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‘Did you take Tylenol while you were pregnant with me?’ One son’s question reveals the weight of public words.

Jack Cariello is 21, 6 foot 5 and a bit of a news junkie. “He’s like a purveyor of pop culture news, so if a celebrity passes away, we’re the first to know” because Jack texts the family group chat immediately, his mother, Carrie Cariello tells Yahoo.

On Monday, Sept. 22, Cariello got another text from Jack: “Did you take Tylenol while you were pregnant with me?”

President Trump, Health Secretary Robert F. Kennedy Jr. and other White House officials had just announced a new Food and Drug Administration recommendation against the use of Tylenol during pregnancy, promoting the unproven claim that it may increase the risk of autism spectrum disorder. Jack is on the spectrum, but living away from home in a supportive group setting. He wanted to know if the words of the top officials in the U.S. applied to him.

Cariello wasn’t terribly surprised by Jack’s question. She’s what she calls “an old autism mom” now, having spent 21 years with her inquisitive son, and just as long weathering the often politically charged discourse around his diagnosis. “I have some feelings about what’s unfolding now, but I’ve seen a lot unfold over the course of two decades,” she says.

In those years, Cariello, co-author of the New York Times bestselling memoir Autism Out Loud, has learned a lot, including how to deflect the hard questions she still doesn’t have answers to. As told to Yahoo’s Natalie Rahhal, Cariello shares how she’s navigating the news with her son.

My husband and I always say that Jack was born with autism — that’s our story, but it might not be everyone’s. There were red flags right away after Jack was born. He was very disconnected from us from the moment he was born. When I got home from the hospital after delivering my third son a year later, Jack walked right by me like I was a lamp. He just didn’t acknowledge my husband and me or his siblings as people in his world. He was diagnosed with autism spectrum disorder when he was just 18 months old. Jack is considered to be at level 1, meaning he’s what some people call “high functioning” and can handle basic life skills.

Before Jack’s diagnosis, I had zero knowledge about autism. My only exposure was watching Rain Man once with my mother when I was in high school. Back then, I often wanted to have someone to talk to who was five, 10, or 15 years ahead of me on this journey. But I am that person now.

‘Did I destroy our family?’

I was very young when I was pregnant with Jack — just 28. Tylenol was recommended as one of the few safe medications to take, but I don’t remember taking it during my pregnancy with Jack. I had five pregnancies. I treated them all the same, and only one of my five kids is diagnosed with ASD.

So when Jack asked me about Tylenol, I presented him with the facts: I did not take Tylenol — that was not our experience. But it may have been other people’s. I try to help Jack process information that’s presented publicly and may or may not relate to him. I’m not really anxious about it anymore. My husband, other children and I all know Jack is seeing the news and listening. I know these things will surface in my conversations with him because they have before.

When Health Secretary Kennedy said in April that “autism destroys families,” the first thing Jack texted me was, “Did I destroy our family?”

Jack is a consumer of news, but he has a naivete about him; he can be easily persuaded. To him, it’s black and white; if he hears it, it’s true. So my husband and I try to introduce shades of color into his thinking. We remind him that words like these are not something to take personally and that everybody has their own mountains to climb. We reiterate how truly proud we are that he lives in a world that’s not inherently made for him. He is pretty open to what we say. That’s the beauty of Jack: There’s a duality to him. Physically, he’s 21, but emotionally, he’s closer to 14. Jack worries about what’s right in front of him. He doesn’t form the emotional attachments to conversations like this that you or I might. He likes to perseverate on other things (movies and plans for outings, especially).

‘Grief and guilt are part of the journey’

Still, for mothers like me in our ASD community, guilt and grief are consistent themes — especially when we feel as though there is an accusation at play.

We all look back and wonder, “What could I have done differently? Did I take Tylenol when I was pregnant?” Guilt and grief are part of this journey; I don’t think that ever goes away. When I see kids Jack’s age flirting with girls or in a group together, I grieve. It’s a heartache by a thousand paper cuts. And Monday [when the FDA recommended against Tylenol during pregnancy] was certainly a day that just stings, more than anything because it’s just very divisive. We didn’t ask to have a son with a lifelong disability; he did not ask for this. Sometimes it feels like we’re thrust into the spotlight as pawns in political discourse. Is the mission really to discover? Is it really out of curiosity? I don’t know of any other disability that comes under this degree of scrutiny.

I talk often with my co-authors for Autism Out Loud. Their kids are younger, and each of our children have very different ASD profiles. But when autism bounces around the political discourse, we’re all struck by how polarizing it is in the ASD community. It seems like it disrupts us time and time again, and the divisiveness is the shame of it all.

As a community, we vacillate over whether autism is a gift or a superpower. I don’t subscribe to that. My son is a gift, and he has a few superpowers. But his disability is not a gift. Jack has a skill set that some other people with autism don’t possess. Some of my readers have said, “I wish my son could text me to ask if I took Tylenol during pregnancy.” But at the same time, Jack’s relative independence makes him a little more vulnerable in some ways; he’s out and about in the world without me all the time. But the message that we try to teach Jack and everyone else is that it’s perfectly OK to experience things differently. That’s the very essence of autism: It is so different from individual to individual.

‘At the center of this are human beings’

As parents, there is always the big question: Do we want to know where our children’s autism came from? I don’t really want to know. The root cause would be interesting to discover, but I just don’t think there’s one linear answer to it. I’m not a scientist, but I don’t think you can take something that affects a variety of people so differently and pinpoint one source, especially something as singular and finger-pointing as taking Tylenol during pregnancy. And now all of these pregnant women who may need pain relief are afraid to take Tylenol — as if that population isn’t already the most skittish, scared and nervous among us.

Some aspects of the conversation about the cause of autism is not unwarranted. I believe it’s genetic. My children are going to have children some day, and if their genetics combine with another environmental risk factor to raise autism risks, I would like them to go into family planning well-informed.

But we try to emphasize this to everybody in our family: It’s possible to be curious about why Jack is on the autism spectrum and embrace who he is.

More importantly, at the center of all of this are human beings who take in information, who process information — and words and how we present things matter. To toss around phrases like “an epidemic” is damaging. Jack just got a job after three months of searching and 22 interviews. How autism is presented to the world affects how employers might hire people on the spectrum and how others connect socially to people like my son. He didn’t want to tell employers that he has autism because he believed they would never hire him. At the center of this conversation is a 21-year-old young man — and other people with autism, who are like him and unlike him — trying to figure out how the world perceives him.