♿ Session 18: Undiagnosed ≠ Undeserving

🌿 Transformative Education for Neurodivergent Liberation

"I knew myself long before the paperwork. This is what self-trust looks like."

“Access is not about making everything available to everyone at all times; it is about building flexible systems that value and support people’s needs.”
— Sami Schalk, Bodyminds Reimagined

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📌 If you’re just joining us, I recommend reading [Session 1 – Why I’m Leading This Workshop (My Positionality)] for shared agreements and to understand how this space is held.

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📘 When You Know Before the System Does

Before diagnosis, I already knew.

I had been living inside this mind my whole life—feeling the world intensely, processing information quickly, struggling to make sense of what others seemed to do effortlessly. I had the language of giftedness and 2E—but it wasn’t enough. Not in the workplace. Not when systems demand “proof” before they’ll listen.

A month into my role at the Behavioral Health Authority, I wrote an email to my boss. I didn’t yet have the clinical paperwork, but I had decades of lived experience and years of reflection. I explained the way I process sound, light, tone. The way my brain skips ahead and tangents. I shared that I thrive in written communication. That large group meetings leave me overwhelmed. That I learn quickly, but need structure. That my experiences as a twice-exceptional person, often misunderstood and unsupported, had shaped the way I move through the world.

“Though there are challenges, I also bring a lot of value to an organization. I understand complexity and can process large amounts of information quickly and make connections that most others are eluded to.”

I was trying to build trust. I was trying to prevent the inevitable spiral of misunderstanding. I even included research and links. I offered solutions. I shared openly, hoping to be met with reciprocity.

But I wasn’t believed. Not really.

Instead, I was met with microaggressions, confusion, and indirect pushback about my communication style. I was told my language “sounded like I was assuming the role of an expert.” I was asked to tone down, slow down, play smaller. I was perceived as arrogant when I was actually trying to prevent harm—trying to survive.

🧾 Diagnosis as Strategy—and Shield

So I made a choice. I didn’t even tell my therapist. I protected the process.

I knew I was autistic. I had done the research. I had been tracking the patterns. I had already lived the truth of it.

But I knew I needed to make it “official.” I was seeking workplace accommodations—naively hoping that diagnosis would unlock the understanding I hadn’t been able to secure on my own. I wanted to be seen.

And in some ways, I was lucky.

I live in a progressive state. My assessor was autistic herself. The evaluation was conducted with care, affirmation, and without deficit language. She saw me. Not just the traits, but the story. The truth behind the masking. The ways I’d built a life that worked around my needs while trying to fit a world that wasn’t built for them.

The diagnostic report reflected that. It acknowledged both my strengths and my challenges. It named my intensity, my insight, my executive functioning struggles, my sensory sensitivity. It gave me what I needed to “qualify”—on paper.

But here’s the part no one tells you:

Diagnosis doesn’t guarantee support.

In fact, the ableism I experienced after diagnosis was often more overt than before. People now felt entitled to tell me how autistic I “really” was—or wasn’t. They questioned my needs. They explained me to me. The diagnosis didn’t open doors—it added locks.

Because the truth is, in many systems, diagnosis is less about understanding—and more about control.

🚫 When Self-Knowing Is Dismissed

What hurt the most wasn’t the lack of accommodations. It was the subtle gaslighting. The idea that unless my traits fit their image of “Autistic,” I was just being difficult. Or dramatic. Or too much.

Before the paperwork, I was seen as intense but undefined.

After the paperwork, I was seen as diagnosed—but still disbelieved.

This is why undiagnosed does not mean undeserving.

If you’ve had to fight to name your own experience…

If you’ve ever been told that you’re wrong about what you need…

If you’ve walked into a workplace hopeful, vulnerable, honest—and been met with silence or suspicion…

You are not alone.

Diagnosis might offer language. But it doesn’t create legitimacy. That comes from within.

And the systems that refuse to recognize that? They’re not broken—they’re built that way.

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🧠 Diagnosis is a Gate—Not a Guarantee

For many of us, especially those multiply marginalized, the road to diagnosis is long, costly, and often impossible.

📌 It requires access to:

• Providers trained in neurodivergence

• Financial stability or good insurance

• Cultural fluency in how to “present” your traits

• Environments safe enough to unmask

And even when all those stars align, diagnosis doesn’t always deliver what we hope.
It can offer language—but also stigma.
It can offer clarity—but also scrutiny.
It can offer validation—but also conditional belonging.

We live in a world where the system demands proof before it provides support.
But what if the support is the proof?
What if someone simply knowing themselves is enough?

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🌿 Self-Knowing is Not Less Valid—It’s Often More Liberating

There are people in this community who will never receive a formal diagnosis.

Not because they aren’t autistic, or ADHD, or otherwise neurodivergent—
But because they live in bodies, identities, and realities that the system doesn’t see as credible.

🛑 Black and Indigenous people are underdiagnosed.
🛑 Poor people are pathologized but not resourced.
🛑 Women, nonbinary folks, and queer people are misread.
🛑 Immigrants and multilingual people are evaluated through biased, western-centric lenses.

And still—we find each other.
We build language in community.
We unmask in private.
We map our truths without a gatekeeper.

That knowing is real.
That knowing is enough.

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💬 Real-World Reflection: The Harm of Proving Yourself

Let’s name what happens when the system doesn’t believe you:

• You overexplain.

• You overextend.

• You make yourself palatable.

• You carry shame for not having a “label.”

• Or worse—you get the label, and they still don’t listen.

And still—we rise.
We adapt.
We listen inward.
We co-regulate outside the systems that refused us.

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🧠 The Cognitive Ecology Model Doesn’t Ask “Where’s Your Diagnosis?”

It asks:

• What shaped your sense of self?

• What systems made you question it?

• What experiences validate your knowing?

• What care would feel possible if you never had to prove it again?

In the CEM, legitimacy is not handed down by clinicians.
It’s recognized in relational coherence—how your internal truths align with your external conditions.

Support is not contingent on paperwork.
It’s emergent. Contextual. Deserved.

Always.

🧭 Living Between Proof and Truth

When you know you're neurodivergent—before anyone else confirms it—it can feel like you're stuck between worlds.

On one side is the inner clarity: the threads you've traced, the patterns you've lived, the ways you've shaped your life to survive.
On the other is the system's skepticism: “Where’s the documentation?” “What’s your support level?” “Are you sure?”

But neurodivergence isn’t a diagnosis—it’s a lived reality. It’s how your brain responds to a room. How your body processes stress. How you navigate complexity, connection, and contradiction. Whether or not a form has been filled out.

Some people will never get formally diagnosed. Cost, access, racism, sexism, classism, and sheer system overwhelm stand in the way. Others—like me—will get diagnosed and still find themselves fighting to be believed.

This is why we have to build cultures that validate self-recognition.

Not everyone needs diagnosis.

But everyone deserves to be understood.

And every system that demands proof of pain before offering care is a system designed to serve itself—not you.

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📝 Reflection Invitation: Who Do You Believe First?

This week, I invite you to reflect on:

• When did you first realize you were different from the norms around you?

• Who believed you? Who didn’t?

• What did you have to prove to be supported—and what did it cost you?

• What would it feel like to trust your knowing without needing permission?

• How can we—together—build systems rooted in presumed competence, not suspicion?

You can write. You can create art. You can scream into the wind.
This is not about performing your story. It’s about reclaiming your truth.

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🌿 Closing Reflection

There are so many ways to be real.
So many paths to truth.

Diagnosis can be a useful tool.
But it is not a requirement for understanding.
And it is not the only way to be seen.

You are not undeserving.
You are not “less than” because your proof is lived and not printed.

You are already whole.
Already worthy.
Already here.

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💫 New Sessions Every Monday & Wednesday

This 12-week journey unfolds twice a week—every Monday and Wednesday—with each session building on the last.

You can view the full session lineup here, and here’s what’s coming next:

✨ Session 19 – How Ableism Shapes All Systems
We’ll unpack how ableism is not just a personal bias—but a systemic architecture. From schools to healthcare to workplace policies, we’ll explore how ableism is built into the foundations of our institutions, and what it means to dismantle it—both around us and within us.

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💬 Share Your Reflections

This space grows through your resonance. Add your voice in the comments or DM if that feels safer.

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💖 Support the Work

This series is freely offered—because healing should not be paywalled.

If you’re in a position to contribute, a paid subscription sustains the work and the mission of The Compassion Collective—a space rooted in justice, mutual care, and deep integration.

Thank you for being here.
With you,
🌿 Shamani of The Compassion Collective