🎙️ Voice is AI-generated. Inconsistencies may occur.
From Hollywood to Silicon Valley to the halls of Congress, autism in many ways is riding a growing wave of awareness and open conversation. April's Autism Acceptance Month will likely showcase that awareness—and its limits.
Even with its increased acceptance of autism, our society still struggles to acknowledge the daily realities of people with the most profound expressions of this complex disability. By that measure, media representation, government bodies, and even the scientific community are falling short.
More than 25 percent of individuals with autism experience its most severe forms. Their daily realities can include profound communication limitations, self-injurious behaviors, seizures, catatonia, sleep problems, and other ongoing medical and behavioral challenges that usually require around-the-clock assistance.
You rarely see these aspects of autism portrayed in news reports, social media, or the entertainment industry. The recent backlash over a bafflingly incomplete USA Today explainer on autism is just one example.
As the father of a young adult who is nonverbal and has severe autism, I'm acutely aware of this community's invisibility.
Why so much exclusion in an age of "acceptance?"
People with severe autism typically are unable to engage in the self-advocacy (and, increasingly, self-diagnosis) celebrated by many influencers and gatekeepers of the public conversation, whether on TikTok, TV, or online news outlets.
Of course, self-advocacy is highly important, but when we declare it the only legitimate form of discourse around disability, those who can't take part in it are left on the margins. And with the autism spectrum now defined in such a wide manner, it's absurd to suggest that anyone—whether they have the disorder or not—can represent everyone with autism in the public square.
More and more, the severe autism population is simply left out of the discussion. When parents, caregivers, and advocates speak up, they too often are ostracized and subjected to elaborate language policing.
News outlets which once saw themselves as a voice for the voiceless increasingly focus their coverage on the segment of the autism spectrum more likely to be seen in journalists' own social and professional circles. While families across the nation struggle to provide care for those with severe autism, ideology and a particular way of speaking about disability now dominate dialogue about the disorder.
Embracing positive aspects of autism is a good thing. The problem comes when representation of autism is so narrow as to exclude the struggles others face. Undoubtedly, the way our society talked about autism once was too cold and clinical, overly focused on deficits. But today's in-vogue approaches, such as noting only "differences" and avoiding the term "disorder," do their own disservice by glossing over human suffering from issues such as head-banging and other forms of self-injury.
Media widely covered billionaire Bill Gates identifying himself as likely on the spectrum—and seeing it as a strength—during the recent publicity campaign for his memoir. Meanwhile, a shocking report from Missouri finding that "74 people with developmental disabilities died in some sort of accident while in state care" from 2017 to 2023 barely registered in the national conversation. Families nationwide have experienced tragedy after tragedy in the recent wave of drowning deaths of children with autism. National media, with some key exceptions, are largely silent on the matter.
In the rare cases where the need to include people with severe autism is acknowledged, it's too often framed as a project for the future. This caveat from a 2024 autism study is typical of the mindset: "Importantly, most participants were diagnosed in adulthood and did not identify as a person with [intellectual disability] or who is nonspeaking... Future research should target a broader and more representative sample of autistic adults."
Even as many people with severe autism confront intense daily challenges, federal government agencies for years have showed little sense of urgency to help this unseen population. In the meantime, ideological imperatives became more and more central to the conversation.
Individuals with the most profound form of autism remain dramatically underrepresented in autism research. As for the federal government's lumbering Interagency Autism Coordinating Committee (IACC), a 2024 U.S. Government Accountability Office report drolly notes that "establishing a clear process for tracking progress would help to determine progress toward IACC's goals and that interagency efforts are effective."
With the recent reauthorization of the Autism CARES Act, advocates had hoped for a major revamp of federal autism policy to focus on those with the greatest needs. Instead, they had to settle for the incremental step of new language about reflecting "the entire population of individuals with autism spectrum disorder."
While it's true officials in the new Trump administration are talking more openly about autism as a national public health issue, their reported interest in widely researched and debunked claims of vaccine-autism ties risks another setback in prioritizing new research paths.
People with severe autism already face immense barriers in areas ranging from the chronic shortage of direct support professionals to obtaining suitable medical and dental care. The challenges will only intensify over time as family caregivers like myself inevitably age and die.
A just society should include and value every person with autism, wherever they fall on the spectrum. That requires openly discussing—and effectively addressing—the needs of people with severe autism. The present reality is inclusion for some and exclusion for others. Whatever the month, that's simply unacceptable.
Mark Kendall is a former journalist, father of a young adult with severe autism and California chair for the National Council on Severe Autism.
The views expressed in this article are the writer's own.
