🪺 Glimmer Nest: Bridging Two Expertises ~ How Parents and Professionals Can Partner for Neurodivergent Children

There's a moment that happens in almost every medical appointment, therapy evaluation, or school meeting. It's the subtle shift in energy when I realize I'm being looked at not as an expert on my own child, but as an anxious parent whose observations need to be "properly examined and interpreted" by someone with credentials.

It’s the expertise gap—that canyon between the intimate, detailed knowledge we hold as parents of neurodivergent children and the clinical, credentialed expertise that society values more.

🩺 The Doctor Will See You Now (But Will They Really See You?)

A few months ago, I found myself in a neurologist's office, carefully describing what I believed might be absence seizures in my son. After fifteen years of watchful observation, cataloging patterns, and learning to distinguish between his various neurological experiences, I've developed what I can only describe as a custom lens—the ability to notice subtle shifts that even trained professionals might miss.

The neurologist's response? She rolled her wheeled chair directly up to my son, positioning her face about two inches from his, and began rapid-firing questions:

"Are you afraid of someone?"

“Are you feeling strange sensations in your head?”

"Do you feel like someone is controlling your thoughts?"

"When these episodes happen, what are you thinking about?"

My son, who despite being verbal struggles with processing rapid questions (let alone from unfamiliar people), froze. I watched his anxiety spike in real-time, his eyes darting toward me in silent plea.

In that moment, I wasn't just a concerned parent—I was the bridge, the translator, the protector, and the historian of my child's lived experience. Yet somehow, my expertise counted for less than her credentials. We left that appointment with no new answers, next steps or comfort, just frustration.

🐒 When the Expert Becomes a Jungle Gym

The expertise gap isn't without its moments of unintentional comedy. I'll never forget the appointment with a new pediatrician when my son was four. We needed his PK-4 school vaccination update, and he was terrified. In a moment of pure survival instinct, he quite literally climbed me like a ladder and wrapped himself around my head like a human helmet.

The pediatrician—completely unprepared for this scenario—stood frozen, eyes darting upward to my son's face now perched atop mine, then back to his clipboard, clearly searching for the medical code describing the scene before him.

We conducted the entire visit that way. Me speaking through the tangle of small limbs wrapped around my face, the doctor directing his questions somewhere between my eyes and the small feet dangling near my ears. Not a single technique from medical school had prepared him for this adaptation.

These moments of absurdity punctuate our journey. If you could see us now during toenail-cutting sessions—my 6'1" teen stretched out behind me on the bed, legs extending on either side of me like I'm sitting in the middle of a giant letter V, him often lying flat to avoid seeing the clippers—you'd wonder who's the expert now. From a bird's eye view, we must look like participants in some bizarre yoga pose gone wrong.

But it works. And that's the thing about parental expertise—it rarely looks impressive on paper. It's not backed by peer-reviewed studies or professional certificates. It's messy and sometimes ridiculous-looking, but it's built on the most extensive and intimate research study ever conducted: the minute-by-minute observation of your own child across years of development.

👀The Other "Experts" in the Room

It's not just professionals with formal credentials who can dismiss our expertise. Sometimes it's the well-meaning parent of three neurotypical children who offers advice based on sheer numerical advantage: "Well, I've raised three kids, so I know that..."

Or the relative who has a friend's cousin's child "with something similar" who offers solutions based on secondhand anecdotes.

Perhaps most complex are the interactions with other parents of neurodivergent children who have been on this journey longer than we have. Their valuable experience can sometimes morph into a different kind of credential—the "I've been doing this for twenty years" badge that can inadvertently minimize our own expertise about our specific child.

I value the wisdom of experienced parents immensely. Their hard-won insights have helped me navigate countless challenges. But there's a delicate balance between sharing knowledge and acknowledging that each child's neurodivergence expresses itself uniquely.

My son is not your son, even if they share diagnoses. My family's circumstances are not yours. The strategies that transformed your child's life might barely move the needle for mine, and vice versa.

✨ Gathering Evidence in Gentler Ways

One adaptation I've found particularly valuable is recording videos of new behaviors or concerning episodes. Not as "proof" for skeptical professionals, but as a tool that allows my son and me to discuss what's happening without him feeling pressured to perform or explain in the moment.

"Look at this together with me," I might say, sitting beside him on the couch where he feels safe. "Can you tell me anything about what was happening here?"

These documented moments become conversation starters, free from the pressure of a ticking appointment clock or a clinician's stare. They allow us to build understanding together, at his pace and in his comfort zone.

I've learned that he opens up most freely when we're side by side rather than face to face. In the car, with his eyes focused on the road ahead, or lying on the couch in a soft, supportive spot, conversations flow that would be impossible in the fluorescent-lit examining room with its implicit power dynamics.

These aren't interrogations or quick battles to extract truths that fit neatly on a doctor's checklist. They're gentle explorations of his experience, especially now as his body and emotions navigate the tumultuous teenage years.

He ultimately doesn't know how to express this transition except as a general discomfort, and I strongly suspect many of his new tics and escalating anxiety stem from these developmental changes that feel overwhelming and inexplicable to him.

📒The Unwritten User Manual

Recently, a friend suggested I write a letter to each doctor my son sees—essentially creating a user manual for interacting with him. Admittedly, that sounded overwhelming.

But then I realized: that's exactly what I've been doing his entire life. Creating manuals. Building bridges. Developing systems.

Those years when cutting his toenails felt like negotiating an international peace treaty? Now we have a system: he sits behind me on the bed, legs stretched out on either side, often lying back so he doesn't have to see what's happening. A simple adaptation that took years of trial and error to discover.

Or the bathtub haircuts of his early childhood—the only place where the sensory experience felt manageable—that gradually evolved into his now-enjoyable visits to the salon that looks like Chuckie Cheese designed pirate’s ship …"where everybody knows his name."

These aren't just cute parenting anecdotes. They represent thousands of hours of careful observation, pattern recognition and adaptation. They represent expertise that doesn't come with a certificate or professional license, but is no less valuable.

🌏 The Beautiful Contradiction

There's a phrase that resonates deeply with many parents: "I wouldn't change you for anything, but I would change the world for you."

This sentiment captures the beautiful contradiction at the heart of raising a neurodivergent child. We fiercely embrace who they are while simultaneously fighting for a world that can accommodate them without demanding fundamental change to their being.

But this work of "changing the world" often looks like painfully granular adaptations:

- Creating detailed instructions for how to approach my son during medical examinations

- Developing social stories for new experiences

- Preparing other adults for his specific needs and communication style

- Translating his experiences into language neurotypical systems can understand

- Finding the right moments and environments where communication feels safe for him

It's exhausting. And it often feels like a one-way street. We adapt to their systems, yet there's precious little adaptation coming back our way.

🙉 Finding Listeners

I've realized over the years that what I need most isn't more advice or suggestions for "fixing" my son's newest behaviors. What I need is a team of better listeners—people who understand that sometimes support looks like presence rather than solutions.

This is why online and in-person spaces for parents of neurodivergent children often have an implicit understanding that we each hold expertise about our unique children. We respect the thousands of data points that inform each other's decisions, even when those decisions might look different from our own.

When my son began developing what may be tics or Tourette's symptoms, the most helpful responses weren't suggestions or referrals (though those have their place). The most helpful responses were simple acknowledgments: "That sounds hard. Tell me more about what you're noticing."

These responses honor the expertise gap without trying to fill it with quick fixes or uninformed opinions.

🌉 Bridging the Gap

So where do we go from here? How do we bridge this expertise gap without burning ourselves out in the process?

I'm still figuring this out, but here are some approaches that have helped me:

1. Documentation as advocacy

I've started keeping detailed notes before appointments, including specific examples and timestamps. Videos of new behaviors or concerning episodes provide objective data that's harder to dismiss. This approach shifts the dynamic from "anxious parent reports" to "detailed observer provides evidence."

2. Creating conversation-friendly environments

Whether it's talks in the car, side-by-side on the couch, or late-night chats when the day's pressures have subsided, I've learned to identify when and where my son feels safest sharing his experiences.

3. Setting clear boundaries around advice

When well-meaning friends or family offer unsolicited advice, I've practiced saying: "Thank you for asking/caring. Right now what would help most is [specific form of support]."

4. Finding the rare professionals who get it

They do exist—the doctors, therapists, and educators who understand neurodivergence not just academically but intuitively. When you find them, keep them close.

5. Creating community with other expert parents

There's profound validation in sharing space with others who understand the weight and worth of your specialized knowledge, while still honoring that each child's journey is unique.

6. Honoring your own expertise

Perhaps most importantly, I'm learning to trust my own observations and insights, even when they don't align with professional opinions or the experiences of others—even other parents of neurodivergent children.

💡The Expertise We Didn't Ask For

None of us asked to become experts in navigating complex neurological conditions, sensory processing challenges, or specialized behavioral approaches. This expertise was thrust upon us by circumstance and love—the fierce, determined love that drives us to understand our children as they are, not as others expect them to be.

My son deserves a world that sees him more fully. And while I continue working to create that world for him, I'm also working to create spaces where our parental expertise is honored rather than dismissed.

Because the truth is, credentials matter. But they're not the only form of expertise that deserves respect.

Have you experienced this expertise gap in your own journey? How do you navigate the space between intimate knowledge and clinical credentials? I'd love to hear your stories and strategies.

Here's to all of us expert parents,

P.S. This Brandi Carlile song beautifully captures the reciprocal expertise that flows between my son and me - how we carry each other through difficult moments and how we support one another. In our journey through the expertise gap, I'm constantly reminded that my son is teaching me as much as I'm teaching him, and together we're navigating paths that no credential could fully prepare anyone to navigate.

A Gift for You

Speaking of a community of listeners and parents on the autism path that “get it” … I'd like to gift a free month inside our Autism Roadmaps community for anyone who needs this kind of support! Find out more here: https://www.ariellerubinmd.com/community

Use my special code KATGIFT by clicking this link, here.

How do you navigate situations where your expertise as a parent is overlooked or dismissed? Share your experiences with our Glimmer Nest community.

I'd also love to hear about the gentle ways you've found to communicate with your child that professionals might never have suggested. What environments or approaches help your child open up most freely?

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