People get so excited about kicking facilitated communication in the face as much as possible. My psych book has a sidebar in the DD section called "The Bogus Form of Treatment Called Facilitated Communication" which gleefully announces the poor results of FC studies and says how awful it is that Autism is a World ("which purports to show that FC works") was nominated for an Academy Award.
I really don't know how to react to this.
I don't agree with a lot of what Sue Rubin says but, you know, she's a person. Autism is a World is a movie about Sue Rubin, a person. Referring to it as a movie about FC completely erases her.
FC is easy to fake and frequently has been faked. It shouldn't ever be assumed to be working without evidence that that particular person is really typing. However, I feel like there is a way of reacting against FC which is not about FC at all. (In fact, it is even leveled against AAC users who are not communicating in a situation where someone could be physically influencing what they say. The immediate assumption is that they are being influenced, whether there is evidence of that or not.)
In the Amazon comments for Autism is a World people are basically saying stuff like: look at Sue Rubin. How could she possibly have those thoughts? This was also said, of course, about one of the first people to benefit from FC, Anne McDonald, who has CP and grew up in an institution thanks to a diagnosis of severe intellectual disability. It is pretty inarguable that Sue Rubin and Anne McDonald are really typing when they type. Which definitely doesn't mean that most people who someone is doing FC with are really typing. But does this mean that it's bad to do FC with someone, especially if you are doing it to attempt to teach them how to type independently later? I don't think it's bad at all as long as you don't assume that the person is expressing all their own thoughts.
But my psych book bemoans the fact that some people who work with nonverbal individuals still use FC as a treatment! Oh no! Because...every treatment is proven to work all the time? Stuff like music and outdoor activities are probably not proven to consistently "work" for severely disabled people, but...you know, I feel like they're a good idea. Because they might be helpful in some way.
Sometimes I just feel like there's this element of, "Aha! I told you that people who look like that don't have anything to say!" And that makes me feel very scared.
Showing posts with label sue rubin. Show all posts
Showing posts with label sue rubin. Show all posts
05 November, 2009
Kinds of Autism, part two
Of course, I haven’t always been ≤1, but it’s hard to really use these terms when you’re talking about kids--because for example it is not considered appropriate for an 8-year-old to walk around a city alone, so by my rubric all 8-year-olds must be at least 2. I think that I became ≤1 at a later age than the average person. But I was mostly around 1, with occasional rises to 2, when I was in my early teens; then I started working hard at about 16 and I dropped myself to .7, which I would describe as a very conscious act of charming daffiness. I guess I should say, I don’t think anything under 1 really exists; I’m not sure that anything under 1 can be someone’s true self. But you can keep it up for a long time. I do. Actually, I’m not .5 at my regular college because everyone is so weird there and everyone knows each other, so I get to sort of flip around from 1 to .5 and sometimes even get higher than 1 when I need to. I miss it there so much.
Usually I do not get to anywhere near like 2, but I can remember a time since I’ve been in college when I got there. I had a really stressful summer after first year, and when I was at the Holiday Inn with my parents on the way back to school, I realized that one of my best school friends CK was at the same Holiday Inn. So we wandered through the halls talking on the phone until we found each other. I have very strong feelings about CK and I was so overwhelmed to be near him that I couldn’t even look at him. I think I might have put something over my face while I tried to get used to him being there. Then his mom and sister came in and asked if I wanted to go to dinner with them. I didn’t think that I could do the things you’re supposed to do when you go to dinner with your friend’s parents, but I didn’t want to stop being near CK, either, so, I went.
In the car, I think I sat next to CK and probably held hands with him, and did a kind of talking that is like holding hands--like, inside jokes, things without a lot of content. Maybe I expressed that I could not really talk. At the restaurant, I sat curled up next to CK and he touched my hair and talked to his mom and sister, and after I got more able to communicate, he helped introduce topics that I could talk about, like telling funny stories about me that I could elaborate on. By the time dinner was half over, I was back down to at least 1.
But this doesn’t happen very much, so does this mean I’m high-functioning? Hardly. It’s not an accident that the lower numbers get the more my definition of them becomes about what a person looks like when they are outside. One reason I am .5 in Edinburgh is that I spend a lot of time in my room playing Solitaire, jumping all over the place, and staring at walls. Also, I think I might fail some of my classes because I am not good at planning, and the nature of being at a big university in a big city is that no one is checking in with me or helping me plan. My number chart is mostly about how well you function in society, it’s not really about how you function in any other way.
At college, even though I am like a 1.2-.7 depending on the context, I would describe myself as high-functioning because I have a pretty easy time making and keeping friends, doing schoolwork, and basically looking after myself. None of those things are true here so I am not really as high-functioning here even though I look more normal. Also, there is a kid at my school who is at least 1.3 all the time, even with strangers, and he’s really popular and involved in all kinds of things and seems really happy; he’s at least as high-functioning as I am if not more so.
When I watched Autism is a World, I remember thinking that if I had aides who kept me from getting into stimmy states when I need to do homework, I’d have an A- average too. I don’t see how Sue Rubin is lower-functioning than me across the board when she has enough support to do better in college than I have ever done. This isn’t saying that I would rather be Sue Rubin than myself; if I understand her correctly, I think she is pretty unhappy about the fact that, as a 2 person, she will always be perceived as disabled by other people and frequently have them treat her differently, even insultingly, because of that; and that she has to rely on other people’s help to communicate. I am really glad that that isn’t my situation, because even though 2 is maybe not objectively worse than being ≤2, we live in a society where it’s a lot worse. But I’m just saying, looking normal is not high-functioning.
I went to high school with a boy whose brother is autistic and whose parents are involved with Autism Speaks. A while ago, my mom contacted his mom to see if she could help me figure out how to get a job babysitting a kid with autism, or something like that. My mom mentioned to the other mom that I had AS, and reported back to me, “She said, ‘I would never have guessed that Amanda had anything.’”
I am absolutely sure that this was meant as a compliment and not in a critical way, but my response is: number one, I don’t even remember meeting you, so how would you even get enough of an impression of me to guess? And number two, when you met me, I did not have any friends, which I think is a pretty good indication that something was wrong with me socially. It’s true, even if you asked your son, who I knew to say hello to but not any better than that, he might say that I didn’t seem to have anything either. It’s not like he was cataloguing whether I had any friends. I’m sure many people who knew me to say hello to were not consciously aware that I didn’t have any friends. So, awesome, there I was at .7, looking normal, earning pending compliments for my mom--but I wouldn’t say that I was high-functioning. What does that even mean if a person with no friends can be high-functioning?
Usually I do not get to anywhere near like 2, but I can remember a time since I’ve been in college when I got there. I had a really stressful summer after first year, and when I was at the Holiday Inn with my parents on the way back to school, I realized that one of my best school friends CK was at the same Holiday Inn. So we wandered through the halls talking on the phone until we found each other. I have very strong feelings about CK and I was so overwhelmed to be near him that I couldn’t even look at him. I think I might have put something over my face while I tried to get used to him being there. Then his mom and sister came in and asked if I wanted to go to dinner with them. I didn’t think that I could do the things you’re supposed to do when you go to dinner with your friend’s parents, but I didn’t want to stop being near CK, either, so, I went.
In the car, I think I sat next to CK and probably held hands with him, and did a kind of talking that is like holding hands--like, inside jokes, things without a lot of content. Maybe I expressed that I could not really talk. At the restaurant, I sat curled up next to CK and he touched my hair and talked to his mom and sister, and after I got more able to communicate, he helped introduce topics that I could talk about, like telling funny stories about me that I could elaborate on. By the time dinner was half over, I was back down to at least 1.
But this doesn’t happen very much, so does this mean I’m high-functioning? Hardly. It’s not an accident that the lower numbers get the more my definition of them becomes about what a person looks like when they are outside. One reason I am .5 in Edinburgh is that I spend a lot of time in my room playing Solitaire, jumping all over the place, and staring at walls. Also, I think I might fail some of my classes because I am not good at planning, and the nature of being at a big university in a big city is that no one is checking in with me or helping me plan. My number chart is mostly about how well you function in society, it’s not really about how you function in any other way.
At college, even though I am like a 1.2-.7 depending on the context, I would describe myself as high-functioning because I have a pretty easy time making and keeping friends, doing schoolwork, and basically looking after myself. None of those things are true here so I am not really as high-functioning here even though I look more normal. Also, there is a kid at my school who is at least 1.3 all the time, even with strangers, and he’s really popular and involved in all kinds of things and seems really happy; he’s at least as high-functioning as I am if not more so.
When I watched Autism is a World, I remember thinking that if I had aides who kept me from getting into stimmy states when I need to do homework, I’d have an A- average too. I don’t see how Sue Rubin is lower-functioning than me across the board when she has enough support to do better in college than I have ever done. This isn’t saying that I would rather be Sue Rubin than myself; if I understand her correctly, I think she is pretty unhappy about the fact that, as a 2 person, she will always be perceived as disabled by other people and frequently have them treat her differently, even insultingly, because of that; and that she has to rely on other people’s help to communicate. I am really glad that that isn’t my situation, because even though 2 is maybe not objectively worse than being ≤2, we live in a society where it’s a lot worse. But I’m just saying, looking normal is not high-functioning.
I went to high school with a boy whose brother is autistic and whose parents are involved with Autism Speaks. A while ago, my mom contacted his mom to see if she could help me figure out how to get a job babysitting a kid with autism, or something like that. My mom mentioned to the other mom that I had AS, and reported back to me, “She said, ‘I would never have guessed that Amanda had anything.’”
I am absolutely sure that this was meant as a compliment and not in a critical way, but my response is: number one, I don’t even remember meeting you, so how would you even get enough of an impression of me to guess? And number two, when you met me, I did not have any friends, which I think is a pretty good indication that something was wrong with me socially. It’s true, even if you asked your son, who I knew to say hello to but not any better than that, he might say that I didn’t seem to have anything either. It’s not like he was cataloguing whether I had any friends. I’m sure many people who knew me to say hello to were not consciously aware that I didn’t have any friends. So, awesome, there I was at .7, looking normal, earning pending compliments for my mom--but I wouldn’t say that I was high-functioning. What does that even mean if a person with no friends can be high-functioning?
02 November, 2009
Like a person, part two
Recently I watched Autism is a World. It was good. I obviously don't agree with Sue Rubin's politics, but she's an admirable person, and I do agree with some of her characterizations of autism (these are things she's said in her writing online, not necessarily in the movie). To some extent--for me at some points, and obviously for her--it is something you can get lost in, and that is not really a good thing, even if it's politically incorrect to say so.
But anyway, I wanted to talk about this one thing that occurs in the movie. It doesn't occur only once, but I thought the best example of it was when Sue was stressed out about her aide's impending departure, and she yelled at her aide when they were sitting together. The aide (Aisling, I think?) correctly interpreted this as Sue wanting her to leave, and she told Sue that if Sue wanted her to leave, she should get out her communication device and say so, "instead of yelling at me." Eventually Sue did communicate that using her device, and Aisling said something like, "Okay, I'm going to leave now, because you asked me with words instead of yelling."
You might ask what is wrong with this, and it's true, when you're just presented with this kind of interaction--one person being rude to another, and the other person saying, "no, I'm not going to do what you say unless you talk to me respectfully"--it seems like there's nothing wrong with it. People shouldn't yell at each other; they should be polite.
But, okay. I already wrote a post called "like a person," but even before I wrote that post I had an idea for another post, also called "like a person," forming in my head. And Aisling provided an example of exactly what I'm thinking about. In this post, "like a person" isn't an alternative to "like an ASD person" and "like a normal person;" it's an alternative to "like an adult," which is often a euphemism for "like a child."
The way I started thinking about this is with another example that I hesitate to use because it's not exactly a big deal, but it really annoyed me at the time. When I was learning to drive, I would get into little fights with my parents because I'm not good at remembering a lot of directions, and every time I got to a fork in the road or a new road coming off the main one, I would ask which way to go. Sometimes my parents wouldn't want to tell me. When they did tell me, we would sometimes have a power struggle because they said "straight" instead of "right" or "left." This would be if, for example, the road curved slightly to the left and another possible turn appeared on the right. I wanted to be told right or left because that was a little easier to process than "straight," because it took me a second to figure out which road was considered to be the same road we were on, and which road was considered to be a turn--"left" or "right". Obviously, it only took me a little longer, but I thought that my parents should respect my preferences about being told "left" instead of "straight," so when they said "straight," if we were alone on the road, I would stop the car and wait for them to say "left." If it was my dad, he usually won, and if it was my mom, I usually won.
Anyway, "like a person, part two" was going to be me arguing that, while my parents would probably say they were treating me like an adult when they refused to say "left" or "right," and likewise when they refuse to do some kind of unimportant social interaction that seems very overwhelming to me at the time, they are not really treating me like an adult, because that's not how you would treat another adult. If another adult expressed preferences, you would probably go along with their preferences, not force them to do something they would rather not do because you're trying to teach them a lesson.
But I know this is kind of a dweeby example, and also, pretty much everyone treats their kids like this, even (if not especially) when they claim to be treating them like adults. I think the Sue and Aisling example is a lot more striking because Sue and Aisling are the same age. I mean, let's think about how you would expect this interaction to go if Sue was not a disabled person.
If I was a 26-year-old woman, sitting with another woman the same age as me, who considered me a good friend but was having some conflicted feelings towards me, and she got upset and yelled at me and indicated she wanted me to leave, I would probably do one of two things:
1. Leave.
2. Be hurt and try to convince her, based on the fact that I knew she cared about me, that she didn't really want me to leave. This scenario might end with me eventually giving up and leaving, of course.
There is just no way that I would treat a situation like this as an opportunity to train my friend to be more polite to me. And I know Aisling sort of works for Sue, so maybe it's not exactly the same thing, but still--Aisling's job is to help Sue communicate with other people, not train Sue like she's a dog. They are the same age. Sue is just as smart as Aisling if not more so. She is understandably upset. Aisling would probably say that it would be spoiling Sue if she went along with Sue's angry, nonverbal request, and that she wants Sue to behave like an adult, but part of being an adult is that people respect your wishes and do not try to forcibly keep you from expressing anger. Most adults yell and make demands sometimes. Sue is acting like an adult, because she is one. Aisling should have treated Sue like an adult, just like she would if Sue did not have autism.
But anyway, I wanted to talk about this one thing that occurs in the movie. It doesn't occur only once, but I thought the best example of it was when Sue was stressed out about her aide's impending departure, and she yelled at her aide when they were sitting together. The aide (Aisling, I think?) correctly interpreted this as Sue wanting her to leave, and she told Sue that if Sue wanted her to leave, she should get out her communication device and say so, "instead of yelling at me." Eventually Sue did communicate that using her device, and Aisling said something like, "Okay, I'm going to leave now, because you asked me with words instead of yelling."
You might ask what is wrong with this, and it's true, when you're just presented with this kind of interaction--one person being rude to another, and the other person saying, "no, I'm not going to do what you say unless you talk to me respectfully"--it seems like there's nothing wrong with it. People shouldn't yell at each other; they should be polite.
But, okay. I already wrote a post called "like a person," but even before I wrote that post I had an idea for another post, also called "like a person," forming in my head. And Aisling provided an example of exactly what I'm thinking about. In this post, "like a person" isn't an alternative to "like an ASD person" and "like a normal person;" it's an alternative to "like an adult," which is often a euphemism for "like a child."
The way I started thinking about this is with another example that I hesitate to use because it's not exactly a big deal, but it really annoyed me at the time. When I was learning to drive, I would get into little fights with my parents because I'm not good at remembering a lot of directions, and every time I got to a fork in the road or a new road coming off the main one, I would ask which way to go. Sometimes my parents wouldn't want to tell me. When they did tell me, we would sometimes have a power struggle because they said "straight" instead of "right" or "left." This would be if, for example, the road curved slightly to the left and another possible turn appeared on the right. I wanted to be told right or left because that was a little easier to process than "straight," because it took me a second to figure out which road was considered to be the same road we were on, and which road was considered to be a turn--"left" or "right". Obviously, it only took me a little longer, but I thought that my parents should respect my preferences about being told "left" instead of "straight," so when they said "straight," if we were alone on the road, I would stop the car and wait for them to say "left." If it was my dad, he usually won, and if it was my mom, I usually won.
Anyway, "like a person, part two" was going to be me arguing that, while my parents would probably say they were treating me like an adult when they refused to say "left" or "right," and likewise when they refuse to do some kind of unimportant social interaction that seems very overwhelming to me at the time, they are not really treating me like an adult, because that's not how you would treat another adult. If another adult expressed preferences, you would probably go along with their preferences, not force them to do something they would rather not do because you're trying to teach them a lesson.
But I know this is kind of a dweeby example, and also, pretty much everyone treats their kids like this, even (if not especially) when they claim to be treating them like adults. I think the Sue and Aisling example is a lot more striking because Sue and Aisling are the same age. I mean, let's think about how you would expect this interaction to go if Sue was not a disabled person.
If I was a 26-year-old woman, sitting with another woman the same age as me, who considered me a good friend but was having some conflicted feelings towards me, and she got upset and yelled at me and indicated she wanted me to leave, I would probably do one of two things:
1. Leave.
2. Be hurt and try to convince her, based on the fact that I knew she cared about me, that she didn't really want me to leave. This scenario might end with me eventually giving up and leaving, of course.
There is just no way that I would treat a situation like this as an opportunity to train my friend to be more polite to me. And I know Aisling sort of works for Sue, so maybe it's not exactly the same thing, but still--Aisling's job is to help Sue communicate with other people, not train Sue like she's a dog. They are the same age. Sue is just as smart as Aisling if not more so. She is understandably upset. Aisling would probably say that it would be spoiling Sue if she went along with Sue's angry, nonverbal request, and that she wants Sue to behave like an adult, but part of being an adult is that people respect your wishes and do not try to forcibly keep you from expressing anger. Most adults yell and make demands sometimes. Sue is acting like an adult, because she is one. Aisling should have treated Sue like an adult, just like she would if Sue did not have autism.
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