My daughter hasn’t spoken in five years. She never had many words, but they all disappeared just before she turned two. 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. Several months later, in October 2020, we received a diagnosis: Level 3 autism, the most severe form. I asked the child psychiatrist, who was very kind, if she knew why regressions like this happen. She said that she didn’t, but that it wasn’t uncommon — about one in three kids she diagnosed with autism had similar trajectories.
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. I have never voted for Donald Trump. I vaccinated my children. I consider myself squarely left of center. I want Medicaid expansion, increased special education funding, support for caregivers and investment in research — all things this administration seems intent on gutting. I have no interest in defending Mr. Kennedy, whose shaky science and conspiracy theories will do nothing to benefit those with autism and their families.
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. 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.” A Harvard-affiliated research center halted a panel on autism awareness in 2022, after students claimed that the panel’s language about treating autism was “toxic.” A student petition circulated on Change.org said that autism “is not an illness or disease and, most importantly, it is not inherently negative.”
This advocacy reflects the huge shift our culture has gone through in how we think and talk about disability. We have moved from viewing disability through a purely medical lens — as something broken to be fixed, to a social lens that puts the onus on society to accommodate it.Autism has become an identity, a different way of thinking and existing. Through this lens, autism itself isn’t the problem — it’s the lack of support and the lack of understanding. Much good has come from those changes. We don’t live in an era of mass institutionalization anymore. Children with autism have a right to an appropriate education, to accommodations, changes in the classroom to help them succeed; we have sensory friendly days at the zoo.
There are limits, however. 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 like our needs are often unacknowledged.
