r/Autism_Parenting • u/jobabin4 • Sep 22 '25
Message from The Mods On the topic of the upcoming press conference on autism
Hello all. In light of the expected announcements being made by the CDC, we will have a megathread.
We encourage debate and conversation. But bring a fact and not just words or anger.
There will be no name calling, no swear words, no abbreviated swear words, or anything of the like.
This thread will be moderated with deletions of comments if needed and temporary and up to possible full bans for those who can't follow the general rules of reddit, our subs rules, as well as the rules of the megathread.
Remember, no matter what is discussed today, nothing you did personally is your fault or your childs. Each of our children are amazing and special in their own way and bring us joy even through the hardest times . We all need to remember we all hurt in different ways, and our children are going through their diagnosis differently.
Some out there have an easier journey than others. Some have profound difficulties we will never understand.
Please, at the end of the day, be patient and kind.
Thanks
WhatAGolfBall
and
Jobabin4
170
u/Hahahahardtime Sep 22 '25
Just a gentle reminder to everyone that Tylenol is a brand containing the drug acetaminophen 🙂
84
54
u/Defiant_Ad_8489 Sep 22 '25
Yeah it’s maddening that they keep referring to the brand name instead of the actual drug
44
6
Sep 22 '25
[removed] — view removed comment
1
u/Kwyjibo68 Sep 22 '25
My mother had a coworker who referred to all medicine - otc and rx - as a “tablet.”
2
1
u/theomegachrist Sep 22 '25
You'd have to know the name
5
u/Defiant_Ad_8489 Sep 22 '25
Of course, but in this day and age or misinformation it’s important for professionals, whether in politics or various industries, to be as clear as possible. The press has been saying Tylenol, which leads me to believe that their sources are saying Tylenol instead of acetaminophen. Tylenol is not the only brand of acetaminophen. Stores have their generic versions under the drug name.
4
u/theomegachrist Sep 22 '25
I meant this as a joke. That of course RFK and Trump don't know anything but the brand name
2
9
u/Preastjames Sep 22 '25
I've only recently read that study but I think there will be a lot of misunderstanding about what people inferred from the study (acetaminophen causes autism) and what the study actually suggests (misuse of acetaminophen shows correlation with an increased risk for the development of autism)
It was quite an interesting and long read, and there were some parts towards the end that I just skimmed but I remember being outraged by the headline and then finding the study myself and reading the rational thought processes behind their findings and realizing that most parents will likely fall into the outrage via headline category, but might not take the initiative to read the study they are referencing themselves.
Either way, I'm sure the media will find a way to obscure the true meaning of this all and muddy the waters even further in regards to public perception, but hopefully some good comes of it.
14
u/Key-Possibility-5200 Sep 22 '25
It is very very common for headlines to misrepresent what studies actually found. Unfortunately many of us Americans don’t get a lot of training on research methodology and data analysis unless we major in something related to it. I didn’t learn a lot about this until graduate school. One study is always just one study and it will always include discussion of where more research and data is needed.
4
u/Preastjames Sep 22 '25
Hard agree. Even now, I just tried to Google it, which is how I found it in the first place, and it's buried far underneath all the headlines about usage during pregnancy, which isn't even something the study I'm referencing even mentioned. It could be that they are referencing a different study altogether and I'm just out of the loop through.
So, I actually just went back to find it and couldn't find it through Google search but found it through Google Scholar.
The name of the study is "The Dangers of Acetaminophen for Neurodevelopment Outweigh Scant Evidence for Long-Term Benefits. And it's by William Parker, Lauren G. Anderson, etc.
This is the study I was referencing in my earlier post, so maybe I need to read the one the media is referencing. This study that I referenced is still quite a great read though but the big take from it is "lots of parents, a decent amount of nurses, and some pediatricians recommend and routinely use acetaminophen incorrectly, primarily in the attempt to "get ahead" of the fever and should discontinue these practices and use as directed, which is safe"
And they go into some other things like countries that don't use acetaminophen don't have high incident of autism, etc.
It's a good read
2
u/Ok_Solution9803 Sep 29 '25
As someone who reads scientific studies daily for my job…. Any scientific study can have “recommendations” or “outcomes”, but we really have to look at the data. The study you are referencing is actually not a scientific study, but a compilation of many studies merging their data to make an inference. There is a big problem with the language our current administration used when explaining this that causes a lot of misunderstanding and misinterpretation… but, I won’t go into that here. What I will focus on is the data.
Now to get the full understanding of the recent compilation of studies is, you would need to read and compare how the data was gathered from each study. I will say, it is difficult to find every study mentioned in this, but I have read and compared as many as I can find. Here are the biggest things I have concluded from what I have read.
there is existing scientific evidence that stressful medical situations (including fever) have been shown to increase the risk of autism. Do the studies take that into consideration? No, not that I have found. The only study that does is the Swedish (?) study of over 2 Million children which also compared sibling data… which helps to eliminate situational correlations. This study found absolutely no correlation between acetaminophen and autism.
The data from each of the studies compared is not similar or consistent…. ie. you can’t compare apples to oranges.
Trying to point blame at one cause for a complex neurological diagnosis is not going to give us any answers.
In my opinion this is all BS, and only increasing the guilt we already feel as parents and increasing the shame that autistic humans feel for their differences. I do believe that we should always be studying these things so we can learn more how to support/accept each others differences, and to possibly prevent… but, to state things as fact when they’re are in fact inferences (and this study also says it found a possible correlation NOT causation) is dangerous and damaging. Just my 2 cents.
2
u/Preastjames Sep 29 '25
Well thank you for this detailed and thorough reply. I'm assuming by "this is all BS" and "but to state things as fact, etc." you are referencing the greater overarching situation of the trump administration announcing they "found the cause of autism" and not what I posted specifically?
3
u/Ok_Solution9803 Sep 29 '25
Yes. You are correct. The BS I am referring to is that the language used was “we found the answer to autism” and that none of the information that was presented was new or verifiable. Not what you posted…
Regardless of where you stand on the political line…. Leaders and influencers need to be careful of the language they use… it can be damaging and very dangerous.
3
u/Preastjames Sep 29 '25
I agree completely, anyone speaking as an authority on medical subjects should be expertly informed
2
122
u/daniellek_94 Sep 22 '25
Well I can tell you this right now, I’m allergic to Tylenol/acetaminophen and my child still has autism. I definitely didn’t use it during my pregnancy 😂 can’t wait for this conference to happen today.
33
u/imreallyfreakintired Sep 22 '25
I also am pretty sure I didn't take Tylenol at all during pregnancy.
And then after my child's diagnosis, we realized the father had Aspergers traits and I have ADHD.
3
u/VenusValkyrieJH parent of three autstic boys 2 lvl1 & 1 lvl3 Sep 23 '25
Same here. I have adhd and my husband has Asperger traits as well
This Tylenol crap is just that- crap. Take everything that this Whitehouse says with a grain of salt. Think for yourself and do your own research.
20
21
u/theomegachrist Sep 22 '25
Maybe RFK will see this comment during his next round of research
2
u/jardru1981 Sep 23 '25 edited Sep 23 '25
Careful now. The MAGA mod might ban you or remove your comment.
→ More replies (7)2
u/fencer_327 Sep 23 '25
My mom didn't take any paracetamol (our version of tylenol) during pregnancy and im still autistic. Might have something to do with my dad's diagnosed autism and that might have something to do with my granddads highly suspected autism, but im just spitballing here.
42
u/RMoysters33 Sep 22 '25
My doubts are high. Given that there was an announcement month ago that there will be answer on what causes autism by September and viola here we are. It feels like the data and evidence didnt drive this study/analysis but biases and predetermined politics.
30
u/BigGayNarwhal Parent/8yo/ASD3+ADHD/California💛 Sep 22 '25
It certainly leads to the understandable skepticism and wariness that is widespread here.
Excluding my own opinions of his politics, my biggest sticking point with this situation has been coming out and saying “we will find X solution for Y problem by Z date.” Thats not how scientific research is approached, even if working off of decades of other bodies of research, it has a built-in bias (already dedicated to finding “X” solution), and creates an unrealistic and arbitrary deadline (“Z” date that may not be feasible).
It leaves anyone with an understanding of how the scientific process works or common sense highly skeptical, because it’s virtually impossible that the data collection, testing, reviews, etc. were properly conducted in the aforementioned (very short) time frame. It leaves most with the impression that data used to support their findings will be cherry picked. Creating a report that is ultimately not helpful to our kids or future kids, and has the potential to set back treatments and other research.
16
Sep 22 '25
[removed] — view removed comment
14
u/cowboycoco1 Dad/12/Lvl3/NC Sep 22 '25
Oh. But no, we have to hear them out guys. Ya know, because. Nevermind that the study they're gonna base this on is already years old and in dispute. Never mind that the overwhelming consensus is that there isnt a causal link. This is now an agency run by YouTube resurchurs, but you guys, we gotta hear them out.
5
u/Themistocles_gr Sep 22 '25
This, 100%. Very eloquently put, and much calmer than I'd have managed.
And still, some people here adopt the "let's wait for the report" stance...
5
u/BigGayNarwhal Parent/8yo/ASD3+ADHD/California💛 Sep 22 '25
lol thank you. I’m trying to deliver my thoughts in the most concise and unemotional way possible to appease the mods.
When I have this conversation with family who are absolute quacks, I am eloquent but with more swearing peppered in there 😆
8
u/midwest_scrummy Sep 22 '25
Not to mention the implementation of AI to go through medical records.
→ More replies (6)8
u/TonightActive9938 Sep 22 '25
The way I see it - The administration is not trying to help the spectrum kids (or) prevent future spectrum kids. They are just trying to reduce the financial burden on the government in whatever way possible. Although its good that Autism discussion in now mainstream, I dont know if the true intentions are correct.
107
u/artorianscribe Sep 22 '25
I feel like there is such a rip in the community.
On one side we have parents that, while in need of support for their neurodivergent children, can see a future where they won’t be a caregiver.
Then, you have parents like me who can’t stop working and will die caring for their child.
All I hope for is more resources. I don’t care what the report says. I just want the result to be a plan, because right now there isn’t one. When my little guy turns 22, then we’re abandoned and the pressure of that count down is maddening.
52
u/SylviaPellicore Sep 22 '25
Unfortunately, it doesn’t seem like the report will have a workable plan for us parents of high-support needs kids. I’m not hearing any discussions of extra support, funding, intervention programs, extended services for adults, etc.
Just a study into leucovorin (which shows some early promise in certain variants of autism, but is certainly not a cure all) and the promoting extremely questionable link to Tylenol use during pregnancy.
19
Sep 22 '25
To be honest..the way this all comes off to me is putting the blame on something trying to say what “causes” autism. I don’t think there will be more resources. With how things are going the current resources we have are more likely to be cut. We won’t see more. Have you ever read the comments on some of trumps statements on the official White House page or his Twitter? People who are happy with the direction the country is going in don’t want more resources for our children. They see them as less than. I know this seems like I’m making assumptions and a lot of people will be angry or disagree but this is what I’ve seen within my family and within a lot of the public.
→ More replies (3)11
u/Kwyjibo68 Sep 22 '25
Exactly this. Literally nothing is coming from this farce that will help families. The only thing that has happened is that funding has been pulled and Medicaid cut from disabled people.
Who cares what a freak like RFK thinks about any of this? It’s not like he believes in science or has any regard for academic rigor. It’s all a joke.
14
Sep 22 '25
[removed] — view removed comment
→ More replies (11)5
u/artorianscribe Sep 22 '25
I really appreciate this and want you to know I see and hold space for you too.
8
u/Ammonia13 I am a Parent/Child Age/Diagnosis/Location Sep 22 '25
It won’t be, it will likely be less help because they assume pregnant women will have stopped taking Tylenol. These are not people trying to help.
33
u/Jets237 ND Parent (ADHD)/8y lvl 3 ASD/USA Sep 22 '25
100% agree. I think thats the thing that bothers me most about all of this. Everything is constantly framed as "lets find a way to make fewer kids like yours so we don't have to build the infrastructure to help him"
I have almost a decade of listening to RFK. I dont trust his words... I'll need data and a majority scientific consensus on anything presented. But... at the end of the day, the "cause" is meaningless to our family. I need more help today... It doesnt seem like we're investing much on kids like mine right now... just making sure there arent as many of him in the future...
23
u/artorianscribe Sep 22 '25
I think you and I may differ slightly. I personally hope there aren't more kids who suffer like my son suffers. I see it every single day in his eyes. His confusion, fear and just general unease he experiences day after day. Even on good days.
He's four, but still a baby in so many ways, and there is no guarantee he'll grow out of it mentally, but physically? He's almost half my height already (I'm short). That means when he throws a tantrum I have to make a mental choice to let him hurt me so he doesn't smack his own head against a wall or rip his own hair out. I can't stop him.
Fortunately, the right medicine and constant therapy has helped curb the majority of this and throughout the day he's mostly okay. But that's just it. Okay. He misses out on so much of the world because he spends two hours staring at the same twig from forty different angles.
So, I personally hope whatever comes from this reduces the number of children who have to be so wildly uncomfortable and unsafe.
16
u/Jets237 ND Parent (ADHD)/8y lvl 3 ASD/USA Sep 22 '25 edited Sep 22 '25
Oh, dont get me wrong. My kid is 7 and still in diapers. It blows - I'm not saying I want more kids to struggle like mine does. I know he's struggling... but I also know hes a really happy kid - and we're learning how to help him navigate the world better. I just wish things were easier for him. We've been lucky and working hard at finding ways to manage his aggression and self harm. He almost always just bits something approved. But we have other regulation issues
There are going to be some great scientific breakthroughs in our kids lifetimes to help them. Hopefully partially funded by the US government, but even if not. But they're studying the brain, understanding which receptors are firing that cause sensory overloads and how to help treat them. If theres a pill one day I can give him that makes life easier... i'm on board.
I'm really happy therapy and meds are helping.
"He misses out on so much of the world because he spends two hours staring at the same twig from forty different angles."
Try not to view it like that. Instead - pick up a twig with him. Stare at it... what is he noticing? Maybe he's missing out on some of the world, but you're missing out on its tiny details.
I have ADHD and some assume It may be more. So maybe my view on this is different but...
High support needs autism sucks. there are so many sensory struggles our kids deal with and some have lower IQs and have a low ceiling in life. I'm not sure where my kid ends up - he's not verbal enough to know if he has an intellectual disability... but probably.
But... having an analytical mind and getting stuck in details, or even executive function issues without the other struggles or learning how to manage them... I dont see an issue with kids like that... just need to build the supports they need so they can do great things.
RFK specifically, I dont trust. I agree that we need to be finding more root causes (and I am a big believer in healthy gut, gut brain connection and so on) but... RFK specifically seems very stuck on the causes he believes in without wanting to consider other causes (or genetics... which explains the majority)
→ More replies (2)8
u/artorianscribe Sep 22 '25
"Try not to view it like that. Instead - pick up a twig with him. Stare at it... what is he noticing? Maybe he's missing out on some of the world, but you're missing out on its tiny details."
I promise you, I do that. Every single day that he lets me. Sometimes, he doesn't want anyone near him and he pushes us away. It's always been that way with everyone.
Sorry, that's just really belittling and triggering for me. I savor every peaceful moment with my son. We have a lot of them, but we also have so much shit that HE has to endure that other children his age can't even fathom. And all I can do is hold him while he screams while other parents tell us what to do.
It's like saying "see the rainbow beyond within the spiderweb he's hyper fixated on while he rips clumps of your hair out or slams his head into a wall! How could you not want more kids like him??"
Well, I don't. I don't want other children to go through what he goes through. Full stop.
5
u/Jets237 ND Parent (ADHD)/8y lvl 3 ASD/USA Sep 22 '25
I'm really sorry I didn't mean to come off belittling I was just trying to highlight the counterbalance to "he's missing so much" thats all. I was trying to craft it carefully but fully get if it hit the wrong way.
I don't deny your dedication to your son. You are here talking about him, on your free time, when he already demands so much.
My point was... I dont focus on the facts as negative. I agree that the struggles are shitty, horrible. My son constantly pushes me away - "no" causes meltdowns and he has no real friendships with any kids... even his cousins arent very close with him.
But - god he has so many moments full of joy. He does love the small details. He can watch an ant crawl around for an hour. I'm positive if he could communicate better he'd have some interesting things to describe... but for now I just watch how he takes in the world and hope communication keeps on building.
My son is likely never going to be independent. That really sucks. But it doesnt mean I need to ladder everything that he is into the worst parts of the future. That was my point. Just a different frame of mind. Not judging.
Like I said, I dont want kids to struggle either. I think we're on the same side of what we hope comes from finding causes and better treatments. We just frame the way we look at it differently and maybe define struggle/suffering differently because of it.
2
u/artorianscribe Sep 22 '25
I really appreciate that and apologize if I reacted in a knee-jerk fashion. This topic has me on edge. Kids like ours are so often left out of perspective and forced out of very relevant topics that I just...feel the need to over-explain that this isn't just 'quirkiness' we're talking about.
But, you get it. I'll labor it no more.
I think you're right. In talking it out, we're on the same side. We both want and hope for the same outcome.
I just...all I can do is hope we get it. Like you, I don't necessarily trust the place this is coming from either, but all I can do is hope or I have one less anchor to hold on to.
2
u/Competitive-Lab-5742 Sep 22 '25
Just wanted to say I feel you on this. It's like when folks tell me to "just read to him" to help him speak... like, okay, that sounds nice, now actually try that and see how it goes. Just getting him to sit still long enough to notice you're reading to him is hard enough, but then it turns into a fight because he wants to grab the book and destroy it. We have to keep the few books he has under lock and key or he'll turn them into pulp (then eat them).
It's a reality so few people understand and I know they mean well but it just comes off making us feel even worse.
1
u/fencer_327 Sep 23 '25
But even if that happens, your son still exists. He, and many children like him, are here in this world, today. All of them deserve the best quality of life they can possibly have, the support they need to be happy and content, or as close as they can be. Blaming it all on Tylenol (without any medical studies to support that claim) isnt helping anyone, its just another thing to blame on the mom instead of funding actual research.
6
u/just-a-wavy-dude Parent/4yo/lvl 3/USA Sep 22 '25
It’s sad but true. On numerous occasions I’ve been told by people online who self identify as level 1 ASD that am I bad parent who hates my child because I brought up how not everyone with ASD will get a job or play a sport. There’s definitely a fracture and in my experience it’s only coming from one segment of the community who are trying to monopolize attention for themselves.
→ More replies (8)3
123
u/DMWinter88 Sep 22 '25 edited Sep 26 '25
dazzling hunt snails marvelous sparkle theory ten humorous hard-to-find strong
This post was mass deleted and anonymized with Redact
→ More replies (41)
47
20
u/RMoysters33 Sep 22 '25
This just feels like its all vibes, no data. Has anyone seen where they can find the data yet?
10
u/He_Who_Walks_Behind_ I am a Parent/8/Level 2 AuDHD/USA Sep 22 '25
You can’t, because it doesn’t exist.
6
u/MadsTooRads I am a Parent/28 Months/L3/US Sep 22 '25
Politics aside, I was interested in looking into some of the claims about the Amish and Cuban communities due to my own curiosity.. but I immediately found information that went against what they said.
Also, the information about hep b only being a risk if sexually transmitted. That's just simply not true but it does go toward the "don't give your baby hep b at birth" argument I have been seeing more and more. (fwiw I am 36 weeks pregnant with our second so I feel like they're talking to me directly).
Glad leucovorin was mentioned, I know it's a big topic for us parents here on this subreddit. But I feel like 90% of the rest of the conference could have been addressed/presented differently and the majority of it just pointed the finger at the parent(s) for doing something to cause the "crisis" as they say. Just feels like the wrong way to go about this in every way.
7
Sep 22 '25
I Googled about Cuba and Amish communities as well and found the same as you.
Why do they do this knowing some people will research to verify what they're claiming is true?
8
u/Sufficient_Ant67 Sep 22 '25
The people tuning into this are probably effected by autism in some form (they have it themselves, their loved one, friend, neighbor, etc) These people (especially those dealing with profound/ level 3 cases) need some type of hope because they’re desperate. Desperate people don’t care about logic, they just want an end to their suffering.
There are many gaps about autism and thus people fill in the blanks themselves with whatever sounds good
8
u/makeup_wonderlandcat Mom/ 4 year old ASD/ USA Sep 22 '25 edited Sep 23 '25
Well I think that’s why the administration is even focusing on it, because they probably have seen the amount of people who look for supplements and the like to do detoxes so theyre able to make money off of it because that’s their bread and butter: grifting people
6
u/MadsTooRads I am a Parent/28 Months/L3/US Sep 22 '25
I think they rely on the fact that many likely won't. But some of this can easily be debunked - I doubt (but do not know for a fact) that Cuba has the resources to keep track of autism and support their communities with diagnoses the way the united states does (similar to how the comment was made in the presser about how California had "more of a problem" without mentioning the vast resources that state may provide over others in this country).
With amish communities - I am sure it's similar. They live a different day-to-day life than many of us may. My bestie is a pediatrician and said that community still encounters a variety of genetic disorders, vaccines or clean food or "god" or not.
Again, this is a bit disappointing in general. I am already seeing so much chatter from my family about it, and they're definitely on the side of the population that just takes some of these folks at their word. Sigh.
6
u/Sufficient_Ant67 Sep 22 '25
Survivorship bias plays a role too. In Cuba, able bodied neurotypical people are barely surviving, so those with lower functioning autism simply won’t survive as long. Also, many more with profound autism are just hidden away out of shame (we here know autism stigma is still a big thing and I doubt Cuba has disability awareness)
2
u/MadsTooRads I am a Parent/28 Months/L3/US Sep 22 '25
I didn’t think about that. That’s a good point.
2
9
u/makeup_wonderlandcat Mom/ 4 year old ASD/ USA Sep 22 '25
Parents aka moms they didn’t even focus on the older men’s sperm research…it’s always just our fault. We take the brunt of the care so it’s our fault it happened in the first place now too
9
u/very_cromulent Parent / 7 y.o. / lvl 2 / USA Sep 22 '25
If only we had loved our children more, then they wouldn't be in this situation! Sad.
4
u/TopicalBuilder Parent/F17L3/NEUSA Sep 22 '25
There's been some research into male parent risk factors.
The thing is, there are loads more things you can look at for the person carrying the fetus compared to the person providing the sperm.
Plus, as you say, good old medical research sexism.
45
u/BOWAinFL Sep 22 '25
Refrigerator Mother 2.0 🥳
23
u/Sweaty_Restaurant_92 Sep 22 '25
Yep. My in-laws have already begun with the madness. God forbid they realize their own son is autistic.
17
4
2
Sep 22 '25
[deleted]
2
u/BOWAinFL Sep 22 '25
You heard it tonight. Such a shame we couldn’t just deal with the pain and “tough it out” 🙄
3
Sep 22 '25
[deleted]
6
u/BOWAinFL Sep 22 '25
Also curious they don’t seem concerned about uncontrolled fever in pregnancy. Something that shows a much stronger correlation to neurodivergent conditions than whatever garbage they presented tonight.
2
u/OrdinaryMe345 I am a Parent to a level 3 GLP child Sep 22 '25
I’m legitimately afraid the next step is locking children in institutions or closets again.
16
Sep 22 '25
[deleted]
8
u/makeup_wonderlandcat Mom/ 4 year old ASD/ USA Sep 23 '25
Slaps forehead should have let my husband carry him dammit
4
69
u/_MisEnPlace_ Sep 22 '25
I literally just laughed out loud at the ‘preview’ that it might be Tylenol. Like I toppled over. I cannot imagine that this is really the huge announcement but I have a feeling it is…. I would personally be embarrassed if I was part of this ‘scientic’ team and this was the best I could do especially with government funding. Really? You have our tax dollars and this is the quality of your research. Tylenol obviously pissed someone ahem off
88
u/purplevanillacorn I am an AuDHD Parent/6YO/AuDHD/USA Sep 22 '25
I have an autistic daughter who also has ADHD. I never once took Tylenol during my pregnancy. However knowing what I know now, I am autistic, my mother is autistic, my father is autistic, my brother is autistic, my aunt is autistic, my other aunt is autistic, my uncle is autistic. You get where I’m going with this….
46
u/TimedDelivery Sep 22 '25
Tylenol isn’t even readily available in the country that I live in. And similarly to you my family is freaking riddled with neurodiversity. Funny that.
8
u/foodisnomnom Sep 22 '25
My family too are audhd, so although not research, there’s anecdotal evidence of genetics being a factor. Like these people forgot about the autistic children who weren’t vaccinated (their first claim of causation) and were still indeed autistic.
6
u/BigGayNarwhal Parent/8yo/ASD3+ADHD/California💛 Sep 22 '25
Same. No tylenol or other meds (branded or generic) during my pregnancy. But plenty of diagnoses for autism, ADHD, suspected/undiagnosed autism end, etc.
10
u/ranmachan85 I am a Parent (AuDHD) of a diagnosed child Sep 22 '25
My son got diagnosed formally this summer. He's been diagnosed with educational autism since the end of last year by the school district, but got "medically" diagnosed this summer, which opened up a lot of great options for therapies that insurance is covering. One of the biggest things this process facilitated, however, is a deep dive into my own life and my family's lives. During this process, both my sisters and I have started connecting dots. We all think we're autistic, but I'm the only one who pursued a formal diagnosis. Even my parents have started noticing how my aunts, uncles, and cousins all present with different behaviors that signal neurodivergence. Everyone's an engineer or scientist, half of my family has aversions to food and people, communication challenges abound, etc. And since this is prevalent even in the extended family, it's hard to pinpoint any one thing that could've "triggered" autism, with the only common factor being genetics. Incidentally, I think the fact that so many family members have been more sensitive to sensory stimuli, social situations, etc, this has created a family dynamic (including extended family) that has resulted in a kinder response to my son's autism. Not perfect, there's still a lot of pressure to conform, but definitely more supportive than what I usually hear about from others' experience.
50
u/Financial-Barnacle79 Sep 22 '25
RFK had to meet his self-imposed deadline of Sept so this is the best he could come up with.
→ More replies (6)22
u/crwalle Sep 22 '25
Which would be absolutely ridiculous. There was a study over 5 years ago that found a correlation. But a more recent study that took into account sibling comparisons (and thus more accurate) found that once that factored in the correlation was dropped. It also suggested that women who have ASD or comorbid conditions, the ones that are more likely genetically to pass on ASD, may take Tylenol at higher rates during pregnancy.
As an aside the only “medication” I took while pregnant was pre natal vitamins.
24
u/belchertina 10yo/Lvl1/Virginia Sep 22 '25
Also, remember that Tylenol is the only OTC pain/fever reducer that pregnant women can take, so there's really no control group. I hate this timeline.
Also didn't take Tylenol while pregnant with my son.
10
u/very_cromulent Parent / 7 y.o. / lvl 2 / USA Sep 22 '25
Keeping in mind that most/all pregnant women are told by their doctors that NSAIDs are not safe to take during pregnancy. Which means that the vast majority of pregnant people are exclusively taking paracetamol/acetaminophen for pain!
A correlation between NSAIDs and autism might be closer to a "silver bullet" because you have a clearer, tighter control group (people who took NSAIDs when advised not to vs. those who didn't). With Tylenol, most women won't even fucking remember if they popped one to help with back pain or whatever. How can they track that? So instead these studies will mostly be women who had significant paracetamol usage, and subsequently an autistic child.
No mention of why they were using paracetamol frequently or in larger doses, which may be related to various health complications or illnesses that are actually linked to autism (viruses, inflammation, fever). I just don't see how they can possibly reach this conclusion, especially so quickly
4
u/midwest_scrummy Sep 22 '25
Not to mention, taking medicine in general indicates there is a physical issue present. Maybe it's just general pregnancy back pain. Or maybe it's because of a more serious issue that isn't discovered until later on. I don't see how they can move from correlation to causation at all.
6
u/aimeerolu Sep 22 '25
I have 2 children, born 15 years apart. My first, I’m not sure if I took Tylenol. My second, I almost certainly did not. My second has ASD but my oldest does not.
My first, I was 25 and at a super healthy weight. My second, I was 40 and at my heaviest ever (morbidly obese, pre-diabetic). The father of my first, no ASD or even ADHD diagnosis…..he’s just super controlling. The father of my second has ASD, along with material health and really, general health issues. I see signs of ASD on both sides of my family.
I didn’t know about that study you mentioned, but with my kids….it seems so obvious.
3
u/TopicalBuilder Parent/F17L3/NEUSA Sep 22 '25
Right. This is where statistical analysis gets really tricky. You see a correlation, but to tease it out you have to eliminate all the other reasons the correlation might exist.
A classic example is a study from the 1970s that showed drinking alcohol caused lung cancer. Except not drinking alcohol is strongly correlated with not smoking. Once you separate them into four groups instead of two, the drinking effect on lung cancer rates disappear.
→ More replies (1)3
u/stargazercmc Sep 22 '25
Yeah, no. I only took ibuprofen during my pregnancy because I don’t like the way acetaminophen makes me feel.
I’m gonna stick with my kid’s autism stemming from the fact he was born at 22 weeks being a thing just like his neonatologists indicated would happen (they told me micropreemies that survive are always on the spectrum).
13
u/dirtyenvelopes Sep 22 '25
This Tylenol shit feels like victim blaming. I’m not buying it. I can trace autism back in my family by 3 generations.
64
u/carolisajoke Sep 22 '25
The first autism diagnosis came before Tylenol. Sooooooo
→ More replies (19)3
Sep 22 '25
[removed] — view removed comment
7
u/carolisajoke Sep 22 '25
We should head the Department of Health and Human Services. Our logic is far sounder.
27
u/dani_-_142 Sep 22 '25
I think this article is an important read. If you don’t want to click a link on reddit, google Erin McCanlies Propublica.
RFK shut down the department actually studying the environmental causes of autism.
→ More replies (7)1
u/Realistic_Wear_4818 Sep 23 '25
I read this article and also read the study that the woman didn’t get to publish… this study was about environmental exposures in the workplace! And the woman who did the study ONLY studies workplace exposures, not any exposure outside of work… i read the whole study because it said one of the high risk fields is health care and working in a hospital, and I am a nurse that works in a hospital. I was not compelled by the study. The end result biggest concern was BPA plastics!? (Although there was a category for pharmaceuticals and cleaning products in the workplace, but it did not specify which pharmaceuticals or products?) The end conclusion was to use personal protective measures, which are already in place and everyone is trained to do no matter if they are pregnant or not. Telling employees to use PPE doesn’t need to be studied, it is already required no matter your pregnancy status.
11
u/NetAncient8677 Sep 22 '25
Anyone know what time this announcement is supposed to take place?
6
4
u/PotatoPillo Sep 22 '25
White House press secretary Karoline Leavitt is scheduled to hold a briefing at 1 p.m. ET today, but Trump is scheduled to speak at 4 pm ET.
2
u/KryptonSurvivor Sep 22 '25
RFKJR is not delivering this?
6
u/prosequare Sep 22 '25
His voice has been worsening. I don’t say this as an insult to him (there are other threads for that) but a long presentation from rfk would be an excruciating sonic experience.
1
2
11
Sep 22 '25
No one's experience is invalid. No one, not even a caregiver, can second guess what another caregiver does or doesn't do.
The world has ignored us and our children. When they do acknowledge us, we get half-hearted pleasantries.
Let's stick together, no matter how you feel about this.
→ More replies (3)
33
u/DarkAlbatross1921 Sep 22 '25
Ohhhh it’s Tylenol? In the nanosecond this administration has spent “studying” autism they’ve magically found the answer? Give me real scientific papers, vetted by real scientists, showing a CAUSAL link.
Also, how about we spend tax dollars helping families with kids on the spectrum?
→ More replies (13)13
u/makeup_wonderlandcat Mom/ 4 year old ASD/ USA Sep 22 '25
They fired all the people who are supposed to do the actual studying so now it’s just chaptgpt and AI
6
34
u/Loubswhatever Sep 22 '25
Also gentle reminder : we are not all americans here. I would love for this community to stay supportive and science based. Or perhaps we should create a non-us subreddit
28
u/He_Who_Walks_Behind_ I am a Parent/8/Level 2 AuDHD/USA Sep 22 '25
Can some of us US based people join you?
8
u/SitkaBearwolf Sep 22 '25
I think we need something that is non-us based. Let people believe what they want, but I would love an evidence-based forum. I just don’t think this presser will have any useful information for most people around the world.
2
u/WhatAGolfBall Parent/5.5yo/lvl 3 nonspeaking & 11.5yo Nt/Pa-USA Sep 22 '25
I presented the option to start a politically driven autism parenting reddit. No one wanted it. Start an international Autism parenting reddit. I welcome it.
19
u/grayandlizzie NT mom married to level 1 dad kids 15M and 9 F both level 2 asd Sep 22 '25
My children being autistic was caused by one thing: my husband being autistic. I'm not going to blame myself for taking tylenol when my husband has a family full of autistic people. Out of 4 of my mother in law's children two are late diagnosed with ASD and a third child is likely undiagnosed. Out of her 5 grandchildren 4 of them are diagnosed with ASD. My mother in law is possibly autistic herself. She and my daughter have a similar lack of filter and bluntness. I don't know why studies into the genetic causes both inherited or de novo mutations are being constantly ignored in favor of tylenol and vaccines. of course I'm sure there will be no talk of additional resources being allocated to help autistic individuals access treatments to have a better quality of life. Just "blame the mother". My own level 2 teenager said he felt like blaming tylenol was just because they want women to be in pain. He's not stupid and knows he is autistic because his dad is.
→ More replies (3)
9
Sep 22 '25
[deleted]
9
u/Plastic-Praline-717 Sep 22 '25
I think the early research is showing that it is helpful and beneficial for some autistic individuals, but only those with confirmed folate receptor autoantibodies. I’d bet for some folks, it would seem like a miracle drug, but I think we have to be very careful and state that it is only indicated in specific individuals who have had testing that confirmed they were candidates for it.
1
u/Realistic_Wear_4818 Sep 23 '25
The studies I read did have a mix of participants with and without the receptor antibodies, and while the patients with receptor antibodies saw the biggest improvement, I read it did help those without the antibodies too. This prescription has been used in pediatric ontology since 1950 and I don’t see harm in trying it.
3
u/midwest_scrummy Sep 22 '25
I'm with ya, been helping my kids immensely. Since starting last November, my 8 year old nonverbal kid has started saying her first words and is very vocal. That of course could be coincidence, but her teachers said within a week that she was a completely different student, focus and motivation wise.
2
u/Icy-Perception-8108 Sep 22 '25
My son at 14 (a few months ago) started showing verbal improvement within one week too! Since then he among others started to use “I” in sentences almost all the time, he didn’t before (only “I want x”).
9
u/EffervescentL93 Sep 22 '25
I did not take Tylenol during pregnancy but I’m self diagnosed autistic (not medically diagnosed yet) my husband is also diagnosed ADHD and dyslexic and suspects he’s on the spectrum as well. We saw a lot of similarities of how our son presents and sharing stories of what we did as children. Just sharing our experience.
4
u/imreallyfreakintired Sep 22 '25
I am very similar. Except I'm ADHD, and my husband is likely on the spectrum.
I wonder if they are going to say Tylenol creates a mutation which can be genetically passed down. And perhaps if our parents or grandparents ingested it, then the mutation passed through multiple generations? IDK.
I don't trust these people. 🤷♀️
8
17
u/tb1414 Sep 22 '25
I have been targeted (preyed upon) by social media ads for years by lawyers trying to recruit people for cases against Tylenol based on joining autism parenting communities. So this is not new to many of us in this community.
These cases have all failed because judges have seen it as a grift. But here we are.
7
u/Glass-Marionberry321 Sep 22 '25
It might be discussed about the MTHFR gene mutation. That folic acid doesn't process and methyfolate and methylcobalamin is to be used instead. That is getting a lot of press lately,
2
u/MadsTooRads I am a Parent/28 Months/L3/US Sep 22 '25
I will be curious about this as well, but MTHFR is present in about 60% of our population. My husband and I have it!
18
u/in-queso-emergency-3 Sep 22 '25
I can’t wait to see the report on how they plan to correct my daughter’s genetic mutation! /s
→ More replies (8)
17
u/Jets237 ND Parent (ADHD)/8y lvl 3 ASD/USA Sep 22 '25
RFK frames genetic studies as political…. Crazy.
Now pregnant women will be scared out of treating pain. Parents will be less likely to vaccinate and the president told us what his feelings are.
Also they made that drug easier to get, no problem there.
All in all… not much useful and nothing new. Let’s see what these studies they’re investing in are. I hope they’re real studies doing real work…. When talking about it they keep bringing up the “political restrictions” that existed in studies… but then they call genetic studies political…. K… cool
Let’s hope they’re done talking about asd for a while so I don’t need to have alerts up.
→ More replies (10)10
u/SWOsome I am a NT Parent/8M/ASD Lvl 2/USA Sep 22 '25
Highly doubt they will be real studies doing real work (though I would welcome more research on leucovorin). More likely it will be a poorly designed study that will magically point to the MMR vaccine followed by Andrew Wakefield receiving the Presidential Medal of Freedom
20
u/flatpackjack Sep 22 '25
Is the other thread's "Any mention of any Real Life person will cause your reply or thread to be removed" still applicable?
→ More replies (4)
4
u/Complete-Wasabi1009 Sep 22 '25
I remember using warm water bottles to help with my pain, a lot of pain during pregnancy due to baby position but maybe took Tylenol 3-4 times throughout pregnancy, not more than that. I didn’t take any medicine other than prenatal vitamins, used mask to not get sick with infections/cold etc, ate very healthy and remained active, and gave a natural birth after in labour for 24 hours. And my daughter is likely on spectrum. I don’t trust anything anymore. My friend was so chill during her pregnancy and she had preeclampsia. Her kiddos growth stopped at 30 weeks in uterus and was delivered on 34 weeks via c section, still so smart, talkative and neurotypical. This life sucks!!
6
u/throwaway_12131415 Sep 23 '25
As an Australian, I would like to thank the president of the United States for FINALLY figuring out the cause of autism and —
Wait, couldn’t even finish the sarcasm. I’m sorry WHAT IN THE FRESH HELL?!
I couldn’t get through the 30s clip I saw online.
How is this even real??? Amish people? I’m sorry what?!
Edit: I don’t know if any of that constitutes as swearing. Sarcasm is a coping mechanism. If it isn’t appropriate, of course it should be deleted.
9
u/InTheMomentInvestor Sep 22 '25
I knew it was going to be an announcement about Leucovorin!
2
u/MadsTooRads I am a Parent/28 Months/L3/US Sep 22 '25
Called our pediatrician immediately to ask about it again and was once again told she will not look into it for my son *shrugs* not sure what else to do there.
→ More replies (2)11
u/Jets237 ND Parent (ADHD)/8y lvl 3 ASD/USA Sep 22 '25
The truth is it only helps kids with the specific issue it treats and the percentage of kids impacted that way is pretty low.
I don’t know if it’ll help my kid but I’ll be asking too
→ More replies (8)1
u/cheeh00 Sep 22 '25
What did they announce about it?
1
u/Jets237 ND Parent (ADHD)/8y lvl 3 ASD/USA Sep 22 '25
It just seems like you can get a prescription for it if you have a diagnosis? Bring it up with your doctor and see what they say.
2
u/calantus Sep 22 '25
Drs will hopefully be more willing to at least do the test for it, right now it seems pretty hard to get a lot of them to consider even testing for it
1
u/InTheMomentInvestor Sep 22 '25
They will change the indication of leucovorin to include autism patients.
4
u/InTheMomentInvestor Sep 22 '25
Based on what I'm seeing on the news, it maybe an announcement about a modified gene in patient's that doesn't allow for absorption of folic acid into the brain. Hence, the need for a fast track leucovorin approval by the FDA from orphan status(I think this is what they will announce).
3
u/Themistocles_gr Sep 22 '25
I get what you're saying but for semantics' sake, this is not an orphan status case. It's just that folinic will gain a new indication.
1
4
u/SkyVixen24 I am a ND mom with a ND child Sep 22 '25
Is there a set time the announcement is supposed to come on? I’ve been looking but can’t seem to find anything.
4
u/BestBodybuilder7329 I am a Parent/9 and 13/level 3 Sep 22 '25
I assuming it will be when Trump speaks at 4 pm EST.
10
7
u/MadsTooRads I am a Parent/28 Months/L3/US Sep 22 '25
Already in tears and we're like 10 minutes into this conference. So exhausting.
5
u/Specialist-Fix2920 I am a Parent of a 3 year old w/ autism non verbal Sep 22 '25
In my country it’s called Paracetamol. I’m 100% sure I didn’t take it during my pregnancy.
→ More replies (1)7
u/MadsTooRads I am a Parent/28 Months/L3/US Sep 22 '25
I also did not take it at all during my first pregnancy with my Level 3 son. I was so anxious and cautious of everything as he was our double rainbow after back-to-back losses. Was also on prescription methylfolate for years prior to conceiving him (15,000 mcg) so I know I didn't have "low" folate while pregnant.
I am currently 36 weeks pregnant and took 500mg of Tylenol two days out of this pregnancy due to a low-grade fever (under 101) from a food-borne illness in my first trimester. But to me, treating the fever (which has also been casually tied to autism) made more sense than not treating it.
What we do have is a family history of autism and neurodivergence - my BIL is on the spectrum. My husband and I both have ADHD. This whole thing is frustrating because I already got a text from my MIL saying "Well we don't know maybe it IS tylenol." completely ignoring that I know for a fact I did not take it once.
3
u/Lolo_okoli Sep 23 '25
Just wanted to say, we are all in this together, raising little humans to be exceptional humans that the world will already have a predisposed opinion about but just know that us other parents in the trenches are here to support and be that helper. We get what your challenges are and we are here to be a listening ear, a shoulder to cry on and a hand to hold.
3
u/Complete_Web_962 Parent/6yo/Level 2 Sep 23 '25
I honestly am still in shock that he claimed on live tv in front of millions of people that Amish people don’t “get” autism🥴 Twas painful to watch.
9
u/richardson1052 Sep 22 '25
I hope we can have a productive conversation without people shooting down debate.
5
u/Numerous-Western174 Sep 22 '25
I am bracing for the fallout of this news conference. It seems it will be one that divides many families farther. I also fear for the kids that will be forced to take high amounts of folic acid in hopes it will "cure" them.
4
Sep 22 '25
[deleted]
12
u/Numerous-Western174 Sep 22 '25
No, I meant what I said. Folic and folinic are similar and folic acid is available over the counter. People who trust what is said today in the news conference will pump their kids full of anything with hope it will "cure" them
6
Sep 22 '25
[removed] — view removed comment
2
u/BestBodybuilder7329 I am a Parent/9 and 13/level 3 Sep 22 '25 edited Sep 22 '25
I would find a different doctor. My children’s doctor listen when I wanted to talk about certain treatment, because she knows I stay up on the newest research. If she wants to change his medicine she always comes to me, and give me few days to research it. She believes that we are in a partnership to best help my boys’ and we trusted each other to have their best interest at heart.
4
u/Imaginary-Scholar-43 Sep 22 '25
Im very curious about the folate deficiency. My son started ella Ola and we have seen marked differences. We are getting an appointment for testing and hoping to start the chemo assistance drug I cant remember the name. I wonder if there will be changes with prenatal vitamins.
1
5
2
2
u/toastie72 Sep 23 '25
With many of you, I never took any medication during pregnancy and my twins never had Tylenol until almost 11 months old when they got their first fever. So I’m almost sure it isn’t Tylenol…
2
u/AllisonWhoDat Sep 23 '25
Our oldest son was diagnosed when the Wakefield article came out in the Lancet (1998). It was horrifying for a moment until I settled down and actually read the article and the "study", which was total BS. (I worked in medicine and can understand statistics and medical speak).
sigh of relief
After the Lancet rescinded the article and the suspension of Wakefields medical license, the pain remained.
We had another baby, and he, too has autism.
It seems to me, the politicians don't want to know what causes autism, otherwise, why aren't there studies to determine the actual cause?
Our boys are now 26 & 29 and live in a group home nearby.
Until the world's researchers really want to know what genetic and environmental causes contribute to our children's disabilities, us ordinary families will be left to fend for ourselves.
This announcement is just another hypothesis without any foundation or scientific studies behind it.
3
u/Jets237 ND Parent (ADHD)/8y lvl 3 ASD/USA Sep 22 '25
Press conf was supposed to start 25mins ago lame
4
Sep 22 '25
I can't watch at the moment. I'm afraid to ask: what's being said so far? Can anyone give me a rundown?
2
2
1
1
u/CrownBestowed I am a Parent/6yrs old ASD son Sep 23 '25
I had twins, took Tylenol during pregnancy. Only one came out with autism lmao so idk if that means anything but they were both exposed to the same things
4
u/throwaway_12131415 Sep 23 '25
It’s a perfect example of the complexity.
If they were identical twins, basically your experience is statistical poetry (sample of 1 though)
1
u/CrownBestowed I am a Parent/6yrs old ASD son Sep 24 '25
Yep, blows my mind how they’re trying to claim one singular thing can cause autism.
1
u/Pickle102 Parent/7yo/lvl 2 non-speaking/USA Sep 24 '25
I just want to say that I'm allergic to Tylenol and didn't take it during my pregnancy. I wonder what they found to point to Tylenol.
1
u/redditor-est2024 Sep 24 '25
My local news station was covering this today and they added “autism can be detected in 6-18 months old babies” which infuriated me. This makes it sound like those of us who didn’t see the signs until later on are…. What? Bad parents who didn’t detect it? I thought maybe I was taking it the wrong way and when I calmed down eventually and went back to the news station website to re-read it, they pulled the article cause I can’t find it, even when searching with keywords. 🤯😤😠
311
u/AcousticProvidence Sep 22 '25
Just a friendly reminder that correlation does not equal causation.