I suspect the US will become like Germany in the next few decades where the paranoia about handing any data over is justifiably high. I hope this burns the unethical side of the tech industry to the ground. It deserves it.
People sometimes tend to shutdown comparison of any situation with Nazism using the hideous Godwin's law. Apparently it's a sacrilege towards the Holocaust victims to compare their plight with any emerging threats. But there is no guarantee that the horrors of the past won't repeat in the future. In fact, that is one of the reasons we learn history - to recognize the repeating patterns of similar mistakes. And I think the situation is very perilous already. Perhaps I'm paranoid. But remember that people are arbitrarily getting deported to some foreign detention camp and judges are being arrested within 3 months of this regime coming into power. How long before we find ourselves haunted by the dreadful events of the past?
My life is pretty close to this community and I can verify that all of his comments are 100% accurate.
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.
Others who cannot handle the demands as caregiver and simply get divorced over it. Some who call CPS because they can’t handle the danger that their child poses to their other children. Some who are flight risks that will literally just take off running (usually right to bodies of water) given the chance, putting parents completely on guard.
These are just a few of the issues before getting into “the autism diet” and chronic digestive issues. The fact that somehow a gluten free, casein free diet usually results in significant behavioral improvements leading many people to suspect that what we’re eating environmentally is contributing to the problem.
RFK Jr is giving a voice to parents who are scared, confused and fully aware that nobody is listening to them. 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.
If you want to know what most people in the community believe is the root cause, it’s aluminum.
I realize that all things associated Trump are destined to get this crazy narrative but RFK Jr has been fighting for these families for at least 20 years. His desire to help people is genuine and not something in question.
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.
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.
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.