13h ago

Your Child’s Anxiety Isn’t the Enemy | Jennifer Cohen Harper

What if the goal isn't to make your child's anxiety disappear? Jennifer Cohen Harper, founder of Little Flower Yoga, joins Sarah Kernion to explore childhood anxiety, nervous system regulation, sensory overwhelm, mindfulness, and what children actually need from us when they're struggling. Jennifer reframes anxiety as information rather than an enemy and explains why reassurance like “you're okay” or “take a deep breath” may not reach a child whose nervous system is already overwhelmed. Instead, parents can reduce overstimulation, increase connection, use sensory anchors, and first regulate themselves. This conversation explores the difference between supporting and accommodating anxiety, why overwhelmed children often cannot learn in the hardest moment, and how parents can build capacity without making children feel they need to be fixed. The inchstone? Ask yourself: What is my role right now? In This Episode 00:00 Why the goal isn't eliminating childhood anxiety 02:01 Navigating anxiety instead of trying to make it disappear 03:18 Anxiety is information 05:37 Normal anxiety versus anxiety that disrupts daily life 06:14 Supporting children without doing everything for them 08:10 Two things that make anxiety worse: overwhelm and disconnection 09:28 Reducing sensory overstimulation 11:13 Using one sensory experience as an anchor 12:18 How sensory input can help children orient to safety 14:36 Why parents need to orient themselves first 16:46 Regulation, co-regulation, and connection 18:03 When a parent's need to “fix it” can increase anxiety 19:08 Why helping others can build competence in children 21:44 Mindfulness for parents and children 22:09 Not every difficult parenting moment is an emergency 23:38 Don't teach the skill during the overwhelm 24:33 Connection can look different for different children 26:02 Build skills after the nervous system settles 28:50 Jennifer's “layers of sound” mindfulness practice 31:28 Why mindfulness isn't simply about calming down 32:55 Teaching children to trust their bodies 34:09 The question parents can ask themselves in an anxious moment 35:22 Being with your child instead of immediately changing them Topics Discussed Childhood anxiety, nervous system regulation, co-regulation, sensory overwhelm, mindfulness, sensory anchors, parenting anxious children, autism and anxiety, caregiver regulation, emotional resilience, window of tolerance, connection, accommodation versus support, parental anxiety, body awareness, child development, and building capacity. Key Questions Answered 1. Should parents try to eliminate their child's anxiety? 2. What does it mean to say “anxiety is information”? 3. When does normal childhood anxiety require additional support? 4. Why doesn't reassurance always work when a child is overwhelmed? 5. How are sensory overwhelm and anxiety connected? 6. What is a sensory anchor, and how can parents use one? 7. Why should parents regulate themselves before trying to regulate their child? 8. What's the difference between supporting anxiety and accommodating it? 9. Should parents teach coping skills during a meltdown or anxious episode? 10. How can children gradually develop greater capacity for uncomfortable feelings? Resources Jennifer Cohen Harper is a mindfulness and yoga educator, equine assisted learning facilitator, author, and founder of Little Flower Yoga, widely recognized for its trauma-informed school programming and training for educators and mental health providers. Jenn has spent two decades helping children and caregivers navigate anxiety and build inner resources. She is also the founder of Mindfulness with Horses, where she facilitates retreats for adults and families to build connection, compassion and courage. Jenn’s work has been featured in nota... Chapters (00:00:01) - Introducing Jennifer Cohn Harper and anxiety in kids(00:02:10) - Reframing anxiety as information, not the enemy(00:05:16) - Distinguishing normal anxiety from overwhelming anxiety(00:07:42) - Reducing overstimulation and increasing connection(00:11:15) - Sensory anchors and orienting to what's real(00:14:38) - Parent self-regulation and co-regulating with kids(00:17:30) - Practicing imperfectly and building competence together(00:19:06) - Redefining success and milestones in parenting(00:21:50) - Presence over fixing in intense moments(00:25:06) - Modeling mindfulness as an ongoing practice(00:29:43) - Nervous system adaptability over calmness(00:31:36) - Asking 'what is my role right now?'(00:33:48) - Closing thoughts and Omega course details

5d ago

Can One Autism Spectrum Really Hold All of This? A Conversation with Laurie Dove of Everyday Autism Essentials

Can one autism diagnosis adequately describe people whose abilities, challenges, communication, independence, and lifelong support needs may be radically different? In this episode of the INCHSTONES Podcast, Sarah Kernion sits down with fellow autism mother Laurie Dove for a candid conversation about the autism spectrum, diagnosis, profound support needs, parenting, nervous system regulation, advocacy, and what happens when families with very different lived experiences try to talk honestly with one another. This isn't a conversation about deciding whose autism is harder. It isn't a competition. It's a conversation about whether we can acknowledge the enormous heterogeneity within autism while maintaining dignity and respect for everyone who carries the diagnosis. Sarah and Laurie explore how broad the autism spectrum has become and why that can sometimes make conversations about autism confusing for parents, autistic adults, clinicians, advocates, and the public. They discuss the importance of listening to autistic people who can describe their internal experiences while also making room for families caring for children and adults who cannot reliably communicate their needs and may require substantial lifelong support. The conversation also moves from the abstract debate about autism into the minute-to-minute reality of caregiving. For some families, everyday activities that appear simple from the outside can require enormous amounts of preparation, patience, regulation, and co-regulation. Sarah and Lori discuss the role a parent's nervous system can play in those moments and why understanding behavior requires looking beyond what is immediately visible. They also wrestle with one of the most difficult dynamics in modern autism advocacy: how to disagree without dismissing another person's lived experience. Acknowledging profound autism does not require minimizing autistic people with lower support needs. Listening to autistic adults does not require ignoring parents caring for children with significant disabilities. And recognizing differences across the spectrum does not mean measuring whose life is harder. There has to be room for more than one truth. The goal of this conversation isn't to settle the autism debate. It's to make the conversation itself more honest. To ask another question. To listen again. And to remain curious enough to recognize that understanding autism may require us to hold experiences very different from our own. In This Episode 00:00 Why difficult autism conversations need to happen out loud 01:59 What an autism diagnosis means today 05:50 Understanding the enormous differences across the autism spectrum 06:52 Why heterogeneity matters when talking about autism 12:02 Parents, advocacy, and making room for different perspectives 18:04 The minute-to-minute realities of autism parenting 19:31 When everyday life requires constant regulation and support 23:58 Bridging very different experiences of autism 25:41 Why we need to talk about what's actually happening 26:20 Autism isn't a contest or competition 29:56 Ask another question and listen again Topics Discussed Autism spectrum disorder, autism diagnosis, profound autism, autism heterogeneity, autism advocacy, special needs parenting, caregiver stories, nervous system regulation, co-regulation, daily caregiving, autistic lived experience, parental perspectives, support needs, autism identity, respectful disagreement, community, curiosity, and making room for different experiences across the autism spectrum. Key Questions Answered 1. Can one autism diagnosis adequately describe people with radically different support needs? 2. What does heterogeneity within the autism spectrum actually mean for families? 3. Why can conversations about profound autism beco... Chapters (00:00:00) - Introduction to Lori Dove and the Conversation(00:01:48) - Reacting to the New York Post Article(00:04:27) - The Case for Splitting the Autism Spectrum(00:06:48) - Nervous System Regulation Over Diagnosis(00:08:36) - Self-Diagnosis, Content Creators, and Agency(00:14:06) - Government, Funding, and Community Advocacy(00:15:19) - Understanding Liberty's Day-to-Day Struggles(00:18:11) - Comparing Daily Realities Across the Spectrum(00:21:30) - Tension, Resentment, and Competing for Resources(00:23:32) - Bridging the Gap and Closing Thoughts

6d ago

When Your ZIP Code Determines Your Child’s Autism Services | Danielle Fields

What happens when the autism services your child needs simply aren’t available where you live? Danielle Fields knows the answer because she moved across four states trying to find them. In this episode of the INCHSTONES Podcast, Sarah Kernion sits down with Danielle, mother and fierce advocate for her 19-year-old autistic son, Paul, to talk about the extraordinary decisions families make when their children’s educational and support needs aren't being met. Danielle began her journey in California, where Paul was diagnosed with autism at age two. She quickly discovered one of the most frustrating realities of special needs parenting: being told what services your child needs means very little when there aren't enough people available to actually provide them. So she moved. From California to Nevada. From Nevada to Georgia. And eventually from Georgia to New Jersey. Each state taught Danielle something different about autism services, special education, IEPs, and advocacy. But the moves came with enormous costs. Danielle had been preparing for law school before Paul's diagnosis changed the trajectory of her life. Repeatedly relocating meant leaving jobs, rebuilding professionally, moving farther from family and friends, and expending the kind of emotional, physical, financial, and mental energy that caregivers of children with significant support needs understand all too well. Then, in New Jersey, something happened Danielle wasn't expecting. Paul's own public school team told her they didn't believe the next available district program was appropriate for him. They recommended an out-of-district placement, opening the door to a private special education program chosen around Paul's individual needs. Danielle and Sarah discuss the difference between accepting the program a system happens to offer and advocating for the education an individual child actually requires. They talk about IEPs, out-of-district placement, caregiver exhaustion, the professional sacrifices mothers make, rebuilding community far from home, and what happens when advocacy becomes part of motherhood itself. Danielle also shares one of the simplest strategies she uses when fear and uncertainty become overwhelming: write it down. Put the fear on paper, get it out of your head, and begin identifying what you can actually do next. Ultimately, this conversation is about trusting yourself enough to keep asking a deceptively simple question: What does my child actually need? Because children with disabilities shouldn't have to reshape themselves around whatever services happen to be available. Our systems should be able to respond to the child standing in front of them. Resources: Learn more about special education, IEP advocacy, and the educational rights of students with disabilities through the U.S. Department of Education’s Individuals with Disabilities Education Act (IDEA) resources. Subscribe to the INCHSTONES Podcast for caregiver stories, conversations about nonverbal autism, and honest perspectives on special needs parenting, profound autism, communication, advocacy, caregiver wellbeing, special education, IEPs, and raising children with significant support needs. About Danielle Fields Danielle M. Fields is the proud mother and "mama bear" advocate for her 19-year-old son, Paul, who was diagnosed with autism at age two. She remains deeply committed to autism advocacy and intends to continue that work throughout her life. Danielle Fields (Facebook) @team_uv_3 (Instagram) @thedmarieaesthetic (Instagram) @autismadvocacysupermom (Instagram) In This Episode: 00:00 When autism services depend on your ZIP code 02:01 Meet Paul: Danielle's 19-year-old autistic son 03:26 Realizing California couldn't provide the services Paul needed 05:18 What moving for autism services cost Danielle personally and pr... Chapters (00:00:00) - Introducing Danielle Fields and Paul's Journey(00:01:41) - Meet Paul: Loving, Quiet, and Neurodiverse(00:03:01) - The Beginning: Realizing Location Determines Services(00:04:41) - Emotional and Financial Costs of Constant Moves(00:06:46) - Career Sacrifices and Finding Helpers Along the Way(00:08:22) - Comparing States: California, Nevada, and Georgia(00:09:24) - Discovering New Jersey's Services(00:10:22) - The Deep Exhaustion of Advocacy Motherhood(00:12:01) - Out-of-District Placement: A Surprising Blessing(00:13:51) - Becoming a Fighter: Advocating Beyond What's Offered(00:14:57) - Trusting Maternal Intuition(00:17:34) - Writing It Down: Managing the Mental Noise(00:18:48) - What Could Have Been: Family, Community, and Trade-offs(00:20:26) - Final Advice: Trust Your Instinct(00:21:48) - Closing Thoughts on Systemic Change

Sep 3

Who Plans for This? A Father's Life with Profound Autism | Mike Hanner

What happens when a father whose career is built around managing risk is handed something he can’t plan his way out of? In this episode of the INCHSTONES Podcast, Sarah Kernion talks with autism advocate and corporate risk management professional Mike Hanner about raising his eight-year-old son Kingston, who is nonspeaking, autistic, and has apraxia. Mike spends his professional life anticipating what could happen, assessing uncertainty, and building systems designed to protect people from risk. Then came profound autism. Kingston met early developmental milestones, used words, sang and danced. Mike describes the pain of watching his son lose previously used speech and skills and the years it took him to understand that Kingston’s inability to reliably speak did not mean there wasn’t far more happening inside him. That realization changed the questions Mike began asking. Instead of only asking how to manage a symptom or behavior, he became increasingly interested in what might be happening underneath it. His office now contains multiple whiteboards filled with treatments, tests, therapies, diagnoses, and questions - a visual representation of a father determined to keep learning. Sarah and Mike talk candidly about navigating conventional medicine alongside Mike’s interest in biomedical and functional approaches. Mike is equally clear about something important: he is skeptical of anyone claiming to have one solution that works for every autistic child. The conversation instead centers on curiosity, collaboration with qualified practitioners, individualized decision-making, and the difficulty of evaluating emerging or contested approaches when your child cannot reliably tell you what hurts or how they feel. They also explore something discussed far less often: what profound autism can do to the family system. Two parents can love the same child completely and still have dramatically different capacities, coping styles, beliefs, and approaches to helping that child. Mike discusses the friction that can create inside marriages and partnerships - and why caring for the family itself cannot become an afterthought. Underneath the entire conversation is a question with no simple answer: How do you prepare for a future you never planned for? Mike’s answer isn’t certainty. It’s learning to live differently with uncertainty. Find your people. Ask better questions. Avoid the landmines other families have already encountered. Remain hopeful about what may be possible while preparing responsibly for significant lifelong needs. And above all, don’t become so consumed by the answer you’re still searching for that you miss the progress already happening. Because sometimes the progress isn’t a milestone. It’s an inchstone. Mike Hanner is a national employee benefits risk management executive who has spent his career helping employers navigate the complexities of group health insurance and healthcare strategy. More importantly, he is a father to an 8-year-old son with profound regressive autism. Mike and his family have spent years navigating the often-overwhelming world of autism: specialists, therapies, testing, treatments, schools, insurance, and the constant search for answers. He joined Sarah Kernion on Inchstones to share a father’s perspective on raising a child with significant support needs, navigating the many landmines families encounter, and advocating for his son every step of the way. Subscribe to the INCHSTONES Podcast for honest caregiver stories about nonverbal autism, special needs parenting, profound autism, caregiver burnout, disability, communication, family life, and the realities of raising children with significant support needs. Chapters (00:00:00) - Fathers of Autistic Kids(00:01:26) - What I Wish People Knew About Autism Before They Knew(00:05:44) - Dad on His Son's Cancer(00:13:25) - Allopathic Medicine and Your Child's Health(00:14:34) - Never Stop Learning(00:15:55) - The Search for a Good Chiropractic Doctor(00:20:02) - Autism and Family Relationships(00:22:36) - How to AVOID the Autism Landmines(00:26:26) - Being a Dad: The Inch Zones

Sep 1

What If It’s Not “Bad Behavior”? Understanding Your Autistic Child with Dr. Amy See

What if the behavior you’re trying to change is actually telling you something? In this episode of the INCHSTONES Podcast, Sarah Kernion talks with developmental psychologist and learning support specialist Dr. Amy See about nonverbal autism, special needs parenting, behavior, nervous system regulation, and learning to see the whole child before deciding what their behavior means. Parents of autistic children become accustomed to watching closely. Is my child listening? Why aren’t they responding? Why could they do this yesterday but not today? Is this refusal? Inattention? A sensory issue? A developmental delay? A behavior we need to correct? But Dr. See encourages parents and educators to slow down before assigning meaning. Because the same child can look very different in different environments. A child who struggles in a bright, noisy classroom may function very differently at home. A child who appears unable to participate in one environment may demonstrate far more ability when they feel calm, safe, connected, and regulated. For children with nonverbal autism, non-speaking autism, or significant communication and motor challenges, that distinction becomes especially important. What a child can demonstrate in a particular moment isn’t necessarily the same as what that child understands. Sarah shares what she has observed with Milly and Mack: even a response to something they understand can sometimes arrive much later than expected. A glance, movement, transition, or acknowledgment that takes longer to appear doesn’t necessarily mean the original language wasn’t received. Sometimes processing simply doesn’t happen on our timetable. Dr. See introduces a simple framework she uses when looking beneath behavior: capacity, safety, and regulation. What capacity does this child have in this moment? Do they feel safe and secure in this environment? Is their nervous system regulated, or is it overloaded? Rather than beginning with “Why is this child behaving this way?”, those questions allow parents, teachers, and clinicians to become curious about what the behavior may be communicating. Sarah and Amy also explore the pressure many special needs parents feel to turn nearly every moment into an opportunity for progress. When your child is developmentally behind, letting them wander through the backyard, play independently, or engage in an activity without a therapeutic objective can almost feel irresponsible. But play has value precisely because it isn’t always directed toward an outcome. Children need opportunities to rest, explore, consolidate what they’re learning, follow their interests, and experience connection without constantly being asked to perform. And sometimes one of the most powerful ways to connect with a nonverbal child isn’t asking them to enter our world at all. It’s entering theirs. Watch what brings them joy. Sit beside them. Pick up the object they’re fascinated by. Repeat the movement. Listen to the song. Join the play. Because before we decide what a child needs to learn next, we may need to become much better at seeing the child who is already in front of us. In This Episode 00:00 – Why INCHSTONES looks at the whole child 01:45 – Dr. Amy See's background in developmental psychology and learning support 02:45 – Why every child begins to make more sense when we understand what they need 03:25 – Observing children before trying to change them 03:55 – Nature and nervous system regulation 04:55 – Why environment can completely change a child's behavior 05:55 – Non-speaking autism, apraxia, and what children can demonstrate 06:45 – Why calm environments can reveal different abilities 08:05 – Developmental age versus ch...

Aug 26

Your Child Isn't the Only One Dysregulated: Special Needs Parenting with Stacey Uhrig

Special needs parenting can keep a caregiver's nervous system on high alert long after the immediate crisis has passed. In this episode of the INCHSTONES Podcast, Sarah Kernion talks with Stacey Uhrig, founder of Flip Your Mindset, about caregiver burnout, nervous system regulation, chronic stress, and what happens to parents after years of caring for children with significant support needs. Autism families spend enormous amounts of time learning about their children. Communication. Behavior. Sensory needs. Therapies. Education. Regulation. But Sarah and Stacey turn the lens around and ask a different question: What happens to the parent? Stacey explains why parenthood can expose coping strategies and patterns that may have been operating quietly for decades. Perfectionism. People pleasing. Conflict avoidance. Caretaking. Deprioritizing yourself to meet everyone else's needs. Those adaptations may once have served a purpose. But combine them with the demands of special needs parenting, nonverbal autism, intensive caregiving, and chronic uncertainty, and caregivers can eventually feel like a shell of who they once were. Stacey introduces the idea of the “invisible backpack” we each carry: our lived experiences, the meaning we've assigned to them, what we've learned to believe about ourselves and others, and the coping strategies we've developed along the way. Sometimes we're still carrying things that no longer belong in the backpack. Sarah and Stacey explore what happens when those old patterns collide with the extraordinary demands of raising a child with disabilities—and why caregiver wellness isn't another responsibility parents should feel guilty about failing to accomplish. It's part of sustaining yourself for the long haul. They also explore parts work and polyvagal theory, including how Stacey uses these frameworks with clients to understand stress responses, anxiety, overwhelm, shutdown, perfectionism, people pleasing, and the feeling so many adults describe as: “I don't even know who I am anymore.” And then there's co-regulation. Sarah shares how raising children with profound support needs has forced her to recognize something uncomfortable but powerful: her children experience her regulation, too. The morning routine still happens. The pull-up still needs changing. Teeth still need brushing. Transitions still need navigating. A parent's internal state doesn't erase the child's disability, but it can influence the environment in which both parent and child are trying to function. Stacey describes this as an invitation to stop believing the only solution is changing the child. Sometimes the environment changes when we change how we enter it. This is not another conversation telling exhausted special needs parents to meditate, take a bath, or add one more item to their self-care checklist. It's a conversation about understanding what's happening inside you. Because caregiver burnout isn't always evidence that you're incapable of carrying your life. Sometimes it's information about how long your body has been carrying it. Learn more about Stacey Uhrig and Flip Your Mindset, including her work around nervous system regulation, parts work, trauma, and personal transformation. WEBSITE: www.flipyourmindset.com ● PODCAST: www.flipyourmindset.com/podcast ● INSTAGRAM: www.instagram.com/staceyuhrig ● LINKED IN: www.linkedin.com/in/staceyuhrig ● YOUTUBE: www.youtube.com/@flipyourmindset ● BRAINZ MAG ARTICLES - www.brainzmagazine.com/executive-contributor/stacey-uhrig Stacey Uhrig is a Certified Trauma Care Practitioner and Rapid Transformational Therapy Practitioner, as well as the host of the Flip Your Mindset podcast. She is the creator of The Calm CodeTM, an 8-week program to help individuals heal anxiety from within, and the HURRTTM Survey, a tool to assess hidden stress and res... Chapters (00:00:00) - What Happens to the Parent's nervous system when their child has(00:01:26) - Why Do You Think You're Not Broken?(00:09:35) - How to Regulate a Special Needs Parent's Life(00:12:29) - How to Help Your Child With Autism(00:16:07) - Polyvagal Theory and Parts Work(00:22:22) - Polyvagal Theory: The Power of Anxiety(00:28:27) - On polyvagal theory

Aug 21

Stop Looking for Someone to Tell You What to Do: Autism Parenting with Len Arcuri

What if one of the most powerful things you can do for your autistic child is stop waiting for someone else to have all the answers? In this episode of INCHSTONES, Sarah Kernion sits down with Len Arcuri, founder and host of the Autism Parenting Secrets podcast, for an honest conversation about special needs parenting, nonverbal autism, caregiver stories, root causes, and learning to trust what you observe in your own child. After his son was diagnosed with moderate-to-severe autism at 18 months, Len didn't want to become an autism expert. He didn't particularly want to be curious, either. He wanted what so many parents want after an autism diagnosis: someone to tell him what to do. Years later, Len sees that differently. He and Sarah explore why curiosity, humility, critical thinking, and open-mindedness can become some of the most important tools in special needs parenting. Parents don't need to know everything about autism. But they can learn to observe their child carefully, ask better questions, evaluate options thoughtfully, and become active participants in decisions about their child's health, communication, regulation, education, and support. The conversation goes deeper into root cause thinking and why Len believes parents should keep asking why. Why is communication difficult? Why is my child dysregulated? Why are certain behaviors occurring? Why isn't something working? For Len, root cause thinking isn't about finding one universal explanation for autism or one treatment that works for every child. It's about remaining curious about the individual child standing in front of you and making thoughtful decisions about where to focus limited time, energy, and resources. Sarah and Len also talk about something especially complicated for families navigating nonverbal autism, profound support needs, and special needs parenting: Can you fully accept your child as they are while still wanting more for them? Len shares candidly that he once confused acceptance with giving up. Looking back, he realized he was deeply attached to the future version of his son he hoped would emerge rather than fully accepting the child in front of him. Eventually, he discovered that the two ideas didn't have to compete. A parent can completely love and accept their child today while continuing to pursue better health, communication, regulation, connection, and quality of life. They also examine the parent's side of the equation. Caregiver stress isn't only about finding the next autism therapy or intervention. Sometimes the most important change begins with how a parent navigates uncertainty—their beliefs, nervous system, decision-making, expectations, and ability to stay grounded when they don't know what happens next. And that may be one of the greatest lessons of caregiver stories like Len's: parents don't need certainty to move forward. They need curiosity, discernment and the humility to change course when new information emerges. And they need to recognize that the years they've spent observing their child have given them knowledge that deserves a place at the table. Len Arcuri is a Private Strategic Advisor to parents navigating autism and other complex developmental challenges. After more than two decades in financial leadership as a CPA, CFO, and Six Sigma Master Black Belt, his son's autism diagnosis redirected his life's work. Drawing on nearly two decades of lived experience and more than 300 conversations with leading experts as host of the top 1% Autism Parenting Secrets podcast, Len helps parents think clearly, make better decisions, and lead with greater confidence. He believes parents are the single greatest force multiplier in a child's life. Resources Listen to Len Arcuri's Autism Parenting Secrets podcast and learn more about his individualized advisory work with autism parents. Al... Chapters (00:00:00) - Autism Parenting Secrets(00:02:03) - Open-Minded Autism Parenting(00:06:08) - How to Raise a Child With Hope(00:12:16) - Exploring the Root Cause of Autism(00:15:55) - The role of parents in autism research(00:25:35) - The All-In Parent Power Score(00:30:25) - Len Has Autism on Inchstones

Aug 18

Who Speaks for Profound Autism? The Fight Over the Future of Autism Research with Tyler Hudson & Olivia Rojo

Who gets represented when the government decides the future of autism research? In this episode of INCHSTONES, Sarah Kernion is joined by advocates Tyler Hudson and Olivia Rojo for an urgent conversation about profound autism, caregiver stories, special needs parenting, and the families asking federal autism research to better reflect people with the most significant support needs. At the center of the conversation is the Interagency Autism Coordinating Committee (IACC) and its working draft for the next federal autism strategic plan. Sarah, Tyler, and Olivia discuss why the proposal has generated such intense debate—and why families raising children with profound autism believe this moment could help bring greater attention to a population they say has too often been missing from autism research. But this conversation goes far beyond one government document. What should autism research be trying to understand? Should researchers investigate causes, regression, medical complexity, communication challenges, gastrointestinal problems and other co-occurring conditions? How do we improve quality of life for autistic people today while still investigating the most disabling presentations of autism? And perhaps most importantly: who speaks for autistic people who cannot advocate for themselves? Tyler and Olivia discuss the tension between autism self-advocacy and parent advocacy, including their concern that conversations about autism acceptance can sometimes fail to represent families living with profound disability. They argue that acknowledging severe disability does not diminish an autistic person's dignity—and that accepting an autistic person and wanting to understand the causes of their suffering are not mutually exclusive. Olivia also shares the reality behind her advocacy: she is moving to another state seeking better care for her daughter while leaving her older daughter behind. Her family's experience opens a larger conversation about autism sibling dynamics, caregiver stress, profound care needs, and what happens when today's siblings become tomorrow's next of kin. Tyler shares his own family's experience trying to understand his son's recurring gastrointestinal problems and the exhaustion of parents being told, once again, that they are essentially responsible for experimenting, observing, adjusting, and trying to determine what helps their child. The three also confront a difficult reality of nonverbal autism and special needs parenting: much of the labor and suffering involved is invisible to people who have never lived it. Families may navigate dysregulation, communication barriers, medical issues, hypervigilance, sibling impact, and uncertainty about lifelong care—while simultaneously being criticized for talking publicly about those realities. This isn't a conversation asking for pity. It's a conversation asking for visibility, research, better systems, and the willingness to remain curious about what we still don't understand about autism. As Sarah says near the end of the episode: Severity is not the opposite of dignity. Families can fully love and accept an autistic person while still asking why they are suffering, what medicine may be missing, and what science still needs to understand. In This Episode 00:00 — Why Sarah, Tyler and Olivia came together for this conversation 01:55 — What families should understand about the IACC working draft 03:25 — “Autism is not a reason to stop looking” 03:50 — Profound autism and representation in autism research 06:35 — Why visibility matters for families with significant support needs 07:05 — Olivia's decision to move states seeking better care for her daughter 08:45 — Profound autism, terminology and representation 09:50 — Who advocates for autistic people who cannot self-advocate? 14:05 — What the proposed autism research framewor... Chapters (00:00:00) - In the Elevator With Olivia and Tyler(00:01:42) - Tyler on the Autism Plan(00:06:01) - Tyler Hudson on the Need for More Autism Speakers(00:10:24) - On the DSM 6 Public Comment(00:15:56) - Why are you not voting?(00:16:20) - Mitochondrial Alleviation Comments(00:20:44) - Autism parents speak out for their kids(00:24:40) - On the Caregiving of Autistic People(00:30:20) - Autism: Nothing Changes If Nothing Changes

Inchstones with Sarah | Autism Advocacy & Caregiver Stories

Your Child’s Anxiety Isn’t the Enemy | Jennifer Cohen Harper

Can One Autism Spectrum Really Hold All of This? A Conversation with Laurie Dove of Everyday Autism Essentials

When Your ZIP Code Determines Your Child’s Autism Services | Danielle Fields

Who Plans for This? A Father's Life with Profound Autism | Mike Hanner

What If It’s Not “Bad Behavior”? Understanding Your Autistic Child with Dr. Amy See

Your Child Isn't the Only One Dysregulated: Special Needs Parenting with Stacey Uhrig

Stop Looking for Someone to Tell You What to Do: Autism Parenting with Len Arcuri

Who Speaks for Profound Autism? The Fight Over the Future of Autism Research with Tyler Hudson & Olivia Rojo

Raw and Real

So honest

Love this podcast

Excellent and insightful

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Inchstones with Sarah | Autism Advocacy & Caregiver Stories

Episodes

Your Child’s Anxiety Isn’t the Enemy | Jennifer Cohen Harper

Can One Autism Spectrum Really Hold All of This? A Conversation with Laurie Dove of Everyday Autism Essentials

When Your ZIP Code Determines Your Child’s Autism Services | Danielle Fields

Who Plans for This? A Father's Life with Profound Autism | Mike Hanner

What If It’s Not “Bad Behavior”? Understanding Your Autistic Child with Dr. Amy See

Your Child Isn't the Only One Dysregulated: Special Needs Parenting with Stacey Uhrig

Stop Looking for Someone to Tell You What to Do: Autism Parenting with Len Arcuri

Who Speaks for Profound Autism? The Fight Over the Future of Autism Research with Tyler Hudson & Olivia Rojo

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