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Friday, March 28, 2014

More on the CDC Report

CDC's new estimate of autism prevalence is generating a good deal of commentary.

From CNN:
The earlier a child is diagnosed with autism, the better their chances of overcoming the difficulties that come with the disorder.

"It's not a cure, but it changes the trajectory," says Dr. Gary Goldstein, president and CEO of the Kennedy Krieger Institute and professor of neurology at Johns Hopkins University.
"We need to continue our efforts to educate the health care community and general public to recognize the developmental problems associated with ASD and other developmental disorders at earliest age possible, so that intervention can be initiated, bad habits can be avoided and families will know what's wrong with their child," says Dr. Max Wiznitzer, a pediatric neurologist at Rainbow Babies and Children's Hospital in Cleveland who diagnoses and treats children with autism.

...[E]xperts such as Wiznitzer and Goldstein are concerned that the new CDC report is not describing the same autism that was present and diagnosed 20 years ago, when the numbers first shot up.
"Twenty years ago we thought of autism with intellectual disability. We never looked at children who had normal intelligence" -- doctors never considered that high-functioning children had autism too, says Goldstein.
Wiznitzer believes written reports can't definitively determine whether a child has autism. You need to see the child to complete a diagnosis, which the CDC experts did not have the opportunity to do.
"This report tells us that there's a significant number of children in the states where they were assessed that have social differences and a pattern of behaviors that can be represented by ASD, but may also be due to other conditions that superficially can have similar features, such as social anxiety, ADHD with social immaturity and intelligence problems," he says.
The Philadelphia Inquirer reports:
A new federal report shows yet another increase in the percentage of children with autism, with New Jersey having the highest rate of 11 states studied.

Walter Zahorodny, an epidemiologist and psychologist at Rutgers New Jersey Medical School who directed data collection in New Jersey, said the new report should put to rest the argument over whether the increase in autism diagnoses stems from growing awareness or reflects growing numbers of children with the disabling condition.

"It's a true increase," he said. "It's a change of great magnitude. It's silly to go on debating that." He expects the numbers to climb higher before they plateau.

Jennifer Pinto-Martin, an epidemiologist in the University of Pennsylvania School of Nursing who worked on previous versions of the report, is not so sure. While the CDC has been using the same definition for many years, she said, changing attitudes have made it easier to get the diagnosis.

Both agreed that one reason New Jersey's numbers are high is that the state has particularly good record-keeping and services.
Autism Speaks reports:
During a press conference hosted by Autism Speaks following the CDC announcement, Senate and House leaders called for the reauthorization of the Combating Autism Act (CAA) and enactment of the ABLE Act to help address the "aging-out" issue as an estimated 500,000 children mature into adulthood over the next 10 years.
Enacted in 2006 and reauthorized in 2011, the CAA has dedicated $1.7 billion in federal funding for research through the National Institutes of Health, the prevalence monitoring conducted by the CDC, and detection training through the US Department of Health and Human Services. The law will expire September 30 unless Congress acts.
The ABLE Act, (Achieving a Better Life Experience Act), would allow the creation of tax-free savings accounts for individuals with disabilities to provide for their housing, transportation, job support, education and other needs. The legislation has extraordinary support with 70 cosponsors in the Senate and 350 of the 435 House members.
"To my mind, it’s a clarion call to continue -- in fact increase -- our efforts on the federal level into research and services and support for individuals with autism and their families," said Sen. Robert Menendez (D-NJ), the Senate sponsor of the 2011 CAA reauthorization, during the Autism Speaks press conference.
"I hope we can think about at least creating some new opportunities" in the new CAA reauthorization legislation, Menendez said. "This aging out question is a critical question for families across (New Jersey) and across the country. The challenge on the autism disorder spectrum doesn’t stop at age 18 or 21. It continues."
The House sponsor of the 2011 reauthorization bill, Rep. Chris Smith (R-NJ), also demanded action
"The information is not just disturbing, it is numbing," Smith said. "Statistics are sometimes bandied around Washington and people pay scant notice to it. But this ought to mobilize not just the federal government, but state governments and local governments to work in partnership."