🔍 Session 4: Diagnosis Is Not the Beginning

🌿 Transformative Education for Neurodivergent Liberation

Apr 21, 2025

"I was already here, held by something ancient and wild, even before I had the words."

“It is no measure of health to be well adjusted to a profoundly sick society.”
— Jiddu Krishnamurti

📌 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.

Diagnosis Is Not the Beginning

So many of us are told that diagnosis is where our story begins.

As if our experience didn’t exist before a professional named it.
As if the system found us, instead of us finding ourselves through grief, exhaustion, trauma, and sheer pattern recognition.

But for many of us, diagnosis isn’t a beginning—it’s an interruption.

It happens in the middle of life, often after harm has already been done.
And while it can bring clarity, it can also bring confusion, gatekeeping, invalidation, or more misdiagnosis layered on top of the old ones.

Diagnosis Isn’t Always a Relief. Sometimes It’s a Reckoning.

For many, diagnosis doesn’t bring immediate relief.
It brings grief. Rage. Disbelief.
A flood of memories that suddenly make sense—and hurt in a whole new way.

You begin to wonder:
How many years did I spend thinking I was broken?
How much of my life was shaped by the absence of this truth?
Who would I have become if I had known sooner?

Diagnosis is not a magic key.
It’s a mirror. One that shows you all the ways the world failed to see you—and all the ways you learned to hide yourself to survive.

For some of us, it was years—decades—before anyone noticed.
By the time we got language for what we were experiencing, we had already internalized the idea that we were the problem.
Too sensitive. Too much. Too scattered. Too intense. Too fragile. Too loud.

We weren’t too anything.
We were unsupported.

Diagnosis Is a Systemic Issue, Not Just a Personal Journey

Who gets diagnosed—and when—isn’t just about symptoms.
It’s about access.
It’s about bias.
It’s about how close your pain is to being palatable.

If you’re white, verbal, educated, and articulate, you may be diagnosed later in life—but still not get believed.
If you’re Black, Brown, Indigenous, poor, gender-expansive, or nonspeaking, your symptoms are often criminalized, pathologized, or ignored altogether.

Autistic girls are misdiagnosed with anxiety.
Autistic boys are punished for “bad behavior.”
Autistic women are prescribed medication for trauma they were never allowed to name.
Autistic elders are told they’re depressed, disordered, or just “not trying hard enough.”

Diagnosis is not neutral.
It reflects the same structures of racism, ableism, patriarchy, and classism that shape everything else.

Some of us got diagnosed because we finally broke down.
Some of us never will—because the system wasn’t built with our story in mind.

Self-Diagnosis Is Not Lesser. It’s Often Survival.

Let’s be clear: self-diagnosis is not a shortcut.
It’s often the only path some of us have.

When access to healthcare is limited, when providers are biased, when our bodies or identities don’t match the diagnostic “template,” we are left to do the work ourselves.
And we do.

We read.
We listen.
We map patterns across our lives.
We find ourselves reflected in the voices of others.
We trust the gut feeling we’ve learned to suppress.

This isn’t denial—it’s discernment.
This isn’t attention-seeking—it’s truth-seeking.
And for many of us, it’s the beginning of actual healing—not because the system helped us, but because we stopped waiting for it.

Self-diagnosis isn’t the absence of rigor.
It’s the presence of courage in the absence of care.

You are not less real.
You are not less valid.
You are not alone.

Diagnosis Doesn’t Erase the Damage. Especially When It Comes Too Late.

For those of us diagnosed late in life, the discovery often comes after something has already broken down:
A massive burnout. A mental health crisis. A collapse in functioning. A relationship rupture. The body saying no more.

We didn’t get diagnosed because we were thriving.
We got diagnosed because we were unraveling.

And by the time that happened, the trauma had already layered itself into our nervous systems.
We had already spent years—or decades—masking so well that even we couldn’t see ourselves clearly.
We adapted until we disappeared.

And when we finally unmasked, the grief was enormous.

Because what diagnosis names doesn’t undo what went unnamed.
It doesn’t fix the damage of living in a world that didn’t accommodate our needs.
It doesn’t repair the years we spent blaming ourselves for not being “stronger,” “quieter,” “easier,” “less.”

Sometimes, diagnosis helps us begin again.
Other times, it shows us just how much we’ve lost.

Both truths can live side by side.

A Personal Note

For me, diagnosis didn’t come with clarity—it came with collapse.

I was diagnosed late. After five burnouts. After two unaliving attempts. After years of alcohol use to quiet a nervous system that was never safe.
I wasn’t given support—I built it, piece by piece, out of the wreckage of what the system never offered.

When I was finally told I was autistic, it didn’t feel like relief.
It felt like grief. Like rage. Like confirmation of everything I’d always known but had no language for.

I thought I was independent because I was intelligent. But I wasn’t independent—I was unsupported.
My whole life had been shaped by needs I didn’t know I was allowed to name.

It wasn’t diagnosis that saved me.
It was truth.
It was self-compassion.
It was unmasking, slowly, until I could see myself clearly enough to say,
"This is what I need—and I’m no longer ashamed of it."

You Are More Than a Diagnosis. But You Also Deserve One That Sees You.

Diagnosis can be clarifying.
It can name what you’ve always known deep down.
It can open doors—to support, to language, to community.

But you are not your diagnosis.
And you are not obligated to make yourself fit into the narrow boxes that diagnostic systems have created.

Because those systems?
They were never built to understand people like us.
They were built to categorize, to pathologize, to control.
And still—we seek meaning within them.
Not because we want labels, but because we want language.
We want to understand ourselves. We want to be seen.

And for many of us, the diagnosis we received doesn’t tell the whole story.
It leaves out trauma.
It flattens identity.
It ignores the systemic conditions that shaped our behavior, our needs, and our coping.

That’s why it’s okay—necessary, even—to go beyond what the system says about you.
To reclaim your truth.
To define your experience on your terms.
To use what serves you, and leave the rest behind.

🧘🏽‍♀️ Reflection Prompt

Take a moment to sit with these questions—not to judge yourself, but to witness yourself more fully:

When did you first begin to wonder that you might be neurodivergent?
How did diagnosis (or the lack of it) shape your self-perception?
What stories were you told about yourself before you had this language?
How are you learning to separate what’s true from what was projected onto you?

Let your answers live in your body. You don’t have to rush them into words.
This work is not about proving anything.
It’s about reclaiming the right to know yourself.

You are allowed to grieve what wasn’t seen.
You are allowed to trust what you’ve always known.
You are allowed to begin exactly where you are.

💫 What’s Next?

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 5 – You Don’t Need to Be Diagnosed to Be Valid
We’ll dive into the legitimacy of self-identification, the harm of gatekeeping, and why lived experience always deserves to be centered—whether or not the system agrees.

👇 Drop a comment if you’d like to be tagged in future sessions, or follow along at your own pace. This space is here for you.

💖 A Note on Support

This work will never live behind a paywall.
It’s here to be accessible, co-created, and shared freely.

If you’re in a position to support it through a paid subscription, please know that it truly helps.
It sustains this series, supports my ongoing work as a neurodivergent creator, and directly contributes to The Compassion Collective—a community rooted in justice, mutual care, and transformative change.

Every share, every comment, every message of resonance helps keep this space alive.

Thank you for walking this path with me.

❤️
Shamani of The Compassion Collective