Autism Labs

Vaccines, Tylenol, Leucovorin & Autism: What Parents Need to Know About Common Concerns

• Autism Labs Community • Season 4 • Episode 20

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Autism is a lifelong neurodevelopmental condition that ranges from full independence to requiring 24/7 care, as with Mike and Kay’s son Michael. Research has disproven the myth that vaccines cause autism; while acetaminophen use in pregnancy has shown weak associations, experts point to underlying illness as the real risk, and it remains medically recommended. Treatments like leucovorin help only a small subset, though folic acid sometimes calms Michael. After 35 years, Mike stresses that progress comes not from chasing “cures” but through steady, practical strategies—early intervention, managing seizures and sleep, building structure and communication supports, respite care, and a reliable professional team. For families, hope lives in small victories, meaningful connections, and the resilience fueled by love.

Mike Carr (00:05):

This week I want to talk to you about the claims we've all heard tying autism to vaccines or to Tylenol. I also want to talk to you about Leucovorin as a treatment for autism. Now, if you're a parent, especially of an adult with severe autism, it's really hard to know what to believe. My wife and I have been on this journey since 1990 with our son, Michael, who does have severe autism, and we're not doctors, but we stayed close to the research and to a community of clinicians and doctors and therapists and academics and other parents. So today, I thought it might be helpful if I share with you some of what we've learned. So first of all, you cannot catch autism. It is not contagious. It's a neurodevelopment condition. It has to do with how your brain develops. It often begins before birth and continues on during early childhood.

(00:54):

But that single word autism, scary, right? But it covers a huge range of support needs. Think of the word cancer. The impact of cancer varies greatly depending upon the type of cancer you have and when you catch it. For example, I've had basal cell skin cancers removed for years. I know it's ruined my Hollywood. Good luck. Not that I ever had any Hollywood good looks, but it's really just more of an annoyance than anything else. I've got to go into my dermatologist every so often and have them scrape the basal cell off, and that's pretty much it, not life altering. However, I had a relative who faced breast cancer, whole different ball game. She had surgery, chemo, radiation, and it was a devastating outcome in the long run for her and her family when she ultimately passed away, the type of cancer and how advanced or severe it was really mattered. And autism is similar. Many autistic people can speak, they can work, and they can live independently with only some support. Others, like our son need one OnOne supervision all day, every day, 365 days a year. Michael's nonverbal. He has seizures, Pika behavior. Sometimes he can be aggressive. Public outings can be hard. Vacations are rare. My wife has had two full-time jobs for decades, really? So severe autism reshapes your life forever.

(02:20):

So let's talk about vaccines and autism. Let's start with vaccines. There have been studies for decades, 10, 20 years, that show vaccines do not cause autism. Leading institutions. Reiterate this every year. Earlier this week, there was an article in the MIT technology review where they went through all the data, and I'll include a link in the show notes. So you can see that Johns Hopkins said that the most recent evidence rules out vaccines as a cause. So folks, it's just not going to help to not vaccinate your kids if you're worried about increasing the likelihood of them getting autism. There's no data to support that. Zero. Okay? Now let's talk about Tylenol and acetaminophen, which is that active ingredient, especially during pregnancy. Does acetaminophen increase the risk of autism if you're a mom and you're pregnant? So some studies do show a small association. Oh, however, if you're a scientist, if you're a researcher, the discussions around, well, was it really this Eden?

(03:22):

Was it really the taking of the Tylenol that caused the problem or was it why you were taking it? That probably increased the likelihood of having an autistic child. If you have a high fever mom and you let that high fever go on for a while and you're pregnant, that can actually impact the health of your kiddo. That's proven. That's fact or an infection, or if you have some autoimmune condition. So the body of research is that if you have a high fever, every doctor, every clinician is still saying, get that fever down. And Tylenol is known to do that. You don't take more than you need to. You don't take it for too long, but you're actually going to provide a much better environment for your infant in your womb by getting that fever down than any risk at increasing the likelihood of them getting autism.

(04:07):

So there've been other studies, and I'll put these in the show notes. There's a Swedish study where they didn't show any causal effect. Medical bodies like A COG and SM fm continue to advise that you take acetaminophen. If you do have that fever or an infection during pregnancy, just use it under the advice of your doctor. We wouldn't suggest you go out and we can't give you medical advice. So none of this, please don't view anything that I'm telling you is medical advice. We're not doctors, we're just speaking from our own experience. But bottom line, don't suffer that fever. Don't run the risk for your kid. Okay? Now, let's talk about lorrin. Leucovorin is really folic acid or folic acid? Is it a treatment for autism? So here's what the research shows. Pretty darn interesting. There's a very small subset of kids. There are a few kids out there that have something called CFD, which stands for cerebral folate deficiency.

(04:57):

And that is a problem transporting folate into the brain. Your brain does need folate to operate properly. They exhibit autistic characteristics. When they don't get enough folate in the brain, you don't necessarily have autism. They just exhibit those characteristics. In those cases, if you do, if a physician does prescribe lorrin, you may see a big impact on their behavior and everything else, but there aren't very many of those kiddos. So the evidence, the research overall shows that it doesn't have a whole lot of impact on the vast majority of folks that are autistic. Now, what's our personal experience? We haven't tried. We have tried the active ingredient, which is folate acid or folic acid, and we've tried different varieties, and we've done this for years. It certainly doesn't cure autism, but it has improved Michael's behavior in certain situations, like when he's really hyped up, when he's really aggressive, when he's stressed, when he has lots of anxiety and he just won't go to bed if we give him some, sometimes, not always, but sometimes it really does calm him down, and there doesn't seem to be much of a side effect.

(05:56):

So under the guidance of your doctor, again, I don't think that's a very high risk proposition to try folic acid or lorrin just to see if it does make an impact. Maybe not all the time, but when your kiddos are really having some problems with their behavior. So that's been our own personal experience. But here's, I think the key takeaway that we've learned. Again, 35 years of doing this, don't focus on the silver bullet. We have tried. I can't tell you how many silver bullets and magical therapies and this is, and they just don't work. I'm not saying you shouldn't research 'em. You shouldn't be aware of them, but don't get your hopes up. Instead, focus on what really matters day to day, especially if you have a child that's been diagnosed as autistic. Number one, immediate intervention and therapy. The sooner you can get your child, especially if they're like a year or two, two and a half years old into therapy, while that brain is still developing and you can impact that abnormal development and maybe refocus it or correct it, man, that's where you can make the biggest difference.

(06:49):

And that's where some of the research, and I think where a lot of the therapists and clinicians are most optimistic, catch it quick, get the kiddos right into therapy and help them down the road with perhaps a less severe form of autism as a result. Or maybe it almost totally goes away, right? Don't know again, but that's just what some people that we know have said. Another thing, number two, safety and health first. So if your kid has seizures, like our son does, manage the seizures, right? Seizures can cause all kinds of brain problems. Gi, nutritional, digestive issues and sleep issues. Try to get those managed too enough. Sleep makes a big difference. And just better behavior supports all the way around. Those make for better days for everybody, not just your son or daughter, but the whole family. And then provide structure. I had a podcast just in the last episode or two where I've talked about how important visual schedules are routines.

(07:35):

Downtime tends to cause problems, especially with this population, especially with our son, folks like him that are severely autistic. So having some kind of a schedule after school on the weekends when his colleague or others aren't around can really make a difference. Activity with breaks reduce anxiety. They reduce incidents. Communications is huge. I did a podcast just the other day with an ABA mom, and she was talking about she was a BCBA and she was talking about how communications can be. The lack of communications can be the source of anxiety, stress. You don't know what's going on. So whatever way your child communicates, if they're nonverbal, use an iPad and some of the apps I talked about on the other episode or signs or gestures, but you've got to figure out a way to communicate with them. So hopefully they're not unaware of what's about to happen.

(08:20):

They get all freaked out because something that's unexpected all of a sudden occurs. That's why structure is so important. You have trouble communicating with them, having that structured day in and day out. So there's this routine that they can sort of get used to and aren't those big surprises that maybe freak 'em out seems to be a good alternative as well. And then community and respite, you need rest, families need rest. Regular trusted respite is not a luxury. It's really crucially important. In Austin, Texas, where we're located, we started an R to R program, which stands for Respite to Residential through our nonprofit, John 13 or J13. You can go to j thirteen.org and check us out. It's made a huge difference. The staff knows the kids. They can spend a night or two or three or a whole week, and mom and dad get to go out on a date.

(09:02):

They get to take a vacation maybe with the rest of the family. Game changer, big deal. And also have a team sport mindset. Bring everybody on their team together and work with them. Behavior analysts, neurologist, your primary care doc, your therapist, the direct support staff, everybody get 'em lined up on that same plan. So quick fact, check on the things that I've covered. Vaccines number one, do not cause autism. This is irrefutable. You can be skeptical, but the science just shows you vaccines do not cause autism. Using Tylenol when indicated, even if you're pregnant, to reduce a high fever to control an infection or some autoimmune issue is probably a pretty good thing to do, right? There's no evidence that says acetaminophen, the active ingredient in Tylenol is the cause of higher incidence of autism. There are some associations, but when you look at the data, many folks feel it's the reason you're taking it.

(09:54):

It's that infection, that disease that's causing a higher incidence of autism, not the Tylenol itself. And then let's talk about lorrin. It may help a subset, and in our opinion, it's fairly low risk. Again, check with your doctor. So why not give it a try? Or why not give an alternative that's less expensive than lorrin, like just folic acid or supplement like that? Give it a try and see if it works for behavior control. It's not going to cure autism. It will not treat everything about autism, but it might help you mitigate or manage behavior, especially when your kiddos super stressed out. So in conclusion, I think we want to try to give you guys hope. I think that's been the biggest thing in our journey that's been so important. Our kids, as I said, 35 years old, he has profound needs. Those needs are never going to go away, and it's easy to feel exhausted, especially my wife who's working 80, 90 hours a week between taking care of Michael and everything else that she's got on her plate.

(10:43):

And it's natural to grasp at headlines and those silver bullets hoping for that simple answer, right? It'll fix everything. But man, we've been there. We've been there for 30 years, 35 years. I don't think it's going to happen, at least not overnight, and not with a body of scientists behind it saying, yeah, this probably is going to move the needle. So the journey of severe autism or complex special needs, even if we're not talking about autism, here is a landscape of lots of crazy theories, lots of bogus claims, and every now and then a little glimmer, just a little glimmer of hope for a few folks that have autism or have other needs. But the real hope, the thing I think to really get excited about isn't in a magic pill or that big breakthrough. It's this optimism that we found just in the little incidents, the small victories, day to day, a calm afternoon, a moment of connection with your son without any words, it comes up and just gives you that hug, that big smile when he's happy.

(11:34):

That is huge, right? And then you build that support system that understands him and finds his or her superpower and doesn't, judge doesn't try to change, but trying to lean into what makes them so incredible and leverage that to give them more joy and more fulfillment in their life. You are an incredibly resilient, and I think you'll discover that on this journey. And your child is too, and it's a marathon man. This is not a sprint. So what you have to do is take care of yourself, and you have to be aware of and give yourself kudos for the progress you've made, the patience you've shown, and forgive yourself when you've gotten a little stressed out. This is what it's all about, profound, unconditional love. It'll reshape your world, reshape your kid's world, and it's a hope worth holding onto every single day. Thanks for listening in and besides taking care of your special needs child, be sure and take care of yourself. Do see you. Until next week.