I found this among a bunch of poems and stories I’d written. There’s a number of people it could be applied to, some famous and some not. It applies strongly to some people who are said to have an extreme intuitive knack around autistic people (and to the staff who said she had a knack for the developmental disability field — if you’re reading this, it’s about you, too):
You drop a ball and you know it will fall. You push a door and you know it will swing. Your experience tells you these things.
You push and you pull on a knot in my chest. You adapt to my every motion or action, like some kind of giant Hydra standing in my path no matter where I look or what I do. Thinking vanishes. There is only reaction. To you.
When I was a kid, I was in a hallway, and a bully came out of nowhere, all legs and arms. She would not let me go in either direction. No matter where I went, she blocked me, making loud noises. I thought I would never get away from her.
You’re like her, only you are more skilled than she is. Your blocks are more graceful and fluid, they look less like blocks, more like an oscillating dance of firm and gentle redirections.
I may look defiant, or compliant, or cute, or happy. I may look a lot of things. But you are there, you are influencing every one of these things.
You are said to be a miracle worker with a gift for working with people like me, and a deep understanding of us. Much of the world mistakes control for understanding, even love. So do you.
So tell me, if you understand so much, how did the ball feel about being dropped? How did the door feel about being pushed? What did they feel before they were dropped and pushed? What were they doing with their days? How do I feel about your presence in my life?
Ballastexistenz 
Yep. Ironic how one time I was told that I wasn’t doing my job supervising correctly. I was “letting the (younger kids) lead me around” like they were in control. I guess I suck at it myself. (but maybe not to them). I suppose there are definitely times when adults are violated…when other well meaning adults think an adult is “dangerous” and “like a child”. Goes back to “feel free to make mistakes”. Although, I’d hope in a very serious life threatening/clear/present danger etc that perhaps a watchful eye/quick hand is used in that one and only one instant…maybe a tad more but certainly _nothing_ like what you’ve described. Sounds stressful and also familiar (to bullying days).
I want to respond, but I don’t know what to say.
Except that the control thing is part of why I only babysit and do respite now.
I had a physical bully in childhood exactly like that.
I’ve been puzzling for years what I could have done, and it’s becoming more urgent for me, because that could just as easily happen to my daughter as it did to me.
The rest – I try as hard as I can to let my son be who he is, while still getting the important things done (getting him to the bathroom to be cleaned up as quickly as possible when needed, keeping him away from the stove when it’s on, keeping him away from the lower oven when it’s on), and respect his person. Respect is very important, and allowing each of my children to maintain their dignity is very important.
This post — esp. the bullying part — rings relevant for a lot of reasons, esp. for the violence and the violent intent beneath the bullying.
Bullies are far harder to teach to have “better behavior” than Charlie, I have to say.
I was verbally bullied for years at school. I was very withdrawn, my reposnse was to sit and stare at the wall and not react. I was screaming inside. They would say things like “if I was her I’d kill myself”. It worries me that my sons will also be bullied and I will do everything I can to help them understand that if they are bullied they are allowed to retaliate if they can. I couldn’t, I only wish I could have done so.
I know with my autistic son that there could be numerous incidents when I could have made him upset if I’d have gone along with what was expected in mainstream society. Making him sit with other children in a circle to play “pass the parcel rather than letting him run round a room, for example. Or demanding that he looks at me when I’m talking. Or making him eat his food with his fork or spoon rather than his fingers. Or returning him to his bed instead of letting him do his puzzles. Or making him do hours of therapy instead of realising he’s probably tired of structured activities after nursery.
I’ve got a long way to go and I’ll never presume to completely understand either of my children. But I do understand that whilst I can speculate about what they are thinking, or experiencing, I can never know for sure.
Today I was working with this one autistic boy who also has some form of syndrome. His teacher aide person kept reminding him to put his tongue back in his mouth and stopped him whenever he flapped his hands. I felt uncomfortable about her nagging him because I hate it when people do that with me, but I didn’t say anything. However, when I was with him and she was just watching from the side, I didn’t pay any attention to where his tongue was and when he flapped his hands, I flapped back (which fascinated him, and he would flap some more in reply). He had been trying to stim every couple minutes when she was stopping him, but after I let him flap as much as he wanted to he seemed to need to do it less.
I also did a similar interaction with him in the pool, when he’d splash and I’d splash back. But from what his teacher aide said I think she did that with him when she went swimming as well.
I would hope to be forgiven for treating people unlike me as Unpeople. Especially considering, as many have already said, that I was bullied a lot when younger, specifically when in High School. I can understand only a hair, but I think that is a place to start. Thank you for writing. Thank you for your videos. You are helping me not to view autistic people as concepts or what they say as symbolic, the list goes on. I would love to hear from you. You are a fantastic writer, I’m envious.
I have been working with Autistic children for 7 years and read about Autism advocacy at the beginning of this journey. Made me feel bad about the way we, as “behavioral tutors” control and “help” these children become accepted within the social norms. I also provide audio therapy and color therapy. Can anybody tell me if this approach is as bad as behavioral modification?
there comes a point where acceptance and tolerance are far more valuable than “help.”
i was bullied constantly. It never ended. i was bullied by my boss and lost my job after the bullying resulted in PTSD. The organization didn’t care. My rights were nowhere to be found. The union did nothing but talk.
They say it is harder to care than to cure. It’s a saying, and it doesn’t work literally. It means “It’s harder to accept and understand than it is to expect the person to change to suit social standards.”
i’m sick of changing for them. It’s time they change for me.
http://dysamoria.com/blog
“You’re like her” I do what she did, but I don’t know what else to do. The young man that I work with , I always thought that we exchanged sun light to shadow , but your words seem so accurate.
I “block”, and I know that I do, and I filter and interpret(try) and explain(try)- but what can I do?
i have no web site.i just want to here from this amazing women who has shown me so much more about autism. and i sure want to learn more. diana carr
This post gave me a whole new perspective. I always knew I didn’t like ABA, but I wasn’t very sure why. Duh. Thanks.
My daughter has ADD and I’ve found that Ettina’s strategy works best with her too. We call it “getting the monkey out”. When she’s allowed to take frequent breaks to jump around and doodle, the whole task goes better than if we try to make her stay perfectly still all the way until it’s done. Doing the latter may work at first but after “re-directing” her a couple of times, things go down-hill really quickly and often results in us having to give up on it completely that day.