What if Autism Criteria Were Written by Autistic People?

Understanding Autism Criteria for Adults

Most of us who are late-identified/diagnosed didn’t get here because of a checklist. Instead, we get here because something deep inside begins to whisper: This explains everything. Because we find a post, a podcast, or a person who mirrors our experience back to us in a way that nothing else ever has.

Because we’ve spent years trying to figure out why things feel so hard, so loud, so exhausting, especially when we’ve worked so hard to hold it all together.

Then we read the DSM criteria. And somehow… we’re lost again.
 

Why Traditional Autism Criteria Miss So Many Adults

The current diagnostic criteria for autism weren’t written by autistic people. They were created by committees of non-autistic clinicians and researchers, people trying to describe what autism looks like from the outside.

To be fair, they were working with the knowledge available at the time. The earliest definitions of autism were shaped in clinical settings, where autistic children (mostly white, mostly boys, mostly middle class) were brought in for "problematic behaviors." The focus was on difference, dysfunction, and deviation from the norm.

But those roots still show. The DSM's language is clinical, deficit-based, and externalized. It prioritizes what other people observe (external traits), not what we feel or experience internally. Which means the things that often feel the most autistic to us (e.g., sensory overload, empathy floods, burnout from masking) don’t always make the cut. And the things that do? They’re often framed in ways that miss the nuance, don’t capture the whole experience, or pathologize it.

No wonder so many late-identified autistic adults read the criteria and wonder Am I really autistic? or think, Well, I guess I’m not autistic enough.
 

What Autistic-Led Autism Criteria Might Look Like

If autistic adults wrote the criteria…
They’d sound different.
They’d feel different.
They’d reflect the internal experience, not just the external presentation.

They might include things like:

• Has spent a lifetime camouflaging or performing in social spaces, often at a personal cost.

• Has a strong need for predictability, not because of inflexibility, but because the world often feels chaotic and overwhelming.

• Has deep, focused interests that provide a sense of clarity, purpose, or calm.

• Experiences intense empathy and emotional resonance, sometimes to the point of shutdown.

• Finds small talk draining, but can speak passionately about meaningful topics for hours.

• Has been misunderstood, misdiagnosed, or labeled as "too sensitive," "too intense," or "too much."

• Needs time alone to decompress, especially after social interactions or overstimulating environments.

• Feels a fundamental difference from others that’s hard to explain but always present.

None of this is "wrong." It’s just real.
 

Why Lived Experience Matters

When autistic people describe autism, we use different words. Different metaphors. Different priorities.

We talk about burnout. About sensory trauma. About masking as survival. About finally feeling seen when we found the right language. We don’t usually start with "persistent deficits in social communication."

We start with I always felt different, or I thought everyone else had a rulebook I didn’t get, or I didn’t know I was allowed to be myself until now.

We talk about the moment it clicked. We talk about grief, relief, anger, clarity, and the slow unraveling of shame. We talk about community, and what it’s like to finally belong.

We talk about the cost of not being seen sooner. Of being told we were anxious, depressed, oppositional, dramatic, broken, or "just too much." Of wondering for years if maybe we were just lazy, or oversensitive, or bad at life.

There’s a quiet kind of power in reclaiming the narrative. Not just for ourselves, but for the people coming after us.

Want to learn more about how we assess autism in adults?

👉 Explore our adult autism assessment process
 

The Rise of Community-Led Language

The good news? This conversation is already happening.

Autistic adults, especially those who were missed by traditional systems, are creating new frameworks and language for understanding our own experiences.

You see it in blogs and infographics, social media threads, and podcasts. You hear it in phrases like “high-masking,” “double empathy,” “monotropism,” and “autistic burnout.”

You feel it in the shift from “What’s wrong with me?” to “What does my brain need to thrive?”

Autistic advocates, educators, and clinicians are building something more honest, more nuanced, and more compassionate. It’s not perfect, and it doesn’t always agree, but it’s rooted in real life, not just research labs.

This isn’t fringe. This is the future.
 

Beyond the Checklist

This isn’t about throwing out every diagnostic tool or pretending criteria don’t matter. For many people, a diagnosis is validating and necessary. It opens doors. It makes the invisible visible. It helps explain the past and shape the future.

But we can imagine something better.

We can imagine a world where autistic people define what autism means. Where assessments feel more like conversations than interrogations. Where traits are understood in context and not judged in isolation. Where people don’t have to prove they’re struggling just to be believed.

Most of all, we can imagine a world where autistic traits are not just seen as signs of disorder, but as reflections of a beautiful, complex, and valid neurotype.
 

From Misunderstood to Empowered

If you’ve ever read the diagnostic criteria and didn’t see yourself reflected…

If you’ve ever been told “you’re too social,” “too articulate,” or “too successful” to be autistic…

If you’ve ever thought, I don’t fit the mold, so maybe I’m making it up…

Please know: you’re not broken.The criteria are just incomplete.

And if you’ve had to spend years explaining yourself, even to professionals, know that it’s not your job to convince people who never had the right lens in the first place.

What if the people writing the criteria had lived it themselves? What if the “problem” isn’t your traits, but the framework being used to interpret them?

That question alone has power. And maybe, just maybe, it’s the start of writing something new.
 

📍Serving Adults Nationwide

NeuroSpark Health offers affirming, virtual adult autism assessments across the U.S. We specialize in late-identified, high-masking, and misdiagnosed autistic adults.

👉 Get started with an affirming adult autism assessment
 

🔍 Related Reading

• What Happens After an Adult Autism Diagnosis

• Autism in Women and AFAB Adults

• Am I Autistic? Next Steps to Clarity