Who Gets to Define Neurodivergence?

What stimming, clinical language, and racialized gatekeeping can teach us about belonging.

I recently posted a video of myself taking a stim break and received a comment stating that scheduled breaks to dance aren’t stimming. I was bouncing, jumping, and dancing around my office. This type of feedback stood out to me, not because I need everyone to agree with how I describe my experience, but because it opened up a much bigger conversation about who gets to define neurodivergence.

Stimming is commonly used to describe repetitive movements, sounds, or other behaviors that can serve sensory, emotional, or regulatory purposes. It can include pacing, rocking, scratching, humming, flapping, bouncing, dancing, and singing. The experience is not identical for everyone.

For me, dancing and bouncing can absolutely be part of that. I also have stims that are physically painful. One of the reasons I build movement into my day is because I am learning how to support my nervous system before I reach a point where I need more harmful forms of regulation.

A scheduled break does not make a behavior less meaningful. We can intentionally build movement, sensory input, rest, and other forms of regulation into our day. Planning support is not the opposite of needing support. But I think the deeper issue is what happens when clinical terminology becomes the only language we recognize as legitimate.

Clinical language is useful. It is not the whole story.

Clinical terminology can help people communicate with providers, access accommodations, and understand patterns in their experiences. But many people learn about their bodies long before they have access to a diagnosis. They may recognize that certain environments are overwhelming, that social interaction is exhausting, or that movement helps them feel more grounded without having the language to explain why.

Black and Brown communities have also developed generations of practices rooted in movement, music, singing, spirituality, storytelling, and collective care. These practices can hold joy, connection, expression, and regulation. They did not begin with clinical terminology.

That does not mean every cultural practice is a stim. It means our understanding of regulation and wellbeing has never belonged exclusively to a medical system. When we treat clinical language as the only legitimate way to describe an experience, we risk dismissing people who have been living that experience without access to the same diagnostic pathways.

The diagnosis gap is also a belonging gap.

Many Black and Brown neurodivergent people grow up without being recognized as autistic or ADHD. Some are never assessed. Others are told they do not “look” autistic or that their experiences do not fit the picture someone has learned to recognize. That can delay diagnosis, accommodations, self-understanding, and access to community. It can also create a difficult relationship with language.

When you discover a term that finally helps explain your experience, you may still be learning how to use it. You may not have had the opportunity to learn the terminology as a child. You may be connecting clinical language to cultural practices and experiences that existed long before you had a name for them. That does not make your experience less real.

And it does not mean someone else gets to decide that you are not allowed to use a term because your explanation does not match their preferred interpretation. This matters in the workplace, too.

The same gatekeeping can show up at work.

A Black or Brown neurodivergent employee might say:

• “I need a different way to process this information.”

• “That meeting was more draining than you realize.”

• “I need a break before I can continue.”

• “I need more time to respond.”

• “This environment is overwhelming.”

• “I need an accommodation.”

And instead of being met with curiosity, they may be asked to prove that their experience is legitimate.

Sometimes the question is whether they have a diagnosis. Sometimes it is whether they “seem” autistic. Sometimes it is whether their behavior matches what a manager, colleague, or HR professional expects neurodivergence to look like.

The result is the same: the person has to spend additional energy proving an experience that is already affecting their ability to work. That is not belonging. Belonging does not mean everyone has to understand your experience perfectly before they treat you with care. It means people are willing to listen, make room, and recognize that their understanding is not the limit of what is possible.

We can make room for more than one experience.

I am not claiming that every dance is a stim. I am saying that dancing can be a stim, and I know what it is doing for me. I am also not claiming that clinical language is unimportant. I am saying that it should not become a weapon for dismissing people who describe their own lives differently.

We can acknowledge that stimming looks different for different people. We can recognize that some stims are harmful and others are not. We can understand that regulation can be planned. And we can make room for cultural practices and lived experiences that do not fit neatly into a clinical explanation.

The question is not whether every person uses the same language. The question is whether we are willing to listen when someone tells us what their experience means. Because Black and Brown neurodivergent people deserve more than recognition after we have learned how to explain ourselves in the “right” way. We deserve care, accommodations, grace, and belonging while we are still figuring it out.

And sometimes, that belonging looks like being allowed to dance.

About the Author: Shannen Garza Hakim is a Systems Designer, Social Entrepreneur, and Belonging Advocate. Through SGH & Co., she helps mission-driven organizations build sustainable infrastructure, strengthen programs, and create systems rooted in belonging.