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Friday, April 29, 2005

The Age of Autism: 'Absolutely different'


Her name was Virginia.

"Virginia S., born Sept. 13, 1931, has resided at a state training school for the feebleminded since 1936, with the exception of one month in 1938, when she was paroled to a school for the deaf for 'educational opportunity.'"

So wrote Leo Kanner, world-renowned child psychiatrist at The Johns Hopkins University in Baltimore. He went on to point out Virginia was neither feebleminded nor deaf. She was autistic.

Virginia was, in fact, the oldest of the 11 children in Kanner's 1943 paper, "Autistic Disturbances of Affective Contact," which first named "autism" as a distinct and devastating disorder. Kanner said autistic children differed "markedly and uniquely" from anyone ever described. They were "something new."

Virginia -- no last name or home state was given -- was referred to Kanner after Dr. Esther Richards saw her several times at the training school.

"Virginia stands out from other children," Richards wrote Kanner, "because she is absolutely different from any of the others." She did not talk. She did not play with other children. She did picture puzzles by the hour. "All findings seem to be in the nature of a congenital abnormality which looks as if it were more of a personality abnormality than an organic defect."

In 1955 Kanner revisited his first 42 cases. The oldest autistic person at that point was 24 -- born in 1931 and presumably Virginia S.

Across the Atlantic, something remarkably similar was happening almost simultaneously.

A Viennese pediatrician named Hans Asperger also was identifying children he called autistic, though in a slightly milder form that came to be known as Asperger's Disorder. Of his four case studies, only one, Fritz V., is given a birth year: 1933. Two of the other children also appear to have been born in the 1930s, given their age when Asperger met them.

The fourth, Hellmuth L., was first seen "six years ago, at age 11," Asperger wrote in his 1944 paper. That means he was born around 1927, but Hellmuth is interesting for another reason: His case study appears to be the only one described by Kanner or Asperger whose autism clearly was due to organic causes.

"He had severe asphyxia (lack of oxygen) at birth and was resuscitated at length. Soon after birth he had convulsions. ... In Hellmuth's case there were clear indications that his autism was due to brain injury at birth."

Many autistic children are characterized as looking angelic. Hellmuth was "grotesque," Asperger said, perhaps because of his brain damage.

Asperger drew a "preliminary conclusion" that some organic problems create symptoms "closely similar to the picture presented by 'autistic personality disorder' of constitutional origin." That has been proven correct.

So, the only case study, by either Kanner or Asperger, of an autistic child clearly born before 1931, had a different cause: brain damage.

Here is the question: How many people born before 1931 fit the profile, not of Hellmuth but Virginia -- nothing apparently wrong with them except this bizarre and baffling set of behaviors?

That might sound arcane, but it is crucial: When and where classic "Kanner autism" began is key to tracking its roots and rise. That is the focus of this series.

Some experts on autism say many such people have been documented before the 1930s. One of the most-cited instances of apparent autism -- some say the first -- was Victor, the Wild Boy of Aveyron, who was discovered living in the woods in France in the late 1700s -- and who is profiled at feralchildren.com.

"There can be no doubt that Victor was autistic and fitted into Kanner's syndrome," wrote British psychiatrist Lorna Wing.

Other early possibilities were outlined in an intriguing e-mail message I received after the last article, from longtime autism researcher, Dr. Darold A. Treffert.

"You raise the question whether Kanner and Asperger were seeing a 'new disorder,' or were they simply very keen observers who, for the first time, provided a classic description of an until-then-unrecognized but existing disorder? I think the latter," Treffert wrote.

"In fact I think autistic disorder was part of Dr. J. Langdon Down's original 10 cases of what he called (regrettably) 'idiot savant,' now known as savant syndrome. The movie 'Rain Man' made autistic savants household terms."

Treffert is past president of the Wisconsin Medical Society and a psychiatrist at St. Agnes Hospital in Fond du Lac. He wrote the book "Extraordinary People: Understanding the Savant Syndrome." He directed me to a Web site about the phenomenon: savantsyndrome.com. There, his discussion of Down's cases reveals striking similarities to modern autism.

Down, best-known for having described Down syndrome, gave a lecture in 1887 to the London Medical Society, in which he described 10 patients as having remarkable gifts -- far too remarkable to consider them retarded -- but also "living in a world of their own." One boy "(referred) to himself in the third person," "lost speech," "self-contained and self-absorbed, caring not to be entertained other than (in) his own dream-land, and automatic and rhythmical movements."

"Those descriptions are so applicable to what we now call Autistic Disorder. ... Autism is not a new disorder," the summary concluded.

Nor is it increasing, according to what might be called the "steady state" theory of the autism universe. It was always thus, just not diagnosed. Those who believe instead in the "big bang" -- an initial explosion of autism in the 1930s that has been expanding ever since -- argue that scattered cases before then actually make their point.

The pre-1930s cases were few and far between, goes this argument, and might have resulted from organic triggers such as Hellmuth L.'s brain damage or congenital defects such as Fragile X Syndrome, which causes a small percentage of today's autism cases.

Or, even measles might be responsible. There is an early account of a child who, after getting measles, changed markedly and developed repetitive speech and other autistic behaviors. Measles is a known culprit in other cases. Some women who contract German measles while pregnant give birth to children with Congenital Rubella Syndrome and a significant percentage of those children are autistic.

When Wing said, "the history of autistic disorders stretches far back into the mists of time, long before Kanner's and Asperger's insights," it is unclear how well we can see through those mists. More pertinent, perhaps, would be knowing the number of Americans with autism who were alive on Sept. 12, 1931, the day before Virginia S. was born.

Today's autism rate is 30 to 40 out of every 10,000 children, according to several studies, including one in 2003 by the Centers for Disease Control and Prevention. Applying that rate to the U.S. population of 123 million in 1931 would mean at least 369,000 people were autistic.

That is an awful lot of people, but it is the number resulting from the steady state theory of autism. Cut that number by one or two orders of magnitude, just for the sake of argument, and you face the same issue.

Of course, in 1931 none of those people would have been diagnosed with "autistic disorder," but would not some percentage of those 369,000 -- the infants, children, teens and adults of 1931 -- ultimately have been called autistic instead of deaf, or feebleminded, or schizophrenic, or whatever they were originally labeled?

Like Virginia, they already stood out because they were "absolutely different from any of the others," and by 1943 Leo Kanner had defined their disorder and given it a name.

Something doesn't add up.


Next: "These children had never been there."


This article is the second of seven in a series UPI published earlier this year.


The Age of Autism aims to be interactive with readers and will take heed of comment, criticism and suggestions. E-mail: dolmsted@upi.com

Posted by Becca

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