A growing discourse is emerging around the definition of autism, as advocates and researchers call for a reevaluation of how the condition is categorized. This conversation has gained momentum amid a noticeable increase in autism diagnoses across various demographics in the United States. Critics argue that the current classification, which presents autism as a unified spectrum with multiple subtypes, fails to address the unique challenges faced by individuals with the most severe forms of the disorder.
One prominent voice in this debate is Ari Ne’eman, an assistant professor of health policy and management at the T.H. Chan School of Public Health and a veteran disability rights advocate. Ne’eman expresses concern that creating a distinct classification for high-needs individuals may inadvertently lead to segregation and neglect. He cautions against the possible revival of past issues related to the treatment of individuals with intellectual disabilities. “The concern is this is a reboot of that fight, with this ‘profound autism’ construct as a new vehicle for litigating fights about inclusion that took place a generation ago around intellectual disability,” he explained.
The debate around autism comes at a time when awareness of the disorder is at an all-time high. Recent data from the Centers for Disease Control and Prevention (CDC) indicates that approximately one in 31 eight-year-olds in the United States has been diagnosed with autism, a rate that has quadrupled since the CDC began tracking in 2000. This rise encompasses a diverse range of individuals, from those with minimal or no verbal abilities requiring constant care to notable figures such as environmental activist Greta Thunberg and author Temple Grandin.
The conversation has also drawn political attention. In a September 2023 press release, President Donald Trump and Health and Human Services Secretary Robert F. Kennedy Jr. labeled autism an “epidemic” and highlighted controversial links between the disorder and substances like acetaminophen. They announced new funding for research aimed at exploring potential environmental, nutritional, and medical causes of autism. Notably, the CDC updated its website on November 19, 2023, stating that the Department of Health and Human Services would investigate possible causes, including vaccines, despite numerous studies disproving such links.
Ne’eman attributes the increase in autism diagnoses to enhanced awareness among educators, parents, and healthcare providers, as well as the evolving diagnostic criteria. The American Psychiatric Association has published the Diagnostic and Statistical Manual of Mental Disorders (DSM), which first recognized autism as a separate disorder in its third edition in 1980. The latest edition, DSM-5, released in 2013, introduced a three-tiered classification system based on levels of support required, further refining the understanding of autism.
According to Tara Eicher, a postdoctoral research fellow at the Chan School, “Major factors contributing to the increase in autism diagnoses include diagnostic substitution and the broadening of the autism criteria.” Eicher’s research focuses on identifying genetic causes of autism, with hundreds of genetic mutations already implicated in the disorder. Nevertheless, the interplay between these mutations and behavior remains a complex puzzle.
As discussions around a new “profound” category intensify, Ne’eman remains apprehensive about the implications for care. He recalls the advocacy efforts of the 1970s through the 1990s against institutionalization practices that marginalized individuals with intellectual disabilities. A significant concern is that combining diverse forms of severe impairment into a single category may lead to segregation and a retreat from community care.
Ne’eman acknowledges the challenges faced by families with severely impaired individuals who feel overlooked by current systems. He respects their desire for a framework that recognizes the complexities of severe impairment. “I do have a lot of sympathy for families who say, ‘Listen, I want to be able to talk about the challenges around severe impairment,’” he stated.
In this context, Michael Stein, a visiting professor of law at Harvard Law School and executive director of the Harvard Law School Project on Disability, argues that the terminology used to define autism matters less than how affected individuals are treated. “Ultimately, it’s how scrupulous and thoughtful the clinicians and social policymakers are regarding how these individuals are treated and supported,” he emphasized.
This ongoing dialogue reflects the complexities inherent in redefining autism and highlights the need for a sensitive approach that prioritizes the well-being of all individuals on the spectrum. As experts continue to grapple with the implications of reclassification, the conversation remains vital in ensuring inclusive practices and comprehensive support for those affected by autism.
