Beth Bullen, a 44-year-old registered nurse in Caledonia, N.Y., is no stranger to autism spectrum disorders, or ASD. Her 10-year-old son has a severe form of autism, while her 13-year-old son has Asperger's syndrome.
"How they wrote, how they organized, their handwriting, their delay in crawling and walking -- that's when bells and whistles started going off," she said. "My oldest son didn't walk until he was 2, and didn't crawl until he was 15 months old. My younger son was majorly speech delayed."
So when the U.S. Centers for Disease Control and Prevention released a report on Friday stating that almost 1 percent of American children had ASD, she said she was not shocked by the numbers.
"I don't think any of us parents are surprised, because I don't think what's common knowledge is that there are quite a few families that have children on the autism spectrum," Bullen said. "I have talked to families who have children with 3 or 4 children on the spectrum. I think we all know someone who is on the autism spectrum."
But while some parents might not have been shocked, those in the medical community say the numbers give pause.
"These numbers always sort of take our breath away," said Dr. Janet Farmer, professor and director of academic programs at the Thompson Center for Autism and Neurodevelopmental Disorders at the University of Missouri. "I think those of us in the scientific community are quite shocked by this."
The report, based on data collected by the CDC's Autism and Developmental Disabilities Monitoring Network in 2006, tracked prevalence of autism spectrum disorders in children 8 years of age from 11 areas of the U.S., including parts of Alabama, Arizona, Colorado, Florida, Georgia, Maryland, Missouri, North Carolina, Pennsylvania, South Carolina, and Wisconsin.
Health and education records were reviewed to identify children with ASD, including autistic disorder, pervasive developmental disorder not otherwise specified, and Asperger disorder.
For more information on autism, click here.
Autism Estimates Still on the Rise, CDC Report Suggests
What the report found was that across 11 sites in the United States, ASD prevalence in 2006 ranged from about one out of 80 children to one out of every 240 children, with an overall prevalence of one in 111 youngsters.
The findings appear in the Dec. 18th Morbidity and Mortality Weekly Report.
The overall estimate is slightly lower than that from a study using data from the 2007 National Survey of Children's Health -- one in every 91 children -- published just last October.
However, among 10 sites that reported data in both 2002 and 2006, there was an average 57 percent increase in ASD prevalence. No single factor could explain the rise, researchers said.
The new report also found that overall ASD prevalence was 4.5 times higher in boys than in girls: about one in every 70 boys and one in every 315 girls. From 2002 to 2006, prevalence increased 60 percent in boys and 48 percent in girls.
The researchers acknowledged that some of the increase could be attributed to better detection – but they added that the numbers also suggest that the overall increase cannot be attributed to detection alone.
ABC News Senior Health and Medical Editor Dr. Rich Besser said on "Good Morning America" Friday that, unfortunately, doctors and researchers are not much further along in their understanding of the underlying causes of this apparent surge.
"When you talk to scientists who study this area, there's factors related to genetics, and there's factors related to the environment," Besser said. "But no one really understands what's driving this increase in autism."
Besser said that for now, most states are not well equipped to help families dealing with autism.
"There are only 10 states that require that all insurers provide for children with autism," he said. "There are two dozen more states that are looking at implementing laws in that regard. But [care] is very intensive. Teaching of the children requires services that may cost up to $50,000 upwards a year."
More Services, More Funding for Autism Families
Besser added that in some cases these services – particularly early detection and treatment -- can lead to profound improvements in children with ASD. Dr. Shlomo Shinnar, professor of Neurology, Pediatrics and Epidemiology and Population Health at Montefiore Medical Center in New York, agreed.
"This should reinforce the Academy of Pediatrics recommendations that all children be screened for ASD as part of their health care," Shinnar said, adding that such screening is "especially important, as early recognition and treatment improves outcomes.
"It really needs to be part of the assessment of a child, particularly of a child who appears to have language [and/or] communication issues."
And Dr. Susan Hyman, chief of Neurodevelopmental and Behavioral Pediatrics at the University of Rochester's Golisano Children's Hospital and chair of the AAP's Autism Subcommittee, said she is hopeful the findings could affect research funding for the conditions.
"More epidemiologic research needs to take place," she said, adding that the research is "expensive but important."
It is in these regards that some hope the new numbers will be a boon to families -- and it appears that autism is already getting more attention on the funding front. In a teleconference reporting the October findings, Dr. Tom Insel, director of the National Institute of Mental Health, said President Barack Obama has proposed an increase in funding for autism research from $42 million this year to $48 million next year.
But autism awareness groups will likely use the findings of the report to push for more. Responding to the report, Lisa Ackerman, executive director of the advocacy group Talk About Curing Autism (TACA), said in a statement that the group "strongly believes that we have a national epidemic on our hands that is not being adequately addressed." The rapidity with which the prevalence of ASD is increasing, the organization said, points to an environmental cause for the disorders.
Families Push for More Autism Research
"Therefore," the statement read, "we need to explore and research the environmental triggers that are affecting our children at approximately the same time in their lives -- regardless of race and ethnicity."
Kim stagliano, managing editor of AgeofAutism.com and herself a mother of three children under 16 with autism, said the government must do much more to help families like hers.
"H1N1 got worldwide attention and billions of dollars in less than six months," Stagliano said. "Autism rates continue to climb, and we're virtually ignored."
Bullen, for one, believes that the more the research community can learn about autism spectrum disorders – and why they are so common – the more families will be able to do in order to ensure that their children can contribute to society.
"Even though they may be autistic, they are aware of wanting to be productive," Bullen said. "My younger son says, 'When you leave high school, you go to college.' So he wants to be productive."