08/12/2026
When Amy Lutz’s son, Jonah, was diagnosed with autism 27 years ago, she didn’t know any other parents raising autistic children.
At the time, autism was almost universally understood as a profoundly disabling developmental condition. That described Jonah Lutz. After his language development was delayed as a toddler, Amy Lutz initially wondered whether he might be deaf. Instead, a physician diagnosed him with autism when he was 2.
Today, Jonah Lutz has limited spoken language. He can communicate his likes and dislikes and recite lines from “Sesame Street,” but he cannot answer more abstract questions beginning with “how” or “why.” Despite years of treatment that helped control his aggressive behavior, he still bites his hand or hits his head when distressed. Amy Lutz has “Jonah-proofed” their house, adding code locks to all exterior doors to prevent Jonah Lutz from running off, a common compulsion among people with autism. Jonah Lutz requires round-the-clock care and will for the rest of his life.
In the decades since Jonah Lutz’s diagnosis, the definition of autism — and the public conversation surrounding it — has changed dramatically. Today, autism is increasingly understood not only as a medical diagnosis and disability but also as an identity embraced by many autistic people.
“I can’t believe I’ve lived to see this, but autism has become trendy,” Amy Lutz said. “It’s become something that’s self-diagnosed, that people celebrate as an identity, and that’s really had a deleterious effect on discourse around profound autism.”
This is part 5 of a 5-part series examining one of the most contested areas in modern medicine.
The spectrum now encompasses people like Jonah Lutz alongside those who graduate from college, build careers and have their own families. For many autistic adults, autism’s growing awareness and shrinking stigma have brought greater acceptance, recognition and a rejection of the idea that autism is a disease to be cured. But Amy Lutz and other parents of people with profound autism argue that shift has come at a cost. As public attention, research and advocacy have increasingly focused on higher-functioning autistic people, they say, the needs of those who require lifelong care are increasingly overlooked.
A growing disconnect
Amy Lutz and other parents of people with profound autism say they support the neurodiversity movement’s goals of greater acceptance, dignity and civil rights. But some believe the same changes celebrated by the movement have contributed to a growing disconnect between how autism is commonly understood and the realities their families face.
Straight Arrow has interviewed dozens of families raising children with profound autism. Many described being turned away from autism day programs, camps and extracurricular activities because providers were unequipped to care for children with intensive behavioral or medical needs.
Others said that while schools developed individualized education programs, or IEPs, they lacked the staffing or specialized resources to carry them out. In many communities, parents said, there were simply no alternatives.
While some of these challenges are not unique to those with profound autism, parents said the consequences of those gaps are often greater because specialized alternatives are scarce or nonexistent. Many also felt that the broader autism service system has been built for children who are easier to help.
“Parents or support teams for autistic people with higher support needs are worried about their kids disappearing in terms of getting resources, in terms of getting public attention, and kind of being replaced by this image of like the slightly eccentric verbal autistic adults who can function relatively independently,” Price said. “I think when they’re worried about that, they’re completely right.”
Price said autistic adults like himself often receive more attention because they can advocate publicly for themselves and are more accessible to journalists, policymakers and researchers.
The neurodiversity movement reshaped how we see autism, but critics warn the shift has left families of the profoundly disabled behind.
