Tag: Autism

An open letter: To the parent who denies my Autism

An open letter: To the parent who denies my Autism

All that you deny in an Autistic adult, from the presentation of their Autism to their diagnosis itself, is what so many of you long to see in your children…so why do you expend the unnecessary amount of energy attempting to dismiss the very real 

Who will water the roses when I am gone?

Who will water the roses when I am gone?

As I sat in this clinic waiting room, my mind raced…then it wandered. There weren’t enough seats in this large waiting room. The olive colored walls clashed with the purple cloth chairs and wooden armrests. It’s walls reminded me of my bedroom in high school 

The Autism Community is not home for my Autistic self.

The Autism Community is not home for my Autistic self.

There’s so many bodies in this space. This tiny 2bdrm rental with it’s one bathroom. It was built in the 80s and while the owners tried to impart modern features such as warm beige walls, wood blinds, and sleek light fixtures, they left the appliances and cabinets of its era. The light in its small galley kitchen is of the commercial variety. Y’know, the ones you find in the school cafeterias. The tile in the kitchen is more “peel” than “stick,” revealing what was once beneath. The original floor of this dwelling’s infancy.

The layout is dysfunctional, as I find most older homes to be. There are walls where there shouldn’t be walls but they serve a primary function to the home. Walls weren’t just walls. Here, there’s this monstrosity of a wall that makes this tiny space maze-like. It houses the water heater and small closet. I’m sure it holds the ceiling up as well. 

Nothing about this place is home. It’s walls won’t hold memories. It won’t carry our history. It’s not strong enough to build a deep enough connection to do so. This place is just another stop on our way to somewhere else. We won’t leave our imprint here. It’s cold and unwelcoming. I don’t like it here. Roots won’t take hold here. This home won’t sustain life. 

I’m obsessed with home and place and belonging. This isn’t just a matter of the mind, it’s physical too. I live in a cold home I do not like within a city I cannot stand to spend another day. Deliberate strangers in a city we have called home for two years. We have no desire to seed and take root here. This isn’t home. 

It’s amazing how much we learn of home once we no longer live there. The farther life takes us from our initial place, the more we seem to know about home. Or the more we seem to know about what we want our home to be.  

A young “Papaw.” I wish I knew what country he was in when this was taken. I cannot remember. Wherever he was, it was because of the Army.

My family is from Alabama. My mother, 54 years young, was born on the “colored” side of the hospital there. My great-great grandmother had no recollection of how old she was because they didn’t provide those like her with a birth certificate. My grandmother had to estimate her grandmother’s age from Census records. Her birthday would come ‘round each year, and we wouldn’t know. My grandfather was drafted into a war to fight under a flag coveted by those who would call him “nigger” when he came home. My family fought too much in Alabama. For everything. For their lives. For their freedoms. For their humanity. Still, Alabama was home. 

I’m a Texan because my great-grandfather’s journey with an Army he didn’t voluntarily sign up for led him and his family here. With my great-great grandmother at the head, we had six generations at one time here. The bulk of our family remained in Alabama. We would visit from time to time. My grandparents preferred Texas to Alabama. Texas was all I knew. They were here over four decades. As far as I was concerned, Texas was their home too. Or so I thought. As each of them passed, we made that drive down I-20 to Alabama to lay them to rest. One by one, we made that drive. 

I thought for sure my grandma, my best friend, would want to be laid to rest here. Her WHOLE life was here, and most of her life was spent outside of Alabama. But…she wanted to go home. Home was Alabama. I didn’t understand. Not then. It angered me. “This is her home! She loved it here more!” I would shout within myself. But she chose to be laid to rest in Alabama. That was her wish. And choosing where one wants to return to the Earth is just as important as choosing where you want to live. 

Texas was where they lived, but home was Alabama. They wanted to return to the land of their childhoods. They wanted the landscape of their youth. I could see the memories flicker in the eyes of my grandmother as she told me stories of her upbringing. Alabama was the source of great pain and terror, but it was also full of promise and possibility. Her initial sense of identity was first molded in the fields of her Alabama youth. 

My grandma, “Biggie,” with a very young Jojo (around 2 or 3 years old). We were in Alabama for a family reunion.

I have a complicated relationship with memories. They serve as placeholders for the moments of our lives. From the most minor, seemingly insignificant to the most impactful. Home is always found there. As is our being. Trauma often lives within memories, however death does not.. I find my grandparents through remembrance. I found my place through revisiting my past and using them as a guide to recommit myself to where I presently am. 

I share my grandparents and their decision to return home after their passing because their deaths, one after the next, drove me deeper into wanting to find a place for myself. Not only a physical space, but a place of being, belonging. Every single trip we made down that highway to lay them to rest, angered me. I didn’t understand home though. I didn’t understand place. I didn’t understand belonging. After four-plus decades of living as Texans, Alabama was home because the memories they had of those fields sustained them. 

I share their stories of racial oppression because I guess a part of me wants you to understand why I felt anger that they would want to go back there. Surely you would understand my confusion as to why this place would still be home? The answer lies in memories. Mine and theirs. Mine because they are memories of them, and theirs because it’s their memories of home that they were sharing with me. As much as my grandmother wanted to be free from the racism that plagued her everyday life, she still very much loved her beloved Alabama. I could hear both the pain and the pride in her voice as she told her stories. Her sense of self and belonging were tied to nature. The power of our natural world is strong enough to erase the racism that infects her cities and towns. At least for the time one is connected to it. Racism governed her life and nature freed her, allowing her to explore freedom. 

From the time I was old enough to ask for stories until the time of my grandparents’ passing, they no longer physically lived in Alabama, but they often spoke of it as if they had never left. I didn’t think much of this at the time, I loved hearing stories, but I understand now. The longer they lived as Texans, the more Alabamian they became. The more aware they were of the fact they weren’t really from here. That’s what being away from home will do to you. Their very conscious decision to refrain from returning home changed their perceptions of Alabama. What they thought they knew of home, only became more clear when they no longer lived there. They knew they sounded different from those who were born here. They carried the accent of Alabama slaves on their tongue. And when they didn’t want to be called out for not being a native Texan, they dropped this somewhat lazy southern Black accent in favor of a more forceful Texan vernacular. 

As I search my memories of my grandparents’, I learn that they never really felt Texas was home, but rather a place they just happened to live. Home and belonging isn’t tied in a geographical location. What is a home? What is a community? How do we know that we truly belong somewhere? And that is what I attempt to answer here. I share this story of my grandparents because I feel that it’s necessary background to understanding how important the overall concept of home….and community is to me. Geographically, I’m home. The overall disabled community? Sure, perhaps. But what I really want is to feel as though I belong within the community that means so much to myself and my family. The Autism Community.

Papaw and Biggie, two of my most favorite humans ever. This was Biggie’s Hawaiian themed birthday party.

Am I home? Will I ever find a home within this Autism community? This isn’t a home I would love to call home. I do not belong. I learned of the importance of my lack of placement within this community only recently. Up until then I felt as though it was normal that I couldn’t fit myself whole here. That’s to be expected when dealing with multiple identities, right? I further justified the breaks in my identity by telling myself this community was too fractured to provide safe space for any one individual let alone hold shelter for several. As it stands, I pulled myself apart to belong here and that’s an incredible, unsustainable feat. One I no longer chose to do. All of what makes me who I am deserves a home. 

A community. 

Belonging. 

I stepped away from the Autism community. I needed to. I could no longer exist in this space as a piece of myself. The more removed I was, the more I began to see what I wanted in my very own community. Being on the outside afforded me the opportunity to learn more about myself. I wasn’t who others wanted me to be, or told me to be. I was me. In all my identities, loving, learning, and enjoying who I was. I know what I want. I know what I am looking for. And I cannot find home within a community that insists on advocating from a center that barely represents even a fraction of myself.   

My work focuses on helping people to be more intersectional in their advocacy, but to also find a home here. My hope is that one day this will be a community worthy of all of our beautiful voices, living as openly and as freely as we choose to be. Home needn’t be a physical place. You don’t even need to understand why someone finds a home where you wouldn’t think they could, or should. I ascribed Texas as home to my grandparents and then grew angry when they went another direction. 

You are responsible for yourself, no one else. Allow others the space to discover who they are and to find their place. Too many have told me it isn’t possible to have the community that I am looking to build here. My messaging will be “too convoluted.” Too “cluttered.” There’s “too much going on and we are stronger if we focus on one thing that will impact the group.”

But no.

The community we currently have is not working for me. I don’t feel comfortable here. And I don’t feel safe. I am already building what I want. I hope that through my work you will decide that you want to be here too. To be part of a community that celebrates the diversity of its members and works the hardest to help those of us who need it most.