Monday, April 22, 2013
Dear Ms. Falco:
We are writing in response to your article, “CDC: Higher Number of Children with Autism” (March 30, 2013) with interest and commend your coverage of a critically important topic: the growing population of Americans diagnosed with an autism spectrum disorder (ASD). We applaud you for your straightforward reporting of current research results with comparison to a previous CDC study released last year, the clear explanations you provided about the caveats of the research, and the array of experts and scientists whom you interviewed. The current CDC results estimate the prevalence of American children diagnosed with an ASD at one in 50, whereas the previous study put the prevalence at one in 88 children. This impacts an enormous segment of our country’s population and as such, one suggestion that we offer would be to provide your readers with additional information about evidence-based treatment.
The latest CDC report is drawn from the results of a telephone survey administered to the parents of children ages 6 to 17 who opted to provide answers. These results, which suggest that one in 50 school-aged children have ASD, were collected in such a way that there is a potential for sampling bias. In this particular case, a self-selection bias may have occurred, as parents could choose whether or not to participate. This possibility was raised by neurologist and autism expert, Dr. Max Wiznitzer, who said, “If your child has a problem, you’re more likely to respond,” which may have led to a non-representative sample.
Dr. Wiznitzer stated his concern that the results “will be interpreted as a true rise in the prevalence of autism when all we’re talking about is a label that has been given at some time in a child’s life.” Others, such as Michael Rosanoff, associate director for public health research and scientific review for Autism Speaks, believe this latest report provides evidence to the contrary: that the number of children with ASD has been previously underestimated. Zachary Warren, director of Vanderbilt University’s Treatment and Research Institute for Autism Spectrum Disorders, speaks to these conflicting views, stating that the field of autism faces a struggle with the problem of over-identification and under-identification. It is important for readers to appreciate that there has been a significant decrease in the number of children diagnosed with intellectual disabilities over the last few decades--a trend that has occurred simultaneously with the increase in children being diagnosed with an ASD. Given these trends, it is plausible that misdiagnoses can account for a portion of the increase in autism diagnoses.
Prior to this, the CDC had reported the prevalence of ASD to be one in 88 children. This report was based on data collected by reviewing the medical and educational records of all 8-year-olds living in 14 areas of the United States during 2008. These two studies are very different: one looked at medical/educational records and the other at parent reports. As such, Stephen Blumberg, health scientist with the CDC’s National Center for Health Statistics says he can’t say which prevalence study is more accurate. What we do know is that whether it is one in 88 or one in 50 children, this represents over one million Americans and this increase will have implications for those children and their families, as well as for the health care providers and the educational system in this country.
We thought it was wonderful that you included Zachary Warren’s suggestion that "we need to find a way to standardize identification of children with autism and then translate it into effective treatment." We agree with this notion, and would add to that that the inclusion of funding programs that will train and educate service providers in both the health care and educational systems on the use of evidence-based procedures for supporting the ASD population, as well as those children for whom there are significant development concerns. This would have been an excellent opportunity to provide information for your readers about the importance of early diagnosis and the use of scientifically validated treatments, such as Applied Behavior Analysis (ABA)--methods that are individually tailored to the child.
Autism treatment research clearly demonstrates that with early detection and diagnosis, significant improvements in the overall development of the child can be achieved. The science of ABA has over 40 years of research to support its use for treatment with individuals with autism and has been endorsed by a number of state and federal agencies, including the U.S. Surgeon General and the New York State Department of Health. The skillful implementation of these techniques by certified behavior analysts can improve the lives of individuals and their families in meaningful and important ways by teaching basic skills such as looking or imitating, as well as complex skills such as reading and interacting with others and can help to decrease maladaptive behaviors. Again, these methods are not restricted to the treatment of autism.
Your article has helped to generate awareness among your readers about the increased prevalence of ASD in the United States. This awareness is essential as it promotes early detection and diagnosis, which as discussed earlier is critical. Unfortunately, the path from diagnosis to treatment is unclear, and families often have to sort through upwards of 400 pseudo-scientific treatments until they discover ones that are most effective in addressing ASD. Dissemination of information about effective treatment, such as ABA, may result in an increased awareness of and access to evidence-based practices that improve outcomes for individuals with autism. Including and explaining these areas would have improved the message of the article by demonstrating that there is scientifically validated information available regarding the treatment of autism.
Thank you for an excellent article. We encourage you to access information pertaining to evidence-based autism treatment when preparing future articles about autism prevalence. When media journalists continue to raise awareness and provide sound information about autism treatment effectiveness, parents can become more well informed and savvy consumers, and children with autism benefit from intervention.
Elizabeth Callahan, B.A., BCaBA and David Celiberti, Ph.D., BCBA-D
Association for Autism in Science Treatment
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