Discussing Autism

Don’t forget! National Fragile X Day is this coming Sunday, July 22!

Motorcycle ride organizers raise awareness of Fragile X Syndrome
By Elizabeth Raffaele

GRAY/NEW GLOUCESTER (July 18, 2007): Playing with a mini-motorcycle and munching on a slice of apple, 4-year-old Alex Gosselin seems like an ordinary child.

But Gosselin isn’t a typical child. The blond, blue-eyed boy was diagnosed at birth with Fragile X Syndrome.

Physically, he looks like any other kid. But he displays autism-like behavior, something his mother said people can have a hard time understanding.

“When you look at Alex, you don’t see anything wrong,” Gosselin said. “It can be frustrating when he has a behavioral outburst.”

According to Gosselin, few people know about Fragile X Syndrome even though it is the most common genetic cause of autism. Fragile X Syndrome is the most prevelent cause of mental retardation and July 22 is National Fragile X Awareness Day. According to The Fragile X Research Foundation, Fragile X affects 1 in 4,000 males and 1 in 6,000 females.

In order to raise awareness and money for Fragile X, Gosselin is organizing a motorcyle ride and silent auction for Saturday, Aug. 25. She has organized the ride since 2005.

The proceeds from the ride and the auction will go the National Fragile X Foundation and FRAXA Fragile X Research Foundation as well as for therapy scholarships for Maine children who are diagnosed with Fragile X.

Gosselin, who owns Maine Coast Cycle with her husband Eric in New Gloucester, said the auction will consist of such items including motorcycle gear, a fly fishing rod, restaurant gift certificates, among other items.

According to North Yarmouth resident Julie Wilson, who also has a child named Alec who was diagnosed with Fragile X, the point of the event is to also get early intervention for those children who are undiagnosed. Wilson is helping Gosselin organize the event.

“I’m pretty confident if I hadn’t received occupational therapy when he was young…then I think life would be harder for him today,” Wilson said.

“The important part is if parents, who have kids who are having difficulty, get the treatment and the services,” she said.

While children with Fragile X physically look much like other children, they exhibit symptoms such as delayed speech, autistic behaviors, reduced eye contact and seizures.

Alex Gosselin, for example, is mostly nonverbal. However, he uses more than 40 signs in order to communicate ideas to his parents.

For Gosselin and Wilson, the inability to communicate can present the most challenging aspect of caring for a child with Fragile X. Wilson recalls what it was like when her son, who has recently graduated high school, was Alex’s age.

“I remember what it was like when he was smaller with no communication…that was really tough until language comes,” Wilson said.

For Alex Gosselin, that time could be fast approaching as he was recently approved for a voice-output device that will help him communicate with his family.

There is a $25 donation for those who participate in the ride. Gosselin, who is unsure of the exact course, said it will be a Lakes Region ride beginning at Maine Coast Cycle. Ride registration begins at 8 a.m., the ride at 9 a.m., and the auction at 1 p.m. In order to donate items to the auction or volunteer with the event, individuals should call Maine Coast Cycle at 926-4211.

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