What Autism Parents Really Need From Trump and RFK, Jr.
Science, Resources, and Support
I caught about two seconds of Trump’s press conference on autism yesterday, before I turned off the television in disgust. It was too cringe and predictable. He announced that Tylenol causes autism and that lucovorin — a form of folic acid — is the cure.
It’s not worth wasting too much time on those claims. The studies on Tylenol and lucovorin are not rigorous and are based on very small sample sizes. Lucovorin might have some benefits for kids with a specific variety of a genetic disorder related to autism. It’s harmless stuff, so most doctors will prescribe it if a parent asks for it.
RFK Jr. said that this work was aimed at benefiting autism parents. As an autism mom, I can tell you that fake science doesn’t help my family. My family and other autism families need access to medical care, financial resources, responsive schools, and welcoming communities. We need that help now.
My day job is talking to parents immediately after our medical staff diagnoses their kids with autism. I explain what autism is and steer them to the right resources. I’m on the front lines of autism.
I’ve been an autism mom for 18 years. It hasn’t been easy, despite having a lot of advantages.
I managed a relatively easy Level 1 kid in a middle-class suburb, in one of the few high-resourced states. I was educated enough to manage the doctor’s appointments and wrangle with schools. I could devote lots of time to my son, because my husband’s job paid the mortgage. My extended family kept me going in the tough days.
In the past few months, I’ve seen the intersection of autism and poverty. It’s not a good picture.
Other women have non-verbal autistic children, live in a crowded apartment with relatives, and can’t read an IEP. They don’t have access to proper medical care. Their lives were complicated before their children were diagnosed with autism. Now, things are worse.
Quite often, parents cry in my office. My personal challenge is to learn how to put up a wall to protect myself. I’m a contagious crier, so sometimes I end up crying with those families. Because the struggles are endless.
Families struggle to find doctors to diagnose autism, and even fewer take Medicaid. They struggle to find therapy companies that accept Medicaid and that have enough therapists on staff to help them. They struggle to meet the high needs of children who hurt themselves and aren’t potty trained, while caring for other children and their parents. They struggle to have their children properly educated by a school district that locks up those kids in a basement classroom. They struggle to understand the Medicaid paperwork that might provide them with a little bit of financial support. They struggle to find resources as their children get older and bigger, and maybe more violent.
Instead of pompous, empty-headed press conferences, please send social workers, special education teachers, speech therapists, respite care, and caretaker support funds. Please send social groups, adult care homes, and tutors. And don’t ignore us.
1 in 31 children in the United States has autism. All of those children have parents who are having a very rough time. Please send help.
I, too, was confused by the claim about Tylenol, because I was expecting an explanation for the original inflammation that may have caused parents of autistics to use Tylenol. The cause is not clear, but we can all see the rise in autism in our families in recent generations compared to the past — and it can’t all be just a genetic predisposition. Financial resources such as putting children on Social Disability and getting them ABA — but not other, better therapies are not the solution.
Thank you.