Autism: For some children, recovery is possible.
Tuesday, March 26, 2013 at 10:13AM Feb. 20--When doctors diagnosed Kieran Rege with autism at age 4, they painted a bleak portrait of his future.
"We were told he's not going to get married. He will probably not have friends. He will always need additional support," said Kieran's mother, Jill Rege, of Palo Alto.
Undaunted, she and her husband tried every treatment they could find. Today, at age 15, Kieran has friends, is active in theater at Menlo Park's Mid-Peninsula High School and takes Caltrain by himself to school. And he no longer is diagnosed with a disorder once thought to last a lifetime.
Anecdotal reports of children like Kieran recovering from autism have been around for decades, even as autism diagnoses continue to rise. But a new clinical study from the University of Connecticut has removed much of the doubt that recovery from the affliction is a real phenomenon.
"This study will help researchers believe reports of families and clinicians who say that their child has recovered from autism," said psychologist Grace Gengoux, an autism specialist in the Department of Psychiatry and Behavioral Sciences at Stanford University.
Still, the University of Connecticut researchers say it remains a mystery why certain children recover and what treatments cured them.
Kieran's parents say their son began displaying many of the classic signs of autism at age 2. He had no social interaction and little meaningful speech. He was running in circles and walking on his
toes.
Because Kieran was more affectionate than most autistic children, his doctors did not diagnose him right away. But when he was 31/2, even before he was formally diagnosed, Kieran's parents began trying everything from scientifically documented treatments -- including speech therapy and intensive therapy aimed at extinguishing certain behaviors -- to unproven treatments such as vitamin B-12 shots and gluten- and casein-free diets.
"I was willing to crawl through glass for a 1 percent improvement," his mother said.
Within two years, she said, things started to turn around. "It wasn't rapid. It was hard work. It was expensive. But in our case, it paid off."
Kieran's IQ, first tested at age 4, jumped from 80 to 130 by age 8. The median IQ for the general population is 100.
His father, Ojas Rege, held guarded optimism during Kieran's long recovery. "You don't know if those signs you're seeing are just something temporary," he said.
The moment he first truly knew his son's recovery was real came when Kieran starred in a sixth-grade school play about the Dalai Lama. "Just six years before, I didn't know if my son would ever talk," he said. "At that point I thought, 'If he can come this far, we can give him his life back.'"
Kieran's parents say his special diet, medical interventions to support his immune system and occupational and speech therapy were the most effective treatments. And they talk openly with him about his journey from autistic child to the sociable, confident teenager he is today.
Kieran, who has two brothers, preferred not to be interviewed for this story. But according to Jill Rege, he embraces his journey and "thinks it's important to let people know that kids can recover."
There are no solid numbers showing what percentage of children diagnosed with autism eventually lose that diagnosis. But the idea that autistic children could recover began to gain traction in 1987 when UCLA psychology professor Ivar Lovaas said he saw a 47 percent recovery rate using intensive behavioral therapy. Many researchers, however, questioned whether some of the children in that and other studies truly had autism in the first place.
The new study, published in the Journal of Child Psychology and Psychiatry, has put these questions to rest, autism experts say.
For the study, a team of psychiatrists led by Deborah Fein of the University of Connecticut recruited 34 people who had been diagnosed before age 5 and had since lost their diagnosis according to the team's extensive interviews and behavioral observations. The team also solicited independent verification of the children's initial diagnoses.
Fein is quick to caution that the overwhelming majority of children with autism will not recover. "I've seen hundreds and hundreds of kids who got great therapy and excellent parenting," she said. "They all made progress, but very few of them reached that stage."
In general, she added, "it's very hard to predict who is going to respond rapidly to intervention."
Another unknown is how recovery comes about. Most families try several therapies, often several at once, making it difficult to tease out which are most important for producing optimal outcomes.
Like the Reges, Kim Rice, of Pleasanton, tried almost every intervention offered to her son Sammy, who at age 2 was diagnosed with a mild form of autism.
Rice began immediately with the interventions recommended by Sammy's doctors, including behavioral, speech and occupational therapy. But when Rice heard of the potential link between autism and digestive disorders, she systematically removed foods from his diet to assess their effect on his health.
Rice found that Sammy kept improving the more she eliminated sugar and gluten from his meals. And within six months, Sammy's therapists said he was hard to distinguish from a typical child.
Now 61/2, Sammy is in a mainstream class without an aide. He plays soccer, chess, tennis and piano.
Both Rice and Rege stressed the importance of pushing hard with all of the treatment tools available.
"It's like a symphony," Rege said. "You can't take any one piece out and have it work the same."
