Leo Rosa, the boy who loves green straws, was diagnosed as autistic in 2002 when he was two years old. His father, Craig, produces science videos for a TV station in San Francisco, and his mother, Shannon, is a blogger, and software consultant. He has two sisters, Zelly and Gisela.
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For the first few months after he was born, Leo Rosa seemed like a normal developing baby. It wasn’t until his first birthday that the Rosas noticed anything unusual about him: he was taking his favorite toys and sliding them from one place to another, over and over again.
Leo had always been a picky eater. His diet consisted almost exclusively of peanut butter and jelly sandwiches, bananas, guacamole, Goldfish crackers, and popcorn snacks. He began suffering from frequent episodes of diarrhea and vomiting. Shannon took Leo to an allergy specialist to test him for allergies. All the tests came back negative.
When Leo was two years old, a pediatrician friend noticed that Leo was not responding when called by his name. But when they checked Leo’s hearing, his hearing was fine. The director at a regional center told Craig and Shannon that Leo might be autistic.
Shannon felt devastated. She spent hours searching for information to help her son. Two books in particular made an impression on her:
- Catherine Maurice: Let Me Hear Your Voice: A Family’s Triumph over Autism; and
- Karyn Seroussi: Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A mother’s Story of Research and Recovery.
Catherine Maurice’s book focused on applied behavior analysis (ABA), a behavior modification technique based on the animal-training theory of B.F. Skinner.
Karyn Seroussi’s book tells the story of a mother using a technique called biomedical intervention pioneered by Navy psychology Bernard Rimland. The foundation of this approach is the so-called GFCF diet, a strict diet free of gluten and casein, two proteins found in wheat and dairy products. The theory was that vaccines, like the DPT and the MMR leave some children unable to digest these proteins, leaving the walls of their intestine permeable (“leaky gut syndrome”). The undigested proteins are then carried by the bloodstream to the brain where they wreak havoc with normal development. Along with the GFCF diet, Seroussi used an aggressive program of high-dose vitamins, minerals, enzymes, and supplements developed by Rimland’s Defeat Autism Now! (DAN!) network.
After reading Seroussi’s book, Shannon took Leo to see a DAN! Doctor in nearby Los Altos. Samples of Leo’s blood, hair, stool, and urine were dispatched to the DAN!network for analysis. The allergist who had tested Leo months earlier hadn’t turned up any red flags, but the test results from the DAN!network showed that Leo was extremely “reactive” to peanuts, and soy, and highly allergic to gluten and rye. Leo’s heavy-metal profile was also problematic, according to the doctor, and they should consider chelation to kick-start their son’s recovery process. While they prepared Leo for chelation, the doctor suggested, they could undertake treatments to help correct his systemic imbalance. One such therapy is called BioSET, and the doctor knew of a skilled BioSET practitioner who had an office just down the block and said he would provide the Rosas with a referral.
During one of Leo’s BioSET treatments, Shannon discovered that the therapist and the doctor were a couple. But the doctor hadn’t said a word about their relationship when he made his referral, and neither had the therapist.
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A few months later, the Rosas returned to the doctor’s office for another round of lab results and consultation. There were some bad news. The heavy-metal profile showed that Leo’s body was now excreting low levels of mercury. This development made Leo an urgent candidate for chelation.
Craig had been trying to get to the root of his research on chelation. The vaccination issue was particularly confusing for Craig because he’d been reading a new batch of studies challenging the validity of Wakefield’s paper of mercury/autism hypothesis. He had told his father, Marty, that they were considering intravenous chelation on the advice of their doctor. Marty replied with a lengthy letter in which he expressed his concerns. He would not put their hope on chelation and food supplements. As a health care professional, he said, he was unnerved by the sheer number of disclaimers in the DAN! Report. Marty felt that the risk was too high to Leo.
On the next visit to Los Altos, the doctor brought up chelation again. But this time Craig challenged him. He asked the doctor whether there were any scenario that he would not recommend chelation, and the doctor’s answer was no. At that point, Craig and Shannon walked out of the doctor’s office and never went back again.
Leo was nowhere close to recovery, but he was thriving in his own ways. He connected with his ABA therapist. For 24 hours a week, she worked with him on mastering simple tasks that would enable him to care for himself and express his desires and preferences more effectively.
Then Shannon read a book that inspired her to think differently about Leo. Making Peace with Autism was Susan Senator’s story of raising her autistic son. The book promoted no theories of autism causation and promised no astonishing recovery. After reading the book, Shannon stop treating her son like a “science experiment” and started improvising creative ways of making connections with Leo and meeting his needs.
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