As a parent expert, I’ve been stewing and chewing on the Trump Administration’s autism announcement Monday and have put together my Top Six Takes on the big event. My views come from my 20+ years parenting a child with high-needs autism, hearing from other parents and reading about the science.
Many causes of autism
There is not one cause of autism — there are many. Saying there is one or two large-scale causes of autism is dangerous, foolish and pretty much kills hope for help for people like my son, whose autism isn’t linked to the cause célèbres touted and spouted Monday.
His autism was caused by a rare genetic disorder of the CTCF gene, which also caused other medical problems for him, including two that were life-threatening.
Claims on Tylenol alarming
Vaccines and acetaminophen (marketed as Tylenol) did not cause his autism and — several studies confirm — are not large-scale causes of autism. His genetic mutation (which my husband and I don’t have) occurred in my first trimester and I may have taken acetaminophen in my last trimester when I had an infection.
I find the acetaminophen claims especially alarming given that they may prevent pregnant women from taking it to prevent fevers, which can be harmful to mothers and babies.
However, I do think a limited number of cases of autism may be linked to vaccines or acetaminophen. A friend shared her experience with Tylenol on social media and the fact that she, her husband and her autistic child have a genetic mutation that makes them more vulnerable to issues taking acetaminophen.
Like me, she maintains that there are many causes of autism.
But study leucovorin
I am curious about leucovorin and think it’s probably a good idea to relabel the modified folate medication to make it available for autistic people sometime soon. But I think there needs to be a larger study of the medication (past studies involved fewer than 100 participants).
In a recent Washington Post article, the lead researcher of the medication, Dr. Richard E. Frye, laid out how it improved communication and cognition in autistic people with genetic mutations that blocks folate transportation into the brain.
(The primary gene that’s implicated is FOLR1. According to the article, “Frye estimates that up to 70% of those with autism may have a gene variation that would make them susceptible to this problem.”)
He also made the point that his research is just starting or, as he put it, is at the “10-yard line.” That’s what I think a large-scale research trial of the medication is needed, not the “everyone, go out and take this right way!!!!” approach suggested Monday.
Also, as another parent expert I follow said, some people she knows improved with it, some showed no change and some peoples’ symptoms got worse.
The New York Times found that adverse effects included aggression, agitation, headache, insomnia and increased tantrums. I think that if Medicaid is going to fund use of this drug, they should pay for genetic and folate receptor antibody testing to determine whether the drug is a good fit or not.
Genes matter
On Monday, Health and Human Services Secretary Robert F. Kennedy Jr. made clear his anti-genetics bias when it comes to autism. But promoting leucovorin (really and ironically) makes the point that genetic mutations matter.
It’s effective when you have the genetic mutation (as well some mitochondrial conditions). My son’s genetic mutation has been critical to our understanding of his health conditions.
In my humble opinion, all people diagnosed with autism should be offered genetic testing. Not to find the cause, but to identify and improve any co-morbid conditions they have.
Sadly, the administration has cut NIH research grants into rare genetic diseases and the office that could have funded research into my son’s rare genetic disorder. DEI cuts have included research, protection and supports for disabled people in general.
Support, studies matter
Support, services and research targeting improving the daily lives of autistic people matter. That’s where the emphasis should be.
Medicaid funds about half the budget of almost every service and support my son relies on. It’s all in jeopardy because of the recent Big Beautiful Bill cuts. Researching ways to improve his daily life is tragically lacking.
For me, most critical is researching his extreme difficulty in identifying where in his body he feels pain, which is a constant and potentially deadly threat for him (and many other disabled people).
And words matter
When the President tells pregnant women: “Don’t take Tylenol,” what I hear is “Don’t take Tylenol, or you’ll end up with a child like my son. That would be a tragedy.”
For obvious reasons, that enrages and disgusts me. In no way can I respect or trust someone who suggests that preventing more families from having a child like ours is akin to saving millions of lives by preventing wars.
Here’s his quote from Monday: “I’ve stopped seven different wars. I’ve saved millions of lives. I’ve done a lot of things. This will be as important as any single thing I’ve done.”
My distrust in him poses a danger. I was initially quick to dismiss leucovorin out of hand. But I think it’s worth finding out whether my son carries the FOLR1 mutation or whether his CTCF gene mutation is related to or interacts with FOLR1.
I’ll stop at six takes, though I could go on. But I have a wonderful, valuable and awesome son to care for and enjoy.
Sophy Chaffee is a full-time caregiver for her autistic son and a freelance writer based in Encinitas.
