By Michele Munz of The St. Louis Post-Dispatch
Area legislators and autism advocates hope new studies showing a jump in autism rates will spur more research into the cause and cure of the disorder as well as increase funding for treatment.
One in 91 children in the U.S. has autism spectrum disorder, according to a study released Monday (10/5/09) in the medical journal of Pediatrics. That smashes the previous estimate of one in 150 released two years ago.
The study was conducted by the U.S. Health Resources and Services Administration and involved a telephone survey of more than 78,000 parents. The new findings prompted the U.S. Centers for Disease Control and Prevention to release preliminary data from its more in-depth study due out later this year, which also indicate about 1 percent of children are affected with autism spectrum disorder.
Autism impairs a person’s ability to communicate and relate to others. It is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. It has no known cause or cure.
Research shows that early intervention can dramatically improve a child’s future, but therapy is expensive and time intensive. Insurance companies often don’t cover the cost.
Missouri legislators pushing for mandated insurance coverage of autism therapy hope the new numbers will make it easier for their proposals to pass.
“The longer you wait, the more kids are going to be left out. We have to deal with this head on, and insurance coverage is key to that,” said Sen. Scott Rupp, R-Wentzville, who two years ago, in response to the 1-in-150 statistic, created the state Autism Commission and Office of Autism to study how to best deal with the growing problem and help families navigate services.
Insurance companies are against a mandate, saying it will cause everyone’s premiums to rise. Increased intervention, however, may reduce long-term costs. Recent studies estimate that the lifetime cost to care for an individual with autism is $3.2 million, according to the information compiled by the CDC.
Several bills dealing with autism that have stalled in Congress may get new life. Sen. Dick Durbin, D-Ill., has proposed the Autism Treatment Acceleration Act to help those diagnosed gain better access to coordinated services, improve training for treatment providers and ease costs. “The information in this new report highlights the pressing need for additional services, support and treatments,” Durbin stated in a press release.
Government health officials urged caution in interpreting the rapid rise, which could be due to increased awareness, broader definitions of the disorder and how it is diagnosed. At the same time, the CDC website also stated the disorder is “of urgent public health concern, and these data affirm that a concerted and substantial national response is warranted.”
National autism advocacy groups called for more funding toward research and services. “Significant resources must be directed toward screening and diagnosis, affordable interventions that treat the whole person and comprehensive education plans to foster lifelong skill development so that people with autism will have the ability to live and work independently,” stated Lee Grossman, president of Autism Society.
Bob Wright, co-founder of Autism Speaks, also stated, “These new numbers should serve as a renewed call to action to take on what is clearly a major public health crisis.”
Amy Buie, the founder and director of the Center for Autism Education in O’Fallon, Mo., presents workshops across the country about autism.
She says the increase in autism rates is due in large part to the broadening of the definition of autism spectrum disorder, which now includes milder symptoms. Doctors are also more educated and able to identify these more subtle characteristics of autism, such as not able to look people in the eye or interacting.
But, Buie added, the disorder is also affecting more kids, especially boys. The national survey showed 1 in 58 boys has autism spectrum disorder.
“It’s twofold,” Buie said. “We have more kids with autism because we’ve widened the gap of who we are diagnosing, and then we are also seeing a rise in the actual numbers.”
The Center for Autism, which serves children on the severe end of the disorder, has gone from seven to 32 students since opening eight years ago, Buie said. The center has moved to a bigger facility, which is already inadequate. Three applicants were recently turned down.
“We are in the same situation that a lot of people are in … we are trying to serve as many kids as we can, and we are simply running out of space,” she said.
Dr. Kimberly Twyman is a pediatrician at the Knights of Columbus Developmental Center at Cardinal Glennon Children’s Medical Center, which assesses children for developmental delays. Twyman says the new statistic also reflects positive changes she has seen at the center: Children are diagnosed earlier, milder forms of the disorder are caught and pediatricians are doing better at identifying and referring patients.
“We are recognizing more children, and more children are getting the help they need,” Twyman said.
