Georgia autism diagnosis rates rising faster than nation

The life Janel and Jason Schwartz anticipated for their little girl changed the day they learned she has an autism spectrum disorder.

It also changed the life they envisioned for themselves, but for the better. Finally, the two of them had an explanation for Perri’s “quirky” behavior.

“I didn’t really know that much about it,” said Janel Schwartz. “My impression was Rain Man and what I have learned since is that autism is not the end. It’s the beginning. I’m happy to say all these years later she is an amazing kid. I have a lot of high hopes for her.”

Schwartz holds that same hope for the thousands of other children and their families who’ve ever received an autism diagnoses. It’s one of the reasons, she said, her family participates each year in the annual Walk Now for Autism Speaks to help fund research.

“We walk because the number of children diagnosed with autism is increasing,” Schwartz said. “When Perri was diagnosed four years ago it was one in 166 children. Now it’s 1 in 110. That’s not acceptable.”

A 2009 analysis by the Autism and Developmental Disabilities Monitoring Network revealed that 1 in 70 boys and 1 in 310 girls nationally has autism.

The numbers are even higher for Georgia, where one in 98 children has autism, said Dr. Amy Pakula, clinical director of diagnostic and evaluation services at the Marcus Autism Center in Atlanta. For boys, the number is one in 60; one in 294 for girls; and one in 83 white children compared to one in 105 African-Americans.

“I’m hard-pressed to think of another condition that has that same prevalence,” she said.

Although a complete explanation for the rise remains elusive, Pakula said part of it is due to a change in the definition of autism, improved surveillance and diagnosis.

Schwartz said their daughter was diagnosed at age 2, when she started to worry that something was wrong with Perri’s language development.

“She never asked any questions, never said words like hungry, thirsty, tired,” she recalled.

Schwartz took her daughter to an early intervention specialist, who suspected Perri might be autistic and urged her parents to get a diagnosis. On May 9, 2006, doctors confirmed their suspicion.

“It was heartbreaking,” said Janel Schwartz.

Although Perri, now 6, still has challenges, they are no bigger than the ones she faced four years ago, her mother said.

“Her intellect is vast. Her cognitive skills are tremendous,” Schwartz said. “But her communications skills can’t keep up, so she gets very frustrated because she can’t process things the way other kids do.”

When autism was first described in 1943, the blame often was assigned to emotionally distant mothers who failed to properly bond with their babies. Today, genetics and environment are considered among the causes, Pakula said.

In addition, she said, autism is no longer considered a single disorder but a diverse group of autism spectrum disorders.

“I almost think of it as a syndrome,” Pakula said. “It is the end result of a number of different pathways.”

Pakula is working with Emory genetic researchers to collect family data to learn more about the genetics of autism. Schwartz said next month’s walk not only helps funds research like this but raises money for advocacy and treatment.

Because of the services offered at the Marcus Autism Center and the support of Autism Speaks, Schwartz said her family can see the possibilities for Perri’s future. It used to be, she said, that their daughter never told them she loved them and when they told her, her response was thanks.

“This year for the first time she told my husband and I she loves us,” Schwartz said. “For us this was like the greatest gift.” And one more reason, she said, this walk will be particularly special.

Walk Now for Autism Speaks

Registration opens at 8 a.m. and walk starts at 10 a.m. Sunday, May 23 at Atlantic Station. For more information: www.walknowforautismspeaks.org/Georgia or call 770-451-0570.