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September 13, 2005
By DAN OLMSTED
Do parents know what they're talking about? That has turned out to be a key
question in the debate over autism and its possible causes and cures.
The most recent case in point: a study last month from the University of
Washington Autism Center that examined first-birthday videos of infants later
diagnosed with autism. Described as "the first objective evidence of regressive
autism," the study found marked differences in behavior between the first and
second birthdays in children later diagnosed as regressive cases -- in which an
initial period of normal development is followed by a loss of social and
communications skills.
Among other indicators, there was a clear decline in complex babbling and word
use between the first and second birthdays. Those children babbled and used
words much more frequently at age 1 than children later diagnosed with early,
non-regressive autism.
In addition, children with regressive autism had other impairments that didn't
show up at age 1, but were clearly visible a year later. By their second
birthdays, they were no longer pointing, responding to their names or looking at
other people -- all hallmarks of autism.
The study, published in the Archives of General Psychiatry, is interesting on
its own terms, in that it documents regression for the first time, more than 60
years after autism was first recognized. (The researchers said about a quarter
of autism cases are considered regressive.) Some previous studies have suggested
that parents simply missed early signs the child was different from birth.
"Once again, this study provides objective evidence that parents are good
reporters on what is happening with their children," said Geraldine Dawson,
director of the University of Washington Autism Center. "It underscores the
importance of professionals to listen to parents."
That is the larger significance of the study, because the current debate over
autism can be characterized, with only slight exaggeration, as a debate between
parents and professionals.
On one side are parents who say they have witnessed their children slip away
from them at some point in the first two years of life. On the other are
professionals who treat autism as a mostly genetic disorder present from birth.
That divide was captured in a recent New York Times front page headline: "On
Autism's Cause, It's Parents Vs. Research."
The idea that autism is always innate began with the very first cases. Leo
Kanner, the leading child psychiatrist of his day, made the first autism
diagnoses among 11 children born in the 1930s. He was emphatic that every one of
those children was autistic from birth, as evidenced by a lack of interaction
with parents; Kanner made a great deal of the children's general lack of an
anticipatory "shrug" or tensing when being picked up.
As outlined in a previous Age of Autism, a re-examination of those cases
suggests Kanner may have painted them with too broad a brush. Looking at a new
disorder that manifested so early in life, he might have interpreted all the
evidence as suggesting autism was, as he put it, "inborn." In that column, we
asked a pediatrician who treats autistic children to review those first cases,
and she told us she suspects several might, in fact, have been regressive.
In one of those cases, Kanner quoted the mother as saying the child lost touch
beginning at about age one, but Kanner, the professional, appeared to discount
that first-hand observation by the parent rather than adjust his hypothesis to
account for it.
The University of Washington study is careful to point out it drew no
conclusions about whether vaccines might have triggered autism in the regressive
cases; even mentioning that issue shows how relevant the study might be to the
debate over whether an environmental trigger -- and in particular a
mercury-based preservatives in vaccines -- was responsible for a huge increase
in autism diagnoses in the 1990s. The preservative was phased out of most
childhood vaccines beginning in 1999.
Some parents say their children began regressing after suffering bad reactions
to vaccines -- fever, fitfulness, prolonged high-pitched screaming and
sleeplessness. What's more, some say their child's autism improved -- even
disappeared -- after treatments designed to augment the body's ability to get
rid of heavy metals like mercury.
Last month, we found the very first child diagnosed with autism, who still lives
in the small Mississippi town where he was born in 1933. We learned Donald T.,
as Kanner identified him, had a life-threatening attack of juvenile arthritis in
1947, for which he was treated with gold salts. The arthritis cleared up -- and
his autistic symptoms improved -- in what his brother described as a "miraculous
response" to the medicine.
We couldn't find any writings by Kanner that mention this incident, although
Donald's family clearly made a connection between the treatment and improvement
in his autistic symptoms. Like the new University of Washington study, "it
underscores the importance of professionals to listen to parents."
If they did, perhaps we would know a lot more about autism.
This ongoing series on the roots and rise of autism welcomes reader comment.
E-mail:
dolmsted@upi.com
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