I used to share my opinions about various topics more freely. But then the internet turned toxic, and people started unfriending others for disagreeing with them (wild, by the way), so I stopped sharing, for the most part. I especially stopped sharing when I thought that I had nothing to add to the matter or it was an area where I didn’t have special knowledge. But this hot topic involves my daughter, and it is an area where I do have special knowledge. So I will speak up. But it will be long, because this is not simple, and anyone firing off posts that took them two seconds to write should probably be ignored. First, let’s talk about the moms of profoundly autistic kids and what their lives are like and what they have to endure when they share those lives. Then we’ll talk about the science of what was said. And then what we can do about it. 

The burden that is carried by moms of profoundly autistic kids cannot be overstated. During my cancer treatment, people would talk about how hard it must be, how much of a warrior I am, and so on. Fair enough, but I assure you that it does not compare to how hard it is to have a disabled child. It is truly grueling in every conceivable way, and there is no end to it. I am in a lot of groups of other moms with profoundly disabled children, and I follow a lot of accounts with that kind of content. The fire that is within them is palpable. They endure so much. They feel alone. And now the autism community is divided. And people outside of the autism community are weighing in on things that they know nothing about. These are people who do not care about profoundly autistic individuals. These are people who, in fact, wish they didn’t exist. 

Here's an example of what moms of profoundly autistic kids have to endure from outsiders. A page I follow posted a video of her autistic son stimming. He's maybe a pre-teen or early teen, and he enjoys running water, so he was turning the faucet on and bouncing up and down. Despite her asking him to turn it off, he couldn't. It was filling a need. I made the mistake of reading through the comments.

All from a boy bouncing and enjoying the sound of water. He wasn't being violent. He wasn't even having a meltdown. Yet these cruel words were shared to his mother. People expressing fear, communicating a desire to abuse him, suggesting that he wasn't worthy of life. As I read through these comments, I felt sick. These words weren't said about my child, but it felt like it. Should any mother have to hear these things being said about her child? If the world viewed your child like this, how would you feel? What would you do to help your child? You know the answers. Imagine it for a minute. Imagine the life of that mom.
 
Now let’s get into the announcement from earlier this week. I’ll let you in on a secret. They didn’t say anything new. Moms of profoundly autistic children already knew everything that was said and have been discussing it amongst themselves for years. Some of them have been an advocate for what was said, and some have been an opponent of what was said. But absolutely nothing new was said – it was just finally said by someone in a position of authority. So the moms who have been screaming it from the rooftops for years finally heard their words uttered by someone important. They were finally validated. And then everyone on their friends list – people who have never cared about their child’s disabilities before – suddenly had an opinion. They were suddenly gaslighting them, laughing at the measures they’ve taken to protect their children, and making light of a disability that affects their family every moment of every day. Nice.
 
So that’s the human element of it. Regardless of the truth of the claim, we can be kind to one another and treat one another with respect.
 
Now what’s the claim and what’s the truth? Of course, I’m not a medical doctor, so this is just one mom’s opinion, but I have looked into this long before this announcement. The claims were raising flags about acetaminophen, as well as some claims about vaccines, in the rise of autism cases. Although I don’t think that President Trump should ever be the one explaining things (he tends to get info wrong or take one piece and run with it – much like most other people on the internet these days, by the way, including his most ardent opponents), they didn’t claim that Tylenol was the sole cause of all autism cases, nor did they blame mothers for taking it. They just wanted to bring awareness to this potential contributor. Again, this is not new, but it was the first time someone at this level was saying it.
 
Autism is very complex. In fact, it’s even more complex than, say, cancer, because it is a spectrum, and there is no definitive test for it. There’s no blood test, genetic test, biopsy, or MRI that can definitively diagnose autism, though those things may play some kind of role in putting each child’s unique puzzle together. For some kids with autism, they do have a genetic variant of significance that is responsible for their symptoms. For others (like my Hannah), there is an abnormal finding on their MRI. But autism is only diagnosed based on symptoms, and it is diagnosed by a psychiatrist, not a neurologist or a geneticist. Like with many other conditions, genetics do play a role. The saying is, “genetics load the gun, but environment pulls the trigger.” So the “causes” are multiple, and they affect different people differently.
 
Most of us agree that cigarettes can cause lung cancer. Yet we all know someone who smoked like a chimney for their whole life and never got lung cancer. And we’ve heard stories of individuals who never smoked a day and did get lung cancer. It’s complicated.
 
Likewise, there are individuals who are predisposed to autism. But how that autism ends up being expressed depends on many factors in their environment and life. Did you know that most kids with autism have gut issues? They have chronic constipation, their poop is extra stinky and sticky. There is a huge gut-brain connection, and it seems to work both ways (i.e., a brain problem affects the health of the gut AND a gut problem affects the health of the brain). Many of them also have mitochondrial dysfunction. Supporting the body of an autistic individual to minimize their symptoms is a huge, complex, overwhelming task. It requires a lot of investigation. Those moms I mentioned earlier? They are in the thick of it every day. I’d trust one of these moms to investigate a crime than I would any government official. They are on it. And they're mostly alone.
 
Okay, back to the Tylenol and vaccines. Could there be a link? For some, sure. The link makes sense. Tylenol depletes glutathione – a major detoxifier and antioxidant. When glutathione is low, oxidative stress rises, which can affect brain development. So especially when given directly following a vaccine, there could be a problem. There are other possible mechanisms, as well. Tylenol boosts serotonin signaling, and children with autism often have elevated levels of serotonin. And, there’s more. You get the point. It’s not that Tylenol causes autism to appear out of nowhere after one dose. That’s silly. It’s that, along with a number of other factors, it may contribute to triggering something in some people. So, there’s reason to be cautious in some individuals, and this information should be made available to women so that they can make an informed decision.
 
There are studies that show this link. But all of the studies show association, not definitive causation. There’s a reason for that. No studies will ever be done that can prove causation because it would be unethical to expose pregnant women to large amounts of acetaminophen. This is true for almost everything, and it’s why when pregnant women Google “can I take/eat/etc. X while pregnant,” there’s almost never an answer. So we have no real studies, only observations. That doesn’t make the observations unimportant. In fact, it makes them more important. We can’t get the gold standard, but we can have these observations. So we have to consider them. I love what Dr. Leigh Conneally says about this (emphasis mine):
 

 
This isn’t about blaming moms who took a Tylenol here or there during pregnancy. (And, it’s important to note that fevers are definitely dangerous for pregnant women, so a quick risk-benefit analysis would say that it’s better to lower a fever and take Tylenol for a couple of days than it is to let a fever rage.) But there is some blame when providers are telling women that it’s totally safe to take Tylenol daily. One mom I know said that she took Tylenol PM every night during her pregnancy because her doctor told her that it was safe to take for sleep. (It’s not safe for anyone to do that, and there are safer options for sleep, so I’m not sure what doctor told her this, but that was negligence.) She believes that this contributed to her child’s autism. I’m inclined to believe her.
 
For us, I didn’t take Tylenol when pregnant with Hannah (I think that I took half a kid’s dose with a massive headache once, but I was exceedingly cautious about taking anything during pregnancy…I actually did take Tylenol a couple of times when I was pregnant with Cara because I had Covid and needed to reduce a fever. And I would do it again. I've had to take Tylenol while undergoing chemo. But it is not my drug of choice.). But I am cautious about using Tylenol with Hannah because of her diagnoses. I only use it when absolutely necessary (they required it once when she had a surgery), and I generally prefer other medicines. She very likely has a sensitivity to it. I won’t discuss her vaccine status, but we exercise caution there, as well. Her brain and body are different. I take very seriously everything I give to her, more than I do with Cara or myself. She responds differently. Every autism mom is constantly running through all of these scenarios every time their child needs to take something. It’s exhausting. But it’s important. The world of profound autism is not black and white. Welcome to the land of gray.

The other announcement was about leucovorin. Again, this is not new. Hannah has been taking it for a long time. But maybe now it won’t be so hard for moms to get it prescribed – and covered. Because when I tell you that it hasn’t been easy, I mean it. Large-scale studies on it are unlikely to be done because no one can make boatloads of money off of it. So we’ve got to rely on what studies we do have. And they show low risk, potential benefit. An easy choice for most moms. But many doctors have been hesitant. Maybe now they will get on board.

It's also important to note that none of this is about “curing” autism. It’s about finding support for children who need it. Many autistic individuals are living full, independent lives, and their differences should be accepted and accommodated. But some are trapped in their own bodies with no way of communicating, no meaningful connection to others, no independence. They deserve help.

So, yeah, even though this isn't earth-shattering, and even though it's not super relevant to my daughter's particular case, I’m overall scoring this one as a win. Someone is talking about it. Someone is trying to connect some dots. Someone is validating what many moms are saying. Does more research need to be done? Of course. But when people say, “trust the experts,” I get annoyed. The experts in my daughter's disabilities are the people who live in our home, and the list ends there. Everyone else is a helpful resource or teammate – or they’re not. I may not be an autism expert or a cerebral palsy expert or a cortical visual impairment expert, but I am a Hannah expert. Every person with autism is unique, and when a mom says something about her kid, I generally believe her. No one cares more than a mom, and we all want the same things for our children. This isn't about politics, and I'll accept help from whoever offers it, whether it's this administration or the next.

And for everyone who posted something recently making jokes, I saw. I saw it, and I will remember it. But I really don’t care about the opinions of people who never cared about my daughter before. The only voice that matters to me is my daughter's. The only words that I long to hear are hers. Anyone who is asking honest questions and trying to get real answers so that that dream can come true is on my team. And everyone laughing at them is not.

If you want to be a real advocate and friend to profoundly autistic children and their parents/caregivers, find one and ask them how you can do so. They very likely don’t need you to share memes that say, “You’re not to blame.” They already know that. What they need are your prayers, your support, your listening ear, and your love. They need you to believe them and affirm them as the experts in their children. They need you to exercise your critical thinking skills, open your mind, and make room for nuance. If you can’t do those things, then you can do what we all should do when we encounter something outside of our wheelhouse: remain silent. Not every thought needs to be shared. When in doubt, don’t post. Pray.

(And anyone who read this far deserves a gold star. Thanks.)