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Autism Spectrum Disorders Health Center

What Autism Does to a Mother

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While Nicole remained hopeful that Ryan would make substantial leaps in progress once his speech and occupational therapy (OT) sessions began at the end of September, she continued to trawl the Internet and read books to uncover more treatment options. Her research turned up a promising approach: one-on-one, in-home applied behavior analysis (ABA) — a widely used technique that's supported by years of research studies. She'd need to hire a tutor who would then be trained by a consultant versed in the method of ABA she'd chosen (known as Lovaas), and the wait to start that training was three months. Nicole put Ryan on the waiting list.

When Ryan's speech and OT sessions finally got started, Nicole's feelings of hope were quickly dashed. The seasoned therapists weren't having much success in getting through to him; Ryan screamed throughout the sessions and became hyperactive, as if someone had flicked a switch. "I assumed that as soon as therapy got under way, progress would happen like magic," says Nicole. "So when his therapists were telling me they weren't sure how to help him, it was scary. I really worried that Ryan was headed for severe autism."

Desperately seeking a treatment that Ryan would respond to, Nicole found the Talk About Curing Autism website; actress Jenny McCarthy, who has a 6-year-old son with autism, is the organization's spokesperson. "With tears running down my face, I watched a video on the site about kids who had regressed and were recovering, some to the point of being considered 'typical' children again," says Nicole. "It made me believe recovery was possible for Ryan."

Delving deeper into the site, she read about a gluten-free, casein-free (GFCF) diet that improved symptoms in some kids. Removing gluten meant cutting out grains such as wheat, barley, and oats; eliminating casein amounted to avoiding all dairy products. Nicole thought, There is no way. Ryan had so many aversions to food textures, and she was scared to narrow his already limited diet. But a couple of weeks later, she found herself glued to McCarthy's appearance on Oprah. McCarthy talked about her son's treatment and recovery, part of which she attributed to the GFCF diet. "In momspeak, she broke down the idea of the diet — getting rid of toxins in the body and putting in what it needs — and it made sense," says Nicole. Immediately after, Nicole headed to the bookstore, where she sat on the floor and raced through McCarthy's book Louder Than Words to find out more.

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