Newsweek - Autism Awareness Still Has a Long Way To Go

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Autism Awareness Still Has a Long Way To Go | Opinion

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.

autism children visit
MIAMI, FLORIDA - OCTOBER 27: Julian Gil and his dog Batman visits autistic children at Pedikidz of Florida on October 27, 2022 in Miami, Florida. Jose Devillegas/Getty Images
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.

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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.

The consensus is that science will prove there are autisms or that what we call autism are completely different conditions. That may not happen for a long time if it happens at all. In the meantime like it or not the Autism community is in this together.

We need to stop language policing each other be it ND advocates having a fit if somebody uses profound autism or advocates for profound autism trying to strike the word difference from discussions about autism.

Advocates for profound autism should recognize advocates for level 1 types have a place in the discussion of profound autism. Advocates for level 1 types need to recognize while we should have a place there are limits. While the Level 1 experience is very different from the level 3 experience it is closer to the Level 3 experience than the neurotypical experience. On the other hand the parent of the profoundly autistic child has years more experience with that child than you do.

The first thing that needs to stop is calling parents who enroll their chid in ABA Nazis. Most of these parents are not Nazis but have a child they do not have the skills to deal with, are presented with a treatment almost universally described as the gold standard, and what insurance will pay for. When advocates do that they create and validate all sorts of negative stereotypes about the ND movement and almost guarantee that parent will click off every ND advocate. Thankfully we have cleaned that up here on WP, but that still goes on.

Advocates for profound autism should recognize advocates for level 1 types have a place in the discussion of profound autism.

But why would they simply by virtue of sharing the same name ASD?

Do Jehovah witness followers (9 million worldwide) who are known for being against blood transfusions really have a say with medical practitioners on how non followers who are accident victims are dealt with?. Does anyone else really listen to them on the evil of blood transfusions for someone bleeding to death and god`s will?

Truth is people only really advocate for themselves on health matters, the exception being things which everyone will agree on like access to things and services.

So there are limits to advocacy and we have probably reached it.

The basic traits are the same or similar, but the severity is radically different. For most other conditions advocacy is not split into different groups based on severity. For example, you do not have people with stage 4 cancer saying Stage 0 cancer patients have no right to advocate for them. You generally do not have people with a slight limp saying to people in wheelchairs you are not trying hard enough, you are sheep for the ableist society.

In Autism we don't agree on access to things and services. Elements of the profound autism movement is based on you who can land a job, and be in a relationship are taking money we deserve.

It would help if people stopped using autism and autistic as if they were interchangeable! The Autistic label was widely used at least 50 years before Kanner borrowed from it. He wrote about a handful of kids who he considered to be strongly autistic, according to how it was understood back then.

He did not examine all autistic children!

The likelihood of most Autistics having autism, is no greater than for most humans to have red hair!

The examples you give are groups that are all on the same page in terms of objectives. Those with limps don't usually interfere with the objectives of those in wheelchairs. They all agree they have mobility problems and support ways of curing those or at least mitigating the problems with accommodations like wheelchair ramps or walking escalators.

With ASD you have two sides with different opposite objectives. One side want a cure, the other are against such a thing. One side want to promote the medical model, the other are generally against that.

So you have a limit to group advocacy. Not that its really wanted anyway. What unique insight could someone like Elon Musk provide for someone with profound autism, why would he or others in that position want special rights to advocate for profound autism?.

Take away the brand name ASD and interest is gone, the only possible motive is self interest and narrative promotion of their own objectives, which is why only self advocacy is possible when it comes to individual patient care, just like with the example of Jehovah witness and blood transfusion.

Words can evolve and change in their meaning throughout the years. In 2025 I think the words ‘autism’ and ‘autistic’ are interchangeable. Yes, it’s a wide spectrum but isn’t that the point of using the word ‘spectrum?’ We are a diverse community of individuals who are advocating for ourselves and our community members who are unable to defend and to support themselves.

The way it is commonly understood autistics are people who have the traits of Autism. Autism is the noun, Autistic is the verb. If Autism and Autistic are different things what is needed are two words that do not sound similar.