Yes, I am here in the inbetween with you. I was here, in 2013, when Autism Speaks came out with a dire call to action (my son was 12) that used so much of this same rhetoric - about lost lives & damaged families - and our community went ballistic & split. I rallied against the fear mongering but we were also a family very much struggling, and that got worse before it got better. Now I am focused on maintaining the services we all need for our kids.
I already have read it! And listened to the audio! I had to listen to y'all's voices while reading it. And you are right, after all is said, we still live it every day. They don't, they just read from a script and then on to the next story. Thanks so much for sharing and you go momma, second week for New York's Best Sellers List 💜💜
I agree that autism is a grey area - not a gift or a tragedy. But the fear is that asking why is a slippery slope that will lead to how can we get rid of it/them. Which is tantamount to eugenics.
Should we think of research for Down syndrome, cerebral palsy, or any other disability in this context? Addressing the needs of those who are significantly impacted by an autism diagnosis has the potential to save lives.
Your writing never ceases to to amaze me. Keep staying as strong as you are!! You’re the very best mama Cooper could have gotten! and I mean that with all my heart
No parent should ever have to worry about how to phrase a question about an injury to their child for fear of offending someone. These children were injured, we need to find out how. If they had born blind or lost their sight would anyone shame you for wishing he could see? There should be no possibility that can't be talked about and explored. Your love for your son comes through in every post.
Kate, thank you for your vulnerability always - it’s what has and does form this community AND for putting words to what so many of us feel. As a mom to two non-speaking autistic children(Milly & Mack, 9 & 7)I’ve lived in that “in-between” space too—the ache, the fight, the fierce love, the fear of what happens when we’re gone. I get it.
But I also believe we need to create space for more than just survival and sorrow.
We need space for the harder questions—even if they make people uncomfortable.
It’s not about denying acceptance.
It’s about refusing stagnation.
It’s about asking:
Why are rates rising?
Why is support still so inconsistent?
Why are families burning out—quietly, invisibly?
We can love our kids and want to understand what’s happening more deeply.
We can be curious without betraying our children.
I’m not here to divide. I’m here to expand the conversation.
Because if we only allow one narrative—one emotional bandwidth—we end up isolating the very moms who most need connection, clarity, and forward motion.
Let’s keep telling the truth. But let’s also keep asking: What don’t we know yet?
I love how you worded your response. These are all of the things I have thought. I love my son more than anything, but there are struggles and I want to know why he got it but my daughter didn't. Same two parents. Same vaccines. etc... I think we should always be asking questions. There is nothing wrong with keeping research at the forefront and trying to make our kids and the future kids' lives better.
I feel all the in-between things with you, Kate. I loved this line in your post: “I want to know why my son has autism and why my other children don’t. It's okay to ask why.” I struggled through some of the language used in the press conference, as others have mentioned. That said, I’m cautiously optimistic. The potential for this to be a net good for our community is enormous—if handled well.
Ive been a teacher, group home manager, staff, behavioral clinician, yoga teacher serving kids with profound autism for almost 45 years. I speak from all of that first hand experience. Our kids deserve all the services in the world to help them live their best lives no matter what. He doesnt have a clue. Ironically, he is alienating people on all sides of the spectrum and may help pull people on all parts of the spectrum and their families together to speak as one voice.
Thank you for sharing your thoughts on this. I have been feeling the same way about all of the autism stuff in the news and government. Do I think RFK could have worded his speech better? Absolutely, our kids are not burdens to our family. But autism is hard, like you said. And I am the same way if I could take it away for my son I would, or if I could have even one thing that would make his life better because of the research, I would do it in a heartbeat. So yes I agree with you, if anything comes out of this whole thing, awareness and more resources would be amazing!!!
I guess is that if RFK was truly on the side of kids with autism and other disabilities, he would not be working for someone who is gutting with the department of education and getting ready to cut billions of dollars off Medicaid, which is what funds, adult programming, and most autistic children and adults health care. There’s more but that’s a start. He doesn’t know autism and when he says that it must be the environment. It’s ironic because his boss is gutting any environmental protections out there. I’ve worked with kids and adults with autism for 44 years and the guy takes the cake.
But if you do really read and listen to what they are really saying, nothing is going to be cut from our children's funds for disability. What they are really after are the Medicaid frauders, and there are a lot of them out there. Social Security will not be hurt, in fact, helped. I have yet to see services touched. Until I do, I will not say anything negative.
Watch what they do, not what they say. They are after medicaid and T does not care where the cuts from. I really do read and I really do listen. Every single day.
We will have to agree to disagree. I will have faith and wait to see what happens and continue my research. Thanks for yours, hoping you have a great day!
You can put your thoughts and feelings into words so beautifully. I agree with you. I am currently reading your new book. It’s all so interesting and validating to read. I’m really enjoying it. Thank you for talking about the time to share with others.❤️
Yes, I am here in the inbetween with you. I was here, in 2013, when Autism Speaks came out with a dire call to action (my son was 12) that used so much of this same rhetoric - about lost lives & damaged families - and our community went ballistic & split. I rallied against the fear mongering but we were also a family very much struggling, and that got worse before it got better. Now I am focused on maintaining the services we all need for our kids.
I already have read it! And listened to the audio! I had to listen to y'all's voices while reading it. And you are right, after all is said, we still live it every day. They don't, they just read from a script and then on to the next story. Thanks so much for sharing and you go momma, second week for New York's Best Sellers List 💜💜
Can’t autism be both an identity AND a disability?
I agree that autism is a grey area - not a gift or a tragedy. But the fear is that asking why is a slippery slope that will lead to how can we get rid of it/them. Which is tantamount to eugenics.
Should we think of research for Down syndrome, cerebral palsy, or any other disability in this context? Addressing the needs of those who are significantly impacted by an autism diagnosis has the potential to save lives.
Research that will further support and enrich the lives of autistic folks is wonderful, but that's not what this administration has in mind.
some studies have found significantly higher levels of aluminum (common adjuvant in vaccines) in the brains of autistic individuals... https://eccentrik.substack.com/p/new-paper-evidence-showing-childhood
Your writing never ceases to to amaze me. Keep staying as strong as you are!! You’re the very best mama Cooper could have gotten! and I mean that with all my heart
Julie 💙
No parent should ever have to worry about how to phrase a question about an injury to their child for fear of offending someone. These children were injured, we need to find out how. If they had born blind or lost their sight would anyone shame you for wishing he could see? There should be no possibility that can't be talked about and explored. Your love for your son comes through in every post.
Kate, thank you for your vulnerability always - it’s what has and does form this community AND for putting words to what so many of us feel. As a mom to two non-speaking autistic children(Milly & Mack, 9 & 7)I’ve lived in that “in-between” space too—the ache, the fight, the fierce love, the fear of what happens when we’re gone. I get it.
But I also believe we need to create space for more than just survival and sorrow.
We need space for the harder questions—even if they make people uncomfortable.
It’s not about denying acceptance.
It’s about refusing stagnation.
It’s about asking:
Why are rates rising?
Why is support still so inconsistent?
Why are families burning out—quietly, invisibly?
We can love our kids and want to understand what’s happening more deeply.
We can be curious without betraying our children.
I’m not here to divide. I’m here to expand the conversation.
Because if we only allow one narrative—one emotional bandwidth—we end up isolating the very moms who most need connection, clarity, and forward motion.
Let’s keep telling the truth. But let’s also keep asking: What don’t we know yet?
I love how you worded your response. These are all of the things I have thought. I love my son more than anything, but there are struggles and I want to know why he got it but my daughter didn't. Same two parents. Same vaccines. etc... I think we should always be asking questions. There is nothing wrong with keeping research at the forefront and trying to make our kids and the future kids' lives better.
I feel all the in-between things with you, Kate. I loved this line in your post: “I want to know why my son has autism and why my other children don’t. It's okay to ask why.” I struggled through some of the language used in the press conference, as others have mentioned. That said, I’m cautiously optimistic. The potential for this to be a net good for our community is enormous—if handled well.
Are you referring to RFK and his plan to reveal the cause for autism in September that has been in the news?
Now is a very good time to pause and reflect and not react to the chaos in our country.
Share concise facts from your autism experience.
As always edit yourself for clarity.
Ive been a teacher, group home manager, staff, behavioral clinician, yoga teacher serving kids with profound autism for almost 45 years. I speak from all of that first hand experience. Our kids deserve all the services in the world to help them live their best lives no matter what. He doesnt have a clue. Ironically, he is alienating people on all sides of the spectrum and may help pull people on all parts of the spectrum and their families together to speak as one voice.
Thank you for sharing your thoughts on this. I have been feeling the same way about all of the autism stuff in the news and government. Do I think RFK could have worded his speech better? Absolutely, our kids are not burdens to our family. But autism is hard, like you said. And I am the same way if I could take it away for my son I would, or if I could have even one thing that would make his life better because of the research, I would do it in a heartbeat. So yes I agree with you, if anything comes out of this whole thing, awareness and more resources would be amazing!!!
I guess is that if RFK was truly on the side of kids with autism and other disabilities, he would not be working for someone who is gutting with the department of education and getting ready to cut billions of dollars off Medicaid, which is what funds, adult programming, and most autistic children and adults health care. There’s more but that’s a start. He doesn’t know autism and when he says that it must be the environment. It’s ironic because his boss is gutting any environmental protections out there. I’ve worked with kids and adults with autism for 44 years and the guy takes the cake.
But if you do really read and listen to what they are really saying, nothing is going to be cut from our children's funds for disability. What they are really after are the Medicaid frauders, and there are a lot of them out there. Social Security will not be hurt, in fact, helped. I have yet to see services touched. Until I do, I will not say anything negative.
Watch what they do, not what they say. They are after medicaid and T does not care where the cuts from. I really do read and I really do listen. Every single day.
We will have to agree to disagree. I will have faith and wait to see what happens and continue my research. Thanks for yours, hoping you have a great day!
And I will keep watching what they do
You can put your thoughts and feelings into words so beautifully. I agree with you. I am currently reading your new book. It’s all so interesting and validating to read. I’m really enjoying it. Thank you for talking about the time to share with others.❤️