Trend Story
By Sam Grossman

As a toddler, Dawson Sidler hid under furniture and fidgeted during church. At basketball games, the shrill sound of the buzzer irritated him to the point of tears. His parents just thought he was a little different.

One day, when Dawson was 4, he accompanied his mother to the doctor’s office for his brother’s checkup. But the doctor instead turned his attention to Dawson, who was cowering beneath a chair in the corner of the room. The doctor’s concern led him to refer the Sidlers to a child neurologist.

Then the reason for Dawson’s unusual behavior became clear. He had autism.

One in every 150 American children is diagnosed each year with autism, a developmental disability first identified in 1943 by Dr. Leo Kanner of Johns Hopkins Hospital. It impairs social interaction and communication and causes a strong need for rigid routines and repetitive behaviors. Autism is four times more likely to occur in boys than girls and its symptoms range from mild to severe.

In recent years, the number of cases of autism has increased dramatically. According to a study conducted by the Autism Society of America, the number of cases in the United States grew 172 percent in the 1990s.

The cases among children have increased even more. According to the Department of Education, the number of children ages 6 to 21 diagnosed with autism grew 435 percent from 1993 to 2000.

In Pennsylvania, the number of diagnosed children of the same age grew 682 percent during that time, causing increasing concern about the disorder and its rapid growth. Now, concern has turned into action.

Dennis O’Brien, speaker of the Pennsylvania House of Representatives, has been involved in what he refers to as the “autism avalanche” for about 20 years, said Bill Patton, a press secretary for O’Brien’s office.

“He believes that autism has always been there, but the numbers are going up because people and learning more and recognizing the symptoms,” Patton said.

In April, O’Brien sponsored House Bill 1150, which requires insurance companies to provide up to $36,000 in yearly expenses for those with autism ages 21 and under. These expenses would include diagnosis and other necessary medical services. Any further treatment that exceeds that amount must be covered by the state, the bill says.

The House of Representatives passed the bill unanimously on July 14, and it is awaiting approval from the Senate.  

O’Brien believes that the number of cases of autism will continue to rise, and he will continue to fight for the cause.

“This bill is just one part of the battle,” Patton said.

The efforts of advocacy organizations and legislators such as O’Brien have cultivated an increased amount of media attention and public interest in the past 10 to 15 years, said Dr. Andy Shih, vice president of scientific affairs of Autism Speaks. The New York-based national organization aims to change the future for those with autism by fundraising, researching and raising awareness.

But has there really been an autism epidemic? Or have increased awareness, better diagnostic capabilities and criteria, and the recognition of more mild forms of autism simply led to more diagnoses of people who would not have been diagnosed in the past?

“I’m waiting for more scientific evidence to help me understand this question better,” said Jean Ruttenberg, executive director of the Center for Autism in Philadelphia, the oldest autism treatment center in the country.

Children who are diagnosed with mild cases of autism today, such as Dawson, probably would have just been called “loners” or “antisocial” 20 or 30 years ago, Shih said. The common thread among autism patients is a difficulty in dealing with social interaction, he said.

“Dawson’s main problems are language and socialization,” said his mother, Lorraine Sidler, of Yorba Linda, Calif. “But he can focus. He’s really smart. Twenty years ago, I highly doubt that he would have been diagnosed. They used to just call these kids slow learners.”

Many professionals agree that the real cause of the supposed autism epidemic cannot be explained based on current research.

Autism Speaks put $25 million into research last year in attempts to determine the answer, said Dana Marnane, director of communications and marketing.

Despite the lack of definitive answers, the organization believes that its time and money have not been spent in vain.

“We’re going to figure it out some day,” Marnane said.

A large part of the problem, experts say, is the lack of concrete evidence provided by research.

“All evidence is behavioral, not biological,” Shih said. “But what we do know is that there has certainly been an increase in diagnoses—more than ever in history.”

Dr. Margaret Bauman, cofounder of the Autism Research Foundation in Boston, said the increasingly broadened definition of autism and the subjectivity of diagnosis have both affected the rise in the number of cases.

“There is no blood test or X-ray. It’s always somebody’s clinical judgment,” she said.

Bauman also attributes the increasing number of diagnoses to the fact that more parents are understanding and accepting autism.

“In the ’70s, parents were frightened,” she said. “But now, more parents understand that it will get their kids help.”

Some parents, such as Stacey Groder of Yardley, Pa., not only accept their children’s autism, but want to do as much as possible to raise awareness and help others who struggle with it as well.

Groder, who serves on the board of directors of the Autism Society of America’s Greater Philadelphia Chapter, has been invested in the cause ever since her son Jared was diagnosed seven years ago.

“When he was first diagnosed, it was absolutely devastating,” Groder said. “But since then, every day, I’m learning. It’s an ongoing process.”

By the time Jared was about 16 months old, Groder noticed that something was wrong. Four months later, he stopped eating for three days. By age two, he completely lost the language ability he had started to develop.

“I was praying it would be a hearing problem, or dyslexia,” Groder said. “But I think I knew in my heart that it wasn’t. I think when you’re a mom, you know when something’s wrong with your child.”

Groder agrees that the number of diagnoses have skyrocketed, and she doubts that Jared would have been diagnosed 20 or 30 years ago.

“Maybe back then, he would’ve been diagnosed with mental retardation,” she said. “But he’s not mentally retarded. He’s just a different type of intelligent. It’s hard to explain that to people.”

Groder and Sidler share similar concerns and goals for their children.

“My main concern is that I want Dawson to be independent when he’s older,” Sidler said. “I’m not sure if he’ll ever be able to get a driver’s license.”

According to Shih, it is parents like Groder and Sidler, who are trying to learn and understand as much as they can, who are “taking the lead” on this issue and giving their children the love and support they need.