Sara DiFucci says she vividly remembers the day a pediatrician said her daughter, then a preschooler, could wind up in a group home later in life. She was devastated.
“I thought my daughter was going to get married and go to college,” DiFucci said. “That was all taken away from me.”
Attending her first Defeat Autism Now conference more than a decade ago was energizing, DiFucci said; doctors there offered the hope of recovery.
Since then DiFucci, of Lake in the Hills, Ill., has tried many treatments: chelators, infrared sauna treatments, hyperbaric oxygen therapy, the hormone secretin, the antifungal drug Nystatin and supplements.
Her daughter, now 11, is an A student who wants to be a veterinarian.
At an AutismOne conference in May, physicians and researchers highlighted similar successes: children who could suddenly speak; children who once couldn’t sleep now giving their parents peaceful nights.
For many parents, such stories are more persuasive than what experts say. “I met a few parents who said, ‘I tried this,’ and they had gains,” DiFucci said. “That’s going to mean more to me than a pediatrician who’s going to spout off statistical studies.”
But in evaluating a therapy, the challenge is determining how much, if any, of the progress can be credited to the treatment.
That is because, over time, children with autism do develop, said Dr. Max Wiznitzer, a pediatric neurologist and an autism expert at Rainbow Babies and Children’s Hospital in Cleveland. They make leaps; some may plateau or regress, but they show improvement.
“Kids are at their worst in the second and third year of life,” Wiznitzer said. “That is when they are not talking. . . . most into themselves.”
But around age 3 they often begin to talk, he said. “Over 3 to 5 years, you see an improvement in communication skills. . . . By school age, they have language to get needs and requests met.”
Between 10% and 20% of children with autism who were diagnosed early may make so much progress that they are indistinguishable from peers.
This happens regardless of whether the child is undergoing alternative therapies, said Dr. Susan Levy, director of the Regional Autism Center at the Children’s Hospital of Philadelphia. But parents may credit treatments for the gains.
It’s a pattern familiar to Dr. James Laidler, an anesthesiologist in Portland, Ore. For four years, he and his wife were convinced that the treatments were helping their two children. Laidler spoke in support of chelation and other therapies at Defeat Autism Now conferences.
But eventually, Laidler said, his wife, also an anesthesiologist, began to suspect that the treatments were useless and secretly weaned the kids off their myriad therapies.
“Louise came up to me and said, ‘How do you think the kids are doing on their meds?’ ” Fine, he said. “Then she said, ‘What would you say if I told you I stopped them three months ago?’ ”
The last straw came on a family trip to Disneyland. Laidler’s youngest son was on a gluten-free diet, and doctors had told Laidler that if he had even a bite of wheat, he would suffer a “total regression,” Laidler said.
At a buffet, while the parents were distracted, their youngest son grabbed a waffle and bit in. And -- nothing happened.
“I really fooled myself,” Laidler said.
Laidler said he now regrets having misled parents. Pitches from doctors providing alternative treatments are difficult to resist, he said.
“They are people offering hope,” he said. “And it is very hard, almost impossible, to say I will pass on the hope and go with what we know is true.”