Navigating life when your child is neurodiverse always daunting. In the US, with Trump’s administration and Kennedy at the helm of the nation’s health, the risks of diagnosis may outweigh the rewards. In my own family, testing my son for autism and ADHD is dangerous under Trump.
The note from my son’s teacher said she wanted “to share an incident that occurred today during math class.” We’ve been receiving these notes with increasing frequency, describing ways in which A, our ten-year-old son, has failed to regulate his actions with teachers and/or classmates.
The behavioral screening questionnaires from A’s pediatrician have remained untouched in my purse for two months now. Before I could give them to his dad and his teachers, before I put pen to paper to circle endless rows of how frequently I observe various attributes and actions, the Trump-appointed US Secretary of Health and Human Services, Robert F Kennedy Jr, promised to find the cause of autism by September.
A gets excellent grades and engages with work well above his grade level. Parent/teacher conferences are never about academic performance, but about how to help him behave appropriately. Still, his teacher has rolled her eyes when I’ve suggested that he might have autism or ADHD.
Getting a diagnosis for neurodiverse children has never been easy
When I asked his pediatrician about testing, she smiled condescendingly, gave me printouts of the Vanderbilt Assessment Scale for us to complete, and said: “Now we will see if he has a problem or if he is just being a boy.” Her little chuckle seemed to indicate his behavior was certainly just a bit of (gendered) rambunctiousness.
But Vanderbilt and I are acquainted. A’s older siblings, a brother and a sister, have both faced their own challenges and came out of their neuropsych testing with diagnoses and adaptive learning plans after similar skepticism.
Everyone who’s worked with my children seems to have had the best of intentions. But there is a lack of understanding of the factors at play. For example, my daughter’s ADHD diagnosis was questioned because she was the most focused student her teachers had seen. Again, gender played a role; there was incomprehension that a girl might be socialized to compensate for her overactive mind and body by concentrating very hard in an effort to be ‘good’.
As with A, my oldest son’s educators didn’t realize he needed support because his grades were excellent. They had no idea how much harder he had to work to achieve the same results as his classmates.
Still, the diagnoses opened up doors for my older children. Both of them get academic support now. They are likely to receive more financial aid with university, as well as vocational help when they are ready to work.
Covid made ADHD and autism harder to see
I’ve recognized signs of neurodivergence in my youngest child for a few years now. In 2021, when A was six, we asked his pediatrician about his apparent acting out and his inability to sit at the table through dinner. “Honestly,” the doctor said, “What you have is a COVID kid. They haven’t had the chance to be in classroom situations for that critical kindergarten year, to find their place in social interactions. We wouldn’t medicate at this age anyway, so let’s give it a couple of years.”
While I know there are ways besides medication to support a ‘neurospicy’ child, what he said about COVID did make sense. We’d spent the spring of 2020 observing with a kind of gallows humor as his very brave preschool teacher attempted to preside over an online class of four- and five-year-olds. None of these kids were self-regulated. Rather than send him to kindergarten in a mask, behind a plexiglass screen, we homeschooled A for his kindergarten year.
But he’s in fourth grade now. His voice is deepening. He vacillates between being so sensitive that a piece of classical music can literally make him sob – “It’s just so beautiful!” – to telling his teacher in front of the whole class that suicide is a great way to cure her hiccups. He cannot tell that this isn’t a hilarious joke until it is out of his mouth and he is in a shame spiral.
Trump’s Health Secretary has scary plans for the neurodiverse
Kennedy’s agenda is a threat to my family. He has not only proposed limiting children’s access to psychiatric drugs. At his behest, the Department of Health and Human Services has announced that they will collaborate with government health agencies Medicare and Medicaid to create an autism database using insurance claims, medical records, and data from wearable devices. Finally, during his own failed presidential campaign, in a town-hall meeting and via a self-produced documentary, he proposes sending “addicts,” a broad category that includes everyone from heroin users to those taking aforementioned prescribed psych meds, to “wellness farms” that sound an awful lot like work camps. He says residents would heal by growing organic food and being “reparented.”
Meanwhile, President Trump, who is vocal about decimating and eventually closing the US Department of Education, announced in March that federal special education operations will be moved from the DOE to the HHS, which Kennedy heads. Legally, this must be done through Congress as part of the checks and balances of power built into the US Constitution. But Trump has circumvented this system and even claimed he “doesn’t know” if he has to uphold the Constitution.
Even with our privilege, we’re not immune to shock and awe
If this sounds like an overwhelming amount of chicanery to keep track of, that’s the whole point. As Representative Gerald Connolly said when Elon Musk shut down USAID, “This is a shock and awe playbook. Trump and his acolytes are flooding the zone with one outrageous plan after another in the hopes we will balk at the sheer size and scope of their efforts.”
But here I sit with two children who have multiple psychiatric diagnoses and whose private medical information is in the government’s database because my income was once low enough that we qualified for medical assistance. I have one child with no diagnoses as of yet, when experience has taught me that being diagnosed could help him greatly.
We are relatively privileged. I am white. My kids are white-presenting. We are in a state, Illinois, where the governor, a billionaire and not without his own significant power, has taken a firm stand against The President.
Still, I find the risk too great, and I am not the only parent who is worried. We are navigating an administration where people are being disappeared with no due process. Kennedy is not just your conspiracy-spouting uncle who you must tolerate at family gatherings. He has watched children die of a preventable disease while disavowing vaccines (until he equivocated after the death of a second child from the measles). His own aunt, the possibly autistic Rosemary Kennedy, was lobotomized in order to prevent her thwarting the business and political career of his grandfather, Joseph Kennedy. To see how this administration, and the people who voted for it, view neurodiversity, we need look no further than the treatment they dished out to the son of the VP candidate on the opposing ticket.
Meanwhile, A is increasingly dreading school. Every morning, he says, “If I don’t come back, tell my story.” How the story ends for him, his siblings, and other neurodiverse Americans, remains to be seen.
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