From Jane Brody's Personal Health column in The NY Times:Rochelle and Ian Yankwitt were thrilled when their son, Casey, was born seven years ago, 19 months after the birth of their daughter. But their delight was short-lived. At 7 months, this otherwise happy infant failed to respond to his name or any attempt to engage him with words, his mother recalled in an interview.
“I thought he was deaf,” Ms. Yankwitt said, but tests showed nothing wrong with his hearing. Instead, at 14 months, Casey received a diagnosis of autism. His parents, both lawyers, wasted no time in setting up early intervention treatments — speech and occupational therapy and special education — as provided by New York State for developmentally disabled children. Ms. Yankwitt, who described Casey as “pretty seriously affected,” left her job to coordinate his endless rounds of treatment.
If not for speech therapy five or more days a week for six years, Ms. Yankwitt is convinced Casey would not have the limited language skills he now has, which enable him to speak in short sentences, make his needs known and share things that excite him.
But, she added, “there is no mistaking Casey for a normal child. He is in constant motion, flaps his arms, is easily frustrated and makes strange noises.”
Ms. Yankwitt read many books and articles by parents claiming that this, that or the other treatment had cured their child’s autism, all anecdotal and based on theories and therapies unproved by scientific study.
“I spent six years hoping that the next thing around the corner would be the one for Casey,” she said.
So far, nothing has made a substantial difference in Casey’s behavior. Still, Ms. Yankwitt said, guided by a pediatrician who specializes in holistic care of children with neurodevelopmental disorders, through trial and error some of the suggested remedies have produced apparent improvements.
The Yankwitts’ many attempts to help their son and, in turn, help themselves are typical of the endless ups and downs faced by families of children with autism, for which there is no documented cure.
According to Laura Schreibman, a psychologist who is the director of the Autism Research Program at the University of California, San Diego, and the author of “The Science and Fiction of Autism” (Harvard University Press, 2005), if anything definitive can be said of the popular therapies for autism, it is that treatments have to be individualized. What works to reduce symptoms in one child may or may not help another.
It is also true that autism is highly variable, with periodic improvements and regressions, and most children receive several therapies at once. So it is difficult to say what makes things better or worse at a given time, Dr. Schreibman said in an interview.
This means that parents like the Yankwitts try one thing after another, often keeping careful records of the latest regimen and its seeming effects on their child’s behavior.
“Parents are afraid of missing what might be effective, so they try everything,” Dr. Schreibman said.
Initially the Yankwitts sought only mainstream therapy for Casey — “we were very afraid of all the alternative treatments,” Ms. Yankwitt said — but a regression he suffered between ages 2 and 3 prompted them to branch out.Their tests of alternative methods began with a dairy-free diet. “Thirty-six hours later he was like a different kid,” Ms. Yankwitt said. “He made eye contact for the first time. It was as if a layer of smog had peeled off him.”
That was followed by another dietary change: a gluten-free diet, with less obvious results, then “a specific carbohydrate diet to eliminate yeast in his digestive tract,” Ms. Yankwitt said. “These diets are very challenging,” she said. “We carried food for him everywhere he went.”
Next came supplements, introduced one at a time, with daily notes of how Casey reacted to each. In addition to theanine to aid sleep, Casey now takes garlic capsules, calcium, coenzyme Q-10, L-carnitine, taurine, zinc, magnesium, molybdenum, selenium and Nystatin (for yeast), as well as two psychotropic drugs: a mood stabilizer and an antidepressant. He also uses a glutathione cream that is supposed to detoxify his body, a B-12 cream, an intestinal complex to help with digestion, fish oils, curcumin and milk thistle.
At the doctor’s suggestion, Casey underwent a full round of chelation therapy to remove heavy metals from his body that might be damaging his brain, “but it didn’t seem to make a difference in what he was, and so we stopped,” Ms. Yankwitt said.
What she thinks has helped is hyperbaric oxygen therapy purported to reduce inflammation in the brain, which coincided with a significant improvement in Casey’s language skills. But, Ms. Yankwitt conceded, “We don’t know what would have happened if we had done nothing.
“The most difficult thing for me is constantly hoping something will fix this and being given reason to hope by people you trust,” she added.
In “Defeating Autism: A Damaging Delusion” (Routledge, 2009), Dr. Michael Fitzpatrick, a general practitioner in London whose son is autistic, likened the alternative medicine approach to a return to “medicine’s dark ages.”
Every biomedical intervention, he wrote, “is supported by anecdotes and personal testimonies: it is understandable that parents want to share their experience that their child has made progress, and it is equally understandable that other parents are impressed by success stories.”
Dr. Fitzpatrick continued, “When parents have invested money, time, energy and, above all, hope into a particular treatment, it is natural to seek to attribute any improvement to that treatment.” But, he added, anecdotal examples and wishful thinking are not science.
The one approach that has been scientifically validated to help, though by no means cure, autistic children is behavioral intervention that mimics the way normal children learn, Dr. Schreibman said. For example, if the child wants to play with a toy car, the
therapist holds it and prompts the child to say “car.” If the child makes the “c” sound, he is given the car to play with. The next session may require him to say “car.”
In this way, a behavioral repertoire can be built gradually and systematically to develop behaviors like communication, engagement, social interactions and play skills, Dr. Schreibman said.
“Parents need to learn how to do it,” she said. “It’s a lot of work and it takes a lot of time — maybe 30 to 40 hours a week for a 7-year-old — and the results are not instant, but it does work. But the earlier in a child’s life it is started, the more effective it is likely to be.”
With the increase in awareness of autism and improvements in diagnosis, more children today can get an early start on effective therapy rather than wasting valuable time, effort and money on remedies that lack a scientific basis and proof of effectiveness.