A recent study in the July 2021 issue of the Journal of Autism and Developmental Disorders has prompted outrage among many autism researchers.
Every researcher on the study (a study focused on autism prevalence and related costs in the US over the next 40 years) has connections to organizations that have wrongfully tied autism to vaccines. This is a conflict of interest that none of the researchers on the study properly disclosed.
About the Researchers
Mark Blaxill, the study’s research lead, is editor-at-large of Age of Autism, a website that promotes distrust of vaccinations and the long-debunked link between vaccines and autism. Blaxill has made national news for his anti-vaccine views.
Toby Rogers, a study co-investigator, is a political economist. Rogers has written for the Children’s Health Defense Fund, a website that seeks to discredit vaccine safety. Another co-investigator, Cynthia Nevison, is a research associate at the University of Colorado and a former board member of SafeMinds, an organization that has unsuccessfully sought to link vaccines to autism.
“It’s abundantly clear that this paper doesn’t follow the journal’s policies,” says David Mandell, associate professor of psychiatry and pediatrics at the University of Pennsylvania and editor-in-chief of the journal Autism. “If you reference the Journal of Autism and Developmental Disorders’ conflict-of-interest guidelines, it says that certain ideological commitments and personal beliefs, personal relationships, all those things have to also be disclosed.”
The failure to properly disclose ties to certain organizational interests has led many researchers to disregard the study. The study researchers mentioned they are not paid to write articles or publish studies for politically motivated organizations in defense of the study.
Misrepresentation of Data
Autism prevalence data from the state of California was used to forecast that 3 to 10 percent of children in the United States will have autism by the year 2060. Based on this figure, the study mentioned the future societal cost of autism could be as high as $5.5 trillion per year. A third analysis claimed to model how prevention might reduce autism prevalence in the future.
Outside researchers say the data is flawed “because it was calculated by looking at really old data, comparing it to new data, and then assuming an exponential function.” Many researchers mentioned this issue as numbers that increased exponentially due to two totally different sets of data will always be too large.
One outside researcher noted “The rise in autism prevalence in recent years can be attributed to better observation and increased diagnosis on the community level. The base rate of autism isn’t magically rising because there’s some toxin that causes it, which is the underlying assumption [the paper’s authors] have.”
Prevention calculation in the study also used “magic numbers,” says Madison Hyer, a biostatistician at Ohio State University’s Wexner Medical Center. “Magic Numbers” means it isn’t clear what the word prevention means or even what’s being measured. “Are they saying that this is the cost of supporting or treating individuals with autism across their life in some way? Or is this the cost above the cost of supporting someone without autism? Everybody costs something.”
Outside Researchers on Prevention Prediction
Other comments from outside researchers mentioned “[the study] made some really severe assumptions about productivity … It looks like they were assuming anybody with autism would have zero productivity, but many people with autism work.”
Many outside researchers without organization ties observe that some people with autism may have disabilities and challenges, but that we as a society should think about how to support them. They’re still quite productive members of society.”
Some outside researchers noted that some of the data used to calculate productivity may have also come from questionable sources, says Kristen Bottema-Beutel, associate professor of teaching, curriculum, and society at Boston College in Massachusetts. “The data they use appears to be from a non-peer-reviewed PDF.”
“The Journal of Autism and Developmental Disorders was established in 1971, and its first editor-in-chief was Leo Kanner, one of the first clinicians to describe autism. Some researchers say the new study has diminished their perception of the journal, which has an impact factor of 3.047. (A journal’s impact factor reflects how often its articles are cited.)”
“[This paper] makes me question the peer review process,” says Brittany Hand, assistant professor at Ohio State University in Columbus, who also wrote a letter of protest to Volkmar. “How in the world does something like this get past [peer review]?”
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Sources
Spectrumnews.org, Community Letter
The Journal of Autism and Developmental Disorders, July, 2021