Study: Autism strikes 1 in 150
Isaac and Jacob Smelser are active, blond 8-year-old twins who are perfect spellers, great at baseball and video game whizzes.
But they don't make eye contact and can't carry a conversation.
"They never really said 'Mom' and 'Dad' and didn't associate with other kids, but the doctors said it was a twin thing," said their mother, Kim Smelser, of Richland. "By the time they were 2 1/2, we knew it wasn't a twin thing, and when they were 4, they were finally diagnosed with autism."
The boys are among more than half a million children -- or one in every 150 -- nationwide who have some form of autism, the Centers for Disease Control and Prevention announced Thursday. It is the highest number to date that the CDC has used to quantify the prevalence of the neurological disorder.
The Pennsylvania Department of Public Welfare, which provides assistance to individuals with autism, does not know how many people in Pennsylvania have the disorder. The Autism Society of Pennsylvania estimates there are about 75,000 people statewide with a form of autism and about 4,000 in the Pittsburgh region.
The national numbers are based on two CDC surveys encompassing 22 states, including Pennsylvania. The studies represent the largest and most comprehensive reviews of how many children have autism, previously estimated at one in every 166 children.
"Sadly, it didn't surprise me at all," said Karl Smelser, Isaac and Jacob's father and executive director of the Advisory Board on Autism & Related Disorders, an Etna-based advocacy group. "I don't believe one in 150 is even the number. Sadly, it might be one in 140, one in 130."
One survey of eight states looked at children who were 8 years old in 2000. The other looked at children in 14 states who were 8 in 2002. In most cases, the data were gathered from a few counties in each state. In Pennsylvania, data were from Philadelphia County.
The study does not include some of the most populous states, such as California, Texas and Florida.
The rates varied from state to state, from one in 303 children in Alabama, to one in 94 in New Jersey. In Pennsylvania, the rate is about one in 190.
By comparison, the rate of asthma is one in every eight children, while leukemia is one in every 24,390, according to the CDC.
The CDC autism study does not say whether autism is increasing or if the rates are increasing because of more comprehensive diagnoses. The study encompassed all children diagnosed with an "autism spectrum disorder," ranging from autism, which can severely disable a child by interfering with speech and behavior, to Asperger's syndrome, a milder behavioral problem.
"We can't make conclusions about trends yet," because the study's database is too new, said Catherine Rice, a CDC behavioral scientist who was the study's lead author.
Dr. Nancy Minshew, a University of Pittsburgh Medical Center psychiatrist who specializes in autism, said the rate is probably higher than the CDC study found. She said that because the study relied on data from public schools, it missed home-schooled children and those in private schools.
"Don't be surprised if they come out with another study in a few years and the rate is one in 100," she said.
Minshew said it is important to get an accurate picture of how many people have some form of autism in order to provide enough social and economic support for families affected by the disorder.
The state Department of Public Welfare announced this week that it has created a Bureau of Autism Services to provide expertise and support for all state agencies that serve Pennsylvanians with autism.
"That was a tremendous thing," said Dan Torisky, president of the Autism Society of Pittsburgh and secretary of the Autism Society of Pennsylvania.
"As a result of this, we're going to be able to build now and improve the services for autism. Up until now, the services for individuals with autism, especially adult-age individuals, were nonexistent. Now, with this new bureau, we're going to be able to look to improve adult services and services for social training."
The study was not an effort to find the cause of autism, which is still a point of debate. While many advocacy groups blame the vaccine preservative thimerosal, scientists are putting more focus on possible genetic causes, according to a recent Stanford University study.
Some advocates suspect environmental causes.
"This is a case of increased exposure or increased influx of toxic substances into everything," said Torisky, who has an adult son with autism. "Any time there's a new chemical or additive added, it does something to the immune systems of individuals."
Red flags for autism spectrum disorders
Autism spectrum disorders are neurological disorders that cause significant impairments in social interaction and communication.
Symptoms usually appear during the first two to three years of life. Autism is estimated to be four times more prevalent in boys than girls.
Research shows that if children with the disorder get treatment early -- preferably by the age of 3 -- their social and communication impairments can be lessened.
According to the Centers for Disease Control and Prevention, children and adults with an autism spectrum disorder might:
• Not look at objects when another person points at them.
• Have trouble relating to others or not show an interest in other people.
• Avoid eye contact and want to be alone.
• Have trouble understanding other people's feelings or talking about their own feelings.
• Prefer not to be held or cuddled.
• Appear to be unaware when other people talk to them but respond to other sounds.
• Be very interested in people, but not know how to talk to, play with or relate to them.
• Repeat or echo words or phrases in place of normal language.
• Repeat actions over and over again.
• Lose skills they once had, such as language.
