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Printed with Permission from the Hamilton Spectator

 

The Hamilton Spectator

Pubdate:February 12, 2005     

Page: A05      

Section:Local   Edition:MET    

Mom's journal aids research into autism

Tina Fougere kept a journal of the development of her children, 12-year-old twins Tasha and Nathan, that researchers are making use of to get a glimpse into the early signs of autism. Tina Fougere recorded her twins' every sound and movement because she wanted to create a lasting keepsake. But the Winona mother never imagined that her meticulous journal would give doctors and researchers a rare glimpse into the earliest signs of autism. Over more than five years -- beginning when she first learned that she was pregnant -- Fougere recorded hundreds of pages of painstaking detail about her fraternal twins, Tasha and Nathan. She noted when each of them sat up, crawled or spoke for the first time; she described how they played together; she kept medical records, such as cardiograms, weight charts and head measurements. For the first six months, the twins were doing the same things: they smiled, made noises and showed more affection for family than outsiders. But differences in their development soon began to surface -- Tasha learned new words every day and became "a real chatterbox," while Nathan uttered senseless sounds and squeals. In time, these differences became more striking. "Nathan was always wound up," says Fougere, a full-time mom, as she flips through the journal. "He wouldn't sit down, he wouldn't listen to me. He would bang his head against the wall and on the floor." He also avoided eye contact and wanted to play alone. When Nathan was eventually diagnosed with autism, Fougere realized that these had been the first manifestations of his disorder. She shared her notes with McMaster University psychology professor Melissa Rutherford, who pounced on them. "There aren't many research opportunities like this, where you have really young children who have autism," Rutherford says. "At the earliest, children are diagnosed with autism at the age of two -- usually it's four of five." Having access to twins was also unprecedented. With race, economics, environment and diet all serendipitously controlled, it was easier to attribute the differences between the twins to Nathan's autism. Rutherford used the notes as the basis for a paper she published in this month's issue of the journal, Neurocase. In it, she cites "differences in language development, social interaction, sleep patterns and sensitivity to pain" between the twins as early as one year -- a fact with serious implications for researchers and clinicians. Autism involves multiple genes that alter the anatomy of the brain, affecting communication, socialization and motor skills. Recent epidemiological studies show that it affects about four to six children in every 1,000 -- and four times as many boys as girls, says Louise Fleming, executive director of the Autism Society of Canada. But she says this figure is artificially low, because of poor diagnosis and tracking of the enigmatic disorder. Fougere recalls the challenges she faced in trying to get a proper diagnosis for Nathan. Though she had seen the red flags early, and alerted her family doctor, he told her not to worry, Nathan's development was just "delayed." It wasn't until Nathan was nearly four years old that a psychiatrist observed him at play and came up with a diagnosis of pervasive developmental disorder, a mild form of autism. However, Fougere's journal -- and Rutherford's paper -- suggest the clues and predictors of autism were there much earlier. Rutherford is now observing children as young as three months who have a hereditary risk of the disorder. She watches their eye contact, reciprocal smiling and their responses to their names. "The earlier a child is diagnosed with autism, the earlier the intervention begins -- and the higher the chances for a child to reach their potential," she says. Nathan is now 12 and shares the same Grade 7 class at Winona Public School with Tasha. She looks out for him and helps him express himself. An educational assistant modifies the curriculum and tries to keep Nathan calm, but there are days when the school calls Fougere and she's forced to fetch him for being disruptive. Still, understanding autism and getting specialized help has given him a chance to improve and connect. "He knows there's something different about him, but he's a happy boy," Fougere says. "He feels the emotions that other children feel. He gets embarrassed. If he sees his sister sad, he goes running to make sure she's OK. And when he's happy, oh my God, he has such a diaphragm laugh." Fougere founded the Canadian National Autism Foundation, which raises money for Canadian research into autism and hopes her journal will help other children with the disorder. "I'd love it if things were easier for them," she says. "They just struggle with everything."  

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