Jan. 15, 2013 -- The idea that some children recover from autism remains controversial, but new research lends credibility to the notion.
The National Institutes of Health-funded study included children, teens, and young adults who received a diagnosis of autism early in life but moved off the autism spectrum as they grew older.
Recovered or Misdiagnosed?
In earlier work, longtime autism researcher Deborah Fein, PhD, and colleagues at the University of Connecticut concluded that as many as 1 in 5 kids on the autism spectrum can recover to the point where they are no longer considered autistic.
But skeptics have claimed that the children the researchers identified as "optimal outcome" -- a phrase Fein prefers to "recovered" -- were simply misdiagnosed or had a very mild form of autism early in life.
To address this criticism, Fein and colleagues had an expert in the diagnosis of autism review the early diagnostic reports of 34 people with a prior diagnosis of autism, along with those of 44 people with high-functioning autism, and 34 people who had never received a diagnosis of autism.
But the autism diagnosis was deleted from the reports along with any information that would give the diagnosis away, Fein says. And the reviewer had no knowledge of the current status of the children and young adults in the study.
Autism Recovery Possible, Researcher Says
She says the reviewer identified all 34 of the optimal-outcome participants as originally autistic, based on their early diagnostic records, and all 34 of the typically developing participants as non-autistic.
Compared to those in the high-functioning autism group, those in the optimal-outcome group did show fewer social deficits in early childhood, but they were just as likely to have problems communicating and just as likely to engage in repetitive behaviors -- two characteristic early signs of autism.
When the researchers examined the current status of the optimal-outcome participants, who ranged from 8 to 21 years old, they exhibited none of the typical signs of autism, including problems with language, face recognition, communication, and social interaction.
The study appears today in the Journal of Child Psychology and Psychiatry.
Behavioral Therapy May Make the Difference
Lisa Gilotty, PhD, of the National Institute of Mental Health, says it is increasingly clear that some autistic children do eventually move off the autism spectrum.
“We don’t yet know what percentage of children are capable of doing this, what interventions play a role, or if there is a biological reason for this,” she says.
Fein is a big proponent of very early intensive behavioral therapy, and she says kids who recover are more likely than those who don’t to have had a behavioral therapy known as applied behavioral analysis.
‘Like He Was on a Dimmer Switch’
Karen Siff Exkorn began the therapy with her son Jake immediately after he was diagnosed with autism at the age of 2.
She says Jake had hit all of his developmental milestones before the age of 17 months, but after that it was like he was on a dimmer switch.
“His behaviors just started fading away,” she says. “He stopped playing, and he no longer had any social interaction, and he no longer liked hugs. By his second birthday he had stopped speaking.”
She and her husband hired a team of therapists to help Jake relearn basic skills like making eye contact and sitting in a chair using the positive reinforcement, repetitive behavioral therapy.
“My husband and I learned it and so did the babysitter,” she says. "We pretty much lived this program with Jake 24/7.”
By the time Jake was 4, he showed no signs of autism. Now 16, she says he is a typical teenager with no autistic behaviors.
Earlier Detection, More Optimal Outcomes
Fein makes it clear that even with the best treatments, most children with autism will not move off the spectrum.
“Parents should not feel that they have done something wrong if their child does not have an optimal outcome,” she says. “Most kids will not move off the spectrum, even if they have the best treatments we know how to give. But they will progress.”
Exkorn says many kids who do recover and move off the autism spectrum still have other developmental problems, including ADHD.
Developmental pediatrician Andrew Adesman, MD, who has been practicing for 26 years, says he has seen many cases where children with an early autism diagnosis ended up developing normally.
Adesman is chief of developmental and behavioral pediatrics at the Steven & Alexandra Cohen Children’s Medical Center of New York in New Hyde Park.
“This concept of optimal outcome, where children lose the clinical features of autism, is very real to me,” he says.
He believes children who start out with higher IQs and less severe autism spectrum symptoms are those with the greatest chance of moving off the spectrum.
“I suspect that with the greater emphasis on early identification and treatment of children with autism spectrum disorder, the percentage of children with optimal outcomes will increase,” he says.