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Published: May 3, 2005 at 12:05 AM
By DAN OLMSTED
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.
--
This article is the fourth of seven in a series UPI published earlier this year.
--
The Age of Autism aims to be interactive with readers and will continue to take
heed of comment, criticism and suggestions. E-mail: dolmsted@upi.com
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