No one is silencing or gatekeeping here and frankly I'm tired of fielding unbased accusations. I oppose RFK's ableist rhetoric. I fully support scientific inquiry into autism research (though I think funds would be better spent on actually supporting autistic people) but that's not at all what RFK is proposing but the dismantling of legitimate science inquiry itself.
The Call to Action in the title of this email is abhorrent to me. We need all the data we can get to soundly rule things our and to know what paths to investigate more. Shutting down inquiry is a major part of what brought us to where we are today. The censorship of science is a massive quagmire, its backward and closed-minded. This mom of atypical kids is unsubscribing today.
Thank you, Isobel. Your clarity and courage in calling this out means everything to families like mine. I’m the mom of two non-speaking autistic children, and like you, I believe inquiry must stay open - especially when it comes to our kids.
Silencing questions is what got us here. We need more truth-tellers like you willing to hold the line. I write about this from the trenches on my Substack, Inchstones, if you ever want to connect with others who refuse to shut up or sit down.
Julie and Kate, you speak of “elevating science,” but where is the invitation to voices like mine? I’m the full-time caregiver of two non-speaking children with high support needs, profound autism. I live this 24/7. I am the data set no one includes. If your goal were to actually elevate understanding, you’d be inviting moms like me into this conversation not dismissing our lived reality or questioning our intelligence. I’d go live with either of you in a heartbeat! But instead of dialogue, there’s derision. That’s not science. That’s gatekeeping.
I’m not claiming to be a scientist, Sarah. RFK is certainly not either. Your lived experience is expertise, and so is mine. Thank you for being here, engaging in this dialogue. I don’t think your assessment is accurate, but I’m happy to leave it here for now. This community is for all subscribers who are raising neurodivergent kids.
How old are your kids?
Do they (and you) have enough support?
What are you hoping to achieve by defending RFK?
What would you like to chat about when we go live?
The medium of text can lack nuance, and there’s some nervous system activation happening.
I’m not vetting you, I’m asking questions to get to know you, make connections, and find common ground. I know it’s there. We’re more the same than different.
Kate, I appreciate the invitation as I have invited tens of writers and moms from both Substack and Instagram to record an episode on my podcast and none have agreed. So thank you, I sincerely look forward to this Congo. We must be honest about what’s happening here: you asked how old my kids are, whether I have support, and what I’m hoping to achieve by defending RFK - as if my motives need vetting before I’m granted full participation. That’s not dialogue. That’s gatekeeping dressed as concern. You say this space is for parents of neurodivergent kids. I’m not only neurodivergent myself AND living that, 24/7, in a body that does not get a moment to breathe if I'm being the very best parent I always wish to be. I’m not here to “elevate science” in theory. I’m here because my lived experience is evidence -ignored, inconvenient, and uninvited until I forced my way in.
I listened to the podcast while bathing mu 10yr old who, for all the brilliance she exhibits and I GET to experience as her Mom, I’ll probably listen again ten more times. Because unlike what you implied, I do take discernment seriously. I track data. I log patterns. I question narratives. (And I’ve had to do all of that without institutional permission.) I truly look forward to the live - I hope it be one that can hold complexity not just compliance. I won’t shrink my experience to fit a safer narrative.
Ps: RFK Jr. may be messy, but he’s doing something his father would’ve recognized: he’s trying to fight against the captured institutions that forgot they serve the people, not the pharmaceutical lobby, not the bureaucracy, and not the narrative managers.”
Isobel, if you're comfortable with your child's data being shared, that's your choice. Many parents I've heard from are either enraged or terrified at the prospect of their kids' data being used, especially for a "registry."
That's similar to how the Nazi regime began. Lists of humans they decided were disposable because they couldn't contribute to the Reich. We will not let that happen to our kids.
As Julie noted in our conversation, research has been happening this whole time, for decades (at least until entire departments were recently fired) so I really don't think you're talking about the censorship of science.
If you're talking about Andrew Wakefield losing his medical license because he faked his data, yes. Some scientists need to be censored. There should be oversight and discernment so lies aren't so easily spread for profit.
Kate, invoking the Nazi regime in a conversation about parent-led data advocacy and autism is not only historically reckless…it’s morally outrageous.I’m the mother of 2 profound, non-speaking autistic children. Their lives are not symbolic stand-ins for political metaphors. They are real, complex, sacred. You talk about protecting “our kids” but you don’t speak for mine. You didn’t ask about them and you clearly aren’t listening to parents like me who live with the realities you theorize about.
If you actually believe in discernment and oversight, start by applying it to your own rhetoric. Because right now, you’re silencing the very people most qualified to speak: the parents in the trenches. We don’t need another gatekeeper. We need truth. We need space. We need each other. You’re welcome to visit my Substack, Inchstones, if you ever decide to leave the echo chamber.
Respectfully, this isn’t “squabbling.” This is narrative control dressed up as professionalism. When you say we’re on the same team, I think we have to ask:
What team? Because the team I’m fighting for includes moms who are still diapering teenagers, navigating daily aggression, and being told to soften their stories for the comfort of others. That is profound autism.
When some starts a sentence with "respectfully," I've noticed that the opposite is usually coming. But here we are, still having open dialogue in this community, and I haven't gated or controlled anything - despite your claims.
I'm here for you. I created this community for all of us. We don't know each other yet. But I'm open to it if you are. Not sure how else to put it.
I don't want to continue going back and forth like this right now because I feel my nervous system starting to slide into my old CPTSD patterns of appeasement (fawning).
Our opinions can differ, and we're both worthy of respect.
It's Saturday night and we all deserve a little break. Even parents like me, whose kids don't need diapers any more, and haven't been punched in almost a year.
But I'd love an invitation to your podcast, and we can definitely go live the week of May 12.
Maybe the title was misleading? If you listen to the interview (which hopefully you will/have), you will find the message is quite the opposite:
It is to drown out ableist and hateful rhetoric against the autistic community in favour of elevating science! This administration is censoring and cutting funding to science and proper rigorous research in favour of trudging up theories that have been debunked over and over again. It is pathologizing and dehumanizing autistic people.
No one is silencing or gatekeeping here and frankly I'm tired of fielding unbased accusations. I oppose RFK's ableist rhetoric. I fully support scientific inquiry into autism research (though I think funds would be better spent on actually supporting autistic people) but that's not at all what RFK is proposing but the dismantling of legitimate science inquiry itself.
The Call to Action in the title of this email is abhorrent to me. We need all the data we can get to soundly rule things our and to know what paths to investigate more. Shutting down inquiry is a major part of what brought us to where we are today. The censorship of science is a massive quagmire, its backward and closed-minded. This mom of atypical kids is unsubscribing today.
Thank you, Isobel. Your clarity and courage in calling this out means everything to families like mine. I’m the mom of two non-speaking autistic children, and like you, I believe inquiry must stay open - especially when it comes to our kids.
Silencing questions is what got us here. We need more truth-tellers like you willing to hold the line. I write about this from the trenches on my Substack, Inchstones, if you ever want to connect with others who refuse to shut up or sit down.
Julie and Kate, you speak of “elevating science,” but where is the invitation to voices like mine? I’m the full-time caregiver of two non-speaking children with high support needs, profound autism. I live this 24/7. I am the data set no one includes. If your goal were to actually elevate understanding, you’d be inviting moms like me into this conversation not dismissing our lived reality or questioning our intelligence. I’d go live with either of you in a heartbeat! But instead of dialogue, there’s derision. That’s not science. That’s gatekeeping.
I’m not claiming to be a scientist, Sarah. RFK is certainly not either. Your lived experience is expertise, and so is mine. Thank you for being here, engaging in this dialogue. I don’t think your assessment is accurate, but I’m happy to leave it here for now. This community is for all subscribers who are raising neurodivergent kids.
How old are your kids?
Do they (and you) have enough support?
What are you hoping to achieve by defending RFK?
What would you like to chat about when we go live?
I would love an invitation!
The medium of text can lack nuance, and there’s some nervous system activation happening.
I’m not vetting you, I’m asking questions to get to know you, make connections, and find common ground. I know it’s there. We’re more the same than different.
Kate, I appreciate the invitation as I have invited tens of writers and moms from both Substack and Instagram to record an episode on my podcast and none have agreed. So thank you, I sincerely look forward to this Congo. We must be honest about what’s happening here: you asked how old my kids are, whether I have support, and what I’m hoping to achieve by defending RFK - as if my motives need vetting before I’m granted full participation. That’s not dialogue. That’s gatekeeping dressed as concern. You say this space is for parents of neurodivergent kids. I’m not only neurodivergent myself AND living that, 24/7, in a body that does not get a moment to breathe if I'm being the very best parent I always wish to be. I’m not here to “elevate science” in theory. I’m here because my lived experience is evidence -ignored, inconvenient, and uninvited until I forced my way in.
I listened to the podcast while bathing mu 10yr old who, for all the brilliance she exhibits and I GET to experience as her Mom, I’ll probably listen again ten more times. Because unlike what you implied, I do take discernment seriously. I track data. I log patterns. I question narratives. (And I’ve had to do all of that without institutional permission.) I truly look forward to the live - I hope it be one that can hold complexity not just compliance. I won’t shrink my experience to fit a safer narrative.
Ps: RFK Jr. may be messy, but he’s doing something his father would’ve recognized: he’s trying to fight against the captured institutions that forgot they serve the people, not the pharmaceutical lobby, not the bureaucracy, and not the narrative managers.”
I guess we’ll see.
Isobel, if you're comfortable with your child's data being shared, that's your choice. Many parents I've heard from are either enraged or terrified at the prospect of their kids' data being used, especially for a "registry."
That's similar to how the Nazi regime began. Lists of humans they decided were disposable because they couldn't contribute to the Reich. We will not let that happen to our kids.
As Julie noted in our conversation, research has been happening this whole time, for decades (at least until entire departments were recently fired) so I really don't think you're talking about the censorship of science.
If you're talking about Andrew Wakefield losing his medical license because he faked his data, yes. Some scientists need to be censored. There should be oversight and discernment so lies aren't so easily spread for profit.
Kate, invoking the Nazi regime in a conversation about parent-led data advocacy and autism is not only historically reckless…it’s morally outrageous.I’m the mother of 2 profound, non-speaking autistic children. Their lives are not symbolic stand-ins for political metaphors. They are real, complex, sacred. You talk about protecting “our kids” but you don’t speak for mine. You didn’t ask about them and you clearly aren’t listening to parents like me who live with the realities you theorize about.
If you actually believe in discernment and oversight, start by applying it to your own rhetoric. Because right now, you’re silencing the very people most qualified to speak: the parents in the trenches. We don’t need another gatekeeper. We need truth. We need space. We need each other. You’re welcome to visit my Substack, Inchstones, if you ever decide to leave the echo chamber.
Also how is any of this parent-led???
Please make sure you listen to the conversation first, because I don’t get the sense that you have.
Respectfully, this isn’t “squabbling.” This is narrative control dressed up as professionalism. When you say we’re on the same team, I think we have to ask:
What team? Because the team I’m fighting for includes moms who are still diapering teenagers, navigating daily aggression, and being told to soften their stories for the comfort of others. That is profound autism.
Yup. I'm here for you, Sarah.
What do you want to achieve?
How am I telling you to soften your story?
When some starts a sentence with "respectfully," I've noticed that the opposite is usually coming. But here we are, still having open dialogue in this community, and I haven't gated or controlled anything - despite your claims.
I'm here for you. I created this community for all of us. We don't know each other yet. But I'm open to it if you are. Not sure how else to put it.
I don't want to continue going back and forth like this right now because I feel my nervous system starting to slide into my old CPTSD patterns of appeasement (fawning).
Our opinions can differ, and we're both worthy of respect.
It's Saturday night and we all deserve a little break. Even parents like me, whose kids don't need diapers any more, and haven't been punched in almost a year.
But I'd love an invitation to your podcast, and we can definitely go live the week of May 12.
I hear you. I'm wiped too. I would love to join you all on Wednesday. Podcast link to book sent 🤍
Thank you for listening. Would you like to join me live Sarah? Let’s do it. Of course I want to hear your perspective.
Yes! I absolutely would love to join you both.
I’d also suggest that you read what @Emily W. King, Ph.D. recently posted. We don’t have time for this squabbling. We’re on the same team.
RFK is NOT science-friendly. Did you listen?
Maybe the title was misleading? If you listen to the interview (which hopefully you will/have), you will find the message is quite the opposite:
It is to drown out ableist and hateful rhetoric against the autistic community in favour of elevating science! This administration is censoring and cutting funding to science and proper rigorous research in favour of trudging up theories that have been debunked over and over again. It is pathologizing and dehumanizing autistic people.