlock the mystery of this disorder. We must recognize that it is here now, and it wasn’t here before.
I have been following with interest and frustration the recent media coverage of the so-called autism epidemic. Your approach to the issue — the origins of autism — is a little different, and I have enjoyed reading your pieces.
In your second installment, “Educated Guesses,” you wonder about the conceivable risk factors for autism among the college-educated men and women of the 1920s and early 1930s — specifically, the highly educated group of parents of Leo Kanner’s first autism subjects. I’d like to speculate a little.
At the same time, social and economic changes were making life harder for autistic people. There was less room for a reclusive scholar, a quiet farmer, an artisan of few words, or a secluded poet, for example. These Kanner parents were living during the rise of urban living, mass production on assembly lines, and the standardization of mandatory public education. All these forces combined to give heightened importance to the “social drive,” fitting in, getting along, and teamwork. It is no surprise to me that somebody decided to pathologize autism in the early 20th century.
The decade of the 1920s may have been the age of jazz, the age of sports, and the age of Prohibition, but I don’t think it was the age of autism. I think it is unlikely that some genetic mutation suddenly occurred then. I think that social and economic conditions are the cause of the autism “epidemic.”
But I’m just speculating.
It always amazes me how something that is so obvious to those of us who are genuinely knowledgeable about autism can utterly escape those that have a passing interest … like reporters.
Here is the most plausible explanation for the profile of the first families to endure the horrors of autism: The mercury-based preservative thimerosal was first introduced into vaccines in the 1930s. Kanner identified the first cases of autism in 1938, a condition he called so unique, nothing like it had ever been seen before.
The families most likely to fully vaccinate their children at the earliest possible age were those who were well-educated (especially in the medical profession) and had the means to obtain comprehensive medical care for their children.
Even Bruno Bettelheim, the autism-treatment pioneer (though now fully discredited for his theories) observed that the mothers of autistic children were especially dutiful in noting and acting upon all medical information they were given (however misguided).
To suggest that common genes somehow spawned the current autism epidemic is remarkably ignorant. Any ninth-grade biology student will tell you that genetics alone can’t create epidemics … they don’t mutate that fast. The children of these highly educated and well-meaning parents were the first victims of what later came to be the mercury-poisoning of 1.5 million children in the U.S. alone.
Please, before you go espousing your own speculative and uneducated theories, get the scientific facts on thimerosal.
One possible theory not mentioned is that the parents of the autistic children described by Kanner might themselves have been somewhere on the autistic spectrum but went unrecognized because they were farther along in their development than the children Kanner was studying. Most autistic individuals develop fluent speech over their lifespan. Autistic wiring confers many intellectual advantages, often in the area of analytical thinking.
Autistic people have been around for centuries; Kanner was just one of the first to describe autism in the clinical literature of modern psychology, and he just happened to be working within the first couple of decades of large-scale entry of women into higher education.
Check out the life of Henry Cavendish (he discovered hydrogen, and was lucky enough to be the richest man in England); Oliver Heaviside (you wouldn’t have your cell phone without him); Nikola Tesla (inventor of wireless, Marconi stole his thunder); Blind Tom Wiggins (piano-playing phenom of the 19th century, son of uneducated slaves).
Lastly, I urge you to reconsider your use of words like “bizarre” and “ominous” in describing autism and people on the autistic spectrum; they are sensationalistic and insulting! With all the growing awareness of autism these days, and the hysteria that has grown around its increased recognition, autistic citizens are being increasingly bombarded by this sort of florid verbiage.
“Autism” is not a “thing”; rather, “autistic” is a kind of people who should be discussed with respect.
I was in the room at a conference in Baltimore when a leading geneticist from Hopkins stood up from the audience to add that there was nothing in genetics that could possibly explain the epidemiological history of autism.
The question of why the frequency of incidents of neurological damage (not only autism but also narrower learning disabilities like dyslexia, or disabling conditions like Tourette’s) is growing faster than genetics can explain is one that is universally relevant. It is not just the parents of autistic children who will pay for this damage.
This epidemic will be paid for by anyone who pays taxes as departments of education and ultimately disability and rehabilitation become legally required to care for people who struggle to learn and care for themselves. It will be paid for by anyone living in an economy where a significant percentage of men are unable to do work requiring more than elementary education.
Moreover, while these challenged children are now objects of sympathetic interest, they may soon enough be seen as canaries in the coal mine. What will the numbers of affected people be in 10 years? Finding the environmental piece of the puzzle is an issue for everyone, not just those of us who are already caring for a disabled child.
As the saying now goes, genetic diseases do not present as epidemics. It is deeply mysterious to me, therefore, that there is not more open, public discussion of the possible suspects, and vigorous research to rule them out.