What the latest report from the CDC does—and doesn’t—tell us
By RACHEL POMERANCE
Although National Autism Awareness Month doesn't officially start until Monday, the campaign got a jump-start last week with the finding that autism spectrum disorders, or ASDs, affect 1 in 50 American children, according to the Centers for Disease Control and Prevention.
Characterized by difficulty communicating and socializing as well as repetitive behaviors, autism is a neurological disorder that exists on a spectrum, hence the term ASD; on the mild end is Asperger's syndrome, in which social skills may be affected, but rarely intelligence and language, while "classic" autism can mean substantial problems with communication and other behaviors.
The numbers released last week mark a significant increase from the CDC's previous report on the issue, which last year put prevalence at 1 in 88 children. However, these figures can't be compared, the CDC says. "These reports use different methods to answer different questions about autism," CDC representatives said in an e-mail to U.S. News. "Both reports help paint a more complete picture of autism in our nation."
Last week's report comes from the agency's 2011 National Survey of Children's Health, conducted among parents of children between the ages of 6 and 17. The previous report, and the one that the CDC considers its official data set, comes from the CDC's Autism and Developmental Disabilities Monitoring (ADDM) Network, which uses health and special education records from 14 U.S. communities to estimate the number of affected 8-year-olds, the age by which most children with an ASD have been identified for support.
In either case, the data shows skyrocketing reports of these disorders among children, with boys four times as likely as girls to be diagnosed. The extent to which these rates reflect a better understanding and, thus, diagnosing of these conditions is unknown, but "a true increase in the number of people with an ASD cannot be ruled out," the CDC says on its website.
Despite better detection, "at least half of the increase in prevalence is unexplained," says Michael Rosanoff, epidemiologist and associate director for public health research at Autism Speaks, a research and advocacy group. For his part, Rosanoff wasn't surprised by the report. "We're underestimating the magnitude of this public health challenge," he says.
For Scott Badesch, president and CEO of the Autism Society, a grassroots advocacy group, it's good to know the statistics; it's better to do something about it with services he says are in high demand and short supply. People with disabilities may wait up to 10 years for services that can teach them critical life skills, he says, and notes that 70 percent of disabled people of working age are unemployed. "We are denying as a nation a significant number of people the opportunity to enjoy life to the fullest," he says.
And yet, investment in services pays off. When it comes to autism, for example, "at one end, you have an individual who may require 24-hour support and help, who may need constant monitoring and watch; at the other end is someone who may not need any services, who's gainfully employed," Badesch says. Regardless, "study after study shows that people could advance to a higher level, no matter where they are on that spectrum."
What's behind the rising reports of autism is yet unknown, but involves some interaction between genetics and the environment, according to Rosanoff.
In the meantime, early detection is critical for finding care that can drastically improve one's quality of life. He advises parents to take note should their children fail to express the following developmental behaviors:
- Smiling or expressing joy by the age of six months;
- Babbling by 12 months;
- Gesturing, pointing, waving or reaching by 12 months;
- Fully formed words by 16 months; or
- The loss of any of these skills.
Access to an early intervention program like the Early Start Denver Model can bolster intellectual ability and social behaviors, Rosanoff says. But services are needed throughout the lifespan and some can be provided by parents, he says. Among the resources featured on Autism Speaks' website are "tool kits" for visiting the dentist, getting haircuts, aiding in the transition from adolescence into adulthood and finding employment.
"A lot of people with autism are spectacular performers if people give them the accommodations they need to succeed," says disability advocate Jennifer Laszlo Mizrahi, who's based in the Washington, D.C., area.
Mizrahi, who has a child with a disability and herself struggled with dyslexia—unable to read until the age of 12—formed a consulting company that pulled in $1 million a year and boasted clients that included the White House and six incumbent prime ministers. For her part, it was easier to run her own company and hire others to handle areas that were more challenging for her.
"It doesn't matter if you have autism or Down syndrome or any one of a number of other things. You need somebody to look at you as an individual, find your strengths, help you build upon your strengths" and "help you figure out how to compensate for your weaknesses," she says. "It's a miserable existence where you basically just watch TV all day and you're nonproductive, and it's very demoralizing for people who want to work, who are capable of working."
For more information about identifying and caring for someone with autism, visit the websites of the CDC, the National Institutes of Health, Autism Speaks, the Autism Society and the Autism Research Institute.