Interoception and Non-Speaking Autism: What Parents Need to Know | Daria Kotenko, Spelling the T on Autism

Interoception and Non-Speaking Autism: What Parents Need to Know | Daria Kotenko, Spelling the T on Autism

If you're parenting a non-speaking autistic child and you've never heard the word interoception before, this episode of the Autism Changemakers Podcast is where to start.  I sat down with Daria Kotenko, mom to nine-year-old open speller Raphael and creator of Spelling the Tea on Autism, to talk about something that doesn't get nearly enough attention in our world: the inner body experience of non-speakers, and why parent regulation is not optional if you want to support it.  Interoception is the ability to feel what's happening inside your own body. Hunger. Thirst. Digestion. Tension. It is something many non-speaking autistic children struggle with deeply, and it affects everything from motor planning to sensory regulation to their ability to spell. What Daria and I explored together is how much of this work starts with us as parents, not with our children.  In this episode we talk about:  * What interoception is and why it is one of the most important things parents of non-speaking autistic children need to understand right now. * Why your child's ability to connect to their body and develop better motor planning and regulation is directly tied to how regulated you are as their parent. * Why you cannot fake calm around a non-speaking child, because they are perceptive enough to feel your state of stress or steadiness whether you say a word about it or not. * What it actually means to presume competence when it comes to the body, and why believing this work is possible is where it all begins. * What Daria and Raphael have built together as true partners in sharing their story, and what open spellers are telling us about what they need from the people around them. You cannot pour from an empty nervous system. And your child is already feeling everything you carry.   Connect with Daria and Raphael at spellingtheteaonautism.com [https://www.spellingtheteaonautism.com/], on Instagram @spelling_the_tea_on_autism [https://www.instagram.com/spelling_the_tea_on_autism/], or on Substack at spellingthetea.substack.com [https://spellingthetea.substack.com/]. If this resonated, come find me, Sara Intonato, on Instagram @sara.intonato [https://www.instagram.com/sara.intonato/] or learn more about Autism Changemakers at autismchangemakers.com [https://www.autismchangemakers.com/].   Support the show [https://www.buzzsprout.com/2536313/support]

How I Navigate Sharing the Hard Stuff on Social Media

If you've ever shared something vulnerable about your non-speaking child on social media, or felt the pull to, this episode is for you.  I recorded this for the Autism Changemakers Podcast because I saw a post recently from a mom I respect deeply. She shared an honest, graceful moment after an intense day with her son. It was beautiful. And it also made something rise up in me that I knew I had to talk about, because there's more here than most parents realize.  What you share online about your child today can shape how people treat them tomorrow. Schools look at your social media. Districts look at your social media. People in your community, sometimes quietly, sometimes anonymously, are forming opinions based on what they see. And they're only seeing a glimpse.  In this episode I talk about:  * The one question I always ask myself before posting anything about Rocco, and why it has nothing to do with shame. * Why even tasteful, face-protected posts about hard moments can put your child's long-term opportunities at risk in ways parents don't always see coming. * How inclusion decisions are made, and what professionals who've worked inside school districts have told me about what happens when they see repeated posts about meltdowns. * Why social media can feel like support, but often isn't the safe place parents actually need. * Where parents of non-speaking autistic children can bring the real, complicated, scary stuff without worrying about screenshots, judgment, or their child's reputation. Your child's story deserves to be told. And you deserve real support, not comment section support. Not likes and shares.   A private room full of people who already understand your life.   If this resonated, come find me, Sara Intonato, on Instagram @sara.intonato or learn more about Autism Changemakers at autismchangemakers.com.   Autism Changemakers is a private community just for parents of nonspeaking kids. It's where you don't have to explain yourself, and where you'll always be surrounded by people who believe in your child's brilliance. Come join us. autismchangemakers.com Support the show [https://www.buzzsprout.com/2536313/support]

When Progress Is Real But You're Still Not Enjoying Your Life

If your non-speaking autistic child is making real progress — and you still can't enjoy it — this episode is for you.  I recorded this because I see it constantly in my work with parents of non-speakers. The spelling is improving. The sleep is better. The hard moments are fewer. And yet you're still bracing. Still scanning. Still waiting for something to go wrong. And then comes the guilt — because you know things are better, and you still can't feel it.  This is not a character flaw. It's what happens when hypervigilance has been your baseline for so long that your nervous system doesn't know how to receive the exhale — even when it's finally safe to take one.  In this episode I talk about:  * Why your child's progress moves faster than your nervous system's ability to receive it — and why that gap is completely normal. * The "waiting for the other shoe to drop" pattern that keeps autism parents stuck in survival mode even when things are improving. * Why pouring everything into your child can quietly become another way to avoid slowing down and receiving support yourself. * What it actually takes to move from survival mode to presence — and why it doesn't happen automatically. * The one question I invite every parent to sit with: where am I still living on alert, even though things have changed? Your child's progress does not automatically create peace within you. You do. And you don't need to earn the right to receive support. You've already done that.   If this resonated, come find me on Instagram @sara.intonato [https://www.instagram.com/sara.intonato/]or learn more about Autism Changemakers at autismchangemakers.com. [https://www.autismchangemakers.com/] Autism Changemakers is a private community just for parents of nonspeaking kids. It's where you don't have to explain yourself, and where you'll always be surrounded by people who believe in your child's brilliance. Come join us. autismchangemakers.com [https://www.autismchangemakers.com/] Support the show [https://www.buzzsprout.com/2536313/support]

Autism Dad Support: Why Fathers of Non-Speaking Kids Need Community Too | Dr. Jonathan Chism, Autism Dads Social Club

If you're a dad of a non-speaking autistic child who's been quietly carrying this alone — or a mom who wishes the dad in your child's life had more support — this episode is for you.  I invited Dr. Jonathan Chism, co-founder and president of the Autism Dads Social Club, to come on the Autism Changemakers Podcast and talk about something deeply underserved in our world: the experience of fathers. Jonathan is a professor of history at the University of Houston, an ordained minister, and a dad to a non-speaking son. He built the Autism Dads Social Club from scratch because dads are out there carrying so much — and not raising their hands for help.  In this episode we talk about:  * Why the "strong man myth" keeps dads from asking for help, and why Jonathan built his community around socializing first — not therapy, just showing up together. * What double isolation really looks like when you're already parenting a non-speaking child and COVID takes away the last connection you had. * How finding purpose beyond your own household is what finally breaks the grip of isolation. * What I know from my own son's life — that an engaged dad changes everything, and why dads need to hear that their presence matters more than they realize. You don't have to have it figured out to show up. That's the whole point.   Connect with Jonathan and the Autism Dads Social Club at autismdadssocialclub.org [https://autismdadssocialclub.org/] or on Instagram @autismdadshtown [https://www.instagram.com/autismdadshtown] If this resonated, come find me on Instagram @sara.intonato [https://www.instagram.com/sara.intonato/]or learn more about Autism Changemakers at autismchangemakers.com [https://www.autismchangemakers.com/]   Autism Changemakers is a private community just for parents of nonspeaking kids. It's where you don't have to explain yourself, and where you'll always be surrounded by people who believe in your child's brilliance. Come join us.    Support the show [https://www.buzzsprout.com/2536313/support]

The Magic Bullet for Non-Speaking Autism Progress? It's Consistency

If you've ever asked another autism parent — what's the one thing that made the biggest difference for your child? — this episode is my honest answer.  People ask me all the time: Sara, what's the thing that transformed Rocco's journey? What's the magic bullet?  And I tell them: consistency.  Sometimes they're relieved. Sometimes they're disappointed. Because we live in a world of Amazon Prime mentality — where we expect results fast, and when they don't come, we quietly start to wonder if we should just stop.  But consistency looks like nothing is changing — until suddenly, everything is different.  In this episode I talk about:  * Why consistency is the most transformative thing I've done for Rocco — across diet, supplements, the letterboard, and everything in between * Why our instant gratification culture makes it harder than ever to stay the course * The hidden subconscious reason we give up before things take root * What you actually need to give yourself to stay consistent long enough to see real progress * My own adult tantrum moment two weeks into tracking my macros — and what happened when I kept going anyway If you've been close to giving up on something that matters — the letterboard, a supplement protocol, your own self-care — this episode will remind you why you started.   If this resonated, come find me on Instagram @sara.intonato [https://www.instagram.com/sara.intonato/] or learn more about Autism Changemakers at autismchangemakers.com. [https://www.autismchangemakers.com/] Autism Changemakers is a private community just for parents of nonspeaking kids. It's where you don't have to explain yourself, and where you'll always be surrounded by people who believe in your child's brilliance. Come join us. autismchangemakers.com [https://www.autismchangemakers.com/] Support the show [https://www.buzzsprout.com/2536313/support]