Possible Trigger Warning (I think) for abuse
Let me be clear – it is NOT Autism that causes the abuse – it’s the society and cultural context which refuses to allow us to simply be who and what we are.
I was raised in a family that had decidedly “spectrum-y” parents. My biological siblings seem pretty Aspie-fied to me. And autistic traits can be found widely throughout my extended family. The area I lived in was about as autistic as you can ask for. Looking at the DSM-V list of criteria for autism diagnosis, I can tick the boxes many, many times, for behaviors and traits that I saw on a daily basis, for the first 18 years of my life.
A. Persistent deficits in social communication and social interaction across multiple contexts
- Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
- Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
- Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers.
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:
- Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
- Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
- Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
- Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
- Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
- These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
I should really write extended blog posts about each of these aspects in my own life and surroundings, sometime in the future. Just not now. Rest assured, I have volumes of examples from both my own traits and behaviors and experience, as well as my observations of / interaction with others. Autism, as it’s currently defined, was just so common and pervasive in my word, growing up. And yet, nobody considered it a disability.
Part of that was because our whole world was geared towards training autistic people to function in the world around us. It was like I’ve heard ABA is — lots of “consequences” doled out in response to unwanted behaviors, together with scant crumbs of encouragement offered in return for proper performance. That training involved a whole lot of pain, coercion, self-denial, punishment, shame, social violence, verbal abuse, physical abuse, and overarching disregard for the individuals who were being “trained up… in the way they should go”. When you managed to do things right, barely a mention was made of it, because that’s just how you were supposed to be, in the first place. You didn’t get a trophy for finally figuring out how to behave like a “normal person”. It’s how you were s’pposed to be, to begin with.
Bible verses which justified harsh treatments of children were commonplace. “Train up a child in the way he should go, and when he is grown, he shall not depart from it” (Proverbs 22:6 KJV) was the theme for my whole world. Children were considered unformed creatures subject to sinful desires — heck, everybody was considered subject to sinful desires, and not to be trusted — and if it took harsh punishments to get kids back in line, then that’s what it took.
Again: Let me be clear – it is NOT Autism that causes the abuse – it’s the society and cultural context which refuses to allow us to simply be who and what we are.
Growing up in an Aspie-fied household was both beneficial and brutal. Everything was done according to schedule. Be downstairs — fully dressed and ready for the day — at 7:10 each morning. Morning Bible meditations were read by Dad, then we prayed, then we ate. We had to be to the bus stop by 7:40, and if you missed the bus, you were in trouble. No parents would give you a ride to school. You had to figure it out for yourself. And not going to school was not an option.
We had our Saturday chores, which we had to do, regardless of how hard it was to do. In only the rarest instances, were you exempted from a type of chore — I was exempted from vacuuming, because I flatly refused to do it, and nobody could make me. I would just turn the damn’ machine off and walk away, after just a few minutes. The whine and whistle of the motor was too much for me. It sent me into shock. So, my job was cleaning the upstairs and downstairs bathrooms. The fact that I couldn’t stand getting my hands and wrists wet, and the smell of cleaning agents was overpowering and made me retch, was immaterial. It had to be done. I had to do it. There was no way out. Suck it up and git ‘er done. End of story.
Everything was tightly controlled to provide an environment that trained us to be the responsible and respectable adults we were expected to be. If that involved pain, too bad. If it was confusing and disorienting, too bad. Just like in larger life, you didn’t have an alternative or a choice. Certain words were never uttered. Certain things were never done. If you transgressed, you were sternly punished and shamed, constantly hounded and reminded of your infraction. Religious instruction was a way of life, with constant chastisement and criticism used to get you back on the straight-and-narrow.
Outside the home, the community was just as harshly exacting. Neighbors were all over you, if you stepped out of line. If your sidewalk wasn’t swept. If your garden wasn’t properly fenced. If you didn’t plant at the right times or harvest at the right times. If you parked wrong. If you lit a wood fire when the weather was still above freezing. If you overstepped any one of the millions of unwritten social rules that everyone “just knew” as THE ONLY RIGHT WAY TO DO THINGS, you heard about it. If the pictures on your wall were not hung properly, people would re-position them so they were parallel with the floor/ceiling. If your clothing was out of order, they would re-order it for you. If your hair was in your eyes, they would push it out of the way for you. If you were not acting like they wanted you to, they’d combine humor and shame and making you a public spectacle, to get you back in line.
To this day, when I visit my family, if I talk to the neighbors, they make sure to let me know if/when I’ve done or said something they don’t approve of. It’s bad that I married a Catholic, then divorced him. Its bad that I’m a lesbian. It’s bad that I drive a Honda, not an American car. It’s bad that the inside of my minivan is not tidy. It’s bad that I didn’t leave early on the day I drove down, and that I arrived after midnight. It’s bad that I ate junk food while I was driving. It’s bad that I stopped to buy sandwiches, instead of making a cooler full of prepared meal items. It’s bad that I buy instant rice and beans for my meals, instead of cooking them from scratch from the bulk bags.
Again… Let me be clear – it is NOT Autism that causes the abuse – it’s the society and cultural context which refuses to allow us to simply be who and what we are.
The criticism and course-correction is constant, relentless, and nobody gives a damn about individual autonomy and expression. If anything, individuality is the enemy. In that part of the world, it’s all about upholding community standards. And their standards are as exacting as any you can expect from an autistic environment where extreme control and routine and unwavering black-and-white standards are the norm, rather than the exception.
The amount of pain in that part of the world is remarkable. So many people are walking around, bearing the scars of being raised in an unwaveringly strict context, where they were never allowed to get any relief for their pain and anguish. You just push through, learn how to function despite the extreme pain and confusion. Just do it. Just do it. Emotionally overwrought? Stuff it down. That sort of experience doesn’t belong there. Then again, alexithymia seems so rampant, I’m not sure anyone really knows what they’re feeling in that place. Emotional intelligence isn’t really high on people’s list of priorities. It’s all about living the kind of life you’re expected to live — abiding by the rules, going to church, doing things the way others believe (and constantly say) you should do them. And let’s not forget keeping other people in line, when they cross into social unacceptable territory.
It’s a very harsh way to live. And it takes a toll. And while I kept it together on the surface for years and years, living in fairly decent locales, being a respectable, job-holding, tax-paying citizen on the surface… in private at home, things were entirely different. At the end of each day, I was done. At the end of each week, I was baked. And I melted down regularly, as a result of the stress. I couldn’t help it, I didn’t understand it. I couldn’t stop it. Nobody around me understood it was autism they were looking at. They thought I was emotionally disturbed. They thought I was traumatized. Well, yes. I was. But the thing that made all that possible and that made it all worse was autism.
Both in myself and in the world I grew up in.
This is not to say that I think autistic parents are a menace to their children. A lot of autistic parents manage to raise kids with varying levels of capability, and I stand in awe of that. Now that people know more about autism, and those parents actually have a way to understand and manage their issues, that changes everything. Plus, some people are just good at it — or it becomes an area of specialty, which turns them into superstars. My own parents, however, knew nothing of autism, nothing of Aspergers, nothing of neurodiversity. All they knew was their own aching need to stifle their pain and anguish, which they never fully seem to have acknowledged or dealt with. They just channeled the energy into other things… and passed it along to us kids.
My biological sister has never done particularly well in the world. She’s still living in that culture, and she’s been kind of a wreck for all her adult life. Her kids are so autistic, I can’t believe nobody’s ever brought it up. I plan to, in my own way, at Thanksgiving — if we get there. My biological brother made a run for it, and lives out on 40 acres in the middle of nowhere with his wive and three kids, two of whom are pretty clearly autistic to me.
I never wanted to end up like my parents or my siblings with my own kids. I chose not to have any, because I knew just how volatile and extreme I could get. I got violent, at times, both in word and deed, throughout my whole life. And I would never, ever want to have a small child around me, when I’m in full meltdown mode. It’s one thing to be autistic. It’s another to be an intermittently disabled queer woman, living in a world where those attributes can turn the world against you in an unexpected flash, adding to the continuous stress of just living your life. And those times of violent outburst happened so often throughout my childhood and teen and early adult years, the very idea of that happening around a child of mine, would make me physically ill.
So, I didn’t have kids. It wouldn’t have been fair. And while some people love to go on and on about how much I’m missing out by not having children, all I can think is, good thing. Good for the kids, and good for me. Who needs to live with that burden, honestly? The main thing I’m “missing” is the profound regret and shame from years and years of never having any help understanding myself for real, and the guilt about what I’ve done to small humans whose only “crime” was showing up in my life.
Small price to pay, really. There’s one less generation that has to deal with abuse from me and my heritage.
One last time: Let me be clear – it is NOT Autism that causes the abuse – it’s the society and cultural context which refuses to allow us to simply be who and what we are.
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