New UW study documents autistic regression

By JULIE DAVIDOW
SEATTLE POST-INTELLIGENCER REPORTER

Just before his first birthday, Marilyn Filley took her son, Damien, to Bellevue Square to buy some shoes. The gregarious toddler waved and smiled at everyone he saw.

"I was kind of embarrassed," Filley said. "I said, He thinks he's a celebrity."

A few months later, he stopped waving altogether.

Damien's other burgeoning efforts to communicate receded as well. He started avoiding eye contact. "Ma ma ma ma ma" was replaced by a string of incomprehensible noises. During a later trip to the mall, he appeared not to notice other shoppers and concentrated instead on twirling his wrists around.

The boy with blond curls who once danced to his dad's funky guitar riffs was drifting away.

"It didn't look like he was exploring his world anymore," Filley said.

An estimated 20 percent of autistic children follow the same regressive pattern as Damien, losing skills they'd acquired as seemingly normal babies. By contrast, children with early onset autism (the majority of cases) typically haven't made progress in key areas of development by their first birthdays.

Experts have recognized autistic regression for at least a decade, but they've previously relied on parents' recollections of a child's backslide.

Now, a new study from the University of Washington documents regression using videotapes of children's behavior during their first and second birthday parties.

"We were pretty sure there was a phenomenon of regression, but this (study) documents it ... in a much more objective way," said Sally Ozonoff, an autism researcher at the MIND Institute at the University of California-Davis.

Researchers reviewed homemade videotapes and talked to the parents of 56 children: 15 with regression, 21 with early onset and 20 children without autism.

On their first birthday, the children later diagnosed with autism had reached the same developmental milestones as those never diagnosed. They babbled in long strings of sounds, used single words, pointed out objects and people and responded to their names.

By their second birthdays, the same children looked very different when compared with their peers without autism.

"We found that what parents have been telling us all along was true," said Geraldine Dawson, a psychologist and director of the University of Washington Autism Center. Dawson is the lead author of the study, which appears in this month's issue of the Archives of General Psychiatry.

The study also found that children with regression had difficulty sleeping, eating and being soothed during their first year. Those symptoms could be precursors of autism, said Dawson.

In a surprising turn, children with autistic regression were actually using more complex babbling, words and pointing than children who were not later diagnosed with autism.

"That was an unexpected finding and we don't know what to make of it," Dawson said.

It remains unclear if autistic regression is a biologically distinct form of autism.

And, like all types of disorders on the autism spectrum, no one knows yet what causes regression.

The study comes as parents, public health officials and physicians continue to debate whether thimerosal, a mercury-based preservative used in vaccines since the 1930s, contributed to the rapidly rising rates of autism seen in the past decade.

Between 1994 and 2003, the number of children with autism enrolled in special education programs nationwide increased from 22,664 to 141,022, according to the Centers for Disease Control and Prevention.

Some trace the steep upturn to more children being diagnosed.

But many parents believe their children were developing normally until receiving multiple vaccines as toddlers.

Pharmaceutical companies stopped producing most childhood vaccines with thimerosal in 2001. Only some influenza doses are still manufactured with a trace amount of the preservative.

A number of studies, including a report from the Institute of Medicine, have failed to find a link between autism and thimerosal.

The long-simmering controversy heated up this summer after an article written by Robert F. Kennedy Jr. appeared in the online magazine Salon and Rolling Stone magazine. Kennedy claimed that federal health officials attempted to conceal initial findings implicating thimerosal in the rising number of autism cases.

Last month, public health officials and scientists held a news conference to reinforce the importance of vaccinations and reiterated that there's no evidence of thimerosal causing autism.

Dawson declined to comment on the debate, pointing out that her study does not address the source of autism regression.

"Until we really understand what causes autism, I think we need to fully investigate all possibilities," Dawson said.

She added that if a genetic distinction between early and late onset autism is discovered, it could eventually help researchers pinpoint potential environmental triggers.

"That's still something we're trying to understand and sort out -- the degree to which genetics play a role and the environment interacts with genetics," Dawson said.

For Filley and her husband, Daniel Pitt, it seems Damien was snatched away before their eyes.

"We get a glimpse of our children's personality and we get a glimpse of what could be and then all of the sudden it's gone," said Pitt, a computer programmer for U.S. Customs and Border Protection.

Filley quit her job as a high school math teacher to care for Damien after his diagnosis.

The West Seattle couple don't know for sure what happened to Damien. But they suspect vaccines and other environmental factors played a role.

"He wasn't locked into this pattern of regression," Filley said.

AUTISM RESOURCES

• University of Washington Autism Center: depts.washington.edu/uwautism
  
  
• Autism Society of America: www.autism-society.org
  
  
• FEAT (Families for Effective Treatment of Autism) of Washington: featwa.org

P-I reporter Julie Davidow can be reached at 206-448-8180 or juliedavidow@seattlepi.com.

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