Thoughts on being autistic and ‘Seeing Ezra’ by Kerry Cohen
Autism is a touchy subject for me. I’m typically disgusted with how autistics are portrayed by various organisations, the media, in movies and on TV, and in books. You say, “I’m autistic,” and the entire room goes silent. You become the elephant.
Finally, after a long two minutes of an awkward silence, someone replies. “You mean you’re a person with autism; you have autism.”
You don’t say anything. This isn’t what you wanted to hear—you expected to hear it, because you know by now not to expect people to so openly and willingly accept neurodiversity. In your mind, you count to ten. On the last number, you inhale and exhale a deep breath through your nose. You have to be careful; if you get too angry, they will accuse you of having a meltdown. When people learn you’re different, you instantly lose any right to feel angry about something, no matter what it means to you.
You work up the patience and confidence to say something, but this person decides to continue. “You can get the help you need. Your autism is not you; don’t let it take over.”
All of a sudden, you feel this was a mistake. You wish you could go back in time and never have that tiny ounce of hope for the possibility that someone could accept you as you are.
The majority of the world feels as though autism is this bad, evil thing; they want to put people like us onto our own island, because they feel us reproducing will cause the end of the world—that autistics are catalysts for an apocalypse. There are many people in this world who feel as though autistics should be given the death penalty simply for being autistic—that autism should be illegal.
The majority of the world treats autistics as though we are not human beings. Various people in autistics’ lives want to fix them, run tests on them—they want to change autistics to be “normal” for their own selfish reasons.
It’s really hard to be a self-advocating autistic. Last year, a mother told me, “At least you can have this conversation with me. My son will probably never get to.”
I tweeted back, “I hurt for your son; you don’t deserve him.”
I was trying to convince her not to support an organisation that exploited autistics—and to stop saying she’d rather have had a stillborn child instead.
I still stand by what I said. Was it cruel? Yes. However, not every parent deserves to be a parent. Birthing a child doesn’t give a person a right. Mothers are placed on this gigantic throne, and fathers are hated and despised and treated like dirt. My mom wanted me for selfish reasons; my father loved me and wanted me to live with him so he could keep me safe.
I don’t regret what I said that day.
This world is so, so cruel to autistics. The media makes us out to be murderers; autism is a scapegoat for why someone blew up a theater. There are some autistic bloggers who receive death threats. Sometimes, more so than I do with having a nut allergy, I fear for my life. I fear for a day when someone who hates autistics so much has some law passed that all autistics should be “put down”. The majority of the world hates us or pities us—and I’m not sure which one is worse.
I’m supposed to hate myself for being autistic—for not wanting to change, for wanting people to love me as I am, for not wanting to always be verbal, for enjoying not having a boyfriend, for not being what many of my allistic peers are today—and it’s terrifying.
Much of the world treats us like we’ll never be loved; wives annoyed with their husbands’ behavior come to autistic community forums and say they think their husbands are autistic because he’s “being annoying” or “doesn’t really listen” when they tell them something—and others are upset when said husbands refuse to go to be tested for autism…other wives say, “I never would have married him if I’d known he had autism.”
Allistic people act so much as though the only way to adequately communicate with society is by speaking verbally and using certain body language. I still don’t understand body language, and it irks me so, so much when people talk to me, all the while looking at my body, as if it’s supposed to tell them something—as if I can’t just stim without some comment about it or let my tics happen; I have Tourette’s Syndrome. I can’t stop the tics. I don’t care anymore.
I spent 2015 trying to just be; I wanted to love myself, and I hated feeling like I had to change who I was to be accepted. I’m defensive when people insult autistics or, just in general, someone who is different.
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I don’t usually look through the book isle at Dollar Tree in hopes of actually finding a book I might want to read. Yes, I’m interested in getting back into reading—I set a goal of 16 books for this year—but I haven’t completed a book in a long time.
But I saw “Seeing Ezra” by Kerry Cohen on the shelf; it stood out. I read the white text under the black: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal.
For some reason, I considered it. I stood in the isle and stared at the book on the shelf. “It’s likely to be just another book on autism and this mother’s sob story, making herself out to be the victim. I’m going to hate it,” I thought.
“But what if it isn’t?” a voice asked in my mind.
For the longest time, I’ve wondered why parents of autistics make themselves out to be victims—I’ve craved for a peek inside their heads—all so I could understand why so many parents of autistics have come to me and told me how horrible of a person I am for believing any kind of cure for autism should be a decision only autistic adults can make—not a decision their parents can make for them—or thinking a person’s autism is only one’s autism if the person is autistic themselves…
…in other words, a mother can’t call her autistic child’s autism “our autism” if she isn’t autistic, because it’s not her autism.
Cohen let me do that.
Cohen wrote this book and published it, and it only took me about five years to get my hands on it.
I chose not to read the reviews on the back cover. I chose not to read reviews about this book posted anywhere.
People often say reviews help them make a decision about something, but reviews about autistic products never mention whether someone is autistic. I don’t know how other autistics feel about this book. I didn’t want to. I didn’t want a fellow autistic to taint the way I’d feel about it. We kind of stick together, you know. We have to—we’re outsiders. But not every autistic is accepting of autism being neurological-related. There’s an infamous autistic who thinks it should be illegal to be OK with being autistic, to support neurodiversity, and to use identity-first language.
Hate to break it to ya, but the world is neurodiverse. Erryone’s a lil’ autistic.~
I couldn’t put this book down. I purchased it on Tuesday and completed it by Saturday night.
There are run-on sentences and grammatical errors, and it’d be great if it was flawless and Cohen didn’t use so many run-on sentences. But I got lost in the story; I got lost in her story.
I never wrote my much-requested blog post reviewing the movie “Snow Cake”, but the aforementioned movie and this book are two important things to check out for anyone interested in knowing what autism is like—the personality of an autistic—from the way Cohen describes herself and her family needing Ezra, but him not needing them in the same way, to how he sometimes hears everything and then sometimes hears nothing.
In the midst of a big move and tons of chaos, Ezra is unfazed. He has his people and things.
Ezra ignores people and doesn’t play with toys the way specialists want him to play with toys.
I want to throw this book at several members of my family, former teachers, ex-significant others, former friends—so many people in my life, both past and present. But I don’t.
I can’t make them change; I can’t make them accept me for who I am.
Thus, I’ll let them borrow it if they’d like instead. It’s why I made sure to keep it nice—I didn’t fold any corners into triangles to keep my place, and I tried to avoid creasing the spine. It’s a gem; I feel like going back and buying another, so more than one person can borrow it at once.
I just want people to understand me. I saw a lot of myself in Ezra, and I found a lot of the concern people in my life have/have had in Cohen and the people around her.
But I can’t make them change. I can’t make people love me for who I am and understand what autism is like and how it makes me.
Unlike the rubber band hair tie I wear on my wrist 24/7/365 because it is a constant weight to keep me balanced (like a weighted blanket), I can’t remove my autism. My autism is proudly me.
I am autistic; that’s who I am.
I posted my review for “Seeing Ezra” on Goodreads.
You can buy “Seeing Ezra” at Amazon, possibly your local Dollar Tree, or maybe at a local bookstore. Different stores have different stuff, ya know.
I don’t always articulate well, so if you’re ticked off, you can CTRL+W your way off this site—or begin a relevant, respectful discussion in the comments section below. I bite sometimes. If you’re gonna tell me I just have it “easier”, you can sit your tush back down, because you’re wrong.