I am Autistic...And I also have Autism

I be...and I have.

Photo by Brett Jordan on Unsplash

Most of the time, I am Autistic. My son has Autism. My other son, Autistic. And has Autism.

I am Autistic and depending on the day, my mood, my situations, etc. I will have Autism. 

And I don’t give one singular darn what another has to say about that. 

The thing about identity is that it’s highly individual. It’s personal. It ain’t got to make one lick of sense to you, as long as it makes sense to me. Stop trying to rationalize a decision that ain’t got nothing to do with you. Who I am won’t be rational to you, and that’s fine.

Our identity is, in part, made up of how others perceive us and how they will ultimately treat us. 

In other words, I control who I am and what I go by and what I choose is also influenced by this world, my histories, my circumstances, and my experiences. 

Identity encompasses our values, experiences, relationships, and memories. All of this creates our sense of self, who we are over time. And who I am today may not be who I am tomorrow. 

I will not be bound by your “majority prefers” exclusionary perspectives that center privileges I don’t know a damn thing about and will never know a thing about. We live in a world governed by majority perspectives and y’all running to the front of the line to do the same to others. 

This is a “community” that doesn’t know how to be a community. Because you think that in order to belong to a collective, we must all move in tandem. We must abandon personhood for a home here. 

I will do no such thing.

Especially not for those who think cutesy graphics of stick figures with handbags to represent “having Autism” serves as the nail to the identity coffin. And damn sure not for those who erroneously claim that person-first identifiers sit with trauma, cause trauma, and are packed full of internal ableism.

The audacity y’all are pumped full of…

That’s ridiculous coming from people who have a difficult time understanding that to determine that another doesn’t possess the capability to discern their own life and experiences and come to the conclusion that they would rather be known by name then diagnosis is rife with ableism itself. It’s especially ridiculous coming from those who claim that “to have Autism is to treat it like a bag one carries” when they so often throw Autism over their shoulder like a Coach purse depending on certain situations. When so many are free in their Autistic-ness online but keep it to themselves at work, school, with family or friends because they worry about how they’ll be perceived because of it, you carry Autism. Every single time you mask, you carry Autism. 

Doesn’t make you any less Autistic. And this doesn’t mean that every single person who chooses to “have Autism” has their decision based solely on the ableism they may face or carry. Not every decision to identify person-first is to mitigate the harm that comes their way. You being Autistic doesn’t rid yourself of the external harm nor internal ableism. 

You sit in these spaces atop of perches of inequity espousing privileges everyone does not have and you tell us, “you’re doing it wrong,” “you need to stop, “you’re hurting others.” Not once stopping to think that how another experiences disability, no, the entirety of their lives, differs from yours.

“You’re full of internalized ableism.” I will be damned if you sit there and attempt to diagnose me and my son. Get out of here with all of that.

You bolster your arguments with claims of “majority prefers” and “most” and find yourself okay with excluding the many who do not feel as you do. Nah, they don’t matter much. WE don’t matter much. And you don’t grasp that part of the reason this “community” ain’t a community is due to you. Part of the reason many are leaving the Actually Autistic “comm-” is because of you. Deal with that in whatever way you need to. I make no apologies for speaking my truth.

I am not just disabled. Autistic is not my primary identity. For many of you, it appears as though it is. And perhaps, you haven’t felt as though you were taken seriously in this identity? Perhaps you feel as though you have been overlooked in this identity or not expressive enough and this is part of your “living firm in who you are”? Perhaps you feel it covers your entire being, influencing all?

I dig it. I get it.

But Autism isn’t the identity that will carry the most influence in my life. It’s not the one that will carry the most weight, even though it carries a lot. And if I am being honest, the only time that Autism will carry more than Black is when I am in wholly Black spaces. And even then, it feels like they break even. 

This “community” will want to tell me it’s inclusive and prove time and time again it is not. Even here, Black is primary. I am shown constantly that we are not valued here, we are not listened to here, we are dismissed, we are not heard, we are not amplified, we are not seen…

We have to purposefully inject ourselves into these spaces. We have to constantly inform this community of the harm it causes us. We have to remind this community that we exist. We have to teach this community what hurts us, where it hurts, and how to heal the hurt it causes.

I find myself many days wondering why any of us identifies as Autistic. Or at least Autistic in relation to these online spaces. My being Autistic has nothing to do with this community. I am not part of the Actually Autistic community. I ride outside those lines. With others who do the same. A growing number of those who do the same.

I have no desire to actively, determinately sit firmly in my Autism. Not at all times. I cannot rid myself of this diagnosis. It matters not that I HAVE Autism or BE Autism. This is a diagnosis that I claim. In the way that I feel most appropriate to me, based upon a variety of factors to include: 

• how I perceive myself with this diagnosis in relation to the other roles I claim

• how it impacts the relationships I cultivate fit within my life and who I am. The relationships I have with others and they with me

• how external characteristics that I have no control over impact how I see myself. This would include race, something I have no control over, but something that controls so much

• how the world sees me in this diagnosis and how it will treat me because of it

• how my experiences have shaped my relationship to this particular identity

We are all subject to the perceptions dominant culture places upon us. Whether you choose an identity that aligns more with what is common or you choose one that deviates as far as you can from it, you have internalized the values that dominant culture has and built an identity from it. I take all that I know, all that I believe, combine it with what society believes to be true, how it will ultimately treat me, and I craft an identity that works FOR me. 

My son does the same.

I do not have the luxury of being completely free in this diagnosis. And neither do my sons. But this is not the sole reason for my not wanting to be defined by a diagnosis in a way that so many of you attempt to bully others into. Honestly, I have been less turned on by how Autistic feels in these spaces. It feels fixed. Final. Like there’s nothing else I can be. Like this is all I can be. I don’t like your boxes. 

And you will feel differently. You will argue that you are everything else you claim in addition to being Autistic, that doesn’t take away from that. 

And I will tell you, good for you. I respect and honor your decision and the path you took to land here. But you are not I, and I am not you. Your perception of self is your own. And mine is my own. I reserve the right to weave in and out, around and about all that I am, claiming what I want, discarding what I won’t…and using every bit of everything to aid me in my decision. 

This isn’t something you can touch. This isn’t something you will touch. 

I will have Autism because that is what I chose. Through an intense process that is my own. Through experiences that are my own. Through situations I have navigated on my own. Through values that are my own. 

And I will be Autistic because of the same. 

I swear this ain’t the hill I am going to choose to die on. Y’all do that. Y’all ARE ALREADY DOING THAT. There’s some monster fish out here and y’all choosing to fry minnows. 

I am not even going to talk about what inspired this post because the rest of this would be a string of cusswords. 

I would like to give a big thank you to those of you who have respected my son’s wishes and referred to him person-first while referring to me as Autistic. I appreciate the effort to make him feel more welcome and supported. This means more than you know.

To those of you who have the most difficult time understanding why my child nor anyone else will never answer to you for how they identify…

deal. Or don’t.

What you eat don’t make me sh*t.

A note about what this piece is not:

-an invitation for you to state that y’all don’t like it when Allistic folks try to tell you how to identify but you are good on those to choose how they identify. This ain’t about Allistic folks, and way too many will find a way to insert them into conversations I am not having. This is about a specific group of people, period.

-the time to talk about you just follow what most prefer. I am not most. Not when it comes to something as personal as this. No. Also, I didn’t get an invitation to the vote. You will not use majority perspectives to invalidate how others choose to identify.

-open for your pairing with whatever offensive identifier you can think of and then be like, “so are we to be okay with Aspergers?” this really ain’t what this piece is about and you know it. your whataboutisms will not derail this conversation. This is specifically about “Autistic” vs. “having Autism.” PERIOD.

*NOTE: it should go without saying that all references of “you,” “y’all,” etc. is general. If it don’t apply, let it fly. If you don’t wear these shoes, don’t put them on.