By Karen Weintraub
Until this week, autism researchers generally steered clear of the word “recovery.” If tests showed that someone diagnosed with autism no longer had symptoms, doctors assumed they never really had the condition in the first place.
Now, a new study confirms that some children who once had the communication difficulties, social challenges and repetitive behaviors of autism can reach a point where they are virtually indistinguishable from their more typical peers.
“For the parents of young kids this is not a likely outcome, but it’s a possibility,” said study author Deborah Fein, a professor of psychology and of pediatrics at the University of Connecticut.
The study, published in the February issue of The Journal of Child Psychiatry and Psychology, does not indicate what percentage of children are likely to recover from autism, though Fein said she thinks it is now a small minority of children.
For families with a relatively new autism diagnosis, the fact that recovery is possible offers hope at a time when many are overwhelmed with anxiety.
For families whose children are older and still have symptoms, though, it may suggest that this goal is now out of reach. Most of the children who are going to improve dramatically do so within the first few years of beginning intense behavioral therapy, Fein said.
The study didn’t detail why some children improve and others do not. But the new research does support the idea that early, intensive and well-done behavioral therapy is crucial, regardless of whether the child eventually loses an autism diagnosis. Still, parents shouldn’t feel guilty if their older child hasn’t lost the diagnosis, Fein said. Biology may determine which children grow out of autism and which don’t.
“I’ve seen hundreds, possibly thousands of kids who got excellent therapy, excellent parenting and they all made progress, but this is a minority that reached this stage,” Fein said about those who no longer met the criteria for autism. “If the parent has a child who did not reach this outcome, it doesn’t mean they did anything wrong.”
“It really fuels the urgency for early diagnosis and early intervention,” said Sally Ozonoff, professor-in-residence at the UC Davis MIND Institute, which specializes in autism research.
But entirely getting rid of autistic characteristics may not be the right goal for families, according to Ozonoff, and Michelle Dawson, an autism researcher at the University of Montreal who is also autistic.
Both Dawson and Ozonoff reject the notion that people will be better off if they are no longer autistic. Some autistic traits provide distinct advantages in adulthood, said Dawson, whose research has shown that most people with autism have average to well-above-average IQ’s.
Because successful outcomes were never seen as a possibility for a child with autism, there has been almost no research into what “success” might look like or how to get there.
Dawson said in an e-mail that even in Fein’s study, having any autistic trait is defined as “suboptimal.” “Even having atypical friends is suboptimal,” according to the study, Dawson said. “This should give anyone pause, with respect to both science and ethics.”
The study looked at three groups of people, ages 8 to 22: one group had developed typically, one group had autism and the third, dubbed the “optimal outcome” group, was made up of people once diagnosed with autism who no longer met the criteria.
Earlier studies have left doubts about whether children who recovered ever had autism in the first place. Fein and her colleagues took pains to confirm the validity of the initial diagnosis and the change. While participants in previous studies might have improved just a little – from being only slightly autistic to being mostly typical – the people in the “optimal outcome” group were shown to have changed substantially rather than incrementally.
In earlier research, Fein said she has found that the children most likely to change are those who show the fewest motor control problems in early childhood. Her 40 years of clinical experience, Fein said, leads her to believe that most children who are going to achieve “optimal outcomes” will show substantial progress by around age 8.
Autism varies significantly from person-to-person, which is why it is referred to as a “spectrum,” but it is defined by deficits in social interactions and communications, and by repetitive behaviors like rocking, arm flapping or obsessing over specific topics. Many people with autism also have physical problems, such as epilepsy, digestive issues, lack of coordination, and mood disorders like anxiety.
Fein’s study looked only at the three central characteristics; it’s possible, according to the research, that participants still had anxiety or other mood, attention or executive function issues even though they are no longer autistic.
In a related study, Fein and colleagues show that even people considered to have had an “optimal outcome” still perform worse than neurotypical peers on tests where they are required to generalize information.
Fein said she plans now to look at brain scans of people in the “optimal outcomes” group to see if their brains “normalized” when their behavior did, or somehow compensated for the autism.
Researchers will also now pay more attention to the recovery process, Ozonoff said, trying to figure out ways to help many more children improve or recover.
Ozonoff said she sees the new research as a paradigm-shifter for scientists who study autism. Researchers have always carefully avoided talking about “recovery” from autism, and even this week the word caught in her throat. Now, she said she looks forward to the day when she can “laugh and say ‘remember when we didn’t like to use the word recovery’?”
Karen Weintraub, a Cambridge-based health/science journalist, is the co-author of “The Autism Revolution.”