Payment

[Content: Abuse, ableism]

I don’t want younger Autistics to learn some of the skills I have- or, at least, not the way I learned them.

Let me explain- it’s not that I’m against someone deciding to learn a new skill that they want or need to learn to achieve things that they want. I’m not against teaching a kid of any neurology new things as they explore their world. But there are some things that aren’t worth the trauma- the long term emotional damage- of how they are taught. Or, at least, of how they are taught to Autistics.

Recently, I was teaching a friend how to do dishes. Step by step, gently, with examples and tips. Feel as you wash- if you feel any grease or food bits, it’s not clean yet and you need to keep scrubbing. Later, I paused in the middle of pouring myself some water. You know, that’s not how I learned to do dishes. I learned it traumatically.

My mother was working when we first had “big” solo chores. We rotated chores between all three siblings. My mother’s second husband, whose death I talked about in my last post, was the adult on hand for chores. He herded me into the kitchen, and told me to do the dishes.

It wasn’t “casual” ableism that he used then. It was fierce and directed. He loomed over me when I said I didn’t know how, and used it as “proof” that I wasn’t really smart- the only alternative had to be that I was lazy. So I tried doing the dishes while he went off to do his thing. I pondered on the fact that there’s cross cultural archetypes of Cinderella while I tried. When I finished, I would declare it with relief.

He would loom again, and wave the dishes in my face. He would tell me I was obviously trying to get out of doing my fair share, because they weren’t done right. And so I did them again, over and over. I think I threw up a couple of times at first- I hate the oily texture at the bottom of the sink when people fail to scrape their plates, and the smell of used dish water. Letting the water run was not allowed if Rick was watching, so the smell and oilyness of the first rinse was there, while the soap bubbles waited in the second sink for a rinse. Not even gloves were an option- instead, I was to learn to deal with the sensory assault that was my “fair share” of keeping the household.

I believe he enjoyed his use of humiliation. His combination of verbal and physical intimidation was effective in eventually teaching me basic skills like this, the very technical skills that are the building blocks of independent living skills. The process was repeated with a lot of skills and “skills”. Vaccuming and laundry went hand in hand with passing, with not looking “crazy” and not echoing “nonsense”.

The Wise man doesn’t speak what he knows. And I wanted to be wise, because according to Rick, no one would believe I was competent.

It was better when my mother was home, but there would be little reminders that would just seem stern without the context that happened when she was at work. But the repetitive enforcement of my lack of skills, of how bad I was at covering, at passing, was just as destructive if not more than the times he loomed over me. The same things I observe being used to teach kids with similar behaviors today were the hardest part.

When the inevitable meltdown happened, it seemed, from the notes she took, unprompted or triggered by things that were relatively innocuous. That’s not to say I wasn’t easily triggered before, but they were always specific things, things she could figure out.

Rick had been gone for more than 5 years before I could articulate half of what happened to me. It was two more before I could do it well enough to get it across to my mother how much she had missed.

The damage done in the name of teaching me skills isn’t worth the skills. It isn’t worth the years of self hate, the years of denying myself the services and supports I needed in order to prove his tirades wrong. It isn’t worth the nightmares I still have of his eyes when enduring forced eye contact.

Look me in the eyes. If I let you grab my chin and point it somewhere- especially at a face- you know I trust you.

You want to talk about how hard it will be for your son? How you just want your daughter to get married some day? Stop. Stop thinking about your own wishes, your own images of how your kid’s life will go. Look at the skills they show interest in. Find what they are personally ready for, instead of what some book says is “developmentally appropriate.” Let them build their own image of what success is.

Because the trauma of forcing someone into a schedule they aren’t ready for? Of forcing unneeded skills? Of removing non-harmful but socially difficult coping skills? Of holding up your own wishes and ideals as the goal?

Isn’t worth the trauma.

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27 thoughts on “Payment

  1. When I was infuriated by the seemingly universal presumption of my incompetence–including by my *younger* siblings–and what was really screwy and I realize now was gaslighting in effect if not in intent was that no one believed me whether I said I couldn’t do something or whether I said I could. (“I can’t do this.” Yes you can, you’re just being selfish. “But I can do that.” No you can’t, you’re too scared.) There was just *no* way for me not to lose, to be humiliated or get in trouble no matter what I did or said. And it made me so terrified of not having control over my life. I threw myself with blind fury into doing everything that no one thought I should be able to, or that I would ever enjoy or want to do. And some of those things were some pretty tame versions of typical teenage stuff–staying out all night and what have you. Spelunking. Performance. Journalism. I started compulsively putting myself into situations in which failure was just not an option. Went a long way away for college. Just to make myself. Just to know I could. Just to be able to say “I do whatever I have to do.

    And now I can do a lot of things–a whole lot of things–I’m independent and employed and blah blah blah. And I’m an adrenaline addict for it. I have absolutely no reliance or trust in other people. And my mother says “I hope you won’t use your Asperger’s as a crutch.” And I’m like, what? I’m addicted to the hormonal response to stress and terror. And somebody’s concern is that I’ll use my diagnostic label as an excuse? The universes…they don’t go together.

    I can’t say even say it wasn’t worth it–I’m proud of what I did, and I’m proud of my life–but the costs are so huge, and I just think there has to be a better way. I think there are uses for the “just get yourself in over your head” approach; I think there are times for it, but goddamn was it just such an egregiously unnecessary way to grow up.

  2. …I sort of lost track of where I was going with that. Anyway, yes, I hope that younger autistics never learn some of the skills I have. I hope they learn whatever they want or think they need in terms of living skills, job skills, whatever they think they’d enjoy. But some of the things I taught myself…I hope they never have to.

  3. This is SO good, so exactly what my experience has been, except that i was largely left to learn things the hard way, and made myself learn a good deal of ‘social skills’, simply in order to survive. I paid a high cost for it tho – my health, years of my life, wretchedly high anxiety, etc etc.

    • Thank you!

      One of my big worries when I posted this was that people would miss that there is a right way to teach these skills, and that I wasn’t saying that Life Skills shouldn’t be taught.

      I’d actually like to see life skills classes made available to all students as an after school program where each student is taught at their own level Life skills classes, but every time I mention it I get push back. Somehow it’s seen as “wrong” to want to integrate teaching these skills, which boggles my mind, or to make it so that students who need them don’t have to sacrifice academics in high school. Or maybe the thought that students who need these could do after school activities is taboo?

      I don’t know. What I do know is that in order to take the classes that were academically appropriate in high school, I had to refuse to take life skills classes. Additionally, I know a ton of typical kids who could also have benefited from life skills classes for a number of reasons- maybe their parents didn’t have the skills, maybe there are class differences that meant some of the Life Skills weren’t seen as important (thus leading to inter-generational poverty when it comes to some skills like dealing with bills and money), or maybe other skills were so prioritized that their parents just never got around to it.

  4. ((Savannah)) I had a stepfather who did this, too. It wasn’t just the end result that satisfied him. We had to perform the actual chore exactly the way he wanted us to do it. He grabbed my sister’s head and forced it into the toilet to “show” her she didn’t do a good enough job scrubbing it. Aach, I don’t want to go into anymore. Too many bad emotions. I didn’t realize the anger I carried about this whole thing until a few years ago.

    I just wanted to reassure you. You aren’t alone. This wasn’t your fault. *squeezesyourhand* I’m glad we don’t and won’t endure it any longer and glad we know better.

  5. Pingback: Awareness, Support, Development » Blog Archive » Worth Reading: April 20, 2012

  6. What a wonderful post, Savannah. Thank you for writing it. I hate that you had to go through such abuse. All the more reason why it’s so important to have you share this.
    I hope it’s okay to ask, my daughter Emma, who is ten and has some language, but is by no means fluent, has a tough time shampooing and rinsing her hair. We’ve been working on this for about a year or so now. I have tried getting in the shower with her and “showing” her by washing and rinsing my own hair, but this doesn’t seem to be the right way to go. I have tried to “show” her by using my hands and lathering the shampoo on her head and then trying to help her rinse the soap out but, again, this hasn’t proven to be much better. She needs to cover her eyes with a wash cloth, so she’s further hampered because she only has one hand free to rinse the soap out on her own. I would love any feedback on this from any who care to give it. I think the water and soap getting in her eyes really burns and physically hurts her, but I also think she doesn’t quite know how, literally how to wash the shampoo out. Someone suggested getting a mirror, but I’m not clear on how that will actually help her, because she needs to have her eyes covered, so I think I have to teach her or show her in a way that involves touch. I’m not sure verbal instructions are helpful either. It seems like the sensory overload makes verbal instructions impossible to follow. Thoughts?

    • Oh, this was SO much a problem of my own at that same age. Soap in my eyes and hypersensitivity to water and lack of coordination and everything (and it didn’t help matters that something about the chemistry of MY hair interacted badly with the limestone-rich water where I grew up, making it doubly impossible to get clean). And people also tried to teach me by getting in the shower with me to help…which I really have to say I found invasive and not helpful. (If this turns out to be the only real way to do it, let her wear her underwear or whatever makes her more comfortable in that situation.)

      While I hated being in the shower, I always *loved* getting my hair washed by professional hairdressers. If there’s a pro who she seems especially comfortable with, could you take her there to get her hair washed on a semi-regular basis, and ask them to explain to her while they’re washing how they’re doing it, and to pay attention to how they’re using their hands? Or even if she can’t pick up the skill that way (some coordination issues just take time), it might make her feel better about herself just to have her hair taken care of like that on a regular basis.

  7. Yes. I like that idea. Thanks so much Savannah. Really appreciate it. And thank you for speaking out as you are. I feel so grateful to you. It’s all of you who are beating a path so others younger than you might not have to fight as hard.

  8. Pingback: A Fantasy For Autistics | Aspen Post

  9. Pingback: A Fantasy For Autistics « Life and Ink

  10. This was a great post. It has taken a long time for my oldest daughter to learn to wash her hair. She is 26 and I still need to say something, gently, once in a while. I found that getting in the shower wasn’t the answer either. I think that patience is so important…and part of that patience is to keep trying and not give up on important life skills. I think you were abused by your stepfather and sometimes other people around you. My son solved the problem by having his hair cut to 1/2 inch.

    • Oh, I know I was abused. The thing is, that my abuse and the abuse of other people with disabilities- Autistics in particular, but people with other disabilities as well- is often excused as treament or even life skills training.

      I think- and marsupial mama comment on it- that I do mention the difference between good teaching and bad teaching by starting off talking about teaching a friend of mine how to do dishes. But I also think it’s important to remember that not everyone is ready for a particular skill at the same time, and that’s doubly true for those of us with developmental disabilities.

      Persistence in seeking a new skill is definitely a huge thing that can help. But forcing your own persistence does walk that line of emotional abuse- I believe we should instead be fostering persistence in young people as we teach them what we’ve learned. Thankfully I now have friends who can help foster my persistence- they still provide accommodation for my phone anxiety, but they provide opportunities for me to work on it if I like because this year skills that will help me cope with that are what I’m working on.

      Also, my niece likes the B button and wanted to share that with you.

      bbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbbb

      • I love the B button! That made me smile. Thank you for sharing it! The abuse, yours and so many other Autistics have endured is beyond belief. It is rampant and everywhere to horrifying degrees. It seems to be so much the norm that it’s unusual to meet an Autistic who hasn’t been horribly abused by someone at some point. I am so glad to hear you have friends who can provide you with the help you need in a safe and kind way.

  11. My son liked lights, too, intensely. We gave him piano lessons and that fascination with the piano gradually reduced the light switching. He went on to enjoy mallet instruments through college and he still plays in our church orchestra.

    I am not sure, but I am wondering if you are implying that I emotionally abused my children or walked a “fine line” in trying to teach them life skills. I will tell you that many people remarked to me that I had amazing patience with my children. I was emotionally abused as well as a child, but I am only very mildly affected by autism myself. I understood my children. My husband was both physically and emotionally abused by his father and his mother was beaten. We were therefore careful in our treatment of our children.

    • Oh I certainly didn’t mean to imply that about you! What I mean is that we have a society that normalizes abuse as teaching and prioritizes parental desires over the needs of the child sometimes, and that we all have to be very aware of that because the line is so hard to “see”. I hope that makes sense I’m not entirely sure how to make sure I’m saying things like this right. It seems like you are super aware of it in your own home, in part because of your husband’s experiences. 🙂

  12. wow I complain about having Aspergers but my life has been so easy surrounded by people who have nothing but life in their hearts for me. I am so sorry. I can’t even imagine how hard your life has been, how hard my life could have been, if I wasn’t born lucky.

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