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Guest Essay

By Emily May

Ms. May is a writer and the mother of a child with autism.

My daughter hasn’t spoken in five years. 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. 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........

© The New York Times