Wednesday, February 6, 2013

No You Don't

Sparrow Rose Jones
unstrangemind.wordpress.com

We're grateful to Autistic advocate Sparrow for letting us publish her essay, which inspired our previous contributor, parent Beth Ryan, to write The Cost of Compliance is Unreasonable. Please know that Sparrow's essay may contain triggers regarding autistic girls and conditioned compliance.

When I meet parents of young Autistic kids, especially after they find out how much I was like their kids when I was their kids’ age, many of them say “I hope my kid is like you when she grows up!”

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I used to say, “I hope she’s much better off than I am,” or simply, “No, you don’t,” but over time I learned that parents refuse to accept that answer. Maybe they think I’m doing that social thing where someone compliments you and you are expected to refuse the compliment a time or two, finally accepting it but maintaining your veneer of humility. Or maybe they’re just baffled. But sometimes they even got angry so I finally learned that I should answer, “Thank you. That’s very kind of you to say.” Reinforced behavior -- reinforced by social censure if I dare give the wrong response. And I am exquisitely sensitive to social pressure -- it was one of the biggest clues that made me reject the misdiagnosis of schizoid personality disorder the moment I was given that one.

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But the truth is that they do not want their child to turn out like me. If your Autistic child turns out like me, you have failed. Your Autistic child deserves so much better than to turn out like me.

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Oh, I know what the parents are seeing when they say that. I’m not so mindblind as to not realize: they see a very articulate adult. My writing skills are excellent. My vocabulary is quite large. And, while the largest part of it is self-taught, I am extremely well-educated. I even have university degrees: two bachelor’s degrees and an ABD (that’s “all but dissertation.” I dropped out of graduate school about two inches away from a doctorate). They see that and they think, “my child is non-verbal. My child goes to school and crawls around on the floor, meowing like a cat. My child still wears diapers while all her age peers have been toilet trained. My child bites and hits people. My child bites and hits herself.” And so on.

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Then they hear that I was many of those things, myself. I was kicked out of the classroom for crawling on the floor and hiding under the tables. My first grade teacher said I was “mentally retarded” and petitioned (successfully) to have me removed from her classroom. I would not speak. I bit people, hit people, bloodied other children’s noses, hit them with sticks, kicked, and spat on people. I could not hand-write and so I did not do school-work. I wet the bed until I was fifteen years old. I set things on fire. I was a very troubled and trouble-causing child. As a teen, I was expelled from the entire county school system and my parents had to find a private school willing to take me. At sixteen, I dropped out of school altogether.

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And yet, they think, you turned out all right. I’m told I’m inspiring. I’m told I give them hope that their kids will be okay. How dare I dash that hope by telling them that no, I do not want their children to turn out like me. Maybe they think I say that because I hope their children do not succeed? That is not the case at all. The only reason I’m typing these words today is because I want your children to succeed. I want you to help them be happy, healthy adults. I want you to learn and I want you to do it better. I don’t want the children of today to spend tomorrow going through the things I lived through yesterday.

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I was raped. I was abused -- domestically and otherwise. I was molested. I was taken sexual advantage of. I want you to teach your children to say no and I want them to know how to mean it and back it up when they say it. I want you to teach your children to value themselves and I want you to teach them to own their bodies.

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Children like yours -- children like I was -- are taught to be compliant. That’s what 90% of autism therapy looks like to me: compliance training. They become hungry for those words of praise, those “good girls,” the M&Ms or stickers or other tokens you use to reward them. They learn quickly that when they do what you want them to do, they are a “good girl” and when they try to do what they want, they are a “bad girl.” I was not allowed to refuse to hug the man who sexually molested me for a decade of my childhood because I might “hurt his feelings.” That’s pretty major, but there were millions of minor experiences along the way, chipping off my understanding of myself as something owned by myself and not something owed to the world around me.

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Even something so seemingly simple as the constant pressure to smile. Everybody wanted me to smile. And I was told that I was such a pretty girl and ought to smile. And I was told that I was so pretty when I smiled. And it was so important to everyone that, after a while, I sat in front of the bathroom mirror practicing faces, trying to find the muscle-feeling that would make a smile. I practiced and perfected until I could make a smile on demand. I worked hard until I had a smile that made everyone happy and got them to quit bothering me. And now, when I am afraid that I am being a bad girl, when I am resisting what someone else wants, when I am feeling the pressure to be a rag doll again, to be whatever and whomever I am being asked to be, I put on that smile as a shield to protect the tiny scraps that are left inside me as I give in and give up who and what I am because the pressure to comply is so huge and so uncomfortable. And because I was never allowed to say no, never allowed to own myself, never allowed to not-want and still be a good-girl.

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You do not want your child to grow up to be like me.

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I live in crushing poverty. I live on SSI, Medicaid, and food stamps, which means that I live about 20% below the poverty threshold. If I marry, I lose much of that and become dependent on my husband, stuck in a relationship that I can only hope stays good because I have no resources to leave. If I marry someone else on SSI, the two of us lose about 25% of our cash and resources, so I have strong incentive to live and love without the legal protections that marriage can bring. With the current political climate and the battle over same-sex marriage, I think most of us now realize what it means to not be allowed to marry. My situation is somewhat different in that I am allowed to marry but I am penalized so grievously if I do that it is not really an option for me.

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Although I am so poor, I feel wealthy and fortunate because it is such a big step up from how I used to live. I have never been able to keep a job, which means before I started getting SSI, I was unable to consistently keep a roof over my head or food to eat. I spent a lot of time sleeping in the park, in public restrooms, on loading docks. I ate at soup kitchens and out of dumpsters and off what food I could steal. I entered into sexual relationships with strangers in exchange for a place to sleep and food to eat. It’s called survival sex and it was really easy for me because of my life-long training as a rag doll, compliant, always more concerned with what everyone else wants than what I want, feeling frustrated and worthless because, despite that strong urge to please I never could actually please anyone. So it was easy to give up my life, pitiful though it was, to someone else again and again and again in order to stay alive. My life was not worth much, but it was all I had and I clung to it.

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Survival sex means abuse. Survival sex means being asked to do shocking and disgusting things -- not even all of them sexual so you probably can’t even imagine the things I’ve been expected to do in order to survive. Survival sex means walking across the mile of bridge once again because someone thought it was funny to drive you out of town and drop you off alone, someone thought it was easier to deal with that slut they spent the night with by leaving her far away than risk that people they know might find out they were with her. Survival sex means risking your life, every day of your life, in order to stay alive.

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You do not want your child to grow up to be like me.

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I am well and truly disabled. I thought going to university would help change that, but I developed more disabling conditions while I was in university and struggling to comply. I didn’t feel worthy to ask for accommodations that might have helped me. I was brought up to believe that I have to do things the way everyone around me does them and even then I am of less value than them because almost always, they do it better than me. But I can’t ask for special treatment. I have to keep pushing to do it the way everyone else does. I begged to use a typewriter for school work but I was refused. I can’t have special treatment. I will learn. I will get used to the pain. I will get used to the agony. I just have to keep trying. I just have to keep pushing through. If I ask for accommodations, I am admitting weakness. I am asking for special treatment. I am getting there on an unfair advantage and it won’t count.

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So I actually went through ten years of university without accommodations for my dysgraphia, my central auditory processing disorder, my vestibular hyperacusis, my dyspraxia (mild though it is), my periodic mutism, my shutdowns, my meltdowns, my hypernychthemeral syndrome, my visual migraines ... and the depression and anxiety and agoraphobia this collection of misery brought on. Because the thing all those conditions have in common is the modifying pronoun: they are mine. They are mine and I am supposed to own them and take responsibility for them and budget my time and apply myself (because I am not “living up to my potential”) and conquer them. I am not supposed to ask for help. I am not allowed to ask for help.

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You need to teach your child how and when to ask for help. It is just as important as teaching them how to say no and mean it.

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You do not want your child to grow up to be like me.

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Disability is about more than impairments or barriers to doing. Disability is about societal discrimination and barriers to being. I am not just disabled by my conditions. I am not just disabled by my difficulties in saying no and asking for help. I am disabled by the world around me and the expectations it puts on someone who looks like me (and writes like me!) and the attitudes it has about what I can do and what I cannot do.

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I face strong discrimination every day. I am treated as lesser because I live on SSI. I am frequently accused of scamming the system by people who only understand disability as impairment in mobility or visible deformity. I am told, “you look just fine to me” by people who have never set foot inside a medical school. I am given unworkable “solutions” and told I’m ungrateful and not trying if they will not work in my life. Those who don’t directly say anything to me show through their behavior that they view me as lesser, they think I have given up, they think I didn’t try, they think I am lazy, they think I am living off their tax dollars. Every day, I hear someone say, “why should I have to work so hard to pay for people who won’t?” I live in a world that tells me every day, directly and indirectly, that I am a worthless parasite.

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If I do not talk about being Autistic, I am viewed as an inferior example of a human, one who can barely get by, a slob who can’t keep her house clean, a lazy, good-for-nothing, welfare queen. If I do talk about being Autistic, sometimes I am not believed -- because I can talk at all. I sometimes suspect most people don’t believe in my autism because they saw Rain Man or they saw Touch or they saw Change of Habit or they saw Mercury Rising or they saw Bless the Child or they saw whatever godawful made-for-TV movie-of-the-week that convinced them that they know what Autistics look like and I ain’t it.

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Trust me, I was just as shocked to find out I am Autistic. When I grew up, most of your kids would not have been diagnosed. They say we have an “epidemic” of autism, a veritable tsunami of Autistic kids. But when I was a kid, a good 90% or more of your kids would not have been diagnosed with autism. They would have been like me, labelled as “emotionally disturbed” and then treated and mistreated as mysteriously broken -- often treated with “tough love” to try to break them out of their “willful disobedience.” Everything people say about your kids today? That they are brats, that they are spoiled, that they just need a good spanking? Those things were said about me, with the exception that I didn’t have the autism diagnosis or the modicum of understanding your kids have so I was spanked and tough loved and abused into who I am today.

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I am not convinced that most ABA therapy is much different from the abuse I lived through.

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I still see parents and teachers abusing children in the name of treatment.

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Too often, I see a different label -- autism -- but the same lack of understanding surrounding it.

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And those kids are going to grow up into a world that doesn’t want them, that doesn’t want to employ them, that thinks they’re scamming the system if they live on government support. The vast majority of Autistic kids are going to grow up to be adult Autistics like me. Even most non-verbal kids grow up to be verbal. Most Autistic kids are not going to grow up into the sort of adults that people look at and immediately want to help. Most of your kids will grow up to be like me. And that is criminal.

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Adult Autistics have a staggering unemployment rate. It’s around 85%. Many of us would love to work but are unable to find anyone willing to give us a chance. In most cases, it’s not that we can’t work or won’t work. In most cases, it’s that there’s no one willing to accommodate our needs, including the need to be accepted as people who look, sound, and behave differently. People are uncomfortable around us. I strongly suspect that the “less Autistic” we look, the more uncomfortable others feel around us. If we are very visibly Autistic, we are “other” and that is easier to accept. Not-like-me is much easier to handle. But the more we look “like everybody else,” the creepier it is for others when we turn out not to be like everybody else. The higher the expectations that are layered on us, the bigger a failure we look when we’re unable to live up to those expectations.

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Number one: don’t focus so much energy on making us look “normal.” That’s a waste of time. We’re not “normal” and we will never be “normal.” We are Autistics and we are better off when you focus your energy on helping us to be the best Autistics we can be. If we look “funny,” people will learn to handle that. They will get used to that. It’s more important that we feel safe, calm, happy, competent. It doesn’t matter as much what we look like getting there. If we flap our hands, if we don’t look people in the eye, if we communicate through typing or we speak in a monotone -- it’s okay. Those are not the things that matter. But I see so much focus on those things as if getting us to look right is all that’s required to enact a “cure.” Too many people seem to think that if we look like everybody else, their job is done and we are “cured.”

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But the monumental effort I put forth every day to try (and fail) to look like everybody else is sapping my talents and potential. All my energy, all my intelligence, goes into looking normal. There’s nothing left over to do a good job at something. When the most important thing is for me to look and sound like everybody else around me, all I have personal resources for is showing up. That’s all you can get out of me. And that’s not even enough for a job at McDonald’s. I know. McDonald’s fired me after two weeks.

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You do not want your child to grow up to be like me.

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I don’t have good answers. I don’t have easy answers. I don’t think there are good, easy answers. But I do believe that raising your child -- if your child is an Autistic -- is a much bigger task than just raising your child. If you care about your child, you need to be willing to reach out past your child. I do understand that raising a child, any child, is huge and takes all your time and energy. But if your child is an Autistic, you owe it to your child to reach past him or her and work on building a world that will accept your child. You have a responsibility to become an activist.

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It starts with how you treat adult Autistics. Do you listen to them, or do you insult them? When they tell you how hard their lives are, do you get scared for your own child and push the adult away? Do you take their anger too personally because you are afraid you might not be raising your own child in a way that will keep them from growing up to be filled with anger? Are you afraid your child will grow up to hate you?

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If adult Autistics scare you, do something! Listen to them! Take them seriously! Don’t treat them like children. Don’t tell them they can’t possibly understand your child because your child is different. No matter how much you wish your child were different, they’re not. They’re made of the same stuff as adult Autistics, yes, even the most scary adult Autistics.

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Your child is just as vulnerable to growing up abused and discarded.

Your child is just as vulnerable to growing up impoverished and angry.

Your child is just as vulnerable to turning out the way we adult Autistics have turned out and not just the ones that inspire you.

If you want your child to be someone who inspires you, you need to stop only valuing those adult Autistics who inspire you and instead value all of us. You will never understand how to help your child become the next Temple Grandin (or whomever your favorite adult Autistic hero is) if you do not take the time to understand how your child could become the angry Autistic activist who makes you want to cover your ears and hide.

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How you treat adult Autistics -- all adult Autistics -- is how you are telling the world to treat your child in twenty years.

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The kind of world you are working on building for adult Autistics today is the kind of world you are leaving your Autistic child to inherit tomorrow.

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You are working hard to raise a healthy, happy kid. What are you doing to make a world that kid will be able to live in?

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You do not want your child to grow up to be like me.

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So what do you want for your child? Whatever you want, it requires a lot of work and that work has to come from you and that work starts today, right now, this minute.

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What are you going to do next?