Autism rates have skyrocketed over the last few decades. The first autism prevalence study in 1970 showed an autism rate of less than 1 in 10,000 kids. Today in the U.S., the autism rate is 1 in 36 children. Sometimes we hear the stats, but the implications don’t quite register. Dr. Toby Rogers discusses today what these numbers look like in real life. Toby has a profound understanding of the public health problem of autism, from how it impacts parents, to the economy, to the world at large. He has a Ph.D. in political economy from the University of Sydney in Australia. He tells the story of how he took the deep dive into what increases the risk of autism. He discusses the indirect and direct costs of caring for those with autism, and the grassroots communities that are coming together to stop the autism epidemic.
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Episode Transcript
Within the below transcript the bolded text is Hilda
The incidence of autism in the US has increased dramatically over the last few decades. The first autism prevalence study in 1970 showed an autism rate of less than 1 in 10,000 children. In the US, the autism rate is 1 in 36. Sometimes we hear the stats but the implications don’t quite register. This is episode 277 with Dr. Toby Rogers. We discuss what these numbers look like in real life. Toby has a profound understanding of the public health problem of autism, from how it impacts parents to the economy, to the world at large. He has a PhD in Political Economy from the University of Sydney in Australia. Toby tells the story of how he took a deep dive into what increases the risk of autism. He also discusses the indirect and direct costs of caring for those with autism, and the grassroots communities that are coming together to stop the autism epidemic.
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Welcome to the show, Toby.
I’m delighted to be on the show. Thank you.
You have so much good information to share. I hardly know where to start, but let’s start with the fact that you were studying for a PhD in Sydney, Australia, and then you completely changed fields. Is that right?
Yes, that’s correct. I felt like I had won the lottery when I got a scholarship to study Political Economy in Sydney, Australia. There’s a legendary political economy program down there. I had worked for six years to get a scholarship to go study there. In the early days of my PhD program, I was feeling no pain. I was working hard but Australia is a paradise. I was going to the beach every weekend and I was loving being in Australia. About a year into my program, I was dating an Australian woman, and her son was diagnosed as being on the autism spectrum. I was curious and I take seriously this notion that it’s a quest for knowledge. I have this old-school PhD program that’s very strict about doing it right, doing it by the book, being orthodox, and a heavy emphasis on original source documents. You’re not to ever use secondary sources. When I wanted to understand autism, I went to the CDC website as one does. The CDC had a narrative about what’s going on with autism. Being in a PhD program, I knew that my responsibility was to read the original sources. I looked up all their footnotes and I started reading their sources.
Tell me what their narrative and what their sources were pointing to. What were they saying was causing autism?
The CDC website on the causes of autism is a scientific embarrassment. There are a couple of different narratives that they pursue. They’re fond of pointing the finger at medications that are no longer on the market. The CDC website on the causes of autism will say, “Don’t take the Thalidomide.” Thalidomide is toxic and was a public health disaster in the 1950s. It was never approved for the US market. It hasn’t been in the US market in at least 40 years. It is preposterous to point the finger at a medication that’s not on the market anymore. They also do the same thing with valproic acid, which is recommended for treating epilepsy. That’s contraindicated in someone who is pregnant. You would never take that if you had epilepsy and you’re pregnant. They’re pointing the finger at the wrong things and it’s self-evident.
It is evident because the incidence of autism has been going up over the years. If these drugs, one wasn’t even approved on the US market, and the other one has been contraindicated for some time for pregnant women, what explanation did they have for autism now if any?
The embarrassment continues because the CDC will then pivot out of pointing the finger at drugs that are contraindicated or not on the market to saying, “It must be genetic.” They vaguely wave at a handful of genetic studies. If you read the studies, they don’t support the narrative that this 27,000% increase in autism since 1970 is genetic and then it gets worse.
I imagine it does. You might not even have to read the studies to understand that it’s not apparently genetic. If a person has common sense, they can say, “There’s no autism in my family. Is there autism in yours?” They’d be like, “No.” That doesn’t hold water either.
There’s no such thing as a genetic epidemic. The human genome doesn’t change that quickly in the course of a generation. I saw a study once that said the most the human genome will change is 1% over the course of 100 years. I ran that by a few geneticists and they said, “That’s an overstatement.” We’re not going to see a 27,000% increase in this disability if its root is in genetics. It’s preposterous to make that argument, yet that’s the argument that the CDC have been making for the last 30 years. They’re still making it on their website and it’s absurd.
Here you are, this PhD student, not originally interested in autism, but because your girlfriend had a son who had autism, you started looking into it and you’re finding all of this nonsense. What did you do next?
First, you feel like you’re losing your mind because the CDC at the time in my head was this respected public health agency. Surely public health agencies aren’t lying to us. That would seem outlandish. I spent a 2nd, 3rd and 4th day researching this topic and the CDC narrative kept not checking out. I started reading some of the skeptical literature. The arguments they were making seemed like a much better fit for the data than what the CDC was saying. Before I knew it, I had spent 6 weeks, 7 days a week, 12 hours a day doing nothing but reading about autism. I realized that I had stopped working on my original topic. I had to go and have a conversation with my supervisor about what was going on. I said to him, “I was happy with the topic I was working on, but I have stumbled into what is quite possibly the biggest political economy story in the world now. I’ve seen this pattern in the data and I have a moral responsibility to change my topic and work on autism.”
Once I’d seen the pattern in the data, I couldn’t go back. I couldn’t in good conscience say, “I have seen what’s going on with environmental factors that increase autism risk. I know that the CDC is lying. I know that politicians have no idea about the calamity that’s coming down the track. I could not in good conscience abandoned that work.” It led to difficult conversations. Everybody knows that this topic is politically radioactive because of the question about vaccines and everybody is skittish about it. To their credit, my department and my supervisor stood by me and allowed me make the change to work on the political economy of autism.
You said you knew the CDC was lying. What if they were just mistaken?
It was interesting, there’s this PhD space. There are about 75 PhD students, all in a series of three different offices with a series of desks and computers on them. I would spend all day reading and I must have looked crazy. I would go into the break room at dinner and I would have this look in my eyes of shell shock about what I was going through. Throughout the day, when I would find an additional piece of data, I would break down crying because the situation is much worse than people realize in the mainstream media.
One of my colleagues, a fellow PhD student, I told her what I was working on. I didn’t tell many people, but I told a couple of students and she said, “My housemate has a vaccine-injured son, would you like to interview him?” I said, “Yes, I would.” I went and had coffee with them. This is another original source though. At that point, I had heard all the stories about crazy anti-vaxxer conspiracy theories, all the labels, stereotypes and name-calling. That was the picture I had in my head when I went to go interview my colleague’s housemate. I went and met with him, and he was like me. We’re about the same age. He had a kid, and a well-baby visit had gone spectacularly wrong. Speaking with him about his journey led me to know that I was on the right track. This was a real person in the real world whose experience was backing up what I was discovering in the data.
As you were digging, you found that only was the CDC wrong with saying that it was a genetic or due to these drugs that were no longer in use, but other factors were pointing you to making this link between vaccinations and autism.
I did a deep dive. I did literature searches on any possible toxic chemical link to autism. I do a deep dive into mercury from coal-fired power plants. I do a deep dive into plastics and fire retardants, and there are some effects there. We’re seeing everything from coal-fired power plants, plastics, pesticides and EMF having an effect on autism. The 900-pound gorilla in this debate is vaccines. I wanted to defend the CDC. I wanted the CDC to be right. I was perfectly happy with my life before discovering this topic. I did not want to discover that vaccines can cause autism, yet it runs throughout the data. It’s impossible to miss if you do an honest evaluation of the studies on this topic.
In the news, all we hear is vaccines don’t cause autism. Who’s covering that stuff up?
The pharmaceutical industry spends billions of dollars to shape the narrative about their products. They do qualitative research. They know how we make decisions. They write scripts for doctors so that every type of refusal of any product in the doctor’s office, they have a script for how you can get a patient to agree to these things. The pharmaceutical industry has spent billions of dollars to shape the narrative around vaccines. People watch TV and they’re influenced by CNN, MSNBC and even Fox. These cable channels, news sources, the evening news are all shaped by advertising from the pharmaceutical industry. I’m sure you know that the US is 1 of only 2 countries in the world that allows direct-to-consumer marketing of pharmaceutical products. It’s the US and New Zealand.
It’s a tremendous problem. Not only do patients get the wrong information or too rosy account of our particular drug, but it ends up buying off the evening news. The bigger problem of direct-to-consumer advertising is no evening news channel will ask tough questions about vaccines or any other pharmaceutical product. They know that the pharmaceutical industry will retaliate by cutting advertising spending. Any news anchor that wants to pursue this story will get a phone call from the boss saying, “How dare you bite the hand that feeds us.” There’s no investigative journalism that’s happening in the mainstream media right now and it’s a tragedy.
I’m understanding now why you said this is a big political and economic story or headline that you could imagine. I thought you were going to say this is the biggest health headline, but there are a lot of interwoven financial and political interests in keeping the cap on this story.
What we’re seeing now is the erosion. We’re on the verge of collapse of over 200-year-old democracy because the pharmaceutical industry has poisoned our entire political system. It has poisoned our elected officials, elections, the CDC, the FDA, NIH, EPA, all these regulatory agencies supposed to be protecting us. They’re all captured by industry. They all end up working for the industries that they’re supposed to be regulating and protecting us from. It’s a political problem. We’re on the verge of political collapse. It’s an economic problem as the costs of autism are catastrophic. In 2015, there was a good study on the cost of autism and said the cost of autism at that time was $268 billion a year in the United States.
They projected that by 2025, we’d be looking at $1 trillion a year in autism costs just in the US. I was curious about a point of reference and I thought to myself, “What’s the US Defense Department budget?” I went and looked that up. The US Defense Department’s budget is about $750 billion. $1 trillion a year in autism cost is greater than the US Defense Department cost, which is our largest single line item in the US budget. There’s no plan for how to pay for this. There’s no strategy for how to pay for the educational, housing, healthcare costs associated with autism, yet we’re looking at $1 trillion a year in cost by 2025. There’s a study that came out in 2020 that was talked about at the conference at NC State in North Carolina. They looked at the ten-year cost of autism in the US. They’re projecting $7 trillion in autism costs in the US over the period of 2020 to 2029. That’s a disaster unlike anything we’ve ever seen before.
Where is that money going? Can you break that down a little bit for us?
It’s both direct costs and indirect costs. The costs of education go up when you need an instructional aide or you need additional support in the classroom. People on the spectrum often have a range of what are called co-morbidities. They have gut issues, sleep issues, chronic pain and seizures, so healthcare costs go up. Often you have one parent, usually, the mom who leaves the workforce to care for the child. That person ordinarily would have been making money in the workforce and paying taxes on that. That salary drops out both for the family and for the wider society. What researchers do is they look at a basket of costs, both direct and indirect, and come up with the figure. The numbers suggest it’s about $3.3 million on average in additional costs if someone is on the spectrum, over and above the cost of parenting in general.
We’re not even talking about emotional and physical costs, the exhaustion on the parents and the families. The disappointment that the child, as Kennedy said who was perfectly well and meeting all the markers at let’s say two-year-appointment, suddenly is behind in verbal skills and all these other things. He’s got these other habits and it’s devastating.
What I’ve done since getting my PhD is I spent 2019 working to defeat mandatory vaccine bills in several different states like Colorado, Oregon, California, New Jersey and Virginia. I meet lots of parents and kids on the spectrum. They’re all dealing with various levels of emotional challenges, trauma and stress. One of the things that are striking about these campaigns to defeat these mandatory vaccine bills is the amount of moral injury inflicted on these parents and these families by elected officials who refuse to listen. There’s moral injury by the press who calls people names. I’ve interviewed hundreds of parents and kids on the spectrum by now.
I have never met a more courageous group of people in my life, extraordinary human beings who will do anything for their kid and who are managing to keep it together in spite of enormous odds and daily challenges. I’ve never seen such cowardice on the part of the media and politicians. The moral injury that the pharmaceutical industry inflicts on this family, that’s a crime in and of itself. There are many crimes here. There’s the crime of producing a product that’s toxic and trying to sell it. There’s the crime of mandating this toxic product for people that don’t want it. All of the gaslighting that goes on of vaccine-injured children in their family, it’s outrageous. I’ve never seen a level of moral injury like that. I don’t know what to do about it. I’m at my wit’s end. I want to learn from many of these parents who’ve been in this fight for a long time this work is hard on the soul because the pharmaceutical industry is evil at this point.
Let me pivot for a moment and ask you, do you feel alone in this work?
No, there’s this beautiful community that’s forming, and there are various labels for it. Sometimes these parents are called warrior moms, warrior mamas or warrior dads. Those are parents of vaccine-injured kids. There are a number of leaders who have pushed into this space. Bobby Kennedy is extraordinary. Andy Wakefield does beautiful work. Del Bigtree is on TV every Thursday, talking about these issues. I’ve found my tribe. I’ve found a group of people who are beautiful and it’s incredible, yet you lose friends and family. The costs of working on this issue are enormous because there are various people who don’t get it and don’t want to get it. They are terrified by what I’ve discovered and don’t want that information getting out. You lose some friends and you gain some other friends along the way.
It feels to me like you’ve taken on the burden and the emotion in a way of these families because you’re not believed either when you’ve talked to your friends and family about this.
I am more than happy to be a voice for families that are stuck at home and can’t make it to the Capitol that day to meet with that elected official. I know their stories and I’m more than happy to be a warrior in support of them, alongside them and with them. It’s a family at this point. Everybody in the movement loses friends and family. The losses are enormous. There are parents who lose their kids to SIDS. There are families whose children lose speech and eye contact. I’ve lost friends and lovers over this topic in this work, but it’s an essential work. There is no other choice. We have to fix this as a society. The course that the United States is headed on is towards collapse.
The United States is headed over a cliff because of autism costs and because we create 100,000 new autism cases in the United States every year. It is because of this insane vaccine schedule that’s bloated and completely untethered from medicine and health, and all these other toxic chemicals that we put into kids as well. We have to resolve this. What’s beautiful about being around all these warrior moms and dads and working together is these parents have figured out what it’s going to take legislatively to end these epidemics.
They have more wisdom than everybody at the CDC put together. There’s this thing in the social science literature called popular epidemiology. It’s epidemiology from below. It’s the wisdom that people gather through lived experience, their own independent research, common sense and logic. What we’re seeing is this remarkable moment in the history of popular epidemiology where parents have figured out the causes of an epidemic, a good twenty years before the mainstream medical and scientific community has figured out what’s going on. It’s remarkable. On the one hand, it’s fascinating. On the other hand, it’s heartbreaking.
Moments like these when we gathered together with our tribe, with these Kansans for Health Freedom, and people from all over the country and the world who’ve come to this event. I hope that this heartened you and your work. Do you see hope for the future?
I do. All the speakers and moms sharing their stories have given me hope. There’s only one way that this can turn out and it’s the right way. It’s elected officials listening to Bobby Kennedy, doing the right thing and putting fewer toxic chemicals into kids. That means rolling back to the vaccine schedule to maybe one vaccine or no vaccines at all. I think the notion of a vaccine schedule itself is barbaric. One size fits all medicine is absurd in 2020. What is necessary is personalized and individualized medicine. They call it N-of-1. Functional medicine and integrative medicine know how to respond to Coronavirus much better than mainstream medicine. We’re in this moment where paradigms should shift.
The current paradigm doesn’t work. We know what the better paradigm is, but politically and economically it’s difficult to get there because there are numbers of stakeholders who are getting rich off of the old broken paradigm. They don’t want to change their ways. They can buy off the political system and the media. This paradigm should have shifted many years ago. We should have recognized right away what was happening with the autism epidemic and it’s linked to environmental factors, but that hasn’t happened yet.
There are hundreds of thousands of parents who have woken up to this issue who understand what happened to their kid that they’re becoming an electoral force. Some elected officials are starting to get it or going to get it more every day. As the costs and cases of autism continue to mount, sooner or later, the political system is going to have to turn to the Weston A. Price Foundation, Bobby Kennedy, Del Bigtree, to warrior moms and dads, and to people like me and you, because we do know the way out of this terrible valley. If Bobby Kennedy was head of the CDC, we could end the autism epidemic in 24 hours. I genuinely believe that if we had a proper head of the CDC and the FDA, we could end the autism epidemic in 24 hours. We know how to do that now.
That’s a beautiful sentiment. That would be amazing to see happen. What you were describing that I want to speak to, you said popular epidemiology. We call that the upwising of the crowds. In other words, we’re getting wisdom from the grassroots and that can change everything. I’m hopeful about that. I’m happy to hear you say that it’s happening and we’re witnessing it now as well. I would love to talk to you more and more. Perhaps we will talk again, but in the meantime, I want to give you the question I often pose at the end of the show. If the reader could do one thing to improve their health, what would you recommend that they do?
Don’t ever get another vaccine. It’s simple. The evidence is overwhelming that the flu shot is not a good idea. It has all toxic chemicals that you don’t want in your body. It’s bad at stopping the flu. That’s the shot that a lot of adults get shingles shot. The best available data on vaccine benefits and harms comes from Peter Aaby and Christine Stabell Benn at the Bandim Health Project. Their research shows that every single vaccine on the US schedule causes more harm than benefits. They have a 40-year dataset. It’s an extraordinary dataset. They have looked at the numbers of 40 years with the data. None of the vaccines on the US schedule produces more benefits than harm. That’s the best scientific evidence that we have.
I would not vaccinate my kids and I would not allow parents to get the flu shot or the single shingles shot. When shots are offered at work and what have you, I wouldn’t get those either. The evidence is terrible in support of these products. None of these vaccines on the US schedule has ever been tested against the saline placebo. That’s a scientific crime. It’s a crime against humanity, and these things are not good for people’s health. The evidence is overwhelming that vaccines are causing harm to all levels of society. I would say, don’t get another shot.
Thank you, Toby for giving us all of your information, for sharing your research and your heart with us. We appreciate your time.
Thank you. It’s been fun chatting with you. It’s a heavy subject, but being around people who get it and who are working to make the world better gives me hope. Thanks for all that you’re doing.
It’s our pleasure.
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About Toby Rogers
Dr. Toby Rogers has a Ph.D. in political economy from the University of Sydney in Australia. His doctoral thesis, “The Political Economy of Autism,” explores the regulatory history of five classes of toxicants that increase autism risk.
Dr. Rogers shows that the public health problem of autism actually starts with the political economy problem of regulatory capture. He also has a Master of Public Policy degree from the University of California, Berkeley, where he was a researcher for former U.S. Labor Secretary Robert Reich. Dr. Rogers now does grassroots political organizing with medical freedom groups across the country working to stop the autism epidemic.
Important Links:
- Dr. Toby Rogers – Twitter
- FleetWoodOnsite.com/wise
- Kansans for Health Freedom
- Bandim Health Project
- HolisticHilda.com
Skybison says
Hello, I am an adult on the autism specrum and I find this interview to be deeply offensive and bigoted. Autism is not a bad thing in and of itself, aspects of it can be disadvantagous but other aspects can be very positive. For example people on the autism spectrum have long been highly overrepresented in feilds of science and technology ie Albert Einstein. You talk about “the costs of autism” as if autistic people are burdens on society, yet the vast majority of autistics hold jobs, have families and contribute just as much to the economy as everyone else. If you ask autistic people if they want to be cured, I can assure you that they will almost all say no, it is simply part of who we are and there is nothing worse about autism then there is about being neurotypical.
In the time before modern vaccination, child mortality rates were about 50%. Today in the rich parts of the world they are almost nothing. Even if vaccines cause autism, the trade off is well worth it.
Instead of fear mongering and spreading hatred you should tell parents how to accept their children for who they are, autism and all.