Finding hope in autistic lives

Parents of 3 boys with autism organize expo to help others navigate the disorder

February 18, 2007|By Sandy Alexander | Sandy Alexander,sun reporter

Randy and Lynn Gaston's 5-year-old triplets all have brown hair, a thin build and a sunny personality.

They also share another trait that has touched every part of their family's life: All three have autism.

Nicholas is musically inclined and likes to flip through books for hours by himself. Hunter likes dancing, knows his ABCs and habitually chews on his toys. Zachary is great with computer games and has some language skills, but little things can make him melt down without warning.

The Gastons consider themselves lucky that their boys find ways to communicate, when some children with autism are severely withdrawn.

"As hard as it is for us, we're so blessed they're able to relate to us," Lynn said.

Over the past three years, the Gastons, both 40, have learned that autism brings many challenges: worry about your child's future, 24-hour care-taking, wait lists to see specialists, searching for the best therapies and finding ways to pay for services.

After several years of efforts to get a correct diagnosis and find appropriate treatments, the Gastons decided to try to help other parents facing the same hurdles.

They have organized Autism Expo, a day of speakers, exhibits and networking around the topic of autism, to be held April 14 at Howard Community College.

The federal Centers for Disease Control and Prevention released its most comprehensive autism study this month and reported that one of every 150 8-year-olds shows symptoms of the disorder, a number Lynn believes "will get people's attention."

According to the Autism Society of America, the disorder inhibits a person's ability to communicate and interact appropriately with others. Traits can include repetitive speaking or activities, preferring to stay away from other people, laughing or showing distress for reasons that are not apparent to others, sustained "odd play," and uneven fine and gross motor skills.

No single cause of autism has been pinpointed, and those who have it show a range of impairments, according to the society. Therapy focusing on behavior and communication have had positive results, depending on the severity of the child's disability.

Randy Gaston recalled how after his boys were diagnosed there was little more for the doctor to do.

"We were told to go out there and get it done," he said, recalling how he and his family turned to the Internet and to other parents for advice.

"The lack of understanding about what's available is so prevalent," Randy said. "The more that the parent knows, the better chance the child will have of succeeding."

Vincent J. Carbone, a behavior analyst who runs an autism clinic in New York, said, "The field of autism is a consumer's nightmare."

"Choosing the right form of treatment and most effective providers is absolutely critical," added Carbone, who will be the keynote speaker at the expo. "Then [there is] the kind of efforts that parents have to put into working with their child."

About six years ago, when the Gastons pursued in-vitro fertilization, they were "stunned" to find out that one of the two embryos they had implanted had split, giving them two identical triplets and one fraternal triplet.

When all three were born small but healthy, the Gastons were thrilled and relieved. They watched the boys develop normally until they reached age 2.

Then, like many parents of children with autism, they noticed the things their sons stopped doing, such as using language and developing social skills.

Nicholas often retreated to a corner with a book. Hunter started walking on his toes all the time. Zachary would cover his ears and get upset around a lot of noise.

For a year, doctors speculated that the boys were experiencing common developmental delays, Lynn said, particularly because they were triplets and small at birth. The diagnosis also was difficult because they were somewhat social compared with more severe autism cases.

But the Gastons said they knew "something else is going on here," Lynn said.

After a year of ruling out other problems, a diagnosis of autism finally came from a specialist in Bethesda.

It was difficult, Randy said, not only to know for sure that the children were facing a serious problem but to "grieve for the children you thought they were going to be."

Lynn said they still have hope the boys will go on to fulfilling lives. "I'm not willing to say at 5 that it's over."

But, Randy added, research shows that early intervention is very important. "We only have a couple of years to get it right," he said.

Carbone agreed that the early years are the most critical, adding that parents need to use that time to seek out therapy programs that have experimentally verified methods of treatment.

His focus is in behavior analysis, an area where he said finding a highly trained therapist is important, but also difficult and potentially expensive. Many parents have difficulty getting insurance to cover all kinds of therapies and are looking to school systems and other government programs for help.

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