WSJournal. Who Can Outgrow or Recover From Autism
A New Study Sparks Debate About Early Diagnosis and Calls for Further Research Into Why Some Improve
Jake Exkorn, playing soccer at camp in Maine, was diagnosed with autism at age 2, but by 4, he no longer had it, his mother says.
Evidence is growing for a notion long observed by doctors and parents: Some children with autism appear to grow out of their symptoms and recover fully.
The reasons aren't entirely clear, but a recent study adds to the body of scientific work suggesting some autistic people get better. Led by a team from the University of Connecticut, researchers last week reported that they had identified 34 people who had all been diagnosed with autism by age 5 but years later were indistinguishable from peers on language, socialization and communication skills.
The individuals, ranging from 8 to 21 years old, had originally been diagnosed by autism specialists or other trained doctors.
The work "provides convincing evidence there is a group of people who certainly have all of the symptoms of an autism-spectrum disorder when they're young, who look like they have no symptoms later," said Thomas Insel, head of the National Institute of Mental Health, which funded the work. Dr. Insel wasn't involved in the study.
For years, clinicians and parents have described patients and loved ones whose autism symptoms seem to disappear completely. But these individuals haven't been closely studied, making it hard to determine whether they had autism in the first place or were misdiagnosed. The possibility of recovery is spurring interest in figuring out who might get better and why.
Deborah Fein, a professor of psychology and pediatrics at the University of Connecticut, and her colleagues decided several years ago to examine how children with autism fare over time, with particular interest in those who achieved what they called an "optimal outcome." In their first study on the topic, published in 2007, they screened children at age 2 and again at 4. Of the 73 toddlers who were initially diagnosed with an autism-spectrum disorder, 13 of them, or 18%, no longer qualified for the diagnosis at age 4.
Autism diagnoses have climbed sharply for years, with 1 in 88 U.S. children now thought to have an autism-related disorder, according to the Centers for Disease Control and Prevention.
Though experts encourage diagnosing children as early as possible, with some saying that 1-year-olds can be identified as being at high risk for autism-related conditions, they caution that early diagnosis is challenging and some children may be mislabeled.
In the latest work, published Jan. 15 in the Journal of Child Psychology and Psychiatry, Dr. Fein said the researchers sought to exclude children in whom the original diagnosis was questionable. But they didn't examine in this study why they seemed to get better.
"It's now apparent that some have a very good prognosis," said the NIMH's Dr. Insel. "The problem is we don't know how to identify that group."
Experts speculate that a combination of early, high-quality therapy and biological and genetic factors are likely responsible.
Karen Siff Exkorn said her son Jake, who was diagnosed with a "classic case" of autism at 2 years old, made slow but steady progress with a combination of 40 hours a week of behavioral treatment, as well as speech and occupational therapy. When he was 4, the specialist told her Jake no longer had autism.
"That news was as shocking to me as when he was diagnosed," said Ms. Exkorn, a management consultant in Sparkill, N.Y. "We didn't even know that recovery was a possibility."
Now 16, Jake attends a regular high school, has many friends, plays on the school football team and was voted team captain at sports camp last summer, she said.
Dr. Fein and her colleagues are now analyzing data to see if there is a link between a certain type of therapy and an optimal outcome, and will be examining brain scans of children initially diagnosed with autism to see if they became structurally the same as typically developing children.
Based on previous studies, Dr. Fein estimates 10% to 20% of children who were diagnosed with autism may achieve optimal outcomes.
Some experts caution that even people who no longer meet diagnostic criteria for autism may have subtle, residual idiosyncrasies.
Fred Volkmar, director of the Child Study Center at the Yale University School of Medicine, who wasn't involved in the recent study, described one former patient who has a master's degree, goes to work and lives on his own, but every night he eats the same meal, canned fish, reads on the computer about software and then goes to bed.
In many ways he could be considered as having an optimal outcome, said Dr. Volkmar. At the same time, the man wants to have a girlfriend but doesn't know how to talk about subjects outside of his one narrow interest, and he serves canned fish to anyone he has over.
