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Advocacy family Health

The Shame: A Personal Essay About Autism

Photo of a young woman staring out the window. Her body language suggests isolation and a feeling of being unsafe.

Daughter Ava wrote this for you.

“Ava, you need to understand that there’s something wrong with you, actually, quite a few things.” I listened closely, sitting in the large orange chair, making stick figures with my nails on the fabric. “You have this disease that’s very common with people your age who’ve gone through some of the things you have… it’s called autism, and together we can cure it with time.”

At age six, I knew what autism was, or at least I had a vague idea based on the movies I’d seen, and the bullying I’d observed given to my fellow child-outcasts. I didn’t really understand what the big deal about it was; I mean, my grandpas were both autistic and they were fine… kind of, along with my uncle, and some cousins—I didn’t see where Doctor A. was going with this speech.

“Ava, I have spoken to some of my colleagues, and we are going to give you the diagnosis of ‘unspecified mood disorder.’ No one can know that you’re autistic… there’s still hope for you.”

I panted, she continued:

“A lot of the kids out there in the waiting rooms outside aren’t gonna be able to overcome this, and I believe that you can. With the right treatment we can cure you of your autism… but you can’t tell anyone that you have it—not your mommy, or your daddy, or your friends!”

“Why?” I asked, feeling a ball of shame start to build at the bottom of my stomach.

“Because Ava, if they know, they’ll see you as different, and it will be harder for you to overcome, I promise there is hope for you Ava. There might not be hope for your dyslexia, or A.D.H.D., but I believe that if you stay with me, we will get you through this together.”

Ever since pre-k, I’d known I was different, but for a good couple of years, I didn’t have the shame.

Looking back now, I think it’s pretty obvious that I was not a neurotypical kid: at age four, I refused to leave the house without rubber gloves on my feet because I liked the smoothness on my soles. At age six, I couldn’t talk to kids my own age about anything besides the Wizard of Oz books, explaining my theories about their cultural symbolism, and how L. Frank Baum was an innovator and genius, not just because of his vivid imagination, but because he proclaimed trans rights (for the time), and pretty much invented the blueprint for the home landline—my teachers were not pleased.

What really brings light to my Asperger’s, though, is that my first crush, at age nine, was on Steve Buscemi’s character in Ghost World—I had never related more to a character (except for the protagonist of the same film, played by Jewish goddess, Thora Birch), and I liked seeing someone like me who only talked about his hyperfixations, and found it hard to talk to people. Sure, Terry Zwigoff didn’t mean to portray his character in a romantic light, but even to this day, I find Seymour and Steve Buscemi to be the epitome of male sex appeal.

I first started seeing Doctor A. when my parents separated, after I left a handprint of excrement on the walls of both of my apartments (thankfully, I have no recollection of creating that art). I had a hard time making friends or abiding by social norms, and when there were tiles on the floor, I would count every one of them. When I first moved into my (then) new apartment, I counted each log strip on the ground, and cried when the total wasn’t an even number, or perfectly aligned across the floor. 

Doctor A. refused to give me medication for these issues, or for the depression and anxiety that I had at that early age, saying “It would impede [my] progress for these curable diseases.”

I am now sixteen years old, and I know autism isn’t a disease, it’s a neurological condition that people have from birth. I remind myself of that every day, but sometimes, facts can’t curb the shame. 

When I started public school I was bullied very badly because I didn’t talk like a normal kid. I would only speak about things that I was interested in, couldn’t make regular eye contact (an issue I still have), and didn’t abide by any of the child-edikit that most kids learn by copying their peers. Kids beat me up in kindergarten because I was so “weird,” and my teachers chalked up my inability to pay attention in class and my unique behavior to my parents’ separation, which is honestly one of the least traumatic traumas of my childhood.

My parents eventually transferred me to another public school because I wasn’t accepted into my neighborhood school’s I.C.T. program, and my bullying was pretty unbearable.

When I transferred, for the first time in my life I was popular, but as my peers got to know me better, I quickly became isolated again. I eventually repeated the second grade because I hadn’t been able to learn anything in my previous school due to well… all that dogshit, of course; and being left back didn’t help me adjust socially at all. On top of the Asperger’s and being the new kid, I was now not simply the weird girl, I was also the dumb girl. Kids bullied me, calling me a ret*rd, and telling me to kill myself. This period of having no friends (apart from fourth grade when I actually had kind and qualified teachers) lasted all of elementary school and into seventh grade. 

In fifth grade I forgot how to smile… when I looked at photos of myself, I freaked out because I was scared that I wasn’t smiling properly. Every day I would spend thirty minutes in front of a mirror practicing smiling, moving my mouth with my fingers, using my school protractor to measure the angles of my smile. I felt like a freak, and sometimes, when I look at photos of myself, or actors with great smiles, I forget how to smile once more. Every couple weeks I go to my bathroom mirror and practice smiling. Sometimes it’s for five minutes, sometimes two hours. 

Socialization comes easily to other people. I don’t know how to make proper eye contact still: people always tell me I either never make eye contact, or stare at people so aggressively, it creeps them out. I also overshare to everyone about my political opinions and my sex life, because I still don’t understand social norms in America.

The other day I had an argument with my parents about not needing to wear pants when I go outside, underneath my hoody: “They won’t know what I’m wearing under this giant thing anyway… Why does it matter?” I still don’t know, and sometimes people think I’m faking not knowing these things to get attention. Truth is, I just don’t understand these unwritten social rules.

I don’t understand why I can’t talk about sex, why I should be ashamed of one of the most natural things in the world. I don’t understand common dress codes, I think they’re sexist, bullshit, and meaningless—and it’s not simply that I’m a feminist, it’s also that my Asperger’s impairs me from understanding these things that everyone else seems to have no trouble with. 

Autism isn’t just social and mental, it is also physical, coming in the form of sensory processing disorders. If light is too bright, I can start crying; when people (including myself) chew too loudly, it feels like I’m being stabbed in the ear; and when I freak out or get really scared, my body shuts down, I can’t move, and I especially cannot say anything. I am ashamed because whenever strangers see these behaviors I am criticized. Even people who know and love me criticize me about these things. I feel like no one understands besides other people with these conditions. 

That’s the thing, the shame is bullshit, the hatred I have over my Asperger’s is bullshit, wishing I could get rid of my autism is bullshit. The smartest and most talented people in the world are almost always autistic, and always atypical: Einstein, Stephen Hawking, Neil DeGrasse Tyson—but not just scientific geniuses, artists like David Byrne, Bob Dylan, Picasso, Max Ernst, Leonardo Da Vinci, and famous writers like Ernest Hemingway and Emily Dickinson. 

You may have noticed that only one of the people on that list is a woman. That isn’t because men are more likely to be autistic, it’s that men are more likely to be diagnosed with autism, as women are taught to suppress their feelings and individuality. 

And fuck it, the pros of my Asperger’s far outweigh the social cons, at least at this point in my life. My creativity and vivid imagination, my natural leadership, my ability to work alone and feel confident in my own choices, my unique empathy toward others and compassion for animals, the fact that when I become interested in something I’m practically a walking encyclopedia for that topic—my sense of humor, and the way that I always say what’s on my mind, a trait that women are told not to have, I have because of how my autism affects my executive functioning and my inability to abide by social norms. 

I’m trying to stop freezing up when people ask me why I’m so strange, or if there is something wrong with me. I’m trying to not let people’s ableist comments get to my head, because I know deep down that in ten years these people won’t be able to produce an original idea to save their lives. 

I have one thing to say at the end of this: fuck off, ableist assholes; fuck off, Doctor A.—I’m not ashamed of who I am; and fuck off, shame—you pit of piss at the bottom of my stomach, you don’t control me! The problem is society’s attitude towards people with neurological differences—not the differences, themselves. After all, in ten years, whatever cool ass shit I’ll be up to, the same kids who bullied me as a child are gonna wish they had my zesty Asperger’s funk. 

Dear mom and dad, I know things are harder for me than the average teen, but I’m gonna be okay, because my brain is awesome, and my tits are huge. And to any other atypical person reading this, young or old, from mild A.D.H.D. to Rain Man levels of autistic spice, know that you have a powerful brain and are one of a kind, and these neurotypicals are really just jealous that we have all the hot geniuses and good music. 

Tell your shame to go fuck itself.


Photo by Anthony Tran on Unsplash

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family glamorous

That’s love.

FOR TWO YEARS, our daughter was bullied in school. The school didn’t notice and our daughter didn’t complain so we didn’t know. Finally a mom saw and told us. After that, things happened quickly. One result is that we changed schools.

During those first two years, our daughter shut down emotionally and psychologically from the moment the bell rang in the morning until school let out at night. Maybe this shutting down was a reaction to the bullying. Maybe there were other causes. What’s certain is that she didn’t learn. She didn’t learn the kindergarten stuff. She didn’t learn the first grade stuff.

The old school noticed the learning problems and provided support programs that helped, but did not close the gap. The school warned us our daughter would probably flunk kindergarten, but in the end they passed her along to first grade. The first grade teacher worried, but in the end passed her on to second grade.

Now she is in a school where they pay attention, in second grade, lacking skills her peers learned in kindergarten.

Catching her up takes hours of extra homework a week. It takes patience and cunning as we work to cool a fear and dislike of learning that’s been baked into her soul for two years. Some days I want to cry. But for her sake I smile.

Categories
family glamorous Zeldman

The Wind-Down

LISTENING to Coltrane. Taking a break after assembling American Girl doll bunk beds. The tuxedo cat has appropriated Ava’s American Girl doll tent as his personal summer house. Ava is making up a song about wishing on a star. End of summer. Happy.

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family glamorous parenting Zeldman

Death

Ava, who is nearly four, is not so bothered about Daddy’s crippling monster toe, but great-grandma’s passing still troubles her.

She has calculated, correctly, that if great-grandma can die, anyone she loves is fair game.

Sometimes Ava defies the inescapable logic. She’ll tell a stranger, “My great-grandma died, but my grandma is never going to die.”

At other times, she plea bargains: “Mama,” she says, cuddling on the couch, “I don’t want you to leave me.”

She knows the happy part is that great-grandma is in heaven, but the sad part is that we don’t get to see her any more. And that she can’t talk. Or write letters. Or go to church. Or anything.

In short, she knows that dead is dead. And while she accepts the heaven part, the consolation is abstract.

Novelist Anne Rice lost her daughter in 1972. From the pain of this infinitely unfolding tragedy, she conceived a series of works about vampires, whom she portrays as god-like, immortal beings. In Rice’s vampire novels, a vampire seeking companionship in the dark night of eternity can confer “the dark gift” of immortality on a mortal by biting them just so. The series resonates in part because it darkly mirrors normal human experience. Life itself is a dark gift: every parent knows their child will suffer and die.

Our daughter is not yet on intimate terms with death, but the two have now met and exchanged a few words.

[tags]ava, family, growing up, death, glamorous, myglamorouslife[/tags]

Categories
dreams family glamorous parenting

Number Nine

Early this morning, in my last deep sleep, I was tormented by a nightmare concerning our three-year-old. In my dream, she was chasing some happy bauble. Call it a big floating bubble filled with sunshine. The bubble blew out of the park. She ran after it. I ran after her.

The bubble floated above a big street filled with speeding cars. I called her name and shouted stop, but she did not hear me or would not listen. Giggling and burbling, all young enthusiasm for the chase, she ran into the street of speeding cars. I ran into it after her.

The pursuit continued, block after block. The oblivious bubble. The excited child, dashing into street after street of speeding cars. Me behind, never able to catch up, never able to protect her, never able to make her stop.

Happy Father’s Day.

[tags]dreams, family, glamorous, parenting[/tags]

Categories
family glamorous Happy Cog™ homeownership industry jobs work Zeldman

Hope is the daughter of dawn

Awake at 4:30 AM at the end of a four-day heat wave. Sweating, but not from the weather. Running a business during a recession gets you out of bed with the chickens.

I have always moved counter to my time. I started Happy Cog as the dot-com boom went bust. We bought our first home in December 2007, as the U.S. mortgage crisis flared to full incandescence. And as the U.S. falls into economic narcolepsy, Happy Cog New York and Happy Cog Philadelphia are moving to newer, bigger, better, more beautiful, more perfectly located, and more expensive offices.

By daylight I hustle and count my blessings. We retire early, tired and contented. But at the first pale light of dawn, I’m awake and wired and already on the mental treadmill.

This morning as I lay there fretting over design and personnel questions, I heard our daughter cry out. I was at her side a moment later. She was dreaming; dreaming about bath time. Talking in her sleep, she gave voice to her nightmare:

“No, Mama, no hair wash. Let me skip it, Mama.”

I put my hand on her shoulder and told her she could skip the hair wash, and she instantly subsided to calm sleep.

[tags]glamorous, myglamorouslife, recession, work, sleeplessness[/tags]