Why Can't Autism Research Be Fixed?

The current overly broad definition does no one any good

I was on an eight-hour overnight flight from New York to Frankfurt, a misery in itself once you’ve scraped together the pennies to get a seat in coach. That particular flight was made more miserable by the presence of a very unruly child. He was traveling with his mom, and had made loud but easily ignored vocalizations at the beginning of the flight. But when the overhead lights were doused and many passengers seemed ready for sleep, or at least a longish nap, the child became genuinely ungovernable. He ran up and down the stingy aisles, making sounds that weren’t quite words but you couldn’t swear they weren’t, swinging and sometimes flapping his arms. About nine or ten years old, he wasn’t very tall and his arms and hurtling body occasionally bumped the seats or shoulders of passengers.

His mom was in the back of the plane where there was coffee, water, and a few little snacks for those who couldn’t sleep but didn’t want to remain seated, trying to coax him to stay with her. She was being lectured and rebuked by other passengers who’d gathered in the small kitchen. Why didn’t she control him—couldn’t she see he was disrupting the flight and upsetting an entire plane full of people?

“He’s autistic,” the mom explained.

“Why would you bring an autistic child on such a long flight?” someone asked, apparently aghast.

“We’re going to a family funeral,” she replied, which resulted in zero condolence, empathy, or kindness.

Ever since HHS Secretary Robert F. Kennedy Jr.’s post on X about children with “severe autism,” a raging debate has consumed autism researchers, advocates, and parents of autistic children. Many featured in the media are enraged that Kennedy would describe autistic children in such stark terms. Here is his post on X from April 18, 2025:

“Thank you @SeanHannity. for letting me set the record straight. Bottom line, the more than 25% of people who have severe autism will never go on a date, write a poem, live independently, or have a job. We need to identify the exposures that are causing this epidemic and compensate the families of the injured. @HHS.com, under my leadership, will be unrelenting in assisting affected individuals in living up to all their potentials.” (1)

This post followed a press conference on April 16 at which Kennedy projected dire outcomes for children with autism and their families. Politifact reported Kennedy’s statements that autism “destroyed families” and was “an individual tragedy as well.” (2)

Politifact’s article continued:

“Kennedy said many autistic children were ‘fully functional’ and ‘regressed … into autism when they were 2 years old. And these are kids who will never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date. Many of them will never use a toilet unassisted.’ … He also said, ‘Most cases now are severe. Twenty-five percent of the kids who are diagnosed with autism are nonverbal, non-toilet-trained, and have other stereotypical features.’ ” (2)

Backlash was swift. ABC News published an online article that interviewed parents of children/adults on the “autism spectrum.” (3)

Samatha Taylor, the mother of a 20-year-old who’s on the autism spectrum, posted on FaceBook and shared with ABC News, “Autism doesn't destroy families. You know what does? Inaccurate information passed along as science.” (3)

Gentry Foundation for Autism board member Alexis Brown told ABC News, “Autism is a very broad spectrum, and it is not an epidemic. Our children play sports, are members of the National Junior Honor Society, serve as junior instructors in their jujitsu black belt club and do CrossFit. So let's debunk the idea that all children with autism will never use the toilet, never hold a job or never succeed in life.” (3)

In the New York Times, longtime autism researcher and professor emeritus at Oregon Health & Science University Dr. Eric Fombonne called Mr. Kennedy’s claims “ridiculous.” And Dr. Joshua Anbar, an assistant teaching professor at Arizona State University who worked on the latest CDC autism prevalence report, told the Times, “Autism is not an infectious disease. So there aren’t preventive measures that we can take.” (4)

Parents of children with severe (or “profound”) autism recount very different experiences.

Emily May, the mother of a child with severe autism, wrote a guest opinion piece for the New York Times in which she thanked Kennedy for describing the situations of children like her own. (5)

“My daughter hasn’t spoken in five years,” May wrote. “She never had many words, but they all disappeared just before she turned 2. She used to clap her hands along to music, respond to her name and once tried to feed her baby doll Cheerios. Those skills vanished quickly — it felt like trying to keep water cupped in your hands.” (5)

Soon after this regression, May’s daughter was diagnosed with “Level 3” autism.

May continued:

“When Robert F. Kennedy Jr. said in a recent press briefing that autistic children will ‘never pay taxes,’ ‘never hold a job,’ ‘never play baseball,’ many people in the autism community reacted angrily. And yet I was transported back to the psychiatrist’s office and her bleak prognosis that my child might never speak again. I found myself nodding along as Mr. Kennedy spoke about the grim realities of profound autism. ... It’s not a position I expected to be in,” May explained. “I have never voted for Donald Trump. I vaccinated my children. I consider myself squarely left of center.” (5)

May described herself as perhaps the opposite of most of the Trump administration; she’s in favor of expanded Medicaid, support for caregivers and much more research. She described Mr. Kennedy as promoting “shaky science” and “conspiracy theories.”

“And yet I think his remarks echo the reality and pain of a subset of parents of children with autism who feel left out of much of the conversation around the condition,” May wrote. “Many advocacy groups focus so much on acceptance, inclusion and celebrating neurodiversity that it can feel as if they are avoiding uncomfortable truths about children like mine. Parents are encouraged not to use words like ‘severe,’ ‘profound’ or even ‘Level 3’ to describe our child’s autism; we’re told those terms are stigmatizing and we should instead speak of ‘high support
needs.’ ” (5)

While criticizing the new advocacy around autism and other disabilities, May acknowledged that some of its accomplishments are positive: inclusion of many more children with disabilities in public schools, discontinuation of long-term incarceration in mental institutions, and pressure on society as a whole to accommodate people with many different kinds of disabilities.

“There are limits, however,” May pointed out. “It’s one thing to teach children how to engage with a classmate who struggles with social cues, but my daughter can’t say her name. She struggles to interact at all. These are the hard realities for families like ours — families whose children are too severe even for spaces designed to be inclusive. And yet it feels as though our needs are often unacknowledged. ... Part of the issue is that autism now encompasses both children who will need lifelong care and, say, a teenage girl who does well academically but has panic attacks about going to school. We have TV shows like ‘The Good Doctor,’ but I can’t imagine a network willing to touch my child’s reality with a 10-foot pole. ... It concerns me that children like my daughter who have profound autism — including intellectual disability and little or no verbal communication — have become increasingly less likely to be included in autism research, despite making up about a quarter of autism cases.” (5)

May is far from alone in her concerns about the attempt to normalize profound autism or just ignore it in research projects. In the Brownstone Journal, author and activist Sofia Karstens described the trajectory of severe autism in families she knows. (6)

“A dear friend had a beautiful, healthy, engaged baby boy,” Karstens wrote. “After his first round of childhood vaccinations, he went blind, non-verbal, started head banging, having seizures, lost all engagement, and fell into the abyss of autism. Today that child is 40. He is incontinent, cannot speak or feed himself, and is totally dependent upon his father to survive. ... [Another] mother ... had a teenage daughter who, after a round of the Gardasil vaccine, suffered a seizure and went into a coma. The young girl had been captain of her volleyball team, top of her class, poised for a full and happy life. Today, at nearly 20, she lives in total darkness because she has seizures every 30 seconds – cannot have any light. The neurodegeneration is unquantifiable. She cannot read or watch TV, let alone go on her first date, go to prom…experience the life she should have and would have.” (6)

May and Karsten’s target is one I agree needs a massive overhaul: the relatively new definition of an autism spectrum that includes non-verbal, head-banging children along with people diagnosed with “neurodiversity” who are able to attend college and hold down jobs.

“No other disease has people normalizing a spectrum (no pun intended) of symptoms ranging from terrible to non-debilitating in order to argue that it’s actually great,” Karsten pointed out. “We don’t say there’s a spectrum of neurodegenerative disorder from paralysis to neuropathy and there are benefits to neuropathy therefore neurodegeneration is great. ... Suddenly everyone’s kid is Rain Man. Suddenly everyone is ‘on the spectrum.’ Ergo, it’s normal. Being a little bit weird is beautiful and normal and we are all a little bit weird so that’s not a disorder. ...” (6)

The “spectrum” that spans a range from non-verbal children and to adults who have trouble understanding social cues, difficulty making friends and are extremely stressed by social situations is not only unhelpful (although these adults, too, deserve better research and treatments for their conditions), it punishes the families who have children with profound autism—and the children themselves.

May’s guest essay in the New York Times concluded:

“My daughter turns 7 next month. I’ve long accepted that I may never hear her call me Mom. I have grieved a million tiny deaths of the things I once assumed would be. And yet she is the most beautiful child I have ever laid eyes on. She is pure magic. I live in terror of the day she outgrows cute, and I worry constantly that as she grows bigger, her world grows smaller.” (5)

I’ve attended autism conferences where numerous children—unable to sit still, interact with the other children or be distracted by anxious parents—display the most distressing symptoms of severe autism. At one conference, I had coffee with a couple who had twins; their little boy is severely autistic and his sister is not. I’ve looked into the frightened, despairing eyes of these parents, their pain almost as impossible to soothe as is the pain their children must feel, physical or psychological. At the very least, until causes and treatments are identified, these parents and children deserve much more help and understanding—the denial and outright mistreatment that’s their usual fare has to end.

BIBLIOGRAPHY
1. Robert F. Kennedy, Jr. Post on X, April 18, 2025. https://x.com/SecKennedy/status/1913250371671093275
2. Madison Czopek et al. “RFK Jr. exaggerates share of autistic population with severe limitations.” Politifact, April 16, 2025. https://www.politifact.com/article/2025/apr/21/rfk-jr-exaggerates-share-of-autistic-population-wi/
3. Bethany Braun-Silva. “RFK Jr.'s comments on autism draw reactions from parents and experts.” April 16, 2025. ABC News. https://abcnews.go.com/GMA/Wellness/parents-experts-react-rfk-jrs-autism-claims/story?id=120911306
4. Karoun Demirjian, Dani Blum and Azeen Ghorayshi. “Kennedy Calls Autism ‘Preventable,’ Drawing Ire From Researchers.” New York Times, April 16, 2025. https://www.nytimes.com/2025/04/16/us/politics/rfk-jr-autism.html
5. Emily May. “Kennedy Described My Daughter’s Reality.” New York Times, April 25, 2025. https://www.nytimes.com/2025/04/25/opinion/autism-rfk-parent-child.html
6. Sofia Karstens. “Neurodiversity Is a Strawman.” Brownstone Journal, April 26, 2025. https://brownstone.org/articles/neurodiversity-is-a-strawman/