Episode 8
Autism registry? RFK can suck a lawnmower!
Yep, I'm back, caffeinated and undeterred, ready to take on the swirling mess of “autism registries,” junk science, and that perennial fixture of Twitter meltdowns: RFK Jr. himself.
This week’s episode - “Autism Registry - RFK can suck a lawnmower.”
It's not for the faint of heart—or for anyone who thinks the federal government has a “big red medical record button” (newsflash: it doesn’t).
Are you exhausted by the flood of misinformation around autism and tired of policymakers who couldn’t diagnose a runny nose, let alone understand complex neurodiversity?
I've got your back.
I've been running national mental and behavioral health organizations, helping autistic folks get real, accessible diagnoses, and pushing for patient-first, clinician-also-first, accessible-always care.
And I'm not here for the fantasy that “good autistics” and “bad autistics” are some kind of moral spectrum, or to let anyone label people as “burdens” because a guy with a microphone doesn’t understand science.
This episode pulls back the curtain on why the proposed national “autism registry” isn’t just misguided, but fundamentally impossible.
Listen as I call out the shadow incentives behind these political crusades—why it’s less about public health than…well, padding the pockets of a few very persistent anti-vaxxers.
It’s market research, not science, dressed up like a crusade. And it comes directly at the expense of real autistic people who are already fighting for space, resources, and dignity.
If you’re wondering how these hot takes at the top reach deep into everyday community life—shaping infighting, stoking fear, and making the realities of being autistic even harder—you'll be wanting to listen.
And, as always, we'll answer a question from our community in our "Small Talk" segment.
Ready? Press play. Spark some hope. And get the real story.
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Timestamped summary
02:00 Eugenics Rhetoric - Ugh!
05:17 Autism Registry Data Mismanagement
07:36 Inaccessible Universal Medical Data
13:11 Flawed Data Sharing Assumptions Exposed
15:33 Debunking Autism-Vaccine Myth
17:40 RFK's Vaccine Injury Profit Motive
21:41 Handling Unwanted Job Discussions
25:23 "Truck Driver's Evasive Answer"
Mentioned in this episode:
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Transcript
If you've been around for a while, you might have heard me say this once.
Speaker A:Or more.
Speaker A:RFK can suck a lawnmower.
Speaker A:And we're going to talk about why.
Speaker A:All right, here we go.
Speaker A:I'm going to pretend I'm pushing record, because that feels right.
Speaker A:Okay, I'm pressing record.
Speaker A:Boop.
Speaker A:Hi, everybody.
Speaker A:I'm Lauren Howard.
Speaker A:I go by L2.
Speaker A:Yes, you can call me L2.
Speaker A:Everybody does.
Speaker A:It's a long story.
Speaker A:It's actually not that long a story, but we'll save it for another time.
Speaker A:Welcome to Different Not Broken, which is our podcast on exactly that.
Speaker A:That there are a lot of people in this walking around feeling broken, and the reality is you're just different, and that's fine.
Speaker A:So, quick rundown of the rules.
Speaker A:We talk about this every time.
Speaker A:If you want to know more about them, pop back to our first episode.
Speaker A:First, I'm going to curse a lot if bad language is a problem.
Speaker A:Sorry.
Speaker A:Second, I'm going to tell a lot of stories, even on things that don't sound like they have stories.
Speaker A:Third, I'm going to tell a bunch of dead dad jokes.
Speaker A:It's just par for the course around here.
Speaker A:And fourth, anything that comes out of your face is appropriate here, so you do not have to worry about filtering any part of you to join us in this space.
Speaker A:I've made zero secrets, exactly zero secrets about my feelings about Robert F.
Speaker A:Kennedy, Jr.
Speaker A:And his harem of assholes who are currently making decisions for American healthcare with all of the experience of a toddler that's never even had a cold.
Speaker A:And so that is just terrifically exciting for me, especially as somebody who not only runs a number of different healthcare organizations, but also runs one specifically built for people with autism or who are looking for autism diagnosis.
Speaker A:I really love the work he's doing in the autism space right now.
Speaker A:And if you can't tell that that's sarcasm, that actually checks out.
Speaker A:That was sarcasm.
Speaker A:So this guy, to be very clear, this guy is a giant jackass, and I would like the world to know that he is peddling and has for many, many years peddled, debunked junk science that was proven to not only be completely false and fabricated, but also cost the medical licenses of the people who.
Speaker A:Who created this horrible, debunked research.
Speaker A:It's not research, it's fiction.
Speaker A:So he's been peddling that for years, and before someone made him the director of Health and Human Services in the United States.
Speaker A:It was obnoxious and it was harmful on a small scale.
Speaker A:But now he's going to roll out all of this absolute trash to the nation as a whole.
Speaker A:It started with him.
Speaker A:I mean, it started well before this.
Speaker A:But the particular stress about this, let's say the turning point of when this became, what is this guy going to do to, oh, he's going to go full eugenics, was a couple of weeks ago when he got in front of a microphone and said that autistic people don't pay taxes and that they ruin families and they're a drain on society and they do terrible things to their families and that they are over and over and over, they're just a burden.
Speaker A:We said that many times.
Speaker A:Just a burden.
Speaker A:This is obviously very untrue.
Speaker A:Very, very, very untrue.
Speaker A:But also harmful in so many ways, including the fact that it has created infighting within the community because there's this idea of good autistics versus bad autistics, which is not a thing.
Speaker A:Not a thing.
Speaker A:But also real autistics versus fake autistics.
Speaker A:That's another narrative that's happening right now.
Speaker A:And all of this, I'm sure it existed before in some capacity, but all of this is emerging from these stupid, stupid things that he said that now is making people feel like their resources are going to be taken away, their ability to exist as they are are going to be taken away.
Speaker A:It's just created a whole lot of bullshit that does not need to exist.
Speaker A:These people already have it hard enough.
Speaker A:Regardless what level of support needs they have.
Speaker A:They already have it hard enough.
Speaker A:We don't need to be creating artificial problems that they now have to jump through, especially coming down from our federal government.
Speaker A:But it was then compounded after he said these horrible, awful things that he walked back in the weakest way possible, basically saying that I'm not talking about the people with autism who are able to pay taxes.
Speaker A:So, so creating this idea that the only benefit to you existing is if you can pay taxes and support the government so that our billionaires don't have to.
Speaker A:I guarantee you that guy doesn't pay taxes.
Speaker A:But it's really important to him that disabled kids pay taxes.
Speaker A:That's really, really important to him.
Speaker A:So it was then quickly followed up with this thing that he said, which is that they're going to create a registry of autistic people.
Speaker A:Autistic people will be required to register.
Speaker A:Now, two days later, they came back and said, oh, we're not going to require that.
Speaker A:We're just going to pull things from existing data sources and they keep changing how they're going to get it, what they're going to do.
Speaker A:The thing that really blows my mind is that his initial conversations about starting this registry made it sound like they were just going to pull medical records from every patient in the whole United States to identify who's been diagnosed with autism so that they can put them on this list regardless of their opt in, regardless of their willingness to participate.
Speaker A:And then we were going to figure out the causes of autism and then they walked it back a couple days later.
Speaker A:The thing that drives me crazy, aside from all of it, to be clear, there's not one part of this that is worse than others, but this is the part that most people don't understand and also the reason why he's a disingenuous.
Speaker A:He did not walk it back initially because of the outcry, which was big and I was part of it.
Speaker A:Of registries are for fascists and you are not going to create a master race by labeling all the autistics.
Speaker A:I am certain that he walked the initial claim back because he thought that he was going to push the medical record big red button at the big powerful government that stores every patient's medical record and he was going to be able to get all of this information with one button.
Speaker A:And I'm sure somebody looked at him and went, that's not how this works.
Speaker A:And quickly realized that not only is this man making healthcare decisions with no health care background, but he doesn't understand the fundamental problems with information sharing in health care and thought he was going to build a registry off of a bunch of systems that do not exist.
Speaker A:Interoperability in health care has been a challenge for as long as we've had electronic health records.
Speaker A:This idea that there's a big government button to pull records so that you can see what everybody's up to.
Speaker A:Not a thing.
Speaker A:There is no HIPAA button.
Speaker A:There is no look at all the protected data button.
Speaker A:There shouldn't be.
Speaker A:To be clear, I'm not advocating for one.
Speaker A:There should not be a way for somebody to hit a button and get everybody's medical information.
Speaker A:But he knows so little about health care in our country, the healthcare that he is now responsible for running and overseeing that he doesn't understand the fundamental pieces of how we share information and why what he wants to do is not possible.
Speaker A:So we have an ehr.
Speaker A:We have an electronic health record where all of our patient data is stored.
Speaker A:Only we have access to it.
Speaker A:Nobody else can get into it.
Speaker A:We do not publish to what's called HIEs or Health Information exchanges where you can both publish to and pull data from.
Speaker A:But they are voluntary, meaning an organization has to decide to and pay a lot of money to both publish and pull information down.
Speaker A:I think there's like four primary HIEs.
Speaker A:You have to get individual access to every one of them.
Speaker A:You have to intentionally go pull data or build out a system that allows you to automatically pull things down.
Speaker A:Like you have to build out the code that will allow you to pull things down automatically.
Speaker A:There's an opt in.
Speaker A:You have to have a patient permission.
Speaker A:Like it's a whole thing.
Speaker A:So these systems exist if you voluntarily participate.
Speaker A:Larger health systems, I don't know this for certain.
Speaker A:I don't actually have the data on this.
Speaker A:Larger health systems probably do participate in these things.
Speaker A:But mind you, these are not government systems.
Speaker A:These are independent companies that have created these databases where information can be shared to and pulled down from.
Speaker A:They're not government supported, they're individual companies who operate or who interact with other systems.
Speaker A:There are probably a few thousand different electronic health records that you could use for your practice.
Speaker A:Sometimes there's like little niche electronic health records.
Speaker A:Like we use one that is specifically for small organizations because we don't need 7,000 tabs and referrals and access to a bunch of lab ordering and things like that.
Speaker A:Like what we need is very simple.
Speaker A:If you go to your local health system or hospital, their systems are complex.
Speaker A:Their systems are so complex that they have different interfaces for different specialties.
Speaker A:They have entire teams of people who maintain them.
Speaker A:They're very complex, they're very complicated.
Speaker A:If you need something fixed or changed, it's a long, long lead period to get it done because somebody actually has to go and code the change and it could affect other departments and it could.
Speaker A:I mean it's complicated.
Speaker A:And even with all of that complication, there still is not a download records button.
Speaker A:There still is not a one easy way to go in and pull down every record on every patient that they've seen.
Speaker A:And they could have seen millions of patients.
Speaker A:There are other electronic health records that are what's called on prem, meaning your server is right next to you and so nobody has access to it.
Speaker A:It's not cloud based.
Speaker A: 't believe I'm saying this in: Speaker A:They should be charting on paper.
Speaker A:I've considered it strongly because we're telehealth.
Speaker A:It's a little harder, but I very.
Speaker A:I've seriously considered taking all of my providers Offline because nobody's getting my patient information, regardless if they want it or not.
Speaker A:So the ways that health information does not automate automatically share back to anything, is protected under multiple layers of security, is shared out in very disparate ways through very disparate systems.
Speaker A:And the information that often leaves practices that is not the medical records is a series of codes that means nothing to anybody who doesn't understand the codes.
Speaker A:And I'm not even, I'm not talking about like any engineering code.
Speaker A:I'm talking about CPT and ICD 10 codes that mean something to somebody like me who has been operating within them for a million years, but mean nothing to other people.
Speaker A:I can look at a code and usually tell you what kind of code it is just based on having experience billing and coding.
Speaker A:But most people look at it and go, can someone just tell me how much this costs?
Speaker A:Because I don't understand this.
Speaker A:But you don't have a code that tells you this person has this disease and received this treatment and responded well to this treatment.
Speaker A:And that's what the medical records are for.
Speaker A:So he thinks that they're gonna hit, or thought, I don't know, that they're gonna hit the information button.
Speaker A:They're gonna get all of the information into their giant magical record system and they're going to know everything about every patient in the world.
Speaker A:It's literally not possible.
Speaker A:There are a thousand different systems, some of which that connect to others, some of which don't.
Speaker A:There are even these larger systems allow health systems and large hospital systems to let small practices lease space on their servers so that you can get access to a really, really expensive ehr that a small practice wouldn't be able to afford.
Speaker A:And they do it for like, nonprofits and things like that.
Speaker A:So even those technically exist on one of these larger systems, but they're never, they're almost never set up to share information in the way that the parent account is.
Speaker A:And what do they think they're going to do with this?
Speaker A:The point is they don't know.
Speaker A:They have no idea.
Speaker A:They are now finding out now, after however many days this has been his job, that there isn't a magic button that somebody, somebody told them, well, you could probably get claims data from Medicare and Medicaid, which they've been very clear that they plan to do.
Speaker A:So what they're going to do is run a big regression where they can pull all of the autism codes and get information on everybody who has autism.
Speaker A:But again, those are codes not to say that they shouldn't have the information that says this person has autism because they absolutely should not have that.
Speaker A:That is not their business.
Speaker A:And they should have known designs on it.
Speaker A:But they think that claims data is going to tell them something other than who uses what services what.
Speaker A:It's not going to tell them history.
Speaker A:It's not going to tell them symptoms.
Speaker A:And then they're doing other stupid stuff like they're going to pull pharmacy data.
Speaker A:They're going to use pharmacy data to gather information on patients with autism.
Speaker A:You know how many prescriptions there are for autism?
Speaker A:You know many medication treatments there are for autism?
Speaker A:Guess.
Speaker A:Zero.
Speaker A:Zero.
Speaker A:There are no medications.
Speaker A:What do you think you're going to get from a pharmacy?
Speaker A:Person came to the pharmacy and didn't get my joke.
Speaker A:What do they think they're going to get?
Speaker A:But they have no idea what they're doing.
Speaker A:They have no idea who they're dealing with.
Speaker A:They have no idea who they're marginalizing.
Speaker A:They just think that they are going to pull all of this information and get some sort of valuable direction on the causes of autism.
Speaker A:And they keep saying they want to figure out the causes of autism.
Speaker A:They're going to do all of this quote unquote research, scientific research to figure out the causes of autism.
Speaker A:First off, we know the causes of autism.
Speaker A:Stop having sex with other autistic people.
Speaker A:Problem solved.
Speaker A:Except it's not solved because our goal is not to wipe out people with autism.
Speaker A:There's nothing wrong with people with autism.
Speaker A:Having a disability does not mean you should be wiped off the face of the planet.
Speaker A:We know that it is a neurodevelopmental disorder.
Speaker A:That's what it's called.
Speaker A:Whether you think it's a disorder or not is a totally different argument.
Speaker A:We know that it is largely identified in genetic groups.
Speaker A:So you might not have autism, but you have autistic traits in your family.
Speaker A:You have a child with somebody who either has autism or has those traits within their family.
Speaker A:You, your genes go do the mashy mixy thing and now you have a baby that has autism.
Speaker A:And that's what happens.
Speaker A:We know that that's not new information, but they think they're going to find out the quote, unquote causes of autism.
Speaker A:To be clear, they don't think they're going to find out anything.
Speaker A:They think they're going to prove this widely debunked thing by manipulating the data that they pull to prove that vaccines cause autism and that nobody should take the MMR vaccine and that children dying from measles is just not a Big deal.
Speaker A:It's just no big deal.
Speaker A:Why don't we just let the kids die from measles?
Speaker A:Most kids don't die from it.
Speaker A:It's only like 20% of kids who get the worst case of it.
Speaker A:It's not a problem.
Speaker A:We can let them go, right?
Speaker A:That's the pro life crowd for you, by the way.
Speaker A:That's the pro life crap.
Speaker A:But why would somebody be so incentivized?
Speaker A:What could possibly incentivize somebody to so obsessively go after something that we already know?
Speaker A:To be clear, I'm not against research on autism.
Speaker A:In fact, I'm fully supportive on actual scientific, university led, academic led research on autism.
Speaker A:Whether it comes from one of our big health institutes, whether it comes from whatever, I don't care.
Speaker A:As long as there are scientists behind it.
Speaker A:Study it.
Speaker A:Maybe we can figure out something that could improve lives, mitigate some of the more uncomfortable symptoms, Just make it so that people are happier and healthier.
Speaker A:I'm not against that.
Speaker A:I'm not eager or hopeful that we're going to come out on the other side with some sort of whatever that's going to give us what we're trying to find out.
Speaker A:But like, do the research.
Speaker A:The worst thing that comes from doing research is that you disprove your hypothesis.
Speaker A:That's the point of doing research.
Speaker A:But that's scientific research.
Speaker A:What they're trying to do is market research, and that is not a scientific pursuit.
Speaker A:And why does that matter?
Speaker A:RFK has made all of his money on vaccine injury lawsuits.
Speaker A:This is not a personal crusade that he has because he wants to make children healthier.
Speaker A:He makes his money suing vaccine companies or vaccine manufacturers for vaccine injuries.
Speaker A:So if he can harness the power of the federal government to prove that there are more vaccine injuries, he can make a whole hell of a lot more money.
Speaker A:And he knows that the people who are still willing to do work within the federal government right now are also willing to manipulate their findings because it's not scientific research, it is market research.
Speaker A:He is trying to make himself richer on the backs of the federal government.
Speaker A:We know that's the person he is.
Speaker A:His family says that that's the person he is.
Speaker A:They have been very, very clear that that's the person that he is.
Speaker A:They've been public about it.
Speaker A:So we're not talking about a giant push from the federal government to solve a problem that is affecting the lives of millions of Americans.
Speaker A:We are talking about a push from one dude who has created a crusade with the intent of dying Richer.
Speaker A:And he's not even subtle about it.
Speaker A:Additionally, you do not do a scientific meta analysis in six months.
Speaker A:It's not happening.
Speaker A:They created this artificial date of when they're going to know the cause of autism.
Speaker A:Six months.
Speaker A:September.
Speaker A:It was six months from when they initially said it.
Speaker A:Now it's like four and a half months or maybe four months.
Speaker A:But they have a closed date of this thing by September.
Speaker A:They're gonna have all of the answers by September1.
Speaker A:That's how you know there's no actual scientists involved.
Speaker A:There's no actual scientific research happening there.
Speaker A:But you know what you can do in six months?
Speaker A:Market research.
Speaker A:You can do lots of market research that you can manipulate to look however you want it in six months.
Speaker A:That's plenty of time.
Speaker A:It's plenty of time to investigate the different cases that you think should be included in a lawsuit.
Speaker A:You could do tons of that in six months.
Speaker A:So if you're looking for the altruism, if you're looking for this intention that he's gonna make, you know, make America healthy again.
Speaker A:That's what they're saying.
Speaker A:No, it's make RFK richer again.
Speaker A:That's what he's trying to do.
Speaker A:It's the same.
Speaker A:They all have the same motivation.
Speaker A:All of these jackasses who are currently running our federal government, they all have the same motivation.
Speaker A:At the end of the day, how do we set this up so that it pays us back?
Speaker A:It's the same reason that Trump is pulling this tariff bullshit.
Speaker A:Because if he messes with the markets, if the markets tank because he's screwing around or something, he and his buddies, not him.
Speaker A:Trump doesn't have any money, but his friends do.
Speaker A:They can go invest and then when the markets rebound, they make a bunch of money and all of the middle class people lose everything in their 401ks, but they don't care.
Speaker A:They don't care because this is about their pocketbooks and reinforcing billionaire class and everybody else can go fuck themselves.
Speaker A:It's all the same thing, it's all the same grift repackaged in different ways, except this time they're using it to justify eugenics.
Speaker A:And I don't know about you, but I really have no desire for a master race.
Speaker A:It's certainly not white people, to be clear, so there's that.
Speaker A:So for this week's small talk again, remember, this is something we do every week.
Speaker A:Here's Alison.
Speaker A:So the next question we have comes from threads and it's how do I answer?
Speaker A:What do you do for a living, when I'm not really proud of the answer and don't want to discuss it, but need to avoid offending the person who asked.
Speaker A:So that's a really good question.
Speaker A:First off, if you're doing a job and it is a productive endeavor, whether you enjoy it or not, if it pays your bills, if it comes close to paying your bills, if you are contributing something to your life or someone else's, you should be proud of the fact that you are doing that.
Speaker A:Even if you don't like the work, even if it's a space you don't want to be in forever, you can be proud of that.
Speaker A:That there is no shame in any job.
Speaker A:We need people to do every job.
Speaker A:And if you are working in a restaurant and you want to be working in an investment bank, that doesn't mean that working in a restaurant is not great work.
Speaker A:I actually have a friend, she's a server at a restaurant and it's not a particularly high end restaurant.
Speaker A:And that, I don't say that to be negative.
Speaker A:She makes probably as much money as I do serving tables four nights a week because she's been there for 20 some years and she has really loyal customers and she takes nothing home with her except for maybe like some bread and some meals, which sounds delightful because it's the best restaurant ever.
Speaker A:She has no baggage from her job whatsoever and she gets to go home and just exist as a person who does not have to worry about work outside of work.
Speaker A:And that sounds freaking magical.
Speaker A:So the point being is that every job is a job that needs to be done.
Speaker A:Unless you're like, if you're like laundering money for the mob, like, I'm not even saying that's not a job that needs to be done, but just like, keep that on the down low.
Speaker A:I don't want you to go to jail and I don't want you to lose your legs or end up with concrete shoes like, don't do that.
Speaker A:I can understand why that would be a little questionable.
Speaker A:But if you're doing a job, you're supporting yourself or partially supporting yourself, you're contributing, even if it's not the job you want to be doing, even if you don't consider it fulfilling work, that's still something you should be proud of.
Speaker A:So there's no shame in that.
Speaker A:But I also think, like, you don't have to answer questions and people don't get to be offended if you don't answer a question.
Speaker A:So if somebody asks you, like, what do you do for a living?
Speaker A:You can be vague about it and you can say like, oh, I work in hospitality.
Speaker A:I'm just using the restaurant as an example.
Speaker A:It could be any number of things.
Speaker A:We actually had somebody apply very early on to work with us at lb.
Speaker A:And by the time I went to hire her, she had actually found a really, really awesome job that was 100% in the field she wanted to be in.
Speaker A:And so she took that job instead.
Speaker A:But she was like a definite hire for us.
Speaker A:But when I looked at her resume, she had had a job gap because she had a baby and she stayed home with her child for like three years.
Speaker A:And so we talked about that.
Speaker A:Obviously I had my own maternity leaves and I understood that quite a bit.
Speaker A:And she talked about how she had done some freelance work and some contract work over the couple years that had kept her busy and she really enjoyed it, but it just wasn't consistent enough.
Speaker A:And she felt like maybe she wanted for her family something that was more reliable and consistent, even though she really enjoyed that.
Speaker A:And I was like, makes perfect sense.
Speaker A:I totally get it.
Speaker A:I found out afterward that she was a phone sex operator.
Speaker A:Not a problem for me.
Speaker A:I don't care.
Speaker A:She answered the question.
Speaker A:She wasn't sure how I would react to it, which I get, I fully get.
Speaker A:And so she just told me that she'd been doing some freelance work.
Speaker A:It was one off for clients.
Speaker A:It worked really well for her.
Speaker A:It was great for her schedule.
Speaker A:It was flexible, but it just wasn't the consistency that she needed it to be.
Speaker A:And it was like, okay, cool, that makes sense.
Speaker A:You only ever have to answer questions as much as you are comfortable with.
Speaker A:And also there are usually umbrella terms.
Speaker A:I have a friend who's a truck driver.
Speaker A:He's a long distance truck driver.
Speaker A:And if you ask him what he does, he says he's in logistics.
Speaker A:Not because he doesn't like being a truck driver, but because when you tell somebody that you're a truck driver, you then inevitably have to answer like 47 questions about what it's like to be in a truck all the time?
Speaker A:And do you have like a bunk in there?
Speaker A:And like, oh, my God, how much gas does that use?
Speaker A:And like, oh, my God, have you ever been in an accident?
Speaker A:And what's the longest you've ever driven?
Speaker A:What's it like going to a truck stop?
Speaker A:Do they really have dentist office and truck stops?
Speaker A:I mean, like this, like, it's like an inevitable barrage of questions from people when he just wants to, like, be like, can I please have a soda?
Speaker A:And so he tells people that he's in logistics, and people are like, oh, interesting, cool.
Speaker A:And they move on.
Speaker A:So you don't.
Speaker A:You only have to give people as much information as you're comfortable with.
Speaker A:And there's probably a catch all term for what you do that is vague enough that people will be like, okay.
Speaker A:Because people probably care less than you think they do.
Speaker A:Thanks for being here, guys.
Speaker A:Have a good day.
Speaker A:Love you.
Speaker A:Mean it.
Speaker A:You want to know how well my brain is working?
Speaker A:I just realized that I ordered food.
Speaker A:I don't know how long it's been on my porch.
Speaker A:There's a bagel out there waiting for me, waiting for me.
