Inchstones with Sarah | Autism Advocacy & Caregiver Stories

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 become contentious?
4. How can parents and autistic adults listen to experiences very different from their own?
5. Can profound support needs be acknowledged without diminishing autistic identity or dignity?
6. Why shouldn't conversations about autism become competitions over who has it harder?
7. What role does parental nervous system regulation play in everyday autism caregiving?
8. Why can seemingly ordinary daily routines become extraordinarily difficult for some autistic children and families?
9. How can the autism community have difficult conversations without dismissing one another?
10. What changes when we approach disagreement with curiosity rather than certainty?

Resources

Find all of Laurie's advocacy work on Instagram at Everyday Autism Essentials
Learn more about autism spectrum disorder, diagnosis, and the wide range of abilities and support needs associated with autism through resources from the Centers for Disease Control and Prevention and the National Institute of Mental Health.
For families navigating significant or lifelong support needs, explore research and advocacy conversations surrounding profound autism and the experiences of individuals who require substantial assistance with communication, safety, daily living, and care.
Subscribe to the INCHSTONES Podcast for caregiver stories, conversations about nonverbal autism, and honest perspectives on special needs parenting, profound autism, communication, behavior, sensory needs, caregiver wellbeing, education, advocacy, and raising children with significant support needs.

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 professionally
06:33 Turning grief and anger into advocacy
08:17 How repeated moves affected Danielle's career
09:13 What Danielle found when she finally reached New Jersey
11:30 The exhaustion special needs mothers carry
12:35 Discovering out-of-district special education placement
14:51 The IEP versus whatever program a school happens to offer
15:52 Why parental intuition matters in special education advocacy
17:26 What happens when you're the only person telling you to keep going
18:47 Danielle's strategy for fear: write it down
20:02 The hidden cost of moving away from family for disability services
21:42 Danielle's inchstone: trust your instincts
22:45 Why a child's education shouldn't depend on where they live

Topics Discussed:
Autism services by state, special needs parenting, autism school advocacy, IEPs, special education, out-of-district placement, private special education, caregiver burnout, maternal advocacy, caregiver mental health, moving for disability services, parental intuition, educational inequity, family support, career sacrifices, autism across the lifespan, and parenting an autistic young adult.

Key Questions Answered:
1. Why do some families move to another state for autism services?
2. How can autism and special education services differ depending on where a family lives?
3. What is an out-of-district school placement?
4. What happens when a public school cannot appropriately meet an autistic student's needs?
5. How can parents distinguish between what's available and what their child actually needs?
6. What can repeated advocacy and relocation cost a caregiver professionally and emotionally?
7. How can parents approach an IEP when they believe their child's current program isn't appropriate?
8. How does caregiver burnout affect special needs mothers over many years?
9. How can parents make decisions when they're overwhelmed by conflicting advice?
10. What did Danielle learn from raising and advocating for Paul from childhood into young adulthood?

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.

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 chronological age
08:30 – Delayed responses don't necessarily mean a child didn't understand
10:15 – Celebrating responses that others might overlook
10:55 – What “all behavior is communication” actually means
11:20 – Capacity, safety, and regulation: Dr. See's CSR framework
12:45 – Why parents can catastrophize small developmental differences
14:30 – Frequency, severity, and looking for patterns before drawing conclusions
15:55 – Why caregiver regulation matters, too
16:20 – The pressure to optimize every moment of childhood
17:40 – Why independent play and downtime matter
18:45 – Connection as one of life's great luxuries
19:50 – Stop asking children, “Why can't you just focus?”
20:20 – Ask instead: “What lights you up?”
21:10 – Finding connection with nonverbal and non-speaking children
22:05 – Why refusal may actually be difficulty and inattention may be overwhelm
23:00 – Dr. See's inchstone: slow down enough to notice your child

Resources:

Subscribe to the INCHSTONES Podcast for caregiver stories, conversations about nonverbal autism, and honest perspectives on special needs parenting, profound autism, communication, behavior, sensory needs, caregiver wellbeing, education, and raising children with significant support needs.

You can find Dr. Amy See on her Substack and dig more into her incredible work, starting with this foundational article: Connection Before Correction — why safety has to come before a child can actually learn anything

Dr. Amy See is a developmental psychologist and Learning Support Specialist working within an international school community, and mother of two boys. She writes The (WHOLE) CHILD on Substack, exploring child development through what she calls a "rose-coloured lens" - assuming competence and good intent first, then asking what a child's environment, nervous system, or developmental stage might be asking of them. Her work sits at the intersection of clinician, educator, and parent, covering everything from connection-before-correction parenting to the science behind letter reversals.

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 resilience patterns. Through 1:1 coaching and group programs, Stacey blends Parts Work and Polyvagal Theory to help individuals heal emotional wounds, build confidence, and foster resilience.

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. 

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. All of his work can be found here: 
https://allinparent.com/
https://elevatehowyounavigate.com/

Subscribe to the INCHSTONES Podcast for more caregiver stories, conversations about nonverbal autism, and honest discussions of special needs parenting, profound autism, communication, caregiver mental health, therapies, advocacy, and raising children with significant support needs.

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 framework could change
16:40 — Biomedical research and why families want researchers to keep asking questions
18:20 — What parents and allies can do now
23:00 — Reorienting autism research instead of repeating old systems
25:25 — Medical complexity and investigating what may be affecting autistic children
26:55 — Tyler's son's gastrointestinal issues and the exhaustion of figuring it out yourself
29:10 — The physical and emotional health of autism caregivers
30:50 — What happens to siblings when parents are gone?
32:25 — Autism sibling dynamics and future caregiving responsibilities
33:30 — Why families share the realities of profound autism publicly
36:55 — What allies need to understand about special needs family life
37:40 — Tyler's call to action: systems must change to produce different outcomes
39:30 — Olivia's call to action: “Nothing changes if nothing changes”
40:35 — Why severity and dignity can coexist

Resources
Read the Interagency Autism Coordinating Committee (IACC) working draft and learn more about opportunities for public participation in federal autism research and policy.

Follow Tyler Hudson and Olivia Rojo for their perspectives on profound autism, caregiver advocacy, disability, and family life.

Subscribe to the INCHSTONES Podcast for caregiver stories, honest conversations about nonverbal autism, and the realities of special needs parenting, profound autism, disability caregiving, communication, research, family life, and raising children with significant support needs.

What can fiction reveal about special needs parenting that facts and statistics sometimes cannot? In this episode of INCHSTONES, Sarah Kernion talks with author Jacqueline Friedland about Breathing Underwater, her new novel exploring autism, caregiving, adolescence, independence, identity, and the extraordinary power of having one person who refuses to stop believing in you.
Jacqueline was raised by a professor of special education and began writing fiction in part because she believed stories could create empathy and help people see experiences outside their own. In Breathing Underwater, that mission takes shape through Leo, a 16-year-old autistic boy, and McKenna, a college swimmer whose seemingly successful life is quietly falling apart.
Their relationship raises questions that will feel deeply familiar to many special needs parents: How much support is enough? When does helping become holding on too tightly? How do we prepare autistic children for adulthood when so many services disappear after high school? And how do we learn to live without certainty about what comes next?

Sarah and Jacqueline also discuss the enormous importance of swimming and water safety for autistic children, including the elevated risk of drowning that helped inspire Jacqueline's novel. Their conversation moves beyond statistics, though, into the sensory and emotional experience of water—and the connection, regulation, and joy that can sometimes exist there.

They also explore caregiver stories, maternal identity, invisible labor, the desire to control every variable, and the difficult practice of allowing other people to help. Jacqueline shares one of the central realizations she had while developing Leo: difference does not automatically mean something needs to be fixed. A child's challenges and strengths can coexist, and autism cannot be reduced to one universal experience or one universal solutioAt its heart, this conversation is about support—not saving someone by changing who they are, but becoming the person who remains beside them while they discover what they're capable of.
In This Episode
01:30 — Why Jacqueline chose fiction to tell stories that matter
03:00 — Writing an autistic teenager instead of a young autistic child
05:00 — The “services cliff” after high school and preparing for adulthood
06:00 — How much support is too much—or not enough?
07:45 — Why one person believing in a child can change everything
09:45 — Autism, swimming, water safety, and drowning risk
11:15 — The sensory experience of being underwater
13:00 — Caregiving and the realization that not everyone needs to be “fixed”
15:30 — Invisible labor, motherhood, stress, and learning to relinquish control
18:30 — McKenna, college-student homelessness, and what happens without a support system
20:00 — Why there is no “struggle Olympics” in parenting
21:00 — Finding beautifully typical moments inside nonverbal autism
22:30 — Why caregiver stories can increase empathy and change how we see one another

Jacqueline Friedland is the USA Today and Amazon bestselling author of historical and contemporary women’s fiction. After earning degrees from the University of Pennsylvania and NYU Law School and practicing as a commercial litigator, she received her MFA in creative writing from Sarah Lawrence College. Her novels have earned multiple honors, including Readers’ Favorite Gold Medals, a Kirkus Reviews Best Indie Book of the Year selection, and a SheReads Best Book Club Pick. Her sixth novel, Breathing Under Water, arrives from Harper Muse in August 2026 following acclaim from Booklist, People, Zibby Owens, and the Jewish Joy Book Club. She lives in Westchester, New York.


Read Jacqueline Friedland's Breathing Underwater, a novel exploring autism, caregiving, identity, swimming, support, and the unexpected relationships that can transform our lives.

Subscribe to the Inchstones Podcast for more caregiver stories, conversations about nonverbal autism, and honest discussions of special needs parenting across childhood, adolescence, and adulthood.

What happens when families know a treatment could help their child—but can't access it? In this episode of Inchstones, Sarah Kernion sits down with pediatric neurologist Dr. John Gaitanis to discuss autism advocacy, autism therapy options, and why Meadow was created to help families access individualized care beyond a diagnosis.

For many families, an autism diagnosis is only the beginning. The harder question often comes next: Where do we go from here?

In this follow-up conversation, Sarah Kernion and pediatric neurologist Dr. John Gaitanis explore why so many parents struggle to access testing, treatments, and physicians willing to investigate the underlying biology affecting their child's health and development. Together, they discuss the vision behind Meadow, a telehealth platform designed to expand access to physician-guided care for autistic children and families.

Dr. Gaitanis explains why treatments such as leucovorin, gut microbiome testing, mitochondrial support, and other evidence-informed interventions are often difficult for families to obtain—even when research demonstrates safety and potential benefit. Rather than promoting a single solution, he describes a whole-child approach that asks a different question:
What is preventing this child from feeling and functioning at their best?

Sarah and Dr. G also discuss communication, pain, nervous system regulation, caregiver advocacy, and why behavior should never be viewed in isolation. For many non-speaking autistic individuals, behaviors such as aggression or self-injury may be expressions of untreated pain, inflammation, sensory challenges, or an inability to communicate effectively. Looking beyond behaviors and searching for root causes has the potential to improve quality of life for both children and their families. 

Whether you're beginning your autism diagnosis journey or looking for additional autism support resources, this episode encourages families to ask better questions, seek individualized care, and remain open to evidence-based approaches that prioritize the whole child.Resources

Learn more about Meadow Health and Dr. John Gaitanis' work in individualized autism care.

Subscribe to the Inchstones Podcast for conversations about autism advocacy, caregiver stories, and neurodivergent parenting, featuring physicians, researchers, caregivers, and advocates working to improve the lives of autistic individuals and their families.

Castos Description
Episode Summary
What happens when a special education teacher spends years working with profoundly disabled students—and then realizes the biggest lesson wasn't about teaching at all? In this episode of Inchstones, Sarah Kernion sits down with former special education teacher and Unspecial Podcast host Zack Ponder to explore caregiver stories, autism advocacy, neurodivergent parenting, and why presuming competence changes everything.
Full Episode Description
Before launching the Unspecial Podcast, Zack Ponder spent years teaching students with profound autism, complex communication needs, and significant disabilities. Those experiences fundamentally changed the way he understands intelligence, behavior, caregiving, and human connection.
In this thoughtful conversation, Sarah and Zack discuss what it means to presume competence, why outward behavior rarely tells the full story, and how educators, parents, and clinicians can better support children by seeing their strengths before their limitations. Zack shares stories from the classroom that forever shaped his understanding of autism communication, emotional regulation, and the incredible capabilities that often remain hidden beneath motor planning challenges. zack-sarah.txtTXT
The conversation also explores fatherhood, caregiver resilience, nervous system regulation, homeschooling, balancing family life during a spouse's cancer journey, and why caring for yourself is essential if you hope to co-regulate with the children who depend on you.
Together, Sarah and Zack examine why parents should trust what they observe, why difficult conversations strengthen advocacy, and how small moments of connection often become the most meaningful inchstones.
In this episode, we discuss:
autism advocacy through presuming competence
caregiver stories from both the classroom and home
neurodivergent parenting and emotional regulation
profound autism care and communication
autism education strategies
caregiver mental health and nervous system regulation
fatherhood and disability caregiving
special education advocacy
why connection matters more than compliance
finding hope through everyday inchstones
Whether you're raising an autistic child, working in special education, supporting neurodivergent families, or simply trying to become a calmer parent, this episode offers a hopeful reminder that every child deserves to be seen beyond what the world immediately notices.
In This Episode
02:30 — Why Zack left special education but never left the mission
05:00 — What profound autism taught him about seeing the unseen
08:00 — Caregiver burnout and protecting your nervous system
11:00 — Co-regulation begins with the parent
14:00 — Presuming competence in non-speaking children
17:00 — The classroom story that changed everything
20:00 — Fathers, strength, and disability parenting
24:00 — Why advocacy should create collaboration—not conflict
27:00 — Finding hope in the smallest everyday moments
Resources
Learn more about Zack Ponder and listen to the Unspecial Podcast, where he shares conversations with parents, educators, and disability advocates.

Subscribe to the Inchstones Podcast for more conversations about autism advocacy, caregiver stories, and neurodivergent parenting that help families feel seen, supported, and understood.

Read more essays on the Inchstones Substack.