Local autism advocates worry about stigma amid unfounded federal claims, fraud locally
U.S. President Donald Trump (C), alongside Secretary of Health and Human Services Robert F. Kennedy Jr. (L) and Medicare and Medicaid Administrator Mehmet Oz (R), speaks about autism in the Roosevelt Room of the White House in Washington, D.C. on September 22.
Photo by Saul Loeb | AFP via Getty Images
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Audio transcript
[MUSIC PLAYING] NINA MOINI: Our top story today, under President Donald Trump and Health Secretary Robert F Kennedy, Jr., the federal government is putting a lot of attention on autism. Scientists and doctors criticized Trump's debunked statements about the causes of autism from a press conference he held earlier this week. Advocates of autistic people and their families are also raising concerns about the way the president talks about autism.
DONALD TRUMP: When you go from all of those healthy babies to a point where-- I don't even know structurally if a country can afford it. And that's the least of the problems. To have families destroyed over this is just so, so terrible.
NINA MOINI: The Autism Society of Minnesota released a statement yesterday, calling this language dehumanizing and harmful. Joining me now to talk about this is the organization's Executive Director, Ellie Wilson. Thanks for joining us this afternoon, Ellie.
ELLIE WILSON: Hi.
NINA MOINI: Also joining me is Communications Director Zephyr James, who was diagnosed with autism as an adult. Thank you for joining the program as well, Zephyr.
ZEPHYR JAMES: Thanks. I'm happy to be here.
NINA MOINI: I wanted to start, Zephyr, with you, if I could. Would you start by telling me more about the Autism Society's response to just some of the language we've been hearing from President Trump? We just played a cut from the president and Robert F Kennedy. How are you feeling in response to that?
ZEPHYR JAMES: Yeah, I would say that both myself and most of the folks that I've talked to are feeling disheartened and angry about the language that we're hearing. Regardless of your feelings about the politics of the matter, about causes, about cures, saying that autistic people destroy families, or that they are a burden, or that it is terrible, is incredibly stigmatizing. It's really tough to hear it as an autistic person. And I know that it also opens the door for the people around me to view me as a burden in a really stigmatizing way. And that's just very challenging.
NINA MOINI: Ellie, when you hear from Zephyr-- and thank you for sharing that, Zephyr-- what do you want people to understand about what autism is? Because this is something that people may not a lot about. And when people don't have a good idea of what something is or the body of research that exists around it, that's when they can fall victim to misinformation or try to fill in the blanks themselves. Would you want to start at the beginning and let us know what autism is and what is known about any possible causes?
ELLIE WILSON: Sure. Well, autism is what's classified as a neurodevelopmental disability, which just means it affects the way an autistic person's brain develops over time in highly complicated fashions, starting from the time that they're born or even before. Autism affects 1 in 31 people nationally and 1 in 28 people here in Minnesota. So the community is growing and diversifying. And the spectrum is very wide. I'm sure you know at least two autistic people. And I bet they are quite different from each other.
There are some autistic people who require a lot of support in order to be safe or healthy, whether that's help with things like getting dressed, or eating, or using a restroom, people who might need a lot of supervision throughout the day. There are also plenty of autistic people who are harboring more of an invisible disability but may still process information, communicate, and express themselves, or have needs that are more similar across that wide spectrum than you might think.
Now, when it comes to causes, here's what we know. Let's start with the facts that are generally confirmed and accepted by all groups. We know that there is a heritable component to autism, which means it's quite common for autism to pass down across generations, even if older generations were never formally diagnosed.
We also know that about 10 years ago, psychiatrists across the nation expanded the diagnostic criteria for autism because we used to only understand autistic people in that very high needs, stereotypical profile. We're now learning to better understand autism not only across a broader spectrum of need, but across a broader spectrum of diversity. So what do autistic girls look like? What do autistic adults look like who didn't get diagnosed as kids? What do autistic people of color look like? And how might their culture impact their presentation of autism?
What's actually really exciting is we understand autism better than we used to. And those numbers reflect this. We're also working harder at screening more people for autism proactively because we know young autistic people benefit from supports as early as we can offer them. And that's part of what explains not just the cause, but this large rise in prevalence that's giving a lot of people cause for concern.
NINA MOINI: Zephyr, how hard is it in your role, talking about communications and just all of the different misinformation and things that are out there? Has it become harder to sit with people and sit with parents and talk about autism? One of the things that we've seen come out of the administration is this idea that, well, this hasn't been studied. So how do we know it's not related? Do you understand what I'm saying? So without knowing exactly what has been studied and what hasn't yet, how hard is it to talk about it?
ZEPHYR JAMES: Yeah, that's a great question. I think one of the best examples of this is that prior to this administration, a lot of us here at The Autism Society kind of felt like we could put the vaccine question behind us for the most part. We had almost moved on from it. There were still some people who were concerned about that connection, but it was not a lot of people. And today, that is something that we feel we have to address really actively and really openly because that question has been reopened so aggressively.
And when I hear things like, well, we haven't studied it, there have been so many studies on so many of these things. Vaccines have been studied over and over and over again. And there has not been any link found. Thinking of the connection with Tylenol, the largest study to date, which was a 2024 study of more than 2 million children, found no causal relationship between autism and Tylenol. And that was once they took family factors into account.
So yes, the science around causes is really complicated. And that makes communicating about it really challenging. There are lots of studies happening at any given point in time. And many of them find correlations. And a lot of families who are struggling, and who are scared, and who are looking for some sort of answer, grab on to that very quickly.
And so something that I want to remind people is that any time you see one study that says there might be a link, that is really early research. And it is good to wait and see and take into account the fact that what we absolutely know is that there is a genetic component. In twin studies, 90% of the time, if one twin has autism, the other one does as well. So that there's a significant genetic component. And that's something that I really try to get back to when I'm speaking with families.
NINA MOINI: Thank you for that. Ellie, I want to zoom in, too, just on Minnesota and what is going on right now with this recent story about some of the criminal charges from the federal government against some people who were misusing funds allegedly, related to autism centers and autism treatment.
Research has shown that Somali people have a higher rate of autism. And my understanding is from people that I've interviewed, that there's been a lot of effort around trying to curb some of the misinformation, particularly among Somali Minnesotans and Somali families, to try to get some of that more buy-in and education around it. I'm just wondering how you are navigating these cases of fraud in the autism world. Are you concerned about more misinformation coming out of this?
ELLIE WILSON: Absolutely. It is a complex question. So let's start from the beginning. I think the main thing that I want people to hear loud and clear, when they start to hear the words autism and fraud associated in the news, is that it is not autistic people that perpetuate fraud. This is not a situation where autistic people or people without autism are somehow seeking services that they don't need or are taking money from anyone or being fraudulent themselves.
Our community of autistic people are victims of fraud when these types of cases happen. It is quite a complex landscape that is ripe for fraud, unfortunately, because of the way that we have neglected the regulation of autism services over time, in part because it hasn't been a priority, necessarily, for not just our Department of Human Services, who do what they can, but there has to be greater collective will to provide ethical, high quality, and safe services to disabled and autistic people. And frankly, it doesn't often make the top of the docket for a lot of our leadership locally, especially without collaboration from organizations like The Autism Society of Minnesota.
So, yes, I am deeply concerned that this is yet another sort of chain around our neck when it comes to how autistic people are really, really a punching bag for a lot of these crises right now. This in combination with the kind of dehumanizing language and flat-out misinformation that's being perpetuated by federal leadership just adds to the list in ways in which autistic people are individually and collectively just being bullied right now. And frankly, they need our support. They need us to step up and be allies with them.
NINA MOINI: Zephyr, I'd like to give you the last word here. Is there anything you want to say to families who are listening, who have been touched by autism in their lives?
ZEPHYR JAMES: Yeah. I think what I would say is that everyone in the autism community is, or at least should be, on the same page when it comes to our priority, which is making sure that everyone who is autistic has the supports that they need to live a fulfilled and good life. And that means that we need to treat them with respect and with dignity and as whole people who bring a lot to our lives. And that should be what we are focused on.
NINA MOINI: Zephyr and Ellie, thank you very much for coming by Minnesota Now. I appreciate it.
ZEPHYR JAMES: Thank you.
ELLIE WILSON: Thanks. We appreciate it too.
NINA MOINI: Zephyr James is Communications Director for The Autism Society of Minnesota, and Ellie Wilson is the organization's Executive Director.
DONALD TRUMP: When you go from all of those healthy babies to a point where-- I don't even know structurally if a country can afford it. And that's the least of the problems. To have families destroyed over this is just so, so terrible.
NINA MOINI: The Autism Society of Minnesota released a statement yesterday, calling this language dehumanizing and harmful. Joining me now to talk about this is the organization's Executive Director, Ellie Wilson. Thanks for joining us this afternoon, Ellie.
ELLIE WILSON: Hi.
NINA MOINI: Also joining me is Communications Director Zephyr James, who was diagnosed with autism as an adult. Thank you for joining the program as well, Zephyr.
ZEPHYR JAMES: Thanks. I'm happy to be here.
NINA MOINI: I wanted to start, Zephyr, with you, if I could. Would you start by telling me more about the Autism Society's response to just some of the language we've been hearing from President Trump? We just played a cut from the president and Robert F Kennedy. How are you feeling in response to that?
ZEPHYR JAMES: Yeah, I would say that both myself and most of the folks that I've talked to are feeling disheartened and angry about the language that we're hearing. Regardless of your feelings about the politics of the matter, about causes, about cures, saying that autistic people destroy families, or that they are a burden, or that it is terrible, is incredibly stigmatizing. It's really tough to hear it as an autistic person. And I know that it also opens the door for the people around me to view me as a burden in a really stigmatizing way. And that's just very challenging.
NINA MOINI: Ellie, when you hear from Zephyr-- and thank you for sharing that, Zephyr-- what do you want people to understand about what autism is? Because this is something that people may not a lot about. And when people don't have a good idea of what something is or the body of research that exists around it, that's when they can fall victim to misinformation or try to fill in the blanks themselves. Would you want to start at the beginning and let us know what autism is and what is known about any possible causes?
ELLIE WILSON: Sure. Well, autism is what's classified as a neurodevelopmental disability, which just means it affects the way an autistic person's brain develops over time in highly complicated fashions, starting from the time that they're born or even before. Autism affects 1 in 31 people nationally and 1 in 28 people here in Minnesota. So the community is growing and diversifying. And the spectrum is very wide. I'm sure you know at least two autistic people. And I bet they are quite different from each other.
There are some autistic people who require a lot of support in order to be safe or healthy, whether that's help with things like getting dressed, or eating, or using a restroom, people who might need a lot of supervision throughout the day. There are also plenty of autistic people who are harboring more of an invisible disability but may still process information, communicate, and express themselves, or have needs that are more similar across that wide spectrum than you might think.
Now, when it comes to causes, here's what we know. Let's start with the facts that are generally confirmed and accepted by all groups. We know that there is a heritable component to autism, which means it's quite common for autism to pass down across generations, even if older generations were never formally diagnosed.
We also know that about 10 years ago, psychiatrists across the nation expanded the diagnostic criteria for autism because we used to only understand autistic people in that very high needs, stereotypical profile. We're now learning to better understand autism not only across a broader spectrum of need, but across a broader spectrum of diversity. So what do autistic girls look like? What do autistic adults look like who didn't get diagnosed as kids? What do autistic people of color look like? And how might their culture impact their presentation of autism?
What's actually really exciting is we understand autism better than we used to. And those numbers reflect this. We're also working harder at screening more people for autism proactively because we know young autistic people benefit from supports as early as we can offer them. And that's part of what explains not just the cause, but this large rise in prevalence that's giving a lot of people cause for concern.
NINA MOINI: Zephyr, how hard is it in your role, talking about communications and just all of the different misinformation and things that are out there? Has it become harder to sit with people and sit with parents and talk about autism? One of the things that we've seen come out of the administration is this idea that, well, this hasn't been studied. So how do we know it's not related? Do you understand what I'm saying? So without knowing exactly what has been studied and what hasn't yet, how hard is it to talk about it?
ZEPHYR JAMES: Yeah, that's a great question. I think one of the best examples of this is that prior to this administration, a lot of us here at The Autism Society kind of felt like we could put the vaccine question behind us for the most part. We had almost moved on from it. There were still some people who were concerned about that connection, but it was not a lot of people. And today, that is something that we feel we have to address really actively and really openly because that question has been reopened so aggressively.
And when I hear things like, well, we haven't studied it, there have been so many studies on so many of these things. Vaccines have been studied over and over and over again. And there has not been any link found. Thinking of the connection with Tylenol, the largest study to date, which was a 2024 study of more than 2 million children, found no causal relationship between autism and Tylenol. And that was once they took family factors into account.
So yes, the science around causes is really complicated. And that makes communicating about it really challenging. There are lots of studies happening at any given point in time. And many of them find correlations. And a lot of families who are struggling, and who are scared, and who are looking for some sort of answer, grab on to that very quickly.
And so something that I want to remind people is that any time you see one study that says there might be a link, that is really early research. And it is good to wait and see and take into account the fact that what we absolutely know is that there is a genetic component. In twin studies, 90% of the time, if one twin has autism, the other one does as well. So that there's a significant genetic component. And that's something that I really try to get back to when I'm speaking with families.
NINA MOINI: Thank you for that. Ellie, I want to zoom in, too, just on Minnesota and what is going on right now with this recent story about some of the criminal charges from the federal government against some people who were misusing funds allegedly, related to autism centers and autism treatment.
Research has shown that Somali people have a higher rate of autism. And my understanding is from people that I've interviewed, that there's been a lot of effort around trying to curb some of the misinformation, particularly among Somali Minnesotans and Somali families, to try to get some of that more buy-in and education around it. I'm just wondering how you are navigating these cases of fraud in the autism world. Are you concerned about more misinformation coming out of this?
ELLIE WILSON: Absolutely. It is a complex question. So let's start from the beginning. I think the main thing that I want people to hear loud and clear, when they start to hear the words autism and fraud associated in the news, is that it is not autistic people that perpetuate fraud. This is not a situation where autistic people or people without autism are somehow seeking services that they don't need or are taking money from anyone or being fraudulent themselves.
Our community of autistic people are victims of fraud when these types of cases happen. It is quite a complex landscape that is ripe for fraud, unfortunately, because of the way that we have neglected the regulation of autism services over time, in part because it hasn't been a priority, necessarily, for not just our Department of Human Services, who do what they can, but there has to be greater collective will to provide ethical, high quality, and safe services to disabled and autistic people. And frankly, it doesn't often make the top of the docket for a lot of our leadership locally, especially without collaboration from organizations like The Autism Society of Minnesota.
So, yes, I am deeply concerned that this is yet another sort of chain around our neck when it comes to how autistic people are really, really a punching bag for a lot of these crises right now. This in combination with the kind of dehumanizing language and flat-out misinformation that's being perpetuated by federal leadership just adds to the list in ways in which autistic people are individually and collectively just being bullied right now. And frankly, they need our support. They need us to step up and be allies with them.
NINA MOINI: Zephyr, I'd like to give you the last word here. Is there anything you want to say to families who are listening, who have been touched by autism in their lives?
ZEPHYR JAMES: Yeah. I think what I would say is that everyone in the autism community is, or at least should be, on the same page when it comes to our priority, which is making sure that everyone who is autistic has the supports that they need to live a fulfilled and good life. And that means that we need to treat them with respect and with dignity and as whole people who bring a lot to our lives. And that should be what we are focused on.
NINA MOINI: Zephyr and Ellie, thank you very much for coming by Minnesota Now. I appreciate it.
ZEPHYR JAMES: Thank you.
ELLIE WILSON: Thanks. We appreciate it too.
NINA MOINI: Zephyr James is Communications Director for The Autism Society of Minnesota, and Ellie Wilson is the organization's Executive Director.
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