Published: June 08, 2008 11:57 am      

Walking to help

Oklahoma families participate in event for Autism

DUNCAN — Hundreds of Oklahoma families participated Saturday in Walk for Autism at AT&T Bricktown Ballpark in Oklahoma City.

Among them were at least two families with ties to Duncan. Not only are they from the same hometown, but they also share a kinship in the growing ranks of families with autistic children.

Linsey Whaley of Duncan gave birth to 10-pound, 12-ounce Justin five years ago. There was nothing before or after his birth to signal that problems lay ahead. Justin was a normal, happy little boy until after his second birthday.

“I noticed he wasn’t talking like he should have by then. I could just feel that something wasn’t right. Our family doctor kept telling me that he was OK, that different children developed at different rates, but I knew he needed to be evaluated by people who understood the problems kids can have,” Whaley said. “No one thought about autism at the time.”

She enrolled Justin in a preschool program in the Comanche School System, and the teachers and school psychologist began testing him.

“The first thing they told me was he had ‘autistic characteristics,’ but I had no idea exactly what that meant,” his mother said.

She soon learned, and is continuing to search for answers, spending two to three hours each night on the Internet and talking with everyone she can find who has experience with the condition.

According to the National Institute of Neurological Disorders and Stroke (NINDS) Web site:

“Autism (sometimes called ‘classical autism’) is the most common condition in a group of developmental disorders known as the autism spectrum disorders (ASDs) ... ASDs include Asperger syndrome, Rett syndrome, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS).

“Experts estimate that three to six children out of every 1,000 will have autism. Males are four times more likely to have autism than females.

“There are three distinctive behaviors that characterize autism. Autistic children have difficulties with social interaction, problems with verbal and nonverbal communication, and repetitive behaviors or narrow, obsessive interests. These behaviors can range in impact from mild to disabling.”

With all the facts and figures on the Web site, perhaps the most comforting line says, “For many children, autism symptoms improve with treatment and with age. Some children with autism grow up to lead normal or near-normal lives.”

And it is that hope to which Whaley clings.

“If Justin can grow up to lead as normal a life as possible, I’ll be happy. There are a bunch of autistic children in families everywhere who function just fine. Some well-known people have been autistic. Albert Einstein was autistic, and everybody knows the things he accomplished,” she said.

Justin was diagnosed with a mild case of PDD. Through speech therapy, occupational therapy and other specialized care in both school and at Duncan Regional Hospital, he is making progress. He also takes medication to help him sleep and keep him calm when life gets too frustrating for him. He’s just finished prekindergarten and is looking forward to kindergarten at Comanche this fall.

“They have some great people at both places working with the kids. Justin thinks his therapy sessions are fun. He really enjoys it,” Whaley said.

She also credits her church, Meridian First Baptist, and Liberty Day Care Center for much of the support she receives in dealing with Justin’s needs. Her family, too, is very supportive, and as a full-time student at Cameron University majoring in education, she finds their help priceless, she said.

Autistic children are often frustrated, and exhibit behaviors such as screaming and biting their nails when they cannot cope with a situation, though through his therapy, Justin is experiencing fewer and fewer “meltdowns,” his mother said.

“What gets me is the way that adults act when they see a child behaving like that. They make rude comments or stare at him. I’ve even had people tell me, ‘Your kid’s a brat!’ or ‘Everybody knows when a kid is autistic that it’s the mother’s fault!’

“Generalizations like that are just wrong. They don’t help anything, and they certainly hurt the families involved. People just don’t understand. Justin is a good kid. He’s not retarded. He’s very affectionate, likes to hug. He likes his flip-flops and loves to watch cartoons. He can dress himself. He likes to swim and loves playing football like any little boy. He just cannot talk much and he gets frustrated easily,” Whaley said.

Justin and his mom watch his favorite cartoon CD, “Scooby Doo,” every day and, when he’s not watching the CD, he carries it with him everywhere he goes — sort of an electronic security blanket.

Justin also likes being big brother to his sister, Hannah, who will turn 2 in November. Because characteristics of autism often do not show up until a child is 2 or 3 years old, Justin’s condition was just being fully realized when Hannah was born. She has shown no tendency toward autism, though Whaley has learned that when one child in a family is autistic, his or her siblings tend to have a higher chance of also developing autism.

“He’s very protective of her. If another child takes a toy away from him, he gets upset. If Hannah takes a toy away, it’s OK.”

A lot of news stories lately have attempted to tie autism with childhood immunizations. While no definite connection has been established, Whaley is hesitant to allow Hannah to have the vaccine.

“I’m just not sure. It is the measles-mumps-rubella — MMR — vaccine that is suspected, but no one knows for sure. Hannah has not had it, but Justin did,” she said.

What families affected by autism need is understanding and support, Whaley said. Passage of Nick’s Law, named for Nick Rohde of Edmond, would have required insurance companies to cover autism-related medical costs. Unfortunately, the law has not been passed yet by the Oklahoma Legislature, and costs of medication, therapy and other needs of an autistic child can be overwhelming. Saturday’s walk in Oklahoma City was aimed at calling attention to autism, which has been called the fastest-growing disability in the nation. The walk also helped focus attention on the social aspects of autism and it is hoped that someday soon, families of autistic children will not have to hear the hurtful comments and see the rude stares their kids experience, Whaley said.

Crystal Frost, chairman of the Oklahoma autism walk, was born and raised in Duncan. Her son, Spencer, 4, is also autistic.

“I’m so excited to see that we have people from Duncan getting involved,” Frost said.

For more information on dealing with children with disabilities, visit www.oklahomafamilynetwork.org. The Oklahoma Family Network is a nonprofit parent-to-parent mentorship and referral network designed to empower families who are raising children with special health care or disability needs. There is a lot of information on autism available on the Internet, Whaley noted, but there is also a lot of misinformation out there, too. She suggests checking findings with a local physician or therapist before making any changes in care or lifestyle.