Hi Federico, I read the first 2/3 of your response, but I had a lot of difficulty following your ideas. To the best I can gather, you’re arguing that many diagnoses of autism spectrum disorder are something else. I suspect the same, but I’m not qualified to say. It appears that you’re also arguing that psychiatry is not evidence based. The little I can understand of your argument makes sense. Thanks for offering a different viewpoint.
Fantastic article, Moorea! First of all, kudos for placing much-needed importance on fact-checking. So much of our society accepts everything they hear as factual. It's dangerous to get caught in that snare, especially with so many falsehoods spreading like a virus on social media platforms. It's equally important to make sure that our research is coming from scientific or unbiased sources, which you did. I try to do my own research as well but I have to admit, I don't do enough of this.
I don't have a strong opinion on RFK Jr. one way or another because I don't feel that I’m currently informed enough to do so. I did know that he cares about the environment which I obviously support. I do lose some respect for politicians who team up with Trump but I realize that’s an unfair statement on my part. I’ve been very raw since the election and have found myself taking things personally when I shouldn't.
I couldn't agree more that autism shouldn't be treated like a disease. It's not! Neurotypical people have weakness and neurodiverse people have strengths. As humans we all have different strengths and weaknesses. Autism has a tremendous amount of stigma attached to it and it’s imperative that we discuss it as much as we can and separate the facts from fiction. We’re not broken. Much like writing with the left hand, or being attracted to the same gender, it’s the way our brains are hard-wired and it’s baked into our DNA. Our brains are simply different.
I love what you said about it being society’s views that needs to change — not the groups of people who are being marginalized. That statement is the essence of what I hope to teach people through my writing. Prejudices are destroying our nation and our democracy. That's the real epidemic.
Lastly, I want to sincerely thank you for recommending my newsletter! I appreciate it more than you may know. I appreciate you.🩷
Thanks so much for your thoughtful comment. It's completely fair to lose respect for politicians who team up with Trump. In general, I believe we have the responsibility to criticize leaders when they act irresponsibly, including Kennedy. My understanding is that this was a difficult decision on his part. He enlisted the input of his closest family members, colleagues and friends before deciding.
I know I have a lot to learn about autism and I really appreciate people like you. I'm trying to reconcile what I hear the parents of vaccine-injured children say with what I hear autism awareness advocates say. It's not as contradictory as the dominant narrative would lead us to think.
We share the same values. I look forward to reading more of your work when you get a chance to write. 🩵
About eight years ago the Doctors at Shriners Hospital first explained that our daughter’s behavioral traits likely fell under the spectrum umbrella. After that, I began reading articles and watching videos on the topic. For me, the best way to learn about autism was watching vlogs posted by people who are on the spectrum. I listened to these people talk about how they get singularity focused and fixate on certain topics. They discussed issues such as difficulty making eye contact. They all seemed to mention the exhaustion experienced after being in a group setting, yet many were great at conversing with one person or in smaller groups. The stories of struggles in school were explaining my own experiences. I was so frequently inside of my own head, that I couldn’t pay attention to what was going on in the classroom. The difficulties with time management are another autistic marker that caused people to struggle academically. The more I listened to their stories and anecdotal evidence, I began to connect the dots that nearly everything they were saying was describing me and my own traits and experiences. Yo Samdy Sam is one of the YouTubers whose name I recall but there are many out there and they’re all very compelling.
I personally don’t believe that there is a connection between vaccines and autism, based on academic articles that I have read. The Wakefield studies and others that seemed to suggest this correlation had flaws in their research.
This is my opinion and I don’t hold it against you if you believe otherwise. There is very little in life that is black or white. Most things fall into the grey category in one way or another. I also appreciate that you look at academic studies because they’re more likely to be unbiased. The CDC, for example, has a vested interest in refuting the claims because obviously, they don’t want people to refuse the MMR and end up with an outbreak. I won’t say that I don’t trust them but I have more trust in researchers who have nothing to gain from having one opinion over the other. It’s never wrong to question things and seek answers from reliable sources.
Thanks so much for explaining that. What's your first name? Or is it a privacy thing? I totally understand if so. :)
I suspect that autistic children tend to be more sensitive to some of the toxic ingredients in vaccines, but obviously I'm not an expert.
That's a good point about potential biases in studies depending on who funded them.
One of the reasons I started my newsletter is because I enjoy reading the research and seeing whether or not it's flawed. More often than not, the flaws are in our power structures' interpretations of it. The emphasis on the Wakefield study you're talking about (and if I'm not mistaken, there's only one) is a creation of the dominant narrative. It was one small study that's a tiny blip in the discourse surrounding vaccine safety.
It’s been a while since I’ve read about it but I believe you’re correct that it was a small study. I’m not 100% certain if it was this same study or another but there was one conducted where the scientists were aware that the children had autism beforehand, which could definitely skew results.
I don’t overtly advertise my name which keeps things semi-private but I’m totally okay sharing it in most scenarios… My name is Tirzah. I also go by Tish 😊
Yeah, that would totally be shoddy research if the participants were diagnosed with autism before vaccination and the scientists didn't reveal that in the study. Nice name, Tirzah!
Public health has been a huge farce since its very inception! It has never been about,”health!” We, (the public) have been force fed lies about all aspects of this concept. It’s more about coercion and profits and lies than anything else! I’m not sure how sincere or compromised Mr. Kennedy is, but I would bet anything that, at worst he I may only be part of it.
While I think RFK is an absolute maniac who will do anything for power and influence, I can also hold space for the fact that we are regularly misled by government agencies in the name of either selling us something that profits the elites, or keeping us sick enough to be docile. The thing I appreciate most about your article is your treatment of Autism in general. The entire anti-vax movement is guilty of painting neurodivergence as the absolute worst thing that can happen to a person or a family, a terror of the first order. As I look at the neuro-spicy people I love, I have to disagree. We need those who see the world differently, and always will. Thanks for a thoughtful and challenging piece!
There are obligations for self publishers, specially burdensome for those pretending to inform the general public. That includes not deleting comments just because.
Federico, I don't know how these are related to this post. The only comment I deleted here was my own, which was in response to a user that no longer has a Substack account.
The sort of severe autism you describe used to be around or less 1 in 10,000 kids, the "many parents" is misleading:
As per Wikipedia on Demographics of the US, there are 18,827,000 under 5s, of those 9,624,000 are males and 9,203,000 females.
Assuming a 4:1 M/F ratio, that represents: 962 males, and 230 females, more or less, or 1192 under 5s with that kind of autism. I don´t minimize the impact of families and of those kids, but certainly that can´t be considered a public health problem isolated: it was in the range or below an orphan disease. Tuberculosis and malaria kill more people still now.
And that does not consider the neurotoxic effects of the go to anti-psychotics typically used to treat autism, to calm tamper tantrums, head banging, etc., that perturbs parents, not minors, which in the long run lead to extreme disability that leads to permanent institutionalization and a 1.5-2% death rate every year, usually reported as "natural causes".
And the learning and socialization difficulties such medications, anti-psychotics cause on minors.
On top of severe dyskinesia that leads to extreme isolation and permanent institutionalization because of community violence: those kids cannot leave the house without being mobbed or bullied and probably parents are not told about it even afterwards. They would not have consented knowingly such disabling treatment in such relative high frequency: 5% per year of treatment.
Mad in America is a source, partial, of what I said.
On top of the nothing mental is actually real, and no brain nor genetic disease has been found in any mental disorder, disease, nor spectrum. Not even replicated fMRI or MRI abnormalities have been found not explained by ECT or anti-psychotic use. It would be neurological not neuropsychiatric nor psychiatric. Those are falsehoods. Or do you know better than I?, If you do my brain is open as Erdős used to say:
I wrote a another comment to this post:
https://open.substack.com/pub/federicosotodelalba/p/my-recollections-of-autism-in-the?r=4up0lp&utm_campaign=post&utm_medium=web&showWelcomeOnShare=false
Hi Federico, I read the first 2/3 of your response, but I had a lot of difficulty following your ideas. To the best I can gather, you’re arguing that many diagnoses of autism spectrum disorder are something else. I suspect the same, but I’m not qualified to say. It appears that you’re also arguing that psychiatry is not evidence based. The little I can understand of your argument makes sense. Thanks for offering a different viewpoint.
Thanks, Federico. I've opened this post and will read and respond as soon as I get a chance, I hope tomorrow.
Fantastic article, Moorea! First of all, kudos for placing much-needed importance on fact-checking. So much of our society accepts everything they hear as factual. It's dangerous to get caught in that snare, especially with so many falsehoods spreading like a virus on social media platforms. It's equally important to make sure that our research is coming from scientific or unbiased sources, which you did. I try to do my own research as well but I have to admit, I don't do enough of this.
I don't have a strong opinion on RFK Jr. one way or another because I don't feel that I’m currently informed enough to do so. I did know that he cares about the environment which I obviously support. I do lose some respect for politicians who team up with Trump but I realize that’s an unfair statement on my part. I’ve been very raw since the election and have found myself taking things personally when I shouldn't.
I couldn't agree more that autism shouldn't be treated like a disease. It's not! Neurotypical people have weakness and neurodiverse people have strengths. As humans we all have different strengths and weaknesses. Autism has a tremendous amount of stigma attached to it and it’s imperative that we discuss it as much as we can and separate the facts from fiction. We’re not broken. Much like writing with the left hand, or being attracted to the same gender, it’s the way our brains are hard-wired and it’s baked into our DNA. Our brains are simply different.
I love what you said about it being society’s views that needs to change — not the groups of people who are being marginalized. That statement is the essence of what I hope to teach people through my writing. Prejudices are destroying our nation and our democracy. That's the real epidemic.
Lastly, I want to sincerely thank you for recommending my newsletter! I appreciate it more than you may know. I appreciate you.🩷
Thanks so much for your thoughtful comment. It's completely fair to lose respect for politicians who team up with Trump. In general, I believe we have the responsibility to criticize leaders when they act irresponsibly, including Kennedy. My understanding is that this was a difficult decision on his part. He enlisted the input of his closest family members, colleagues and friends before deciding.
I know I have a lot to learn about autism and I really appreciate people like you. I'm trying to reconcile what I hear the parents of vaccine-injured children say with what I hear autism awareness advocates say. It's not as contradictory as the dominant narrative would lead us to think.
We share the same values. I look forward to reading more of your work when you get a chance to write. 🩵
About eight years ago the Doctors at Shriners Hospital first explained that our daughter’s behavioral traits likely fell under the spectrum umbrella. After that, I began reading articles and watching videos on the topic. For me, the best way to learn about autism was watching vlogs posted by people who are on the spectrum. I listened to these people talk about how they get singularity focused and fixate on certain topics. They discussed issues such as difficulty making eye contact. They all seemed to mention the exhaustion experienced after being in a group setting, yet many were great at conversing with one person or in smaller groups. The stories of struggles in school were explaining my own experiences. I was so frequently inside of my own head, that I couldn’t pay attention to what was going on in the classroom. The difficulties with time management are another autistic marker that caused people to struggle academically. The more I listened to their stories and anecdotal evidence, I began to connect the dots that nearly everything they were saying was describing me and my own traits and experiences. Yo Samdy Sam is one of the YouTubers whose name I recall but there are many out there and they’re all very compelling.
I personally don’t believe that there is a connection between vaccines and autism, based on academic articles that I have read. The Wakefield studies and others that seemed to suggest this correlation had flaws in their research.
This is my opinion and I don’t hold it against you if you believe otherwise. There is very little in life that is black or white. Most things fall into the grey category in one way or another. I also appreciate that you look at academic studies because they’re more likely to be unbiased. The CDC, for example, has a vested interest in refuting the claims because obviously, they don’t want people to refuse the MMR and end up with an outbreak. I won’t say that I don’t trust them but I have more trust in researchers who have nothing to gain from having one opinion over the other. It’s never wrong to question things and seek answers from reliable sources.
Thanks so much for explaining that. What's your first name? Or is it a privacy thing? I totally understand if so. :)
I suspect that autistic children tend to be more sensitive to some of the toxic ingredients in vaccines, but obviously I'm not an expert.
That's a good point about potential biases in studies depending on who funded them.
One of the reasons I started my newsletter is because I enjoy reading the research and seeing whether or not it's flawed. More often than not, the flaws are in our power structures' interpretations of it. The emphasis on the Wakefield study you're talking about (and if I'm not mistaken, there's only one) is a creation of the dominant narrative. It was one small study that's a tiny blip in the discourse surrounding vaccine safety.
It’s been a while since I’ve read about it but I believe you’re correct that it was a small study. I’m not 100% certain if it was this same study or another but there was one conducted where the scientists were aware that the children had autism beforehand, which could definitely skew results.
I don’t overtly advertise my name which keeps things semi-private but I’m totally okay sharing it in most scenarios… My name is Tirzah. I also go by Tish 😊
Yeah, that would totally be shoddy research if the participants were diagnosed with autism before vaccination and the scientists didn't reveal that in the study. Nice name, Tirzah!
Public health has been a huge farce since its very inception! It has never been about,”health!” We, (the public) have been force fed lies about all aspects of this concept. It’s more about coercion and profits and lies than anything else! I’m not sure how sincere or compromised Mr. Kennedy is, but I would bet anything that, at worst he I may only be part of it.
Well said, Tov. The lies are what I'm trying to identify with this fact check.
While I think RFK is an absolute maniac who will do anything for power and influence, I can also hold space for the fact that we are regularly misled by government agencies in the name of either selling us something that profits the elites, or keeping us sick enough to be docile. The thing I appreciate most about your article is your treatment of Autism in general. The entire anti-vax movement is guilty of painting neurodivergence as the absolute worst thing that can happen to a person or a family, a terror of the first order. As I look at the neuro-spicy people I love, I have to disagree. We need those who see the world differently, and always will. Thanks for a thoughtful and challenging piece!
Thanks for reading and sharing your thoughts, Deb.
Oh, by the way, it might be for some people some of the time, profitable perhaps reading about their obligations as self publishers:
https://federicosotodelalba.substack.com/p/i-think-paywalled-substackers-need?r=4up0lp
https://federicosotodelalba.substack.com/p/the-great-chinese-firewall?r=4up0lp
https://federicosotodelalba.substack.com/p/i-suggest-not-to-call-voters-names?r=4up0lp
https://federicosotodelalba.substack.com/p/why-i-block-people?r=4up0lp
There are obligations for self publishers, specially burdensome for those pretending to inform the general public. That includes not deleting comments just because.
Federico, I don't know how these are related to this post. The only comment I deleted here was my own, which was in response to a user that no longer has a Substack account.
Sometimes fact checking something without appreciating what a fact is is wasted time:
https://federicosotodelalba.substack.com/p/imprecaciones?r=4up0lp
The sort of severe autism you describe used to be around or less 1 in 10,000 kids, the "many parents" is misleading:
As per Wikipedia on Demographics of the US, there are 18,827,000 under 5s, of those 9,624,000 are males and 9,203,000 females.
Assuming a 4:1 M/F ratio, that represents: 962 males, and 230 females, more or less, or 1192 under 5s with that kind of autism. I don´t minimize the impact of families and of those kids, but certainly that can´t be considered a public health problem isolated: it was in the range or below an orphan disease. Tuberculosis and malaria kill more people still now.
And that does not consider the neurotoxic effects of the go to anti-psychotics typically used to treat autism, to calm tamper tantrums, head banging, etc., that perturbs parents, not minors, which in the long run lead to extreme disability that leads to permanent institutionalization and a 1.5-2% death rate every year, usually reported as "natural causes".
And the learning and socialization difficulties such medications, anti-psychotics cause on minors.
On top of severe dyskinesia that leads to extreme isolation and permanent institutionalization because of community violence: those kids cannot leave the house without being mobbed or bullied and probably parents are not told about it even afterwards. They would not have consented knowingly such disabling treatment in such relative high frequency: 5% per year of treatment.
Mad in America is a source, partial, of what I said.
On top of the nothing mental is actually real, and no brain nor genetic disease has been found in any mental disorder, disease, nor spectrum. Not even replicated fMRI or MRI abnormalities have been found not explained by ECT or anti-psychotic use. It would be neurological not neuropsychiatric nor psychiatric. Those are falsehoods. Or do you know better than I?, If you do my brain is open as Erdős used to say:
https://federicosotodelalba.substack.com/p/my-own-writings-reading-list-on-anything?r=4up0lp