I am Autistic but I am not Actually Autistic
I am a mom to children within this diagnosis but I am not an Autism Mom
Many have never had to converse with a child who has been told they are harming a community for how they choose to see themselves…and it shows.
“You are fine the way you are but you should really think about how you define yourself because it hurts people.” Over and over I have read something like this over the last few days. Someone who swears that they are “okay” if someone identifies person-first, but then follows it up with some backhanded jab letting me know that they aren’t actually okay and this is yet another tactic deployed to shame people into feeling something outside of what they actually feel. The influence of following the herd. If this is you, then no, you are not fine with the way he is.
And many don’t even hit you with a passive aggressive barb, they just come right out and state how you feel about you is no good to the group. “You. Are. Dangerous,” they say.
Dangerous to whom? How I perceive myself shouldn’t be put to vote nor carry the weight of a community that doesn’t often acknowledge our existence within this diagnosis. I have a hard time finding myself feeling shame and blame for how I view myself. Because how I see me, don’t have anything to do with them.
That’s what so many are really trying to push onto my child. Shame will not reside within my son at the hands of another who cannot understand that for many of us, ableism is secondary to much of what we experience.
He is thirteen. Barely a teenager. He is not actively carrying the weight of this community on his shoulders. He is not battling Autism Speaks. He doesn’t know what an Autism Mom is per y’all descriptions. He doesn’t want to rid himself of his Autism.
He is self aware and he wants to be more than Autism in part because he is treated as more than Autism. And when people argue that one can be Autistic and that doesn’t negate their experiences as other things, I agree. But I also agree that taking on an identity as big as this one and being centered so heavily within it can feel as though this is all you are. Especially in these internet streets that honestly, don’t really mirror real life for me. I am more Autistic online and have Autism offline. Because my circumstances and situations are different in each space. The consequences of whatever I choose are different. Who I am surrounded by is different. I am engulfed in Autistic-ness online, offline, I am not even surrounded by other Black people. I am in a tiny town in west Texas combating more racism than ableism. I carry Autism often.
As I stated in the post that sparked a whole lot of mess and inspired this essay is that identity is comprised of our values, experiences, histories, memories, relationships, and the roles we carry. It is influenced by so much. And that post was an explanation in how someone like myself and my son arrives at the conclusion to carry both identifiers (for myself) or be centered in their personhood over their diagnosis when it comes to my son. It detailed how one forms identity. It talked about not falling in line with those who deny our right to choose what is best for us. It took direct aim at those who felt it necessary to bully others, to hurt others, to offend others all in the name of preservation and protection of community.
Are my son and I not part of this community?
We should be, but we are not. This was a decision that was determined long before I tried to find home here. And when I learned this was not for us. I set out to create my own.
I am Autistic but I am not Actually Autistic.
I stopped listening to a community that didn’t value me nor my experiences.
I gave breath to an existence here amongst those who used to shush me as if I didn’t know my tongue.
I stand tall on wobbly feet that are still trying to find their footing in a world that would rather I take steps in their direction, at that direction, than heed my own. and I hope to inspire others to do the same. But if they ain’t ready, I will carry their stories with my own, cause fear of standing in my truth ain’t something that resides within me anymore.
If you have a community and its members are scared to speak their truth, then you have no community.
The harm many claim we push onto others because of how we identify is predicated upon what those outside of this community might do. They might view Autism as a disease. They might want to cure it. They might deny one access to this world. Thing is, they do this even when acknowledging identity first. There are parents who refer to their children as Autistic and still push for cures. Disability is both feared and pitied, regardless of what we refer to ourselves within our diagnoses, life will forever be complicated, challenging, and harmful.
Person-first came to be because of intellectually disabled individuals who wanted to be seen as more than their diagnosis. They were the sum of their experiences, same as all people. This is what they settled on. And it is valid. Autistic persons might feel as though they are completely one with their Autism and nothing can separate the Autism from themselves. And that is valid as well.
So many diagnoses that are neurodevelopmental or affect the brain and everyone should be afforded the right to decide what is best for them. My mama has multiple sclerosis, she is not her multiple sclerosis. My son also carries a diagnosis of Intellectual Disability but he is not his Intellectual Disability. He is more. He will always be more. I have ADHD, I don’t care for being an ADHDer. People should be allowed to figure out who they are within their diagnosis. They are owed the right to do so. Harm is when we assume to know their desires, when we dismiss their experiences, when we apply the pressure to exist as others do and then state that to deviate from this “norm” is to harm the rest.
This is harmful and before you come for a child, sit back, think about what the hell you are doing, and then fall back.
He is thirteen years young and has been harmed far more than most can imagine for more than his Autism and too many think that this should be a primary identity for him. Sometimes, it is. Sometimes, it ain’t. He weaves in and out of what he finds to be dominant. Of the most harm that has come to his person, Autism was secondary. Autism didn’t invite harm his way, his skin did, but having this diagnosis didn’t help when the harm arrived.
And still he chooses to center himself in the things that have sometimes brought him the greatest pain. Those things outside of Autism. Because he finds beauty in them. Because he loves how they make him feel. Because it’s what he sees when he looks at himself, what he thinks of himself. Because culture is important to him. The ones who have shaped him the most, look and act like him.
His decision has nothing to do with me. Or anyone else.
I tell him about what other people think. What others feel that we should be. Tell him of these majorities that’s often cited here. I give him the lists. The graphics. Read the posts. He knows the reasons. How could he not? He will one day be governed by another’s activism, cognizant that his life is peripheral to theirs.
And still, knowing all of this…he chooses to center his identity within himself. Who he chooses to be.
He is brave.
Because he knows you will blame him for the troubles that come to this community. Because he knows that you cast him as an obstacle to this community’s progression. Because he knows that one day his grievances will not matter here.
And still, he chooses to remain firm in his decision to be known by name first. And then diagnosis.
The courage he has when he reads your words that tell him he is hurting you for being him…I don’t know how he does it. I am sitting in anger, eyes stinging from tears that I won’t dare let fall in front of him, and still, he chooses to be who he wants to be.
They will ascribe to him what they don’t dare put on themselves.
My son is not going to shoulder the pain of this community because it has been hurt. He holds his own hurt.
And while his identity is not something I can control, I will do my best to ensure he does not allow himself to be defined by those who deny him his place within this community. In fact, I do my best to shield him from much of this community.
It doesn’t deserve him.
Never has.
And so I decided to build what I didn’t see. Based on things outside of what we choose to be. Centered on our diversity of experiences. Focused on helping one another and not being pulled apart by something so delicate, beautiful, and personal as identity.
I have Autism and I am Autistic, but I am not Actually Autistic.
I am a mother. And I am Autistic. I have Autism. And I am no Autism Mom.
These groups carry with them the weight and expectation to behave in manners inconsistent with my being. So I distance myself from each and focus my energy elsewhere.
Would someone withhold their support and care for someone because they identify outside of what you deem appropriate?
Honestly, from the way many of these conversations here go off the rails because someone said “has Autism” I would say that yes, someone would. Many someones would.
The way my son is attacked for being who he wants to be, I would say, yes, someone would. I have read some of the most awful things about him. And myself. I am teaching him to hurt others. I am hurting others. One day, “I will learn better.”
My son ain’t an advocate. He ain’t lookin for a cure. He ain’t looking for an organization to speak for him, about him, over him, etc.
He is looking for a friend. Someone who will see him for the beautiful person that he is and the amazing person he will grow to be.
If you hold the perspective of those who attack my son, don’t worry about ”saving my son,” his mama and daddy got him. This is a child you don’t even have to worry about. A child y’all didn’t worry about in the first place.
I am working to create a collective of volunteers that would moderate social media posts that would expend a lot of energy from a multiply marginalized creator. So often we feel alone in these attacks. We are often put into positions in which we have to respond. I felt as though I had no choice but to give into several people who felt it necessary to attack me. And I am left wondering if I would have even been supported if I had chosen not to?
This collective would review harm posts and comments and someone (or two) would elect to educate that person on the harm they are causing and to challenge their thinking. It is laborious for us to exist in these spaces, this would take the load off of so many creators. This is an idea that was brought to me by my patrons. And Patreon is where I am going to spend most of my time creating this collective, bouncing ideas off of Patrons and putting it all together. If you would like to join us in this endeavor, you are more than welcome to do so. Subscription to my Patreon is donation based starting at $1/month.