A new study recently published in Frontiers in Pediatrics1 provides evidence challenging one of the biggest myths about the autism epidemic among children, which is that “better diagnosis” is entirely responsible for the substantial increase in the diagnosis of cases of autism and pervasive developmental disorder (PDD) over the past three decades.
The study, “A prospective Longitudinal Assessment of Medical Records for Diagnostic Substitution among Subjects Diagnosed with a Pervasive Developmental Disorder in the United States,” independently analyzed Vaccine Safety Datalink (VSD) data2 that has been extremely difficult to obtain from the U.S. Department of Health and Human Services until recently.
Study authors concluded that “diagnostic substitution cannot fully explain increased PDD prevalence during the 1990s within the United States.” Comparing children diagnosed with mental retardation (MR) or cerebral palsy (CP) and PDD in the VSD database, their research revealed major differences between the MR and CP populations and the PDD population:
- the PDD population had significantly more males than females, while the MR and CP populations had a 50/50 male/female ratio;
- the PDD population had a delayed mean age of diagnosis (between 2 to 4 years old) while the MR and CP populations mean age of diagnosis was before age two;
- the PDD population lacked significant health problems at birth while the MR and CP populations exhibited significant health problems at birth.
“Better diagnosis” is one of the most cited reasons in published research for increased rates of autism in children. With this prevailing view, parents are essentially made to feel they are helpless in preventing this disorder from occurring and there is no hope for a cure.
The study was made possible because of the persistent efforts of researchers unaffiliated with industry or government to gain access to the same data sets used by public health officials at the Centers for Disease Control (CDC) that, up until now, have not been made available to independent researchers. The lack of transparency and accessibility to data has hampered research, discussion and discovery of important information about why the U.S. has gone from zero cases of autism before the 1940’s to over one million cases3 in the last 75 years.
As most of these 1 million+ children transition from being financially and physically cared for by their parents to becoming an obligation of the public safety net, i.e. Medicaid and Social Security Disability, the enormous social and financial cost must be acknowledged. How we take the responsible next steps to analyze changes in children’s environmental and medical exposures, which could account for a large portion of the dramatic increases in autism and PDD, will have a profound impact on whether we are successful in addressing this public health crisis that now is estimated to affect 1 in 68 children.
It took four decades—from the 1940’s to the 1980’s—to discredit the cruel allegation that “refrigerator” mothers caused autism by failing to properly nurture and care for their children. Since then, “better diagnosis” has been the block-and-tackle rationale used by public health officials and many doctors to explain the unexplained increase in cases of autism, discouraging further research into real causes and potential biomedical treatments.
As we head into this political season where it appears autism will be a topic of some discussion, hopefully this very important study will add context to the information we get from the media reporting on the autism epidemic.
Note: This article was reprinted with the author’s permission. Claire Dwoskin is founder and president of the Children’s Medical Safety Research Institute (CMSRI). This study was supported in part by a grant from the Dwoskin Family Foundation to investigate potential causal factors underlying the chronic disease and disability epidemic in America.
1 Geier D, Kern J, Hooker B et al. A Prospective Longitudinal Assessment of Medical Records for Diagnostic Substitution among Subjects Diagnosed with a Pervasive Developmental Disorder in the United States. Front Pediatr Sept. 25, 2015.
2 Institute of Medicine Review of the National Immunization Program’s Research Procedures and Data Sharing Program. Vaccine Safety Research, Data Access AND Public Trust. The National Academies Press 2005.
3 Associated Press. 1 in 68 Children, or 1.2 Americans, Have Autism. Fox News Mar. 26, 2014.