So here's the deal: I haven't been blogging a lot, and my current internship requires me to blog once a week, so I may as well share those blogs here! This is my latest post from the AAPD interns blog, where you can read about the stuff that me and my fellow interns are thinking and doing.
There's a new girl in the office and her brain is weird.
One of the labels my weird brain has acquired is Pervasive Developmental Disorder Not Otherwise Specified - PDD-NOS, for short. This is an outdated term for autism, but I still harbor fondness for it because it includes the word "pervasive." My disability is indeed pervasive, affecting all areas of my daily life - including my work life, and including this internship. Being Autistic changes the way I interact with the professional world, in ways that have been - until now - Not Otherwise Specified.
I actually really like working in a formal setting. I like my Senate staff ID badge. I like suits and pleats and zippers. I like taking the metro to work, I like leather shoes, I like taking my belt off and before I go through the metal detector and putting it on afterwards. I like going places where only staffers can go. I like feeling important, or at least feeling like I am a part of something that’s important.
I like the actual work that I do most of all, but due to some things in my office being classified I can’t really blog about that in great detail, so instead I’m going to discuss the aesthetic that surrounds the work that I do, which I believe is called professionalism. On the whole, I like professionalism. I am working to get professionalism to like me.
When I was in eighth grade I was told that I would not be respected in high school, in college, or in the workplace if I couldn’t sit up straight and look someone in the eye. I was told that I’d better master “attentive classroom posture” before I moved on to advanced literary analysis or interesting job placements. Since then, I have utterly failed to overcome my autism and associated hypotonia, repetitive behaviors, and non-standard communication through sheer force of will. I am an intern with the United States government, but I still do not display appropriate “classroom posture.”
As I explore my career options I am trying to figure out what my Autistic professionalism looks like. I’m working toward a new standard of professional behavior – not a lax standard, but an accessible one. You’ve heard of business casual; this is business-NOS.
Business-NOS is when your stim toy matches your suit.
Business-NOS is elbows on the table, head in your hands.
Business-NOS is being floppy at work because you’re going to be floppy anyway and you may as well get some work done.
Business-NOS is flats only because you don’t have the gross motor skills to walk in heels. It’s trying heels anyway because you believe in the dignity of risk.
Business-NOS is networking using only scripts and echolalia.
Business-NOS is stimming and spinning in the Senate building, flapping in meetings, rocking in hearings, headphones everywhere.
Business-NOS is a standard of professionalism which does not require eye contact, stillness, or median abdominal strength. Business-NOS means putting your passion and energy into your work, not into trying to look normal. Business-NOS is knowing you do good work, and not buying into the lie that someone like you couldn’t possibly do the good work that you are doing.
This is what my professionalism looks like. How about you?
Showing posts with label stimming. Show all posts
Showing posts with label stimming. Show all posts
Saturday, June 16, 2012
Friday, September 2, 2011
Ideas for Supporting Disabled Students in School
[I wrote this last semester but forgot to post it. In my Intro to Special Education class, we were asked to generate a list of ideas that might help disabled students, especially in inclusion classrooms. Here's what I came up with. I'd like to hear your ideas!)
1) Making social education a standard part of elementary school for disabled and non-disabled kids, instead of simply packing the disabled ones off to "social skills" classes alone. Inclusive social ed could cover stuff that disabled kids tend to have trouble with, like how to tell when someone is upset and how to take turns in a conversation, as well as stuff that non-disabled kids tend to have trouble with, like how to be kind and not bully other children.
2) Lesson plans which incorporate many different kinds of learning (visual, auditory, kinesthetic, musical, artistic, verbal, etc.) would allow children with all kinds of brains to be in the same classroom together. The kids would each have time to learn in the way they were most comfortable with, and develop their strengths. But they would also work on their weaknesses, learn from each other, and develop many different areas of their brains.
3) Entirely getting rid of social conventions for proper classroom posture/behavior. Do not require students to sit up straight, stare at the teacher, or be perfectly still. Allow students to stim, sit on the floor or on top of their desks, stand up, or move around if this facilitates learning. This might require some negotiation to get the students working together and not distracting each other, but I think it would let a lot of people come into inclusion classrooms who are being kept out because their behavior, although not harmful, is considered "inappropriate". It would also contribute to raising a generation of people who don’t feel prejudice around non-standard ways of moving. I think this would reduce ableist discrimination when these children grow up.
4) Giving accomodations that have to do with time. I have the most questions about how to implement this particular idea. People with autism and other brain disabilities often have difficulty with time management, and we also often think more slowly than NTs, so we may take longer to perform a given task. This can make it difficult or impossible for us to do the same amount of work as NT peers, even if we have mastered the same amount of information. I would like to research and think some more about accomodations that allow some disabled students to turn in different volumes of work than other students, or to turn in alternative assessments in forms that are not so taxing on their brains.
1) Making social education a standard part of elementary school for disabled and non-disabled kids, instead of simply packing the disabled ones off to "social skills" classes alone. Inclusive social ed could cover stuff that disabled kids tend to have trouble with, like how to tell when someone is upset and how to take turns in a conversation, as well as stuff that non-disabled kids tend to have trouble with, like how to be kind and not bully other children.
2) Lesson plans which incorporate many different kinds of learning (visual, auditory, kinesthetic, musical, artistic, verbal, etc.) would allow children with all kinds of brains to be in the same classroom together. The kids would each have time to learn in the way they were most comfortable with, and develop their strengths. But they would also work on their weaknesses, learn from each other, and develop many different areas of their brains.
3) Entirely getting rid of social conventions for proper classroom posture/behavior. Do not require students to sit up straight, stare at the teacher, or be perfectly still. Allow students to stim, sit on the floor or on top of their desks, stand up, or move around if this facilitates learning. This might require some negotiation to get the students working together and not distracting each other, but I think it would let a lot of people come into inclusion classrooms who are being kept out because their behavior, although not harmful, is considered "inappropriate". It would also contribute to raising a generation of people who don’t feel prejudice around non-standard ways of moving. I think this would reduce ableist discrimination when these children grow up.
4) Giving accomodations that have to do with time. I have the most questions about how to implement this particular idea. People with autism and other brain disabilities often have difficulty with time management, and we also often think more slowly than NTs, so we may take longer to perform a given task. This can make it difficult or impossible for us to do the same amount of work as NT peers, even if we have mastered the same amount of information. I would like to research and think some more about accomodations that allow some disabled students to turn in different volumes of work than other students, or to turn in alternative assessments in forms that are not so taxing on their brains.
Saturday, September 4, 2010
Things To Do At College
It was windy today. I went outside and I found a place with benches and bushes in a circle and I walked in figure eights and watched the wind move the trees around. I saw the flag on Main building waving and I heard it snapping. There was an airplane in the sky and I watched it for a long time. I sat on the bench and I leaned back on my arms and let my head rest on my shoulder in a lopsided way and watched the trees and felt the wind. I felt so unfocused, noticing all the sounds and all the movement but not so much specific things like squirrels and people. I felt happy in an uncomplicated way.
This might sound to some people like a spiritual experience or a deep connection to nature or a drug trip. It isn't anything so complicated as that, simply that being out in the wind is an incredibly absorbing experience. It's auditory, visual, and tactile without overwhelming any of those senses. Because of my sensory issues I find great entertainment in experiences that some people don't even notice. Watching snow fall is pleasantly stimulating in the way that I imagine watching action movies is stimulating to neurotypical people. Walking in figure eights in the wind -- maybe that's like a really great concert.
This time last year, I wouldn't have let myself stim in public, and because dorm rooms lack both wind and trees, I would have gone without this experience entirely. This year is beginning differently, with more beauty, and less shame.
This might sound to some people like a spiritual experience or a deep connection to nature or a drug trip. It isn't anything so complicated as that, simply that being out in the wind is an incredibly absorbing experience. It's auditory, visual, and tactile without overwhelming any of those senses. Because of my sensory issues I find great entertainment in experiences that some people don't even notice. Watching snow fall is pleasantly stimulating in the way that I imagine watching action movies is stimulating to neurotypical people. Walking in figure eights in the wind -- maybe that's like a really great concert.
This time last year, I wouldn't have let myself stim in public, and because dorm rooms lack both wind and trees, I would have gone without this experience entirely. This year is beginning differently, with more beauty, and less shame.
Sunday, August 8, 2010
About Stimming
I used to go everywhere with a rubber bouncy ball in each hand. The weight and pressure of these in my palm, and the position of my hand as I curled my fingers around them, became second nature. Probably they provided reassuring proprioceptive feedback – not that I knew or cared about this. My rubber bouncy balls comforted me.
But when I stopped being a toddler and started being a child, there were so many things I had to do with my hands. I had to learn to make letters and tie knots. I couldn’t hold onto a rubber ball while doing that. And there were more and more places where it was really not “appropriate” for someone my age to carry a set of bouncy balls around. So I stopped carrying the bouncy balls.
I used to flap my hands and arms. Sometimes I would jump up and down when I did this. It was something I found myself doing when I was happy, when I wanted to feel myself moving through space. I tried soccer and hated it. In soccer everyone else seemed to know where to go, and I was always confused. Flapping my hands and jumping up and down, though – that came naturally.
But one day, when I was maybe nine or ten, my mom saw me jumping and flapping across the courtyard of a shopping center. She pulled me aside, and in frightened tones, told me that I shouldn’t flap my hands. Only infants did that, she said, and people who were mentally retarded. I feel it’s important to note, at this point, that my parents have mostly been lovely as far as my disability is concerned. What my mom said was the exception rather than the rule. But it made a lasting impression. I stopped flapping my hands.
I used to hum constantly. It was calming to match the music in my head to noises I could hear and feel. The music kept me moving through my day, kept me from worrying too much. I focused better when I was humming.
But my classmates hated to hear me humming in class, not only during lectures but even in labs or while laboring over art projects. The humming disrupted my classes and embarrassed my friends. In ninth grade Geometry, one exasperated girl threw peanuts at me until I shut up. Her actions, though more pragmatic than malicious, served as a wake-up call. I stopped humming.
Over the next several years, whenever I would catch myself humming – or rocking my body, or tapping my fingers, or moving my hands in a strange way – I would instantly force myself to be still and silent. I never wondered why I stopped myself from stimming – I only knew that stopping myself was the thing to do. I was cured of my self-regulatory behaviors.
And then I went to college.
At college, I was responsible for myself all the time. I had to make myself go to class and work on time, eat meals, take showers. There was no one there to call me to dinner, or to give helpful reminders that I’d be late for my class if I didn’t leave now, or to restart me if I got stuck while looking for a shirt and ended up sitting on the floor, spaced out and half-dressed. My workload increased, but my ability to plan and schedule did not improve. In class, the theories and abstractions and imprecise language hurt my head.
I had to relearn how to stim. I no longer had the luxury of rejecting any coping mechanism that worked. To stand in line at the dining center, surrounded by hordes of chatting students, I had to rock back and forth. To focus myself between work and class, I had to flap a hand for a few minutes. To hold myself together that one time I shut down at work, I had to hum. And I began carrying a rubber bouncy ball in my purse, just in case.
Looking normal worked well for me for a few years, and then it made me miserable. I find it ironic that when my teachers and parents told me to stop stimming, their goal was the same as when they taught me social skills or took me to occupational therapy: to help me live in the world with the minimum of suffering. But I suffered more when I couldn’t stim, and I came back to it like it was a wonderful hobby that I had forgotten about.
I’m volunteering at a program for autistic kids this summer. In elementary school, I worked with shadow tutors from this place; these are the people who taught me how to socialize, how to communicate my feelings, how to look normal, and other important things. But there was one thing important thing they left out: they didn’t teach me that I got to control how I behaved, or that it was okay not to pass. While I learned helpful things like sharing and cooperation, I also learned that stimming was bad, and passing was good, and when I got to college that really messed me up.
I think passing is important if you don’t want to spend all your time dealing with people’s prejudice. Obviously things shouldn’t be this way, but they are. However. I also think that people should have a lot of options available, and should be able to decide at any moment whether it’s more important to pass or to feel good. And that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim.
But when I stopped being a toddler and started being a child, there were so many things I had to do with my hands. I had to learn to make letters and tie knots. I couldn’t hold onto a rubber ball while doing that. And there were more and more places where it was really not “appropriate” for someone my age to carry a set of bouncy balls around. So I stopped carrying the bouncy balls.
I used to flap my hands and arms. Sometimes I would jump up and down when I did this. It was something I found myself doing when I was happy, when I wanted to feel myself moving through space. I tried soccer and hated it. In soccer everyone else seemed to know where to go, and I was always confused. Flapping my hands and jumping up and down, though – that came naturally.
But one day, when I was maybe nine or ten, my mom saw me jumping and flapping across the courtyard of a shopping center. She pulled me aside, and in frightened tones, told me that I shouldn’t flap my hands. Only infants did that, she said, and people who were mentally retarded. I feel it’s important to note, at this point, that my parents have mostly been lovely as far as my disability is concerned. What my mom said was the exception rather than the rule. But it made a lasting impression. I stopped flapping my hands.
I used to hum constantly. It was calming to match the music in my head to noises I could hear and feel. The music kept me moving through my day, kept me from worrying too much. I focused better when I was humming.
But my classmates hated to hear me humming in class, not only during lectures but even in labs or while laboring over art projects. The humming disrupted my classes and embarrassed my friends. In ninth grade Geometry, one exasperated girl threw peanuts at me until I shut up. Her actions, though more pragmatic than malicious, served as a wake-up call. I stopped humming.
Over the next several years, whenever I would catch myself humming – or rocking my body, or tapping my fingers, or moving my hands in a strange way – I would instantly force myself to be still and silent. I never wondered why I stopped myself from stimming – I only knew that stopping myself was the thing to do. I was cured of my self-regulatory behaviors.
And then I went to college.
At college, I was responsible for myself all the time. I had to make myself go to class and work on time, eat meals, take showers. There was no one there to call me to dinner, or to give helpful reminders that I’d be late for my class if I didn’t leave now, or to restart me if I got stuck while looking for a shirt and ended up sitting on the floor, spaced out and half-dressed. My workload increased, but my ability to plan and schedule did not improve. In class, the theories and abstractions and imprecise language hurt my head.
I had to relearn how to stim. I no longer had the luxury of rejecting any coping mechanism that worked. To stand in line at the dining center, surrounded by hordes of chatting students, I had to rock back and forth. To focus myself between work and class, I had to flap a hand for a few minutes. To hold myself together that one time I shut down at work, I had to hum. And I began carrying a rubber bouncy ball in my purse, just in case.
Looking normal worked well for me for a few years, and then it made me miserable. I find it ironic that when my teachers and parents told me to stop stimming, their goal was the same as when they taught me social skills or took me to occupational therapy: to help me live in the world with the minimum of suffering. But I suffered more when I couldn’t stim, and I came back to it like it was a wonderful hobby that I had forgotten about.
I’m volunteering at a program for autistic kids this summer. In elementary school, I worked with shadow tutors from this place; these are the people who taught me how to socialize, how to communicate my feelings, how to look normal, and other important things. But there was one thing important thing they left out: they didn’t teach me that I got to control how I behaved, or that it was okay not to pass. While I learned helpful things like sharing and cooperation, I also learned that stimming was bad, and passing was good, and when I got to college that really messed me up.
I think passing is important if you don’t want to spend all your time dealing with people’s prejudice. Obviously things shouldn’t be this way, but they are. However. I also think that people should have a lot of options available, and should be able to decide at any moment whether it’s more important to pass or to feel good. And that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim.
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