U.S. autism data project sparks uproar over ethics, privacy and intent

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.

First of all, the reason this registry isn't going through is because autistic people who are functioning enough to speak out did so in solidarity with the entire autistic community. So far from polluting anything we are advocating for ourselves and our peers.

Secondly, this "high functioning low functioning" dichotomy is wrong so your framing it as a "us vs them" situation is off. It's a spectrum not a binary.

Third, presumably if they can't speak for themselves, and "high functioning" autistic people are discouraged, then the only people speaking for them are allistic people speaking about what's best for autistic people. When that happens, you get bone-headed characterizations like autistic people "never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date. Many of them will never use a toilet unassisted." and suggestions of registries, wellness farms, and soon enough genetic cleansings.

Finally, it's autistic acceptance and awareness month, and the autistic community has been under attack for a week. You're spending your Sunday calling autistic people "selfish" and characterizing their input as "pollution". Have some compassion please.

Interesting that you talk about “thoughts and prayers“. I am talking about feelings, the foundation of empathy.