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Patient advocate and author Irene Tanzman discusses her article “A mother’s question about PCOS and her son’s autism.” Irene shares her personal journey as a mother to a son with severe autism and intellectual and developmental disabilities (IDD), exploring the challenging but necessary questions about the link between maternal PCOS (polycystic ovary syndrome), the modern metabolic crisis, and fetal neurodevelopment. Irene advocates for looking “upstream” at maternal health before conception, questioning if fertility treatments are addressing the underlying hormonal environment needed for optimal development. This episode dives into the realities of caregiving for severe autism, the need for better pre-conception support for women with PCOS, and the urgent call for a broader, more honest public health conversation. Learn why exploring maternal metabolic health is a critical, compassionate step toward understanding autism.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Irene Tanzman. She’s a patient, advocate, and author. Today’s KevinMD article is “A mother’s question about PCOS and her son’s autism.” Irene, welcome to the show.

Irene Tanzman: Thank you so much for having me on your show and thank you for publishing my piece on PCOS and autism.

Kevin Pho: Alright, now just briefly tell us a little bit about your story, and then we’ll jump right into your KevinMD article.

Irene Tanzman: I’m the parent of an adult with severe autism. He has severe autism, intellectual disability, and he has Crohn’s disease. I, like many other families, started out by trying to navigate the fragmented services that are available. Over time I realized that the system was not just broken, but that it was actively excluding families like ours from the decision-making. That’s what led me to advocacy.

It also led me to create a nonprofit organization called The Saving Rent and Hogan Alliance. The Saving Rent Hogan Alliance is a newly formed nonprofit coalition dedicated to including intermediate care facilities, and we’re working to prevent the closure of the two remaining state-operated ICF facilities in Massachusetts.

Kevin Pho: Alright. When you talk about some of the obstacles that prevent you from obtaining the services that you need, give us some examples of what that would look like.

Irene Tanzman: I’d like to compare the ICF model of care to home and community-based services. OK. The ICF model of care is what they call institutional care. It’s care for the remaining ICF facilities in Massachusetts. It’s care delivered on a campus with everything there. It’s all-inclusive, a bundled service. You get health care on-site and you get speech therapy, occupational therapy, and all of these things that we don’t get in home and community-based services.

Home and community-based services is under the illusion. It’s under the illusion that if somebody with a severe disability lives in a residential address, automatically they’re going to be integrated into the community. That’s not exactly true.

There are some people who are very impaired and they need help. They need direct speech therapy. They need professionals to help with learning activities of daily living. They need an occupational therapist. They need behavioral supports. None of these things are automatically available in home and community-based services. You have to fight for each one individually, and it is a very, very hard fight.

There are people who need these kinds of services. My son has Crohn’s disease. There’s no medical plan to oversee his chronic condition. That’s what I do. I’m an older person and I know that I’m not going to live forever. If he were at an ICF, he would get that.

Those are the differences, and those are some of the challenges that we have: medical care, allied health, even just disability-specific activities during the day. It’s very, very difficult to get those kinds of things. So, those are some of the challenges.

Kevin Pho: Sure. Those are some of the challenges. By ICF, of course, you mean intermediate care facilities, which are health care facilities that provide care for individuals who don’t need full hospital care but certainly more assistance than what’s offered in a typical residential setting. Right?

Irene Tanzman: That’s correct.

Kevin Pho: So let’s talk about your KevinMD article, “A mother’s question about PCOS and her son’s autism.” For those who didn’t get a chance to read that article, tell us what it’s about.

Irene Tanzman: I watched for many years as maternal health was sidelined in autism research. It’s not talked about too much. I had my own infertility journey at the time when I wanted to be pregnant with my son. I was diagnosed with PCOS and I was given a prescription for Clomid, and it was successful.

But I have questions in my own mind, as we have these people who normally would not have been able to get pregnant, getting pregnant. This was in the late 1980s, which is about the time when the autism increase happened.

I know that there is a link; it’s not a causation. But I think that this is worthy of consideration in research, so that’s what led me to write the article for your blog. I think we need to talk about this, and we need to talk about other causes as well, but I think maternal health should be a very big issue. We have an obesity epidemic, and that fuels PCOS; it makes it worse. I think that we should be looking into that.

That’s really what the article was about. It wasn’t about criticizing anybody for seeking infertility treatments. I did that myself. I don’t know if this is for sure a cause, but I just think it’s worth at least considering.

Kevin Pho: You write in your article that fertility treatments may enable conception but don’t correct a hormonal environment. Based on your experience, what do you wish you had known or been offered before conceiving?

Irene Tanzman: I wish… At that time, I don’t think anybody knew anything about that there could be a possible link. That came out years later.

But if it were today, I would want to know that this link does exist and maybe there are some things that you can do so that you would be more likely to have a positive outcome. A positive outcome is a healthy, normally developing baby.

You want to check the hormone levels to see if they’re good and maybe be on a certain diet, avoid sugar, whatever it is. I would have liked to have known that to give my baby the absolute best chance.

Kevin Pho: Now, during your years as a patient advocate, have you connected with others who were in a similar situation to where you were regarding that potential link between PCOS and neurodevelopmental disabilities?

Irene Tanzman: Yes. At one time, we had a support group that met regularly. We were sitting around the table discussing supports and services and, “How are we going to get this?” and, “How are we going to get that?”

The conversation led to infertility. Almost everybody at that table had some kind of infertility treatment, and it was mind-blowing. There were about a dozen women there, and I would say at least ten of them had some kind of infertility issue. Now, with the younger folks, I don’t really know if they’re given the information.

Or if we are that far along, they should be given the information that there is a link, but not necessarily a causation. I don’t think that it’s a reason not to seek, to say, “Oh, well, I don’t want to seek infertility treatments.”

I just think that there might be some things that a prospective mother could do to make the environment for the fetus a little bit better. Yes, I think that there should be a conversation about it.

Kevin Pho: In your article, you make a distinction between the common portrayals of autism and your son’s severe disability requiring round-the-clock care. Why is it important for the public and policy-makers to understand that difference?

Irene Tanzman: Well, because I’m sure you saw on TV RFK’s definition of autism. He used the absolute most impaired example of the absolute most impaired person. My son isn’t as impaired as what he described, but he is significantly impaired.

We basically have been cut out of the discussion. The lawmakers seem to only listen to the self-advocates or listen to disability organizations that have ties to corporate providers. They really don’t listen to the parents. We need services. We are desperate. People like me, baby boomers, know that we are in our last years of living, and we’re going, “What are we going to do?” Some don’t have any services at all.

I would be considered one of the lucky ones because my son has a group home. He has a day program. I would be considered lucky, but I know that there would be a big problem if I were to pass away. When you become a senior citizen, it’s realistic to think about that.

We desperately need services. We desperately need a seat at the table. That’s the reason why it’s important. The other thing that the public should know is because a lot of money is being spent on this, they need to know that it’s not reaching the people who need the help. The money that’s being allocated is not really reaching us.

Kevin Pho: You have been a patient advocate and, of course, a mother of a son with autism. Tell us what kind of advice you could share with other caregivers who may be in a similar position to where you are.

Irene Tanzman: I think that it requires a lot of courage. A lot of courage to stand up to the gatekeepers. It’s very easy to be canceled. Parents of children with severe autism especially have been bullied online. You have to be strong, stand with your convictions, have a lot of courage, and keep on fighting because that’s all we can do.

Kevin Pho: When you talk about PCOS, maternal health, and autism, and you’re speaking from the perspective of an advocate and a mother, what kind of response have you received when raising these questions about maternal metabolic health?

Irene Tanzman: The conversation always veers off into vaccines, Tylenol, and other things. Not that those things don’t deserve some kind of attention. I just think that this should be added. But whenever I mention it, people who have had infertility problems usually are quite receptive to it.

People who haven’t, it usually veers off into a political discussion or something else. That’s been the reaction.

I like the fact that RFK is putting severe autism front and center because what my son has isn’t something to be celebrated. It isn’t a gift. It isn’t, “Light it up blue, it’s just wonderful.” It’s not wonderful. It’s something that we need to look into and we need to try to prevent. If we can’t prevent it, we need to be able to support people who have severe autism and their families.

Kevin Pho: We’re talking to Irene Tanzman, patient advocate and author. Today’s KevinMD article is “A mother’s question about PCOS and her son’s autism.” Irene, let’s end with some take-home messages you want to leave with the KevinMD audience.

Irene Tanzman: OK. I would like to say that don’t assume that families are just caregivers. We’re also the data-holders. We are the watchdogs. We are the collaborators. Listen to us early, not just when things go wrong. We really, really need your help.

We really need clinicians to embrace the full continuum of care and talk about how this is needed, that some people need some oversight of their medical care. Some people need allied health services. Please help us advocate.

The other thing is, when you have somebody like this in your office, you have to make sure you write everything down. You have to write everything down in terms of what a patient with severe autism would need so that the families can advocate from that document.

And the other thing is, if you are dealing with infertility patients, maybe this would be worthy of a discussion: PCOS and autism.

Kevin Pho: Irene, thank you so much for sharing your story, time, and insight. Thanks again for coming on the show.

Irene Tanzman: And thank you so much for having me.