Mysteries of the Mind: For one mom, early intervention reversed son's autism
October 7, 2013 8:00 AM
Special to the Post-Gazette
Kristina Korch and her son, Rocco DeCarlo, 4.
By Mark Roth Pittsburgh Post-Gazette
Kristina Korch suspected there might be problems with her son, Rocco, from the time he was an infant. He didn't like being held, he didn't point to things or wave, and he would bang his head repeatedly on the door or his bed.
Still, it wasn't until he was screened at the age of 1 that she got an official diagnosis.
A psychologist at the Autism Center of Excellence at the University of California, San Diego "sat me down in a room and said he was at risk for moderate to severe autism. I pretty much lost it at that point." As a registered nurse, Ms. Korch "kind of knew that there was something off, but I was hoping they would tell me otherwise."
Three months later, Rocco began intensive one-on-one therapy that later was continued at a special school in the San Diego area, and remarkably, by the age of 3, nearly of all of his autism symptoms had disappeared.
Rocco is 4 now, and his mother said his journey "has been amazing. We go into a grocery store, and he's more social than other kids. Because [the therapists] worked with him so much, he says to other kids, 'Hi my name is Rocco. What is your name?' He loves school, and before he couldn't even sit in a chair."
The Point Loma, Calif., woman's story is unusual, but not unprecedented.
A 2008 survey of the scientific literature reported that between 3 percent and 25 percent of children diagnosed with autism eventually recover, and a study this year at the University of Connecticut rigorously tested 34 children who had been diagnosed with autism as toddlers and are now largely free of symptoms.
Rocco's story is typical in one other way, though. Most experts say that the earlier autistic children can begin therapy, the more progress they will make.
One of the best validated therapy techniques is the Early Start Denver Model, developed by Sally Rogers, now at the University of California, Davis, and Geraldine Dawson, who recently left her post as chief science officer at Autism Speaks and is now at Duke University.
In a 2009 study of their model, which features intensive one-on-one therapy in a naturalistic setting several hours a week, children in that group showed significantly greater gains in language and thinking ability over a two-year period than autistic children in a control group. In a follow-up study last year, researchers found the Early Start group also showed more brain activation when viewing faces -- a sign of responding to social cues -- while the control group showed more brain activity when viewing objects.
In an interview earlier this year, Ms. Rogers said the key to their approach is providing therapy in everyday settings the children would already be involved in.
In older behavioral therapy, she said, "if you wanted to teach the child the names of objects, you would figure out what that child is motivated for -- food, drinks -- and you'd put out a shoe and say 'Where's shoe?' and you'd give them a treat when they touched the shoe."
In the Early Start approach, "kids come in to therapy every day and when they take off their shoes, I would say, 'Where's that foot?' or 'Give me shoe?' " And at the end of the session I would say, 'Get Jason's sock; get Sally's shoe.'
"So now it's contextual. It's built into the way you use shoes and socks, and Mom is watching so she learns this is what we do. It's not repeated, it's not drilled. The reinforcement is inherent in the activity -- at the end, the child wants to leave and the reinforcement [for finding a shoe or sock] is getting to leave therapy."
The researcher said that most young children with autism "come in with an IQ that is way below normal, and that means that they're at risk of having an intellectual disability." The Early Start therapy has given children a mean IQ point gain of 18 points over two years, she said, "but they're still significantly behind their peers."
Importantly, though, by the time children in the original Early Start group reached age 7, their mean IQ was 95, only five points below normal.
Autism is not just about cognitive deficits, though. It is also about what children pay attention to.
An infant will notice everything -- a wet diaper, sounds, a face looming in his field of vision. But in typical infants, signals from people are more important to them than other stimuli.
"We know that infants with autism also attend to people," she said, "but the weight that people carry has a lower value." In Early Start therapy, "we're trying to get the signal up, to make sure the things they are paying attention to are social learning -- this is why I'm opposed to computer learning for little kids with autism -- so that the things they're interested in are part of people, and over time, the activities with people carry more weight."
Her description resonated with Ms. Korch.
When Rocco was a baby, he was much more interested in playing with the blinds on the door than with toys, she said. And she was embarrassed to take him to friends' homes, because he would find his way to the bathroom so he could repeatedly flush the toilet and watch the water drain out.
His therapy got rid of those habits, she said, but the change didn't come instantly.
One of the first things his therapists taught him was to stop going to the door and instead say, "Go see mama."
In the first few at-home sessions, he repeated that phrase 50 times in three hours, she said. Gradually, though, he stopped asking to see her and began to look forward to playing with the therapists.
When she took Rocco back to the autism center when he was 3, "I actually was horrified to go back in because I was afraid he would get a diagnosis, even though, because of the therapy, he was like a whole different kid."
But his test scores showed he had made a huge leap forward, and the psychologist "basically said, 'I'm shocked to say this, but I don't see any signs of him being on the spectrum.' "
Rocco's chance at early therapy was the result of a remarkable screening program in the San Diego area set up by autism researcher Karen Pierce of the University of California, San Diego. At 170 pediatricians' offices in the region, every child who comes in for a 1-year-old well baby checkup is screened for autism symptoms, and if the scores are in the autism range, the child is referred to the Autism Center of Excellence.
Not every family follows through, the San Diego researcher said, but many do, and it enables them to get therapy at 12 to 18 months. Having such a widespread screening program is important, she said, because "if autism was flagrant at 12 months, you wouldn't need a screen. But a lot of 12-month-olds with autism have a lot of pretty normal behaviors," and so a screening test helps pick up the subtle abnormalities.
Even when children respond extremely well to therapy, they can still have traces of autism, Ms. Rogers said.
She recalled one 6-year-old who had regained a normal IQ and vocabulary after therapy, but "he came home after the first day of school, wrote down the names of all his schoolmates from memory and arranged them on a table in the order in which they sat. That's a good example of the leftovers of autism, what I call the shadows left behind from his autism."
One of Rocco's shadows is that he still won't eat certain foods because of their texture, Ms. Korch says.
Because she knows her son's recovery is rare, she's careful not to emphasize it too much with friends who have autistic children.
"I have become close with a lot of families, and yes, some have had very little success. I remember with one mom, when I told her Rocco doesn't have a diagnosis anymore, I could see in her face that hurt. It's hard to work that hard and not get the results you're expecting."
While she has learned not to brag about Rocco's victories, "I love to give advice to other families who are starting out with an autistic child but who might be in denial, because I want them to get started on services right away."