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Column

Much about autism still a mystery

By Sharon tubbs, City Times Editor
Published February 22, 2008


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About 10,000 families in the Tampa Bay area are affected by autism, which some researchers say is more common than pediatric cancer, diabetes and AIDS combined.

Yet, most of us know little about it.

We may have heard the term but we don't know about the Autism Speaks office inside the BankAtlantic building on West Shore Boulevard.

We haven't paid attention to the special classes for autistic children at schools such as Dale Mabry Elementary.

Which is why organizations around the country are trying to raise the disorder's profile - as well as its financial cache for medical research.

Autism Speaks describes it as a "neurobiological disorder" that "impairs a person's ability to communicate and relate to others." The organization's Web site goes on to say that autism is associated with "repetitive behaviors, such as obsessively arranging objects or following very specific routines."

In recent weeks, advocates have been busy marketing their efforts, centered locally on the "Walk Now for Autism" fundraiser Saturday. The event, to be held at the Museum of Science and Industry, is in its second year and organizers expect to see about 3,000 participants and to raise $300,000. Last year, 2,200 people participated in the event, raising $190,000.

Vicky and Pier Westra will be there. The couple own Javamo Coffees based in the Beach Park area and created the Art for Autism Foundation after their 11-year-old daughter, Gabrielle, was diagnosed at age 4.

The Westras recently sponsored an art contest for autistic children. A 10-year-old Jacksonville kid won. His design will appear in limited release on Javamo bags come April, Autistic Awareness Month. The bag will also have information about autism and 10 percent of sales will go to the foundation, which wants to eventually work with schools to improve methods of working with autistic children.

"Autistic children have problems expressing themselves a lot of times," Pier said. Many use art and music to communicate their feelings.

Stories of autistic children can be heartbreaking and inspiring at the same time.

Teri Simpson's granddaughter Shelby was a smiling and playful toddler until she turned 15 months old.

Shelby got a vaccine and soon after became withdrawn and stopped talking, Teri said. (Some researchers debate whether there is a link between autism and a vaccine for measles, mumps and rubella.) She would go off and screech, a "shrilled scream," her grandmother said.

Her family found power and knowledge, working with specialists and attending conferences, such as one sponsored by the Center for Autistic Related Disabilities (CARD) at the University of South Florida.

Routine changes, such as leaving her grandmother's house and going home, can be hard for Shelby. Her family has learned to prepare her in advance, and often. "Shelby, in 30 minutes, you're going to leave Grammy's house and go home." Then they keep reminding her at intervals until the time comes.

Shelby is now 11 and takes mainstream classes in school. She has sleepovers and loves snorkeling, diving and Jimmy Buffett songs. In some ways, she is less mature than other kids, Teri said. In some ways, she has a "wisdom" her peers don't.

Rob and Karen Rose suspected early on that Zachary wasn't the typical baby because he wasn't speaking or "thriving" in other ways. He was 3 before he could hold and drink from a cup. He was 7 before he could say some form of the phrase "I love you."

Now 8, he is just beginning to speak.

The couple's second son, Benjamin, 6, also has autism. Doctors still don't know enough about the disorder to determine whether there is a genetic link, Rob said.

He used an analogy he'd heard to describe the situation. Say you're planning a trip to Italy. You research the country, plot which sights you'll see and pack appropriately. Then you get on the plane and find out you're actually going to France.

That's how the Roses felt. They had so many expectations for their children, only to learn they would have to change course.

Through it all, Rob says, their sons have taught them to slow down and to celebrate life's small victories.

He had some advice for parents of autistic children:

- Don't hide from the diagnosis. "As painful as it is, you've got to make decisions that are best for the child, not based on your expectations."

- Don't do it alone. Seek out resources such as CARD, Autism Speaks and a good doctor.

- Don't neglect your marriage. "You've got to take time to remember who you're married to."

- Have a good faith system. Rob, a Christian, said, "My faith gets me through the rough times, gives me promise and hope."

Fundraiser

Walk Now for Autism

What: A fundraiser that includes a 1-mile walk, activities for children, resources for families, light refreshments and entertainment. U.S. Rep. Kathy Castor and Mayor Pam Iorio will participate in the event. Admission to MOSI is free following the event.

Where: Museum of Science and Industry, 4801 E Fowler Ave., Tampa.

When: Saturday. Registration and resource fair begin at 8:30 a.m.; walk kicks off at 10 a.m.; closing ceremonies at 1 p.m.

[Last modified February 21, 2008, 19:49:56]


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