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: firstname.lastname@example.org