On a recent Sunday, while Walt was baking gluten-free cookies, his mother had to remind him to check the recipe, put the eggs away, and close the refrigerator door. But he navigated the oven and timer just fine, and carefully used a spatula to shift the warm cookies from the baking sheet to the cooling rack.
A few minutes later, after a quick, reassuring hug, the 16-year-old resumed the scrapbook he had started that morning, printing out pictures of his favorite Theodore Tugboats, trimming them to fit, and labeling each one.
I did so awesome, he said excitedly when he was done. He piled five of the now-cool cookies onto a plate, hurried off into another room, and crooned Christmas carols to calm himself down.
Life with Walt alternates between moments of enthusiasm and anxiety, scowls and spontaneous hugs, typical teenage behavior and younger-than-his-age interests.
Diagnosed with autism as a preschooler, Walt went through years of temper tantrums, diarrhea, skin scratching, unpredictable behaviors, and obvious physical pain. A few minutes spent at his airy Groton home reveal both that Walt, now 5 feet 6 inches tall, is not a typical teenager, and that he and his family - including two siblings not on the autism spectrum - manage his challenges with good nature, warmth, and lots of humor. Like many parents of autistic children, Walts mother, Sarah Connell has often been ahead of his doctors and caregivers in coming up with new ways to help him.
But science and medicine are catching up with parents understanding of the condition, and a more nuanced view is slowly emerging: Autism is not just a brain problem. Many people with autism, which affects 1 in 110 American children, are profoundly unwell, with physical symptoms ranging from sleep disorders to seizures, energy and immune issues to digestive troubles such as those that still occasionally plague Walt. And treating those symptoms can markedly improve the lives of autistic children, even if doesnt cure them.
Theres a whole slew of other symptoms, besides the communication challenges, social impairments, and repetitive behaviors that are the core, defining traits of autism, said Dr. Gary W. Goldstein, president and chief executive officer of the Kennedy Krieger Institute, a Baltimore research institute that focuses on disorders of the brain, spinal cord, and musculoskeletal system. A fair percentage have gastrointestinal problems, at least when theyre young, that may even outweigh the autism.
Connell said their lives improved immeasurably when Walt stopped having diarrhea multiple times a day at age 10.
We found that treating his stomach reduced distressed and autistic behaviors, Connell said.
Treating these physical symptoms might also improve core traits of autism, said Pat Levitt, director of the Zilkha Neurogenetic Institute at the University of Southern California, where those studies are just beginning to examine this question.
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Parents are changing autism research