The real story behind autistic women and Tylenol

The CDC’s fixation on Tylenol is a distraction. Every few years op-eds ask if Tylenol causes autism. The latest? Evidence inconclusive. Yes, autistic women take more Tylenol. And the debate stops right there.

Meanwhile, autistic women live in reality. The run on Tylenol is because doctors communicate poorly with autistic women. Autism is tied to chronic pain, gut issues, asthma, and PCOS — the impact on physical health is so significant that computers can pick out autistic people just by watching us walk.

We knew fifteen years ago that eating disorders are prevalent in autistic girls and stem from chaotic family systems. Today expensive clinics require mothers to attend therapy because mothers mediate outcomes. But the NYT op-ed about autism and eating disorders never even mentioned mothers.

The silence about what works creates a void that profiteers fill.

Like this venture capitalist who wants to test pregnant women for autism risk. Of course he does — he invested in the test. His plan is to invade women’s bodies, save the babies, and cash out. This guy is not solving a problem. He’s exploiting a vulnerable population because the real solutions like empowering mothers and family therapy, don’t scale for venture capital.

If he wants to fund something useful, he should fund empathy training for autistic families — starting with his own.

I’ve done the training. It’s great. It works because autism is a family condition. Partly genetics. Partly because autistic people marry each other and recreate some version of the chaos or control they grew up with.

In most cases, being autistic isn’t intrinsically a problem; the problem is being raised by a mother who had childhood trauma — something that’s very common. All the autistic mothers in my group had normalized behavior from their childhood and unknowingly continued it in their own family. We learned to see it not from looking at ourselves, but at each other. Because autism, at its essence, is a blindness to oneself.

Why mothers? Because mothers mediate outcomes in autistic families.

We have no research on autistic fathers because they don’t show up for studies. That’s no accident. Lower social awareness means they don’t even see when intervention is needed. So for cisgender couples who think the father is the more empathetic one: you’re wrong.

People think protecting women means hiding data. The opposite is true. Whitewashing what works leaves autistic women vulnerable to dangerous ideas like testing pregnant women instead of empowering them with interventions that actually work.

Interventions for autistic kids don’t last. What does work long-term is helping mothers recognize their own empathy deficits and accept they are not the exception to every rule. Once mothers learn to compensate, outcomes shift. Check out Canada: before kids can get services mothers go to group counseling.

Meanwhile, the US hemorrhages money on teaching gimmicks that fail while shushing the mothers away. Take cognitive behavioral therapy. In-school interventions are a make-work mission for the school psychologist. It’s the mothers who make the difference. If we were honest the funding would shift from schools to families. But schools are holding on to that money for dear life.

Who else profits? Private equity. While the government was forcing insurance to cover ABA, private equity bought up ABA providers and then lobbied to lock in coverage. Speech therapy? Parent training? Insurance won’t cover that until Wall Street gets a cut.

If insurance companies knew that mothers mediate the efficacy of ABA — not the service provider — the entire legal framework would collapse. No more government mandated ABA. No more torrents of autism cash into P/E coffers. So everyone with a financial stake has incentive to keep the focus away from mothers.

Even Autism Speaks, the supposed advocate for mothers, privately recognizes that autistic mothers mediate the effectiveness of autism interventions. But they say nothing publicly, because telling the truth risks their funding stream.

Real advocacy means telling autistic women difficult truths.

Autistic women need to know that our families are at risk. We have empathy problems and parenting is harder for autistic women. But we have research-based methods that enable mothers to change outcomes for autistic families. That’s empowerment.

But that would mean schools lose government funding, hedge funds lose insurance revenue, and VCs lose their exit. So instead, they sell us tests for pregnant women and recycle debates about Tylenol while autistic mothers — who could actually change outcomes for families — get no support, no research funding, and no voice.

They’re counting on your silence. Don’t give it to them.

Join me for a live autism discussion.

Each month I’ll post an autism rant — grounded in research, but also in our lived experience. Then we’ll dig deeper into what it really means for us and our families.

The first discussion is Wednesday, October 15 at 5pm Eastern. Become a paid subscriber on Substack to join the conversation.