Blue is the color of my joy. I feel emotions as colors and colors as emotion. Blue is comfort. It is energy without overwhelm. I studied color theory, but it failed to capture my autistic experience. For some things there are no words.
When I was a child I had a daydream. I kept it secret, because I was not supposed to want things, much less grand, beautiful things. I would pull out my 1972 World Book Encyclopedia and look for all the pictures of great landmarks such as the Empire State Building, the Pyramid of Giza, and the Sydney Opera House. Then I would imagine them bathed in vibrant blue light…
There is a progression to my relationship with me.
I was a child, and I hated myself. I was inherently broken yet morally obligated to prove otherwise. I was resented. I was a cross to bear. I was unredeemable. I wished for death, and I was not alone in that wish. Saintly grieving for a child lost was preferable to the day to day of me in all my sickly, time consuming, autistic glory.
But neither of us got our wish.
For all my brushes with death, my body would not die and my brain would not stop grasping for existential justification.
I became a parent, and unconditional love poured out of me. These vulnerable humans were so much their own selves, yet so much like me. They became my justification. Death, while still a possibility, ceased to be a viable choice. I mattered. I still wasn’t a real person, but I filled the needs of real people. The self loathing that previously propelled me forward subsided replaced by this new purpose.
A few years ago, my entire mindset shifted. I am human. I deserve to live, not because I am of use to someone, but because I am alive. I have inherent dignity. I need no justification. It’s disingenuous to say I love or even like myself, but I’m learning.
However, there is a price. The more I accept myself, the angrier I get. The more it hurts. The more I want back the things that were stolen from me like access to education, freedom of movement, control over my own body, and the right to joy. I wrest back what I can.
Which brings me to World Autism Awareness Day, an international effort spearheaded by Autism Speaks, and Light it up Blue. They made this thing that existed only in my mind, this most special childhood fantasy, real, then used it to kick me in the teeth. All over the world people join together in this colossal effort, ignited by a purpose:
To bring about a day where people like me cease to be born.
To spread a message of fear and panic that places me, and others like me, in real danger.
Autism Speaks, you are big and powerful. So far, your Awareness has managed to spread enough fear and misconceptions to make me a pariah in my own neighborhood. You have corrupted the mental refuge that sustained me through untold abuses with your World Autism Awareness Day. But you do not speak for me, and you can not steal my joy.
You can’t have my blue. It’s mine. You can use it for your puzzle pieces, sick little symbols of autism as an affliction, autism as a boys’ club, autism as a thief of humanity. It’s still not yours because you’re using it wrong.
It’s MY blue, so fuck you.
I will keep my joy.
non strobing squishy stim toy
ADL notes to self
even more stim toys
present from my boys for last month’s birthday
freshly painted barn
out to lunch
extreme closeup grandchild selfie
What follows is my contribution to #BoycottAutismSpeaks flash blog, #LoveNotFear. It is sparse. I wanted it to be more because I believe in this effort. I believe the rhetoric of tragedy and the push to fix what is not broken hurts the connection between children and their parents, and that breaks my heart.
However, I could not bring myself to write of how my life has changed so dramatically in the last four years. It is a beautiful thing, but some stories are not ready to be told.
I am safe now. I am safe.
Some days, I need to remind myself over and over. It becomes a mantra. I have to remind myself.
Some days I forget. Some days I just cannot believe.
Fear kept me alive for the over forty years I lived as a disposable human.
The fiction that I was less than human crumbled when I was faced with my own neurodiverse children. They are wonders. They are art. They are so fully human that it fills me with awe and sets my heart on fire. I never felt fear or disappointment in their deviance from some mythic norm. They are precisely as they should be. Yet, I see myself in them, and for forty plus years, I heard nothing but how I am damaged, defective, less than. I could not apply the corollary to these loves of mine. I have always, and will always love, accept, and treasure exactly who they are. I could live no other way, even in the absence of anyone who loved and accepted me. Love outweighed my life experience.
This time is difficult for me.
that I am not allowed
Three completely unrelated facts:
I am autistic.
I am queer.
I was consistently misgendered as a child.
Growing up, these three facts were treated as one pathological whole. Girls are soft and warm. They communicate with others. They show affection easily. If only they could make me more feminine, the rest would fall into place. Meltdowns were viewed as acts of aggression; violent masculine behavior. Surely if they could not curtail the masculine behavior it would irreparably damage my development…(read more)
I am sorry.
I want desperately to undo what has been done to you, and I can’t. I simply can’t. If you were one of my children, I would fold you in my arms and let you know you are a treasure. You matter just as you are. Not some trained, controlled, acceptable incarnation of you, but you in all your glorious, messy beauty. You deserve love and acceptance. It breaks my heart that you didn’t get that.
You deserve quiet, peace, and privacy. You deserve room to grow and a safe space in which to do so. I am sorry you didn’t have that space. I didn’t either. I did what I needed to survive, and I broke over and over again. My adolescence was a string of Faustian bargains, and I stumbled into adulthood yoked to some skewed culpability manufactured by the very people who forced me into those circumstances.
I grew up in a different time. There is no record of the events of my past, and I owe it to no one to dredge them up and justify my actions. All my supposed sins are my own. I can hold them close to me. I can guard my secrets, not out of shame, but out of love for my self.
I am sorry your pain was turned into a public spectacle. Do not feel shame. Do not be embarrassed. You are not to blame. There is a community out here waiting to fold our arms around you.
Because you are a treasure.
I should not need to explain myself, but I do. Over and over and over again because there is always someone out there who is certain they know me better than I know myself. When I have the option, I will choose when or if I use verbal speech, and my reasons are my own and valid. I am not obligated to be verbal just because it would make you more comfortable.
If I am using my few minutes of verbal speech with you, I am offering you something limited and precious. I have carved out a section of my physical health and peace of mind and given it to you like a pretty slice of birthday cake.
How long do most of my interactions with people take?
Three minutes in a drive thru,
Five minutes at the grocery checkout,
Ten minutes of social gathering small talk,
Fifteen minutes for a neighbor to borrow some sugar…
In my verbal marathon, at fifteen minutes I hit the wall. I can try to push past that, but there’s no guarantee I’ll finish the race. I am no longer running on solid ground. After fifteen minutes, maintaining verbal speech is like running on a tightrope. It wobbles. The margin for error is imperceptibly tiny. If I falter, the only option is catastrophic failure.
At best, I can walk this tightrope for the next twenty to forty minutes. These are the minutes when I stammer and rub my arms raw. These are the minutes when I say words that are not what I mean. These are the minutes I am locked in decades old scripts that do not allow for dissent or self preservation. In my head, past abusers bubble up to my consciousness screaming my failures, derailing my thoughts. These are my wounded animal minutes. I will accept almost anything, or lash out instinctively.
I cannot make it past those forty minutes. No amount of trying, wishing, or believing in myself changes that fact.
Forty minutes is just enough time to spend a life surfing the gap. I tried to make it in the work force, and it almost killed me. Not in an I’m miserable and want a good cry, a glass of wine, and ice cream sense (although that counts), but in a high blood pressure induced daily multiple blackouts and increased seizure rate sense. I have too little work experience to qualify for Social Security when I’m sixty-seven, but I am not able to qualify for SSI. If I honestly portray my abilities and limitations, I leave my children vulnerable to intervention by child protective services because disability in this state is still legal grounds for child removal irrespective of any other factor.
Most of my forty minute dog and pony shows are to keep judgement off my parenting. This is simply an extra responsibility required when parenting while disabled. There stands my line. I will not sacrifice my children at the alter of any cause no matter how just or righteous. What Should Be will not protect them, and my primary obligation is to their well being.
My father’s older brother was a quiet, brilliant man. My uncle was a slight built man with darting eyes that rarely met another’s gaze. His hands seemed like new tools he hadn’t quite mastered. They would shake as he lit a cigarette. They would fumble as he put together his clarinet, but once he had it assembled, with those long thin fingers in place, he was seamless. That clarinet was an extension of those hands, and it was perfection.
My uncle spent most of his time in a small garage apartment where he could read, make music, or sit amongst the gardenias and watch the squirrels play. It was his refuge, and he let few people inside. In the summer, he would often ride his bike to my grandmother’s house, but after a few minutes of trying to answer a bombardment of her questions over the din of the television he would become cranky and flustered, and we would walk back to his place. There, we could sit for hours listening to Stan Kenton or Chet Baker and blissfully not utter a single word. He was not like other adults. He was like me.
My father was charming. He had a quick wit, and an encyclopedic knowledge about darn near anything. He had a fearsome, exacting moral compass all his own. Integrity was everything to my father. People liked him. He did well out in the wider world, and he hated every minute of it. He hated the noise. He hated the groupthink. He hated the constant inane chatter. As intensely as he loved the human race and all the amazing things it was capable of, he could not tolerate being amongst his fellow humans and all the horrible things they were capable of. Much to my mother’s dismay, he refused to socialize. His tolerance for human interaction was only enough to tolerate his workday. My father would leave the house each morning with a palpable sense of dread, and come home each night exhausted. He would keep up this cycle until he could not, and then he would quit yet another job without warning, usually over an issue he saw as black and white but about which his former employer clearly disagreed. In between jobs, he drank.
My mother was a people person. Everyone liked my mother. She understood what people expected of her, and she never let them down. My mother was a self made woman. She never needed help or accommodation. She had the same game plan for all arenas; work, church, friends. Start at the bottom, do more than your share, keep your head down, and make people happy. This plan worked everywhere. No matter where my mother was, it wasn’t long before she was in charge.
Much to her dismay, none of this carried over to her home life. My mother was at a loss in how to deal with us. She was bewildered as to how people so intelligent were so incapable of success. She was crushed by the unfair hand she was dealt. She had played by the rules, and in return got a husband who could not support her, and a child who could not interact with peers, was constantly ill, and scared away babysitters. She found solace in the Bible, often describing raising me as her own personal trials of Job. By the time I was twelve, my mother had given up on us. She stayed because nice women simply did not leave their families, but she had lost all interest in trying to fix me. Her focus became her career and the relationships she formed in the workplace.
My mother’s detachment created some problems for me. My father had been between jobs for nearly a year. He was drinking liters of vodka a day resulting in auditory hallucinations; voices that told him I was an immediate threat to his safety. I was often forced to leave home for a few days until the situation calmed down. Whatever explanation my father gave my mother for my numerous absences, it must have been completely plausible. Any alternate explanation is simply too painful to entertain. I got by relatively unscathed. I looked many years older than I was, so it was easy to blend into the adult world. My grades never suffered, and I made real friendships, something I’d never accomplished among my peers in school.
In many ways my mother’s change of heart was an immense relief for me. While there were still medical interventions that I did not love, the lifelong string of psychiatrists, psychologists, hypnotherapists and the like came to an end. Ten years of strangers attempting to make me acceptable had accomplished nothing other than building a mountain of credit card debt. If I was going to find a way to make my mother proud, I’d need to figure it out for myself.
My top priority remained gaining my parents’ approval, and toward that goal, academics were my only successful outlet. In school, I was in a gifted program, which meant I spent most of my days with the same twenty-eight students for every class, twenty-six of whom shared a common background; white, wealthy children of “respected” families. They floated in a cloud of starched oxford cloth and Polo cologne. Gail and I sat firmly on the ground below that cloud, outcasts by virtue of her skin color and my neurology. No one was outwardly mean to us, but even at thirteen, the others had mastered the icy tolerance afforded obligatory tokens. Gail and I were more amused than hurt by this. Alphabetical seating kept us together, and this was not a movie where every socially awkward teen wants desperately to be part of the popular crowd.
One late spring day, there was a party invitation from Laurie on my desk when I walked into French class. Laurie was the ‘funny one’ of the very popular girls. She was snarky before snarky was a thing. She had a quick wit that stung. I’d seen girls driven to tears by her so often I lost count. Our only conversations had been her asking me for help with algebra, so I had no idea why I was invited. I assumed I would say I had other plans, and the matter would be dropped. Laurie would have met her obligation to be polite in inviting me, and I could avoid an evening of bad music and perplexing conversation. Brian, the boy every popular girl crushed on, sat down next to me and asked if I was going. I told him no, I had promised my uncle I’d spend the weekend helping him paint his apartment. Brian asked me to please reconsider. I was thoroughly perplexed but promised to think about it, and like an idiot, I kept my promise and really thought about it.
The more I thought about this party, the more I wanted to go. Not that the party itself held any appeal to me, but the concept of the party, the ability to go home and tell my mother I was going to a party with kids my own age was too enticing to pass up. I would be a teenager going to a party with other teenagers. It was my mode of operation to pick a television show or movie as a pattern for unknown social scenarios, and I decided this was Happy Days. What could be more normal than that? It took all I had when telling my mother about the party not to ask her if it made her happy that I was going, because I knew that was not what Joanie Cunningham would do.
My mother must have been pleased, because that Saturday she did not go into the office, but stayed home and ironed my shirt. I had not been able to reach my uncle to cancel our plans. He had a habit of not answering the phone, so he rarely got upset over information he didn’t receive. Mother promised if he called, she would tell him I’d be over the next weekend.
My mother dropped me off at 7:35 with plans to pick me up at nine. I knew the party ended at ten, but I also knew my limits. The party did not seem to be nearly as intolerable as I anticipated. We were outdoors, so the music was kept to a respectable level. I got a Dr. Pepper, and surveyed the landscape. I then placed myself one third distance from the center of the large patio, not so close as to be an actual participant, but not so far back as to appear aloof. My plan was to simply stand in that spot for a little over an hour, and I’d be done, but somehow, the cluster of people drifted outward, and before I knew it, I was drawn into conversing. I held my own, stutter fairly in check, when I heard Laurie say my name, “Bridget.”
“Yes?” I replied.
Slowly, savoring every word she asked, “Tell us, Bridget, is your dad still a drunk?”
While the girls tittered, I stood there frozen trying to collect myself. I had failed in my attempt at social normalcy, this had all been a colossal waste of my time, and I didn’t know how was I going to answer all my mother’s questions when she picked me up. I did not feel sad, or embarrassed, but since I had nothing to lose, I wanted to at least satisfy my curiosity.
“Why?” I wondered aloud. “What do you gain by asking me a question like that? I really want to understand.”
I startled as a hand touched my elbow. It was Brian. His voice was quiet, and angry. “Yeah, why Laurie?” He didn’t wait for a reply, but led me over to a bench. There I sat, eyes wide, watching Laurie’s party fall apart. The crowd drifted apart, divided by gender. The boys almost universally derided Laurie while the girls stood behind her, not saying anything in her defense, but unable to take the risk of going against her. I sat on that bench another half hour waiting for my ride home, while boys shuffled by with mumbled words of encouragement to insure I wasn’t sad.
I said little on the ride home, fending off questions with the very truthful excuse that I had a headache. I was weary from trying to be a part of the world and wanted the day to be over. I went straight to bed, thinking next weekend I would not spend trying to please anyone. I would go to my uncle’s, and paint, and listen to real music.
What I didn’t know was that night my uncle was also weary from trying to be a part of the world as well. They found his body that Wednesday.