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Thursday, May 05, 2005

The Age of Autism: Backward

By DAN OLMSTED

Washington, DC, May. 4 (UPI) -- When Leo Kanner first identified autism as a unique developmental disorder in 1943, he was certain it was present from birth.

"This is not, as in schizophrenic children or adults, a departure from an initially present relationship," Kanner wrote. "It is not a 'withdrawal' from formerly existing participation. There is from the start an extreme autistic aloneness."

Almost 30 years later, in a 1972 speech, Kanner was of the same mind: "I didn't find that withdrawal was a proper term because you withdrew from something where you were before. These children had never been there."

Not emphatic enough for you? Kanner declared these children were "pure-culture examples" -- as in a closely observed petri dish -- "of inborn autistic disturbances."

Certain is not a synonym for correct, however, and now there are signs Kanner was wrong -- or at least not totally persuasive -- about that. Re-evaluating his 11 case studies of children born from 1931 to 1938, there is ample reason to wonder whether some of them developed autism after a period of normal development.

Take Richard M., born in November 1937.

"I can't be sure just when he stopped the imitation of word sounds," his mother wrote when he was almost 3. "It seems that he has gone backward mentally gradually for the last two years."

Or Elaine C., born in February 1932.

"She took feedings well, stood up at 7 months and walked at less than a year. She could say four words at the end of her first year, but made no progress in linguistic development for the following four years."

Four words at the end of the first year is about right for normally developing babies. No words for the next four years, obviously, is not.

Both Elaine and Richard were "there" before age 1, it seems, then went backward -- they withdrew, to use the word Kanner would not.

The term for that is regression, and today children who at first develop normally but become autistic by 36 months are diagnosed with regressive autism. Yet few associate that sequence with any of Kanner's original cases, because he was so definite their autism was present from birth.

What difference would it make if Kanner used too broad a brush to paint every single case as innate? It would make a lot of difference, by raising the possibility that some factor triggered autism in these children after they were born, not before.

Earlier articles in this series tracked the natural history of autism. We looked at whether autism has always existed at a steady prevalence or, instead, began decisively among children born in the 1930s.

We found the "steady state" theory hard to reconcile with the relatively few cases of autistic-style behavior reported before then; we calculated that at today's rate there should have been 369,000 hard-to-miss full-syndrome autistics alive in the United States in 1930. Where were they?

We also pointed to a striking link among the first 10 parents -- they had college educations and many had advanced degrees -- but we concluded this link weakened when the first 100 parents were analyzed.

Implication: It is plausible some new factor triggered autism in those college-educated families in the 1930s, and by the 1940s it was spreading to a broader range of families.

If some of Kanner's original cases were not autistic-from-birth but regressive -- acquired autism syndrome, in effect -- that would fit with a "new trigger" theory.

Kanner was brilliantly right in identifying autism -- which, by the way, he described as "a behavior pattern not known to me or anyone else theretofore." Kanner literally wrote the book on child psychiatry: "Child Psychiatry," published in 1934.

Like anyone studying a puzzling new phenomenon, however -- consider some of the misbegotten theories about AIDS -- not all of Kanner's observations or inferences have proven absolutely correct.

For instance, Kanner wrote that in the whole group of parents, "there are very few really warmhearted fathers and mothers. For the most part, the parents, grandparents and collaterals are persons strongly preoccupied with abstractions of a scientific, literary or artistic nature, and limited in genuine interest in people."

Kanner wondered whether "this fact" caused their children's autism, but his hypothesis it was present from birth gave him pause.

"The question arises whether or to what extent this fact has contributed to the condition of the children. The children's aloneness from the beginning of life makes it difficult to attribute the whole picture exclusively to the type of early parental relations with our patients."

Hey -- so does this fact: Quite a few of those parents did not fit that cold unfeeling stereotype. Kanner individually described several: "a patient, even-tempered man ... a well-educated, kindly woman ... energetic and outgoing, fond of people and children." Another mother told him, "The thing that upsets me most is that I can't reach my baby." How unfeeling is that?

Kanner's gift for observation undercut his generalization, which since has been proven to have nothing to do with the risk of having an autistic child.

Trying to make sense of those first cases, we did the modern thing: We got a second opinion. We asked a pediatrician who has worked with dozens of autistic children and their families to read Kanner's original study. These were her main points:

--"I don't think he makes the case that they all were totally autistic from birth," she said. By the same token, given the limitations of the data reported in the case histories, we cannot be absolutely certain any were instances of regressive autism.

--Ironic, some of the children seem to have the milder Asperger's Disorder rather than classic "Kanner autism," which has come to signify the most severe cases.

--A number of these children had physical problems that should not be overlooked as possible clues to their developmental disorder. Those problems centered on food, digestion and illnesses that could suggest allergic reactions or a weakened immune system, the pediatrician pointed out.

--Donald T., the first patient Kanner saw in 1938, never had a normal appetite. "Eating has always been a problem with him," the father wrote. "Seeing children eating candy and ice cream has never been a temptation to him."

--"Following smallpox vaccination at 12 months," Richard M. "had an attack of diarrhea and fever from which he recovered in somewhat less than a week." This is the child whose mother recalled him going "backward" about that age.

--Barbara K. "nursed very poorly and was put on bottle after about a week. She quit taking any kind of nourishment at 3 months. She was tube-fed five times daily up to 1 year of age." Her eating eventually became normal.

--Herbert B. "vomited all food from birth through the third month," after which feeding progressed satisfactorily.

--John F.'s father said, "The main thing that worries me is the difficulty feeding. That is the essential thing, and second is the slowness in development. During the first days of life he did not take the breast satisfactorily. ... There is a long story of trying to get food down. We have tried everything under the sun."

Kanner noted that John had "frequent hospitalizations because of the feeding problem. No physical disorder was ever found, except the anterior fontanelle did not close until he was two-and-a-half. He suffered from repeated colds and otitis media (ear infections)."

What could these symptoms mean? Perhaps nothing, because babies tend to have all sorts of upsets, but the pediatrician said such illnesses and digestive ailments might increase a child's vulnerability to toxins by making them harder to eliminate.

In the reverse, they could signal if something was causing the child's autism, then it was disrupting their entire system.

It obviously is impossible to tell, but consider this: Today, the children diagnosed with the regressive kind of autism are usually the ones with the food allergies, digestive problems and long-running infections that suggest an immune system under siege and out of whack.

That is the kind of autism that now predominates. At first, autism at birth was much more frequent, but now regressive cases are several times more common, according to Bernard Rimland, a pioneer autism researcher.

Perhaps something did happen to some of Kanner's children after they were born in the 1930s -- and perhaps whatever that was is still happening.

--

This article is the fifth 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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