No love (on the spectrum) for RFK Jr.

0:00Health and Human Services Secretary Robert F. Kennedy Jr. believes autism is preventable. He believes science can find the root cause, and he believes the root cause is something in our environment. Here he is at a press conference last month. This is coming from an environmental toxin, and somebody made a profit by putting that environmental toxin into our air, our water, our medicines, our food. Right now, the science suggests there may be environmental factors, among other things, at the root of autism. But it was RFK's description of autistic people that stoked outrage. This is the same press conference.

0:35These are kids who will never pay taxes. They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date. On Today Explained, what RFK gets wrong according to science and according to some people who did date and who found love on the spectrum.

1:07You're listening to Today Explained. RFK Jr.'s conviction that autism is caused by something in the environment, in the air or water or vaccines, simply cuts against what most science suggests, that environment may be a factor. So where did he get this idea? Catherine Wu is a science writer for The Atlantic, and she recently set out to answer that question. So it's not totally clear where and when this kernel got planted in RFK's head. I think certainly we have to acknowledge that, you know, by the early 2000s, this idea that autism was maybe caused by vaccines. And, you know, this has been pretty thoroughly debunked over and over again.

1:49But this idea had sort of entered the mainstream in large part due to this since retracted study published by Andrew Wakefield that seemed to draw that link. The conclusion was that there is a bowel disease in children with autism, which is new, which has not been investigated before. That this may well be related to the developmental regression since they had occurred at around the same time. And that the association, the parental association with MMR exposure needed to be thoroughly investigated. He is a former physician who was at one point studying vaccines and autism. A decades-old study that said vaccines cause autism is now being called an elaborate fraud.

2:31The allegations against me and against my colleagues are both unfounded and unjust. Did you have some sort of preconceived notion of a link between the vaccine, MMR, and autism before you conducted this study? Absolutely not. Dr. Gupta, please, I urge you, go and read my book. You will understand it. Many people don't. The parents understand it. They get it because they've lived it. This was a hugely problematic study. It turns out the data was cherry picked and manipulated. And, you know, Wakefield himself had conflicts of interest that certainly made it in his best interest to seemingly find such a link.

3:09You did have a lawsuit against manufacturers of the MMR vaccine, didn't you? I mean, didn't you have a financial conflict of interest? If I could just answer, Anderson, the paper that was published in the last, it received not one cent of funding from lawyers or litigators. Sir, did you not have a financial interest? This is around the time when at least a few concerned mothers went to RFK in his capacity as an environmental lawyer saying, I'm really worried about some of the stuff that's in the vaccines that are being given to my kids. She found my home. She came to it. She took out of the trunk of her car a pile of scientific studies that was 18 inches thick.

3:52She put it on my front porch, my stoop, and then she rang the bell. And then she pointed to that pile and she said, I'm not leaving here. Do you read those? I don't know if this is why they've been behaving differently or they seem to be different from other kids. Her son, Porter Bridges, had been a perfectly healthy kid, got a battery of vaccines when he was two and lost the ability to speak. He lost the ability to he lost his toilet training. By this point, RFK started calling around different vaccine experts and started like interrogating this question in earnest. And that seems to be where this idea really picked up for him.

4:30Now that RFK Jr. is heading up the Department of Health and Human Services, how is he changing the way that department approaches autism? RFK has been really pushing this idea that HHS is going to lead a bunch of new studies into determining the cause of autism. We're going to follow this science no matter what it says, and we will have some of the answers by September. which at the time he first started saying this was, you know, like four and a half months away, like very ambitious timeline, and also incredibly ambitious to talk about finding a potentially singular cause of autism, which it's certainly not to imply that nothing at HHS was looking into autism or that people weren't paying attention to this.

5:18But the idea here is that it was being really heavily prioritized and that this was coming directly from the White House, that it was certainly a priority for President Trump and, you know, his top allies to figure out the cause of autism, and then to get rid of it. How does he plan to do that? What is HHS going to do specifically? You know, it's a fantastic question, and I actually don't have a great answer for you because I'm not sure anyone has a great answer for you, and I am including the folks at HHS. Huh. The messaging around this has been incredibly muddled with such an ambitious timeline.

5:52I mean, They would need to be working, I would say, nonstop, and they would still not even scratch the surface by September. But it seems that there is not a clear-cut plan. To sort of illustrate this a little more, you know, there's been a lot of talk from Kennedy saying... So it's going to be done by credible scientists, by the most credible scientists from all over the world, and we're going to do it very, very quickly. Then later at a press conference, he was talking about, you know, looking through electronic health records. Because of AI and because of the digitalization of health records and the mass of health records that are now available to us, we can do this much more quickly than has ever been done in the past.

6:34kind of mining existing literature to see if there's a link that's been missed or hasn't been definitively pinpointed. And then, you know, there was additional talk out of NIH about how part of this effort may involve looking into private health data from pharmacies, hospitals, even smartwatches. But some of that was later walked back after, you know, a bunch of privacy concerns emerged. So it seems like there is a lot of chatter about there being this incredibly ambitious, expensive, accelerated effort with a goal very clearly in mind. But I'm not sure a plan has really come into formation yet.

7:12And frankly, it may take until September for a good plan to come together, if that is indeed their intention. As they attempt to find the cause of autism, we know that RFK thinks vaccines cause it. do we have a sense that he wants government scientists to prove that is true? I would suspect that is influencing their thinking quite a bit. I mean, it's already been reported that he has tasked AHS with looking into that link, you know, under the supervision of this guy named David Geyer, who himself has a history of really hawking this idea that vaccines cause autism, again, repeatedly disproved, but there are certain people who will not let that bone go.

8:01And then, you know, with this new HHS-wide effort that's come into the news this month, Kennedy has not leveraged vaccines as often. You know, his discourse has primarily been around, you know, a quote-unquote environmental toxin. He's talked a lot about this idea that someone in industry has been putting this out into the environment. It's, you know, poisoning our kids and someone's making a profit over this. I do not know of any evidence that, you know, really strongly supports that. I don't know to what he's referring, but it seems very clear that no matter what toxin or toxins or exposures he has in mind, he does have a select few in mind, and he's already crafted the story that he is setting out to prove.

8:44And I think the huge issue with that is that's just not how you do science. You don't go out to prove a narrative that you've already decided is true. You go out and try and look for the evidence and see if a story emerges that is supported by the evidence that you find. You know, in recent decades, the definitions of autism have changed, the way that physicians have approached treating autism have changed, and, you know, awareness of autism has certainly grown. But I think really the only consensus that has emerged over decades of research is that this is a really complicated multifactorial condition.

9:18It may even be unfair to call it a single condition because of how diverse it is. And there's a really strong genetic component. So to really just hook onto this idea that it's something in the environment that is causing this quote-unquote epidemic, it's a potentially very problematic way to view things, especially if that's going to influence policy around handling autism in this country.

9:51That was Catherine Wu of The Atlantic, coming up Life and Love and RFK's Mess 2 on The Spectrum.

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12:59I'm polite, I have a good personality, and I spread joy all around the world. Today Explained is back with James B. Jones, who works in technical support. I've always enjoyed working with computers and electronics, always been very passionate about that. And Dani Bowman, the founder and CEO of DaniMation. I help students on the autism spectrum by helping them educate, elevate, and empowering them by helping them turn their passion in animation into a career with our one-on-one sessions and our animation. camps. Now, if you know those voices, and you very well might, it's because James and Danny are cast members on the hit show Love on the Spectrum about autistic people searching for love, which is not always easy.

13:46Oh, yes. Well, I admit I was having difficulty with my search for love before I heard of the series. Actually, Love on the Spectrum has changed my life in so many ways. Yes, I've met new people. I've made new friends. And yes, I finally have found true love. I cannot say enough positive, wonderful things about Shelley. She's so amazing. But yes, I said, I could spend all day talking about her, but I know I can't distract us from the purpose of our meeting. But other than that, I would see, yes, my life has definitely improved quite significantly without a question. Tell me just quickly, tell me about Shelley.

14:24What's so great about her? Shelly and I have so much in common. Yes, we have very similar preferences in movies, music, and other hobbies and entertainment. But what is it? She also is fond of outdoor activities and hiking. But at the same time, we complement each other. We are not exact duplicates of each other. She and I each inspire the other to grow and improve. We each inspire the urge to be the best that we can be. That sounds wonderful. Dani, have you met someone on the show? Actually, for me, when it comes to finding the love, the person that I found, Henry, is outside of the show. Ooh, cool.

15:05We first met each other in person at the Huntington Park Police Department when the police department did a fundraiser for autism acceptance. And they were looking for a company or organization to help donate the funds. Henry and the Huntington Park Police Department chose Dini Mation as the recipient of the funds. So, and then as, so as Henry and I first, oh dear, I see I fumble with my words. That's okay. I do too. And I talk for a living. It's totally fine. I do it also. I think that's a pretty common thing. Keep going. Tell me about Henry. What's, what's so cool about Henry? What do you like about him?

15:48What I really like about Henry is that he's really kind. He's very understanding. He takes me out to like wonderful dates. Like, for example, he took me out to a wonderful South Coast winery as one of our getaways. He definitely makes my dating experience so magical. I am so happy for both of you. I really am. Why, thank you. Thank you very much. So one of the reasons that we're talking today is that Health and Human Services Secretary Robert F. Kennedy Jr. made some comments not long ago about autistic people having limitations. What did you think about what he said? Well, can I start first? Oh, of course you may.

16:27Okay, it really honestly broke my heart because words like that don't describe reality. They shape it. They can either build people up or tear them down. and the idea that autistic people are automatically a burden, that kind of thinking destroys hope. And let's be clear, this isn't about politics. It's not about being red, blue, or whatever side you're on. It's about the language we use and how that language either fuels hope or crushes it. We people on the autism spectrum are capable. We can be capable human beings. All we need is just a loving push. from the support of her friends and family, to definitely keep moving forward to independent, fulfilling lives.

17:16James, what did you think when you heard Secretary Kennedy make those remarks? I was not at all pleased. But sadly, I was not surprised because he has had a habit of saying things that I feel are very ignorant and uneducated, or sorry, uninformed is the better word there. So I was not at all pleased and I felt it was necessary for me to respond. I mean, I've been alive for 37 years, so I believe I have quite some experience. I have many, many years of experience with this matter. So I definitely feel that I am well qualified to speak about this. What do you mean by experience? Do you mean you've heard lots of people criticize autistic people in a way that you think is unfair?

18:09Yes, exactly. And I've been in situations where in the past, my social skills were not as developed as they are now. So through experience, I developed my social skills to the point where they are now. Let me ask you both a question. And Dani, I'll start with you. The thing about those comments that got a lot of attention was when Secretary Kennedy kind of listed the limitations, as he sees them, of people with autism. Do you believe that you have limitations? Of course I do. I do have some certain limitations, and especially because I have a hard, and I do have a challenge that I have called verbal apraxia, which means I have a hard time articulating with my words, or sometimes my words come out as a word salad like earlier.

19:03However, as we people on the autism spectrum are working together to challenge these roadblocks, we can make it better. James, what about you? Oh, yes. Of course, everyone has limits. That is correct. And I will confess that some of my limits not all of them but some of my limits may perhaps be related to my autism but i have been able to i believe to say overcome those limits is is not proper terminology is not a proper way to word it but i have been able to to minimize those limitations to live with them or to no i'm sorry to work with them to work around them yes yes and um and i i certainly must say that the idea that people with autism are incapable of driving vehicles paying bills or living independently is completely false um i have i've had my driver's license for 20 years since i was 17 i pay i paid practically all of my own expenses and um i i i work a 40 hour per week job with benefits i've i've held steadily since 2017 and um other than the fact that i still live with my my parents, I believe myself to be quite independent, self-sufficient.

20:19And the fact that I still live with my parents is due to factors that are beyond my control. Because houses are extremely expensive right now. And that, of course, is obviously not something I can control, but that obviously is probably not something we'll be discussing right here. Yes. Well, James, one thing I wanted to add, and Noel, can I add something to that? Yeah. Yeah, of course. I understand why people might think of that if we're a burden, but if you have met me as a kid, you wouldn't say that. Well, I didn't speak until I was almost six, and when I moved in with my aunt and uncle at 11, I barely had any functional language and struggled to connect with anyone.

20:58But they didn't see it as a burden. I believe my mother has said it took me slightly longer to be capable of speech than it does most children, most immigrants. But my mother mentioned, though, that I was able to speak in complete sentences immediately rather than one or two words at a time, as is the case for most children. Oh, yes. Well, and I have to tell you that you're pretty good at paying taxes. And we, and of course, we both pay taxes. Yes. And I love writing poetry also. Yes. Can I ask you guys a sensitive question? I suppose you may ask whether or not we answer as in our matter entirely.

21:38I think that sounds fair. Okay, so after Secretary Kennedy made those comments, a lot of people were clearly upset, including a lot of people like the two of you who have autism. I also read some essays by parents of kids who are severely autistic who said, you know, this actually does speak to my experience. My kid is really having trouble and probably won't ever get a job or write a poem or date. And they said, I feel like Secretary Kennedy really saw me and was speaking to me, whether I like his position on vaccines, whether or not I think he addressed the issue sensitively enough or not. He is talking about what it's like to be me as a parent of a kid like this.

22:28Do you think that he has a point when it comes to autistic people whose needs are much greater than the two of yours? Well, I do have a cousin who is severely autistic. And even though he seemed to be getting better at knowing how to use the restroom by himself, I kind of do feel bad for my cousin. But you're right that there's other nonverbal people on the spectrum that can get a degree. I met this one lady who is nonverbal and is capable of getting a PhD. And she uses a communication device in that she proves potential. She could definitely do it. Even nonverbals can do it. Then again, no matter nonverbal or not, people on the spectrum still need the loving push.

23:16We talked to a reporter earlier in the show who said one of the distinctive things about Secretary Kennedy is that he came out and he said, we are going to find what causes autism quickly and we're going to do something about it. I do not like that at all. Tell me why. tell me why for anyone who has studied history those are very ominous words indeed because autism is is a is a psychological no a neurological condition the reason that more people are diagnosed with autism is because doctors and um psychologists have have become more adept at identifying at diagnosing autism plus of course people who have autism are not as afraid to hide their condition, to hide their symptoms as they may have been in ages past.

24:09And of course, society is much more accepting of autism in recent years as well. Robert F. Kennedy Jr. has a lot of power. He is the Secretary of Health and Human Services, which means in his role, he can do things for people with autism. He can order that research be conducted. He can draw attention to the cause. What do you want RFK Jr. to know about you? And what do you want him to do, if anything, about people who live with autism? So I would say, please listen. Listen to people who actually live this experience. We don't need pity. We need opportunity. We don't need stereotypes. We need understanding.

24:57We're not broken. we're just wired differently and given the chance we can do incredible things all we need is just a loving push okay i'll be diplomatic to say i wish mr kenny would would resign from his vision let someone who actually who is who actually has who is actually competent take that role that's that's a lot more diplomatic than what i was originally planning to say so the secretary of health and human services needs to be someone who actually understands these various issues um who understands matters of this nature yes we need to provide support support mechanisms for for people who have autism or similar neurological conditions people who have autism or similar conditions need special programs that are tailored for them every every student needs to have their own customize their own personalized plan, curriculum.

25:56I definitely agree with what James says. I would have RFK Jr. resign. Thank you both for taking the time to do this. You both articulated your point of view really well. And I'm very happy for both of you that you've met nice people out in the world. It's very hard out there. So good for you. Thank you very much. James and I were both grateful to be part of this podcast. And we definitely have to work together to prove RFK Jr. wrong.

26:32Danny Bowman and James B. Jones. Love on the Spectrum is on Netflix. Gabrielle Bourbet and Avishai Artsy made today's show. Amin El-Sadi edited. Laura Bullard fact-checked. Patrick Boyd and Andrea Christensdottir are our engineers. I'm Noelle King. It's Today Explained.

26:58Thank you.