[goku12]

> Hasn’t RFK Jr spent his entire life trying to find the cause and cure for autism?

Has he? That 'cure' part makes it pretty clear what his background with autism is. He has no clue about it. It's certainly not a disease nor a brain injury that can be cured. And it's too complex to be caused by something like a vaccine. All I see is that he has a particular disdain for autistic people and he wants to use autism to target something else - perhaps vaccines.

> My life is pretty close to this community

Do you have an academic or professional background on the condition? Or are you someone with autism? If so, you may claim some credibility. There are even associations of parents of autistic kids who spout pseudo-scientific nonsense about autism. And they routinely get fact-checked and opposed by associations of autistic people themselves.

> I can verify that all of his comments are 100% accurate.

CDC falls under HHS, right? They published the results about a week ago and it clearly said that the higher incidence of autism is due to improved diagnosis. And then he went on to trash those findings publicly. Why should I believe a career politician over a whole bunch of career medical professionals on this? Considering his past and political stance as well, he has exactly zero credibility on this matter.

> Parents who insist on traveling separately as a safeguard to ensure one of them is able to care for their adult child in the event of an accident, living with the knowledge that both of them passing away will mean the child moves to a group home most likely.

Am I to assume that you're a parent of an autistic kid? If so, let me warn you now. You're doing something more harmful to your kid than what you described. And one more thing. Your view of autism is still very narrow. What you're describing is level 3 autism at best. Some symptoms don't even sound like autism, and could be some other condition. You should perhaps check with a specialist or a level 1 autistic to learn what autism really is and what it feels like (higher level kids often find it hard to communicate their feelings).

> Some who call CPS because they can’t handle the danger that their child poses to their other children.

Very much on point with what I said above. Harmful and hurtful behavior is not an autistic symptom. That sounds more like a cluster-B personality disorder. Not that they can't coexist, but this is a very harmful stereotype. But I'm not surprised.

> These are just a few of the issues before getting into “the autism diet” and chronic digestive issues.

Autism is a neuro-developmental condition. Autistic brains are wired differently, if you will. There are many environmental factors that influence autistic people's behavior - albeit temporarily. Food is one of the less important ones among them. And if you think it is a cure, you are in for big disappointment.

> RFK Jr is giving a voice to parents who are scared, confused and fully aware that nobody is listening to them.

Instead of a politician vying for attention, you should try to understand your kid first. If they have difficulty expressing it, try to talk to a specialist or someone with more verbal autism. They are very common - that's why the 1 in 31 statistics. Then you may get some idea about what to really focus on.

> If you had any idea the number of parents who are afraid to tell you when the symptoms started because they know you don’t want to believe them, it would shock you.

I have investigated various matters throughout my career. That statement has all the symptoms of confirmation bias. The way to get an unbiased result is to do a large-scale, randomized (double-)blind study. You need quantified data, not emotional anecdotes. And if you have something specific in mind and the quantified info to back it up, then we can discuss. Otherwise, those assertions are moot. And for that matter, do you know that these symptoms are extremely hard to identify in infants? The timing of recognition of those symptoms is a rather unreliable indicator for anything.

And remember what I said before - a lot of autistic parents' associations are in the business of spreading misinformation. They're widely opposed and debunked by associations of autistic people themselves.

> If you want to know what most people in the community believe is the root cause, it’s aluminum.

Let me guess. The adjuvant in vaccines? I know where that comes from. If you fancy your own research, try searching up the research papers on that topic. Pay special attention to the authors and the citations. Then check the affiliations of those authors, including funding sources. That will tell you a very enlightening story. To summarize the technical argument, the aluminum used in vaccines don't reach neurotoxic levels even for infants.

> His desire to help people is genuine and not something in question.

His actions at the HHS indicate otherwise. I would rather trust the qualified career medical professionals and researchers he fired. And let's not forget the disastrous way in which he's handling the measles outbreak. I can see how you're emotionally invested in this matter. But please don't assume that the people on the other side aren't.

[jaybrendansmith]

That takedown was boss. Thank you. As a parent of two autistic children, and uncle to many more in my family, I can say that it is clear their minds develop differently, and many high-functioning autists successfully mask it and make it later in life. And these are quite often extremely gifted intellectually and academically, to the degree that while life is a struggle for them socially, they are far better than their 'norm' peers in other areas. I've not seen anything from RFK Jr beyond trying to support his anti-vaccine stance and what I would at best call evidence for 'othering' autistic people. And if he thinks he is going to make them victims, I can assure you he will find myself, my family, and the community at large ready and eager to destroy him. One could make a more coherent argument that we should create a database of those who lack empathy, the narcissistic sociopaths among us, and place them in camps and let them tear each other apart.

[brightball]

It really wasn’t any sort of “takedown”. It was the same stuff people have been saying on the internet for years that’s disconnected from what is reality for so many parents.

[cycrutchfield]

It absolutely refuted every inane speculation you made. I understand you clearly aren’t here to listen or change your mind, so it unfortunately passed right over your head.

[theartfuldodger]

It didnt, It was a list of wishful thinking. I have more exposure to families with previously called "low functioning as it relates to children, and plenty of adults who are very capable and high functioning.

What I do not see people willing to discuss

Parent getting called to school 3-4x a week, causing issues with work

Child running from school or aide and requiring a tracker program

Police/CPS involvement from "runners"

Destruction of marriage from constant state of stress

Violence to siblings

Inability to give attention equally in the family

Incredible high divorce rates, parents and any non a to a pairing.

RFK's speech had some issues, but if you read the transcript it does not match the sound bytes

All of his references to negative autism behaviors/impacts were in regards to the 25% of profound autism.

As I said, I know at least a dozen families where the above is their experience. Single moms breaking down on FB because they have no support and stressed to the max, Dad losing out on projects and sales because it cant be trusted he'll be in the office when needed. Siblings hiding away, sick of outbursts,yelling, non stop activity.

It is a disservice to all of those people to act as if the spectrum does not have a far range of activities.

That sure as hell doesnt mean we need to start trying to end "autistic people" and I think it is manipulation to say RFK's prevailing theme has ever been "autism", it has been a belief that the weaknesses in our food and drug systems are increasing chronic illnesses, mutations etc. Some headlines travel longer, the AIDS/HIV denial and Faucci hate should have got way more attention.

Its not RFK's words, its the media's practice of hyperbolic language that causes any real or perceived damage to the community.

I dont believe there is a connection to find, but maybe this will end the snipe hunt and that funding can just go towards creating spaces and education that allow for a range of interaction and social styles after September. But to ignore both sides of the experience is disingenous and is certainly a slap in the face to the families experiencing real hardship from their child's divergence.

I am not even a fan, I just despise the lazy characterizations that get slung around in all emotional spaces, he is mostly a careful speaker, especially compared to the norms now.

[ModernMech]

It's interesting because that list you provide ("Parent getting called to school 3-4x a week" etc.) is a good summary of my household growing up. Me, my sister, and my father are neurodivergent and on the spectrum.

But we are people that others would not consider to be in the 25% RFK is referring to. Yet, at some point in our lives we were. Growing up I was less verbal than I am now, and I was often paired to play with other autistic kids who were totally non verbal and died early because of their autism. So I'm well aware of the extent of the spectrum.

So I agree with this:

> It is a disservice to all of those people to act as if the spectrum does not have a far range of activities.

However I find it is RFK and not the poster you are replying to who fails to recognize autism as a spectrum. Indeed, if you read the transcript of his speech he does not refer to autism as a spectrum until the end, when a reporter frames it in those terms as part of a question. Instead, he very clearly keeps referring to autism as a binary of "profound" versus I suppose "regular" autism, which is not at all how autistic people experience autism.

What RFK does is juxtapose debilitative autistic behavior (nonverbal) with very normal autistic behavior (toe walking) and he lumps it into a category he calls "profound autism" which is not recognized as a category of autism, nor is it precise or descriptive enough to have a clear meaning. I'm already in an argument with another poster about that, I don't want to open up another front on that issue, you can read my thoughts about that in my comment history.

> Its not RFK's words

For me, it is his words. I've read the transcript free of any media filtering and the actual words he uses are causing real damage to the autistic community.

> snipe hunt and that funding can just go towards creating spaces and education that allow for a range of interaction and social styles after September. But to ignore both sides of the experience is disingenuous

You frame their concerns as a "snipe hunt" -- the opposite of genuine; yet characterize refusing to entertain them as being disingenuous and a slap in the face of autistic people. I don't understand, wouldn't dragging autistic people into a farcical excuse to prove some nonsense about the food system be far more damaging to autistic people and their families? Why can't we just not do the snipe hunt and use the money right now for creating spaces and education?

> lazy characterizations that get slung around in all emotional spaces, he is mostly a careful speaker, especially compared to the norms now.

I think this is a lazy characterization because you don't support it with any evidence. In my post history I highlight several examples from the transcript in which RFK is not careful with his language, and instead paints autistic people with a broad brush and engages in strange conspiracy theorizing in his official capacity as HHS director. Again, this is free from any media bias as it is the direct transcript from this press conference.

[goku12]

> As a parent of two autistic children, and uncle to many more in my family, I can say that it is clear their minds develop differently, and many high-functioning autists successfully mask it and make it later in life. And these are quite often extremely gifted intellectually and academically, to the degree that while life is a struggle for them socially, they are far better than their 'norm' peers in other areas.

This is one of the most uplifting thing I have heard in a while! Your children and the autistic kids in your family are very lucky to have such insightful, empathetic and caring adults like you around. Your presence make a huge difference in their lives. And as they grow up, they'll gift you a lot of unexpectedly sweet and proud moments. Good Luck!

> And if he thinks he is going to make them victims, I can assure you he will find myself, my family, and the community at large ready and eager to destroy him.

That's a very heartwarming and empowering statement! Some people argue that high-functioning autistics shouldn't talk for low-functioning autistics. But the autistic and the medical communities doesn't hold that distinction. Only 3 levels of disabilities exist. When I see the 'low-functioning' autistic people, I recognize in them the intense versions of the emotions and feelings that I'm all too painfully familiar with. That's why I decided to make an impassioned stance here. Yes! I'm seriously concerned about the safety and welfare of my peers - the only people I could ever understand.

All this dogma, greed and misinformation threatens the lives of millions of kids, a huge number of very innocent individuals and the very roots of the knowledge and profession we held dear throughout our lives. I don't know why some people hold on to false promises and rhetoric. But the final result of that is recorded very clearly in history. If only they did a bit of research on that too. It's very disturbing that many still can't see the very obvious danger signs. However, the stakes are too high to just watch and worry. Now is the time our voices and actions matter!

I'm bowing out of this debate. I have no illusions of being able to break people out of their artificial realities. But I think I made the point I wanted to - to record a sample of the false information about autism out there and its hollowness. Thank you again for being a decent and awesome human being! I hope we will have more allies like you. Thanks!

[brightball]

> I have investigated various matters throughout my career. That statement has all the symptoms of confirmation bias. The way to get an unbiased result is to do a large-scale, randomized (double-)blind study. You need quantified data, not emotional anecdotes. And if you have something specific in mind and the quantified info to back it up, then we can discuss. Otherwise, those assertions are moot. And for that matter, do you know that these symptoms are extremely hard to identify in infants? The timing of recognition of those symptoms is a rather unreliable indicator for anything.

If you have investigated then you already understand the biggest challenge to double blind studies here: control groups because of the variety of issues on the spectrum and the difficulty in measuring the severity of each of them. There’s a doctor in Indiana who’s been trying to categorize them all and has it narrowed to about 140 or so. It’s not an easy group to run studies on.

Autism is very much a digestive issue. People who just observe the behaviors without being close to treatment believe it’s purely neurological.

The core issue with everything you’re saying is that we have an information vacuum. With cancer, for example, we as a society are more than comfortable saying almost everything causes cancer. With autism, we’re not allowed to even speculate publicly. If we do it’s a simple “I don’t know what causes it but it’s DEFINITELY not the thing that I don’t want to believe is involved.”

Autism is a spectrum and there are a lot of severe cases. The severe cases often result in exactly what I’m describing above. Therapy helps in most cases but the experience described above is very real. In many cases it’s much less severe and kids are mainstreamed with some social awkwardness. The violent outbursts described in a scenario above, again, aren’t in most situations but they do happen consistently for some certain kids and when they do it’s a nightmare.

It’s not harmful to tell the truth, but it is to ignore it.

The problem with watching this discussion in real time on social media is seeing people who know one or two people who have a child who is autistic and that shapes their entire perspective. The parents who have children who are more severe on the spectrum often have very few people who know them because just the idea of time to socialize with others is often difficult to obtain.

The information vacuum is very real though and until we get a definitive answer on the cause of autism, people are going to speculate. You watch discussion of it be suppressed for over a decade and it creates trust issues.

[LexiMax]

> With autism, we’re not allowed to even speculate publicly. If we do it’s a simple “I don’t know what causes it but it’s DEFINITELY not the thing that I don’t want to believe is involved.”

I think that communication could be improved on both sides.

I have had non-confrontational and earnest discussions with the kinds of people who believe vaccines cause autism. I couldn't escape the conclusion I eventually arrived at - these sorts of people started with a gut feeling or belief and worked backwards to find the justification for it.

This realization is what I feel is missing from a lot of science communication. People who are distrustful of the science aren't going to be swayed by more science unless it dovetails with their underlying gut feelings - so assuming that you can simply out-evidence any concerns is a fools errand.

But by the same token, if critics want a productive conversation, I think it's incumbent on them to be more honest about where their concerns are rooted. What is it about vaccines that makes them predisposed to not want to have them?