There’s no autism epidemic. But there is an autism diagnosis epidemic

Is there an autism epidemic? No. The increase in the autism rate recently reported by the Centers for Disease Control and Prevention represent an autism diagnosis epidemic.

Writing in the weekly journal MMWR, CDC researchers reported that autism rates in the United States increased from 1 in 150 children in 2000 to 1 in 54 in 2016, and the rate now stands at 1 in 44 children.

Some argue that autism’s prevalence is rising because of environmental causes like vaccines. There is no evidence, though, for that explanation. Others argue that the rate is increasing because of the rising age of parents, especially fathers. This doesn’t explain the whole story, however, as increased paternal age accounts for only about 3% of the increase.

I believe that the rise in the autism rate is largely social, not biological. It’s not that more children are developing symptoms of autism, but multifaceted sociological and political factors are increasing the diagnoses and documentation of this condition condition over other developmental diagnoses.

The first of these factors was the rise of the deinstitutionalization movement. Starting in the 1960s, parent groups such as the National Association of Retarded Children advocated for the deinstitutionalization and normalization of children diagnosed with what was then called mental retardation. (The phrase “mental retardation” is offensive today, but I use it here because it was the technical diagnosis at the time). These parent groups partnered with therapists to develop new treatments for children that took place outside of institutions.

In his book “The Autism Matrix,” sociologist Gil Eyal explained that a diagnosis of autism fit the message of the deinstitutionalization movement better than mental retardation because the public believed that children with autism lagged behind only in some areas and could improve with behavioral therapies. In contrast, children with mental retardation were believed to lag behind in all areas and could not improve with therapy, justifying banishing them to institutions away from society.

As the deinstitutionalization movement took off, many children who would have been diagnosed with mental retardation were instead diagnosed with autism, not because the diagnosis was more accurate but because its treatment was preferable. As autism diagnoses increased, diagnoses of mental retardation and other learning disabilities decreased. More diagnoses and more patient advocacy led to more money dedicated to autism therapy and research, which in turn led to even more diagnoses. This trend has continued today as the number of psychiatric beds continues to decrease and parent advocacy groups successfully lobby to raise billions for autism research.

Another powerful factor behind the rise in autism rates is the passing of insurance mandates. Since 2001, all 50 states have instituted mandates requiring non-self-funded private insurance plans to cover behavioral therapies for autism. These mandates can save families up to $50,000 a year on treatment. The prevalence of autism increased an average of 10% directly following a state’s mandate implementation and 18% after a mandate had been place for a few years.

Insurance mandates increase autism rates because, in borderline cases, practitioners and parents push for a diagnosis that ensures a child receives coverage for the help the child and family need. The families of children with developmental disorders other than autism must often rely on broad laws such as the Individuals with Disabilities Education Act (IDEA), which vaguely states that each child must receive a “free and appropriate public education in the least restrictive environment.” IDEA’s implementation is underfunded by Congress and largely depends on each state’s interpretation of it. With such limited options for children with special needs, it makes sense that caring practitioners might push for a diagnosis that guarantees children receive the help they need over one without the same political power.

These factors were crystalized by the CDC’s changing methodology to measure autism rates. In 2013, the American Psychiatric Association narrowed its criteria for an autism diagnosis. In its 2018 and 2020 reports, however, the CDC used both the psychiatric association’s older broad diagnostic criteria and its newer narrow criteria, inflating rates. In its December 2021 report in MMWR, the agency went a step further, including not only children with autism diagnoses but also those with an autism billing code or a special education classification of autism. That meant a child didn’t even need a formal diagnosis of autism to be counted as a datapoint in the “autism epidemic.”

It’s easy to believe that disease categories simply report divisions in nature. But political and social factors also affect disease rates, as well as who receives treatment. Autism rates aren’t spiking because more children are developing this condition, but instead because of the deinstitutionalization movement, insurance legislation, and data collection methods. These social factors control which conditions receive more funding for treatment and research, and have helped create a system in which children with developmental disorders often cannot get the support they need without a diagnosis with social influence. They are even powerful enough to fuel an “epidemic.”

Rachel Burr Gerrard is a first-year medical student at the University of Pennsylvania. This essay stems from research she conducted for a master’s degree in philosophy from the University of Cambridge’s Health, Medicine and Society program.