Some people do different things or need different things from the average person. (Or the imaginary average person.) Other people have to decide how they feel about that difference.
1. Should the average person accept that some people do this different thing, and not be mad about it? Should institutions and communities try to adjust to meet the needs of these people?
2. Or should the person who's different change their needs to be more like the average person's needs, change their behavior to draw less discrimination and aggression, and be held responsible for any ways they get hurt if they fail to change?
As a person who does and needs some different things, I feel like option one is the right answer in most cases, unless the different thing someone does is being a serial killer. The majority of the time I feel like it's just a more interesting and efficient way to live.
However, usually a minority group's right to option one is supported or denied on the grounds of whether they can help being different or not. If you want someone to be responsible for your bad behavior toward them, you argue that they are being different on purpose.
One example I can think of is people who are against gay marriage and go around saying, "But gay people already CAN get married! They can marry the opposite sex!" This puts the blame on gay people for not changing our needs to match the majority. I also saw someone who, when asked if gay people were allowed in their religion, said that we probably wouldn't be interested in joining anyway. This implies that if people wanted to not be excluded for being different, we just wouldn't be different.
There is also the whole idea that poor people are poor because of some kind of moral failing and everyone who tries not to be poor isn't. Therefore not helping people who are poor is supposed to be tough love encouraging them to straighten up and become rich.
When people argue for option one, they say that the difference is involuntary. "I was born gay. If I could take a pill to be straight I would. The idea of kissing a man makes me want to throw up." Etc. What I think about this dichotomy isn't the point because it's so universal. If you try to talk about this stuff in other ways most people will not even know what you're saying. When you say that someone can't help being different, you're almost always indicating that you're on their side.
Therefore you can kind of tell what side someone's on just by how they talk about someone who is different.
Medical and mainstream culture descriptions of autism are steeped in option two language. They are very superficial descriptions of things Autistic people do, with the implication that Autistic people do these things simply because they like them, or for no reason at all.
1. "Autistic people stim" not "Autistic people stim BECAUSE" or "Autistic people have motor/sensory stuff going on that causes them to move like this or be soothed by doing this."
2. "Autistic people avoid eye contact" not "It scares Autistic people to look at other people's eyes."
3. "Autistic people avoid touch" not "Some kinds of touch can scare or hurt Autistic people."
4. "Autistic people have 'splinter skills' and strong interests and like to do the same thing over and over" not "Autistic people can learn specific things better than general things, and see number five."
5. "Autistic people like rituals and are resistant to change" not "Autistic people do better when they are in situations where they know what's going on and what's coming next, to the extent that some people can't handle life at all when it's not like that."
#5 has been on my mind a lot lately because the last few months have involved me having to do a lot of unplanned things and make a lot of sudden transitions. This has reduced my quality of life and my ability to do other stuff, which is clearly because I have a disability that makes it hard for me to emotionally and cognitive cope with surprise and change. However some people would say it's because I want to make out with train schedules.
Some OTHER people would probably say that because professionals don't know exactly why Autistic people do certain things (the reasons I'm giving are from Autistic cultural/anecdotal knowledge, not from books), they have to phrase everything in terms of what an Autistic person chooses to do. First of all, the reason professionals don't know why Autistic people do things is because they usually only study how to to make Autistic people not do things. I think their phrasing shows what they are interested in knowing not what they're able to know.
But I also I just fail to believe that people can't say, "It seems like Autistic people have to do this, for some reason."
I made up an imaginary mobility impaired person and I'm going to tell you a slightly unlikely but not absurdist story about his life. People are a little less likely to blame SOME mobility impaired people for their problems, which is why I think this story helps illustrate my point. But I'm also sure that it has literally happened plenty of times.
An imaginary kid named Sidney learns to walk at the usual age, but he always sits down crying after a few steps. Even when adults try to encourage him, the same thing happens. Sometimes they can bribe him with candy to walk across the room, but he cries while he's walking. When Sidney gets old enough to talk, he confirms that walking more than a few steps really hurts.
Not finding any immediate solutions, Sidney's parents continue to push him around in a stroller. Eventually they get him a wheelchair so he can be more independent. As he grows up, a few things change about how Sidney gets around, but since he is an imaginary person I won't go into detail. The short version is, he grows up to be an almost full time wheelchair user.
No one is able to trace Sidney's problem to a genetic condition or an injury to his legs or brain.
If a doctor describes Sidney's disability as "preferring to use a wheelchair and avoid walking," this doctor is not on Sidney's side. The description fails to acknowledge Sidney's experiences and implies that he's irrational. It doesn't encourage healthcare providers to try and help Sidney with his actual problems--in fact it may mean he can't access services he needs. It doesn't encourage other people to accommodate Sidney's wheelchair. It doesn't encourage Sidney to feel confident in speaking up against injustice, seeking help, and just taking care of his own body.
In many ways, this description of Sidney's disability can physically, emotionally, and socially hurt him. If the doctor says he wants to help people like Sidney, Sidney better watch out.
Showing posts with label behaviorism. Show all posts
Showing posts with label behaviorism. Show all posts
20 November, 2012
25 June, 2012
How Indistinguishability Got Its Groove Back
is something that might someday appear in all its parts and might not. Right now I'm primarily interested in writing about staff infection. Spoiler alert though: the answer to "how did indistinguishability get its groove back?" is exactly that.
Or like I said before: it never really lost it.
I think there are two reasons "staff"--very broadly defined as doctors, teachers, therapists, aides, and a million other people--end up trying to control people with disabilities.
1. They believe people with disabilities inherently need to be controlled.
2. They get in a position of power because of people with disabilities' support needs and/or youth, and have the opportunity to make people with disabilities more convenient to deal with.
Whichever reason is not your reason can be used as a straw reason to support the real reason. I could give examples but basically you know it when you see it. Doing this relates to the Harder Fallacy and Shocking Behavior and things like that.
The way indistinguishability got its groove back is that a person with power looked at a person diagnosed with autism and decided they didn't like the way person's body looked or the way the person felt about things. Or (I say when I get angry) the way the person said no.
The person with power started trying to change the person with autism's body (or whatever). The person with autism couldn't defend themselves because they couldn't talk. Or, if they could, other people felt their beliefs, opinions, and arguments were inherently weaker than those of people without disabilities.
The person with power told their coworkers or their employees or the other people in their field to do the same thing. They by and large did.
Occasionally someone was bothered by it but afraid of losing their job, being seen as a pushover by their coworkers, or not being respected by other autism scientists. But most people weren't bothered. Maybe the original person with power was very charismatic and converted them. Maybe they already didn't like how the person with autism's body looked. Maybe they just didn't think about it, accepted it as part of their job, and eventually came to be a little passionate about its rightness. After all, no one was trying to change their bodies.
When I say this happened once I mean that people in power make this decision about people with autism on a regular basis. Probably as you are reading this a person is deciding to be this way, and their decision will spread because it doesn't occur to many people to question it.
To some extent this is true about any decision within that dynamic. Let's say someone decided that all kids with a certain disability have to play soccer, or read Tarot cards. I think this would actually catch on to a greater degree than you would expect. But indistinguishability is such a historically popular thing for people in power to choose to force on disabled people that it has a kind of momentum. You just think about it and it's already there.
Every person in power who unthinkingly chooses or supports indistinguishability is adding to its mass. It's an army of laziness, an army (usually) of feeling safe in your body. Of being able to talk about how much you love The Office in between sessions of training a kid with autism not to make jokes that don't have an obvious punchline. It's easy to do pretty much anything to people with disabilities but indistinguishability has an army.
The pressure of the army makes room for more soldiers. Obviously. This has all been an excuse for a pun. The way indistinguishability got its groove back is that indistinguishability actually is a groove being worn into the fabric of society by sheer constance and bullheadedness. Have a nice day.
Or like I said before: it never really lost it.
I think there are two reasons "staff"--very broadly defined as doctors, teachers, therapists, aides, and a million other people--end up trying to control people with disabilities.
1. They believe people with disabilities inherently need to be controlled.
2. They get in a position of power because of people with disabilities' support needs and/or youth, and have the opportunity to make people with disabilities more convenient to deal with.
Whichever reason is not your reason can be used as a straw reason to support the real reason. I could give examples but basically you know it when you see it. Doing this relates to the Harder Fallacy and Shocking Behavior and things like that.
The way indistinguishability got its groove back is that a person with power looked at a person diagnosed with autism and decided they didn't like the way person's body looked or the way the person felt about things. Or (I say when I get angry) the way the person said no.
The person with power started trying to change the person with autism's body (or whatever). The person with autism couldn't defend themselves because they couldn't talk. Or, if they could, other people felt their beliefs, opinions, and arguments were inherently weaker than those of people without disabilities.
The person with power told their coworkers or their employees or the other people in their field to do the same thing. They by and large did.
Occasionally someone was bothered by it but afraid of losing their job, being seen as a pushover by their coworkers, or not being respected by other autism scientists. But most people weren't bothered. Maybe the original person with power was very charismatic and converted them. Maybe they already didn't like how the person with autism's body looked. Maybe they just didn't think about it, accepted it as part of their job, and eventually came to be a little passionate about its rightness. After all, no one was trying to change their bodies.
When I say this happened once I mean that people in power make this decision about people with autism on a regular basis. Probably as you are reading this a person is deciding to be this way, and their decision will spread because it doesn't occur to many people to question it.
To some extent this is true about any decision within that dynamic. Let's say someone decided that all kids with a certain disability have to play soccer, or read Tarot cards. I think this would actually catch on to a greater degree than you would expect. But indistinguishability is such a historically popular thing for people in power to choose to force on disabled people that it has a kind of momentum. You just think about it and it's already there.
Every person in power who unthinkingly chooses or supports indistinguishability is adding to its mass. It's an army of laziness, an army (usually) of feeling safe in your body. Of being able to talk about how much you love The Office in between sessions of training a kid with autism not to make jokes that don't have an obvious punchline. It's easy to do pretty much anything to people with disabilities but indistinguishability has an army.
The pressure of the army makes room for more soldiers. Obviously. This has all been an excuse for a pun. The way indistinguishability got its groove back is that indistinguishability actually is a groove being worn into the fabric of society by sheer constance and bullheadedness. Have a nice day.
16 August, 2011
How Indistinguishability Got Its Groove Back, part 1
My first writing about disability was about an ABA school that I interned at when I was 20, which was a very ableist and passing-obsessed environment. Being in that environment I was forced to confront things I'd tried not to think about.
I remember when I first started writing about this kind of thing I was very careful to say that I wasn't anti-ABA and thought ABA could be really helpful and useful. I've kind of dropped that whole thing, not because I'm against behaviorism--I arguably am a behaviorist--but because I guess I am against any school or therapist who identifies as "ABA." ABA is technically a way of teaching, not what is taught, but it has historically been associated with physical punishment and it still is very much associated with passing. So I tend to make certain assumptions about anyone who identifies with the label ABA without trying to apologize for or justify it.
Recently my dad was trying to convince me to work at a very old, famous ABA program, because of the benefits. When I pointed out that the person the program is named after used to give electric shocks to children to stop them from flapping their hands, my dad told me that he had researched this on the Internet and "they don't do that anymore." But this isn't enough for me.
It's not enough for professionals to refrain from the most obviously abusive practices, especially if they identify themselves with the doctor who introduced those practices. If you're going to work in an area that has that kind of history, you have to address that history. It's not enough to just stop hitting kids because you shouldn't hit kids--you have to think about why people like you were hitting kids in the first place, and how they got to a point where they decided it was okay, and how you might end up getting to a similar point.
I remember when I first started writing about this kind of thing I was very careful to say that I wasn't anti-ABA and thought ABA could be really helpful and useful. I've kind of dropped that whole thing, not because I'm against behaviorism--I arguably am a behaviorist--but because I guess I am against any school or therapist who identifies as "ABA." ABA is technically a way of teaching, not what is taught, but it has historically been associated with physical punishment and it still is very much associated with passing. So I tend to make certain assumptions about anyone who identifies with the label ABA without trying to apologize for or justify it.
Recently my dad was trying to convince me to work at a very old, famous ABA program, because of the benefits. When I pointed out that the person the program is named after used to give electric shocks to children to stop them from flapping their hands, my dad told me that he had researched this on the Internet and "they don't do that anymore." But this isn't enough for me.
It's not enough for professionals to refrain from the most obviously abusive practices, especially if they identify themselves with the doctor who introduced those practices. If you're going to work in an area that has that kind of history, you have to address that history. It's not enough to just stop hitting kids because you shouldn't hit kids--you have to think about why people like you were hitting kids in the first place, and how they got to a point where they decided it was okay, and how you might end up getting to a similar point.
22 November, 2010
yeah so I want to use the r-word in a story I'm writing
and I'm going to use it in this post so be warned.
I'm not actually going to use it in the story I turn in to my workshop, because last time I turned in a draft of this story it was the most awful experience ever. Basically I wrote a story about a 12-year-old boy who goes to a behaviorist school for kids with autism (but no disability-related words are used in the story, because no one has outright told him he's disabled). The boy is obsessed with lions and with the idea that he's slowly turning into a lion and will grow up to be one; his parents and teachers try to discourage his interest. He also has a lot of meltdowns and the story ends with him having a violent, swearing meltdown at school and having all his lion paraphernalia taken away as punishment.
So, everyone in my class got exactly that out of the story. A disabled kid doesn't understand he's disabled and can't control himself. (Some of them also made comments that outright assumed I wasn't disabled.) What I turned in was a really rough draft but I felt really positive about the germ of the story, and I felt depressed because almost no one reacted to it or related to it at all.
I sent the story to some of my friends who are good on disability stuff and asked them what they made of it. They got out a lot of the things I was putting in: the main character is faced with adults who try to control him, while his non-disabled twin is more wholly nurtured and accepted; identifying with lions is a way of feeling powerful and dealing with the fact that he feels like he's not human. My friend Laura wrote, "it seemed like he loved this thing/lions and nobody understands that it's something to just love and so they try to make it out to be a problem and to use it to get him to behave how they want him to... i think it seemed like a lot of it was about behavior modification and the loneliness of being told to act a certain way when you're just not naturally inclined to."
Which made me love her so much. I know it's only a workshop, but I've been in workshops for years, you know, and I've never had one hurt before.
I'm trying to write a more clear-to-my-class version of the story and the way I'm doing that is by having most of the story take place when the main character, S., is 17. The point of doing this is that by this age he would be aware of his diagnosis and stuff (in the original draft, I was trying to show that he hadn't been told about his diagnosis, but still sensed how he was being treated; but I think people just took it as typical "disabled person doesn't understand" stuff). It is also cool though because I get to address some issues of passing as ethics and passing as cure. I'm having trouble writing the story because I want S. to express his resentment of the way he was treated when he was a kid, but he's very isolated and doesn't have a lot of people he can talk about those things to. And he's also not quite sure how he feels about a lot of it.
But anyway, S. has been in a mainstream school for four or five years, and his main activity is selling his medication and making drugs for people. (The story has some magic realism elements so he's invented his own drug.) He finds this comforting, probably because he has something that other people want; he frequently accepts little or no payment even when he could ask for a lot of money. It's just what he does.
S.'s parents don't know about this and see him as a success. S. realizes that his mom has started referring to him and his sister as "the twins" when she never referred to them as a unit before. There is some anxiety about how S. is going to apply to college because his years in special ed may make him look "unstable" or like he's not capable of doing college work. But overall he has a sense of finally being someone his parents can be proud of. He goes to a normal school, he looks normal, he acts normal (with the kids he gives drugs to, he's intentionally weird and cold, and they see him as a creep; but he sort of likes that, because he's controlling their view of him).
But he is, you know, pretty masochistic with the whole throwing away opportunities to make money thing. And he doesn't really have any friends.
He desperately misses his best friend from special ed, but his friend is on a completely different life trajectory; he's still quite visibly disabled and needs help doing things. S. has no idea of what a friendship between them would look like now that one of them is supposedly normal. When he runs into his old friend, he lies to his friend's staff about how they know each other.
S. meets up with the head of his old school, and is overwhelmed by memories of trying to bite her, having her analyze and remake the way he walked, having her snap at him and take away his lions--but she's completely friendly, as if they are family members or old neighbors. S. falls into compliance, finds himself following her lead, trying to make himself sound even more successful than she already thinks he is. Wants to ask her why she cared how he walked or what was wrong with lions, but those kinds of questions don't belong in her world. He feels stupid even thinking them.
S.'s twin R., who is in boarding school and isn't around much, is the only person he's really close to. She's always known him roughly the way he is and when she comes home for Christmas he manages to tell her some of the things he's thinking about.
Anyway, for some reason I have this scene in my head: S. makes some comment about how he now looks normal. R. says, thinking nothing of it, that he doesn't. S. is really offended and scared. R. says that S. doesn't look normal to her because he's her brother, he just looks like her brother. And besides, he always says he doesn't want people to like him anyway, so it doesn't matter if he looks normal, right?
"That's retarded," S. says. "That's a retarded thing to say."
Now, the reason I won't really put this in my story is because I think people in my class may just throw this word around in their lives without thinking of it as hate speech. And I want S. to use it as hate speech. I will explain.
I feel a very intense urge sometimes to use the word about myself. Usually in some kind of school or work situation where someone is patronizing me or has failed to understand the nature of what I can and can't do. The sentence I want to say comes in two forms:
"I'm not retarded," when someone is explaining something they think I don't understand. And, more commonly:
"Yeah, I'm retarded, sorry" (little laugh)
because when things are really hard and someone is obviously kind of annoyed with you or thinks you're lazy or lacking insight/knowledge about basic things, you just...hate yourself. And them. And you're supposed to say, "yeah, I'm sort of slow, sorry," "oh yeah I'm kind of a space cadet." Like it's something small, and cute.
But it's not fucking small.
The word retarded is the most vicious word I can think of to quietly and passively explain myself. The reason I find myself wanting to use it is because it feels almost on the level of physically hurting myself or the other person, which are things I do not believe in doing (well the first one happens sometimes). And it doesn't seem like such a big deal to most people to say that word. But to me it feels like punching myself in the head, and sometimes I want to feel that way.
I'm not actually going to use it in the story I turn in to my workshop, because last time I turned in a draft of this story it was the most awful experience ever. Basically I wrote a story about a 12-year-old boy who goes to a behaviorist school for kids with autism (but no disability-related words are used in the story, because no one has outright told him he's disabled). The boy is obsessed with lions and with the idea that he's slowly turning into a lion and will grow up to be one; his parents and teachers try to discourage his interest. He also has a lot of meltdowns and the story ends with him having a violent, swearing meltdown at school and having all his lion paraphernalia taken away as punishment.
So, everyone in my class got exactly that out of the story. A disabled kid doesn't understand he's disabled and can't control himself. (Some of them also made comments that outright assumed I wasn't disabled.) What I turned in was a really rough draft but I felt really positive about the germ of the story, and I felt depressed because almost no one reacted to it or related to it at all.
I sent the story to some of my friends who are good on disability stuff and asked them what they made of it. They got out a lot of the things I was putting in: the main character is faced with adults who try to control him, while his non-disabled twin is more wholly nurtured and accepted; identifying with lions is a way of feeling powerful and dealing with the fact that he feels like he's not human. My friend Laura wrote, "it seemed like he loved this thing/lions and nobody understands that it's something to just love and so they try to make it out to be a problem and to use it to get him to behave how they want him to... i think it seemed like a lot of it was about behavior modification and the loneliness of being told to act a certain way when you're just not naturally inclined to."
Which made me love her so much. I know it's only a workshop, but I've been in workshops for years, you know, and I've never had one hurt before.
I'm trying to write a more clear-to-my-class version of the story and the way I'm doing that is by having most of the story take place when the main character, S., is 17. The point of doing this is that by this age he would be aware of his diagnosis and stuff (in the original draft, I was trying to show that he hadn't been told about his diagnosis, but still sensed how he was being treated; but I think people just took it as typical "disabled person doesn't understand" stuff). It is also cool though because I get to address some issues of passing as ethics and passing as cure. I'm having trouble writing the story because I want S. to express his resentment of the way he was treated when he was a kid, but he's very isolated and doesn't have a lot of people he can talk about those things to. And he's also not quite sure how he feels about a lot of it.
But anyway, S. has been in a mainstream school for four or five years, and his main activity is selling his medication and making drugs for people. (The story has some magic realism elements so he's invented his own drug.) He finds this comforting, probably because he has something that other people want; he frequently accepts little or no payment even when he could ask for a lot of money. It's just what he does.
S.'s parents don't know about this and see him as a success. S. realizes that his mom has started referring to him and his sister as "the twins" when she never referred to them as a unit before. There is some anxiety about how S. is going to apply to college because his years in special ed may make him look "unstable" or like he's not capable of doing college work. But overall he has a sense of finally being someone his parents can be proud of. He goes to a normal school, he looks normal, he acts normal (with the kids he gives drugs to, he's intentionally weird and cold, and they see him as a creep; but he sort of likes that, because he's controlling their view of him).
But he is, you know, pretty masochistic with the whole throwing away opportunities to make money thing. And he doesn't really have any friends.
He desperately misses his best friend from special ed, but his friend is on a completely different life trajectory; he's still quite visibly disabled and needs help doing things. S. has no idea of what a friendship between them would look like now that one of them is supposedly normal. When he runs into his old friend, he lies to his friend's staff about how they know each other.
S. meets up with the head of his old school, and is overwhelmed by memories of trying to bite her, having her analyze and remake the way he walked, having her snap at him and take away his lions--but she's completely friendly, as if they are family members or old neighbors. S. falls into compliance, finds himself following her lead, trying to make himself sound even more successful than she already thinks he is. Wants to ask her why she cared how he walked or what was wrong with lions, but those kinds of questions don't belong in her world. He feels stupid even thinking them.
S.'s twin R., who is in boarding school and isn't around much, is the only person he's really close to. She's always known him roughly the way he is and when she comes home for Christmas he manages to tell her some of the things he's thinking about.
Anyway, for some reason I have this scene in my head: S. makes some comment about how he now looks normal. R. says, thinking nothing of it, that he doesn't. S. is really offended and scared. R. says that S. doesn't look normal to her because he's her brother, he just looks like her brother. And besides, he always says he doesn't want people to like him anyway, so it doesn't matter if he looks normal, right?
"That's retarded," S. says. "That's a retarded thing to say."
Now, the reason I won't really put this in my story is because I think people in my class may just throw this word around in their lives without thinking of it as hate speech. And I want S. to use it as hate speech. I will explain.
I feel a very intense urge sometimes to use the word about myself. Usually in some kind of school or work situation where someone is patronizing me or has failed to understand the nature of what I can and can't do. The sentence I want to say comes in two forms:
"I'm not retarded," when someone is explaining something they think I don't understand. And, more commonly:
"Yeah, I'm retarded, sorry" (little laugh)
because when things are really hard and someone is obviously kind of annoyed with you or thinks you're lazy or lacking insight/knowledge about basic things, you just...hate yourself. And them. And you're supposed to say, "yeah, I'm sort of slow, sorry," "oh yeah I'm kind of a space cadet." Like it's something small, and cute.
But it's not fucking small.
The word retarded is the most vicious word I can think of to quietly and passively explain myself. The reason I find myself wanting to use it is because it feels almost on the level of physically hurting myself or the other person, which are things I do not believe in doing (well the first one happens sometimes). And it doesn't seem like such a big deal to most people to say that word. But to me it feels like punching myself in the head, and sometimes I want to feel that way.
12 November, 2010
9. Mindfulness and modulation (being practiced, and not practiced, by professionals)
When I think of mindfulness and modulation, I think of floortime. When someone uses floortime, they try to engage with someone who has a disability by engaging with the things that are important to that person, like games, stims, and special interests. If the person doesn't respond to you in obvious ways, you try to get a response by acting differently, or doing something that you know will provoke a response (like picking up something they are playing with so they'll have to take it back from you). I do think reading Greenspan has been helpful for me because it gives specific examples of how to apply this philosophy, but when I hear people acting as if floortime (and its less awesome and inexplicably expensive counterpart, Son-Rise) is some kind of complicated scientific theory, I wonder how those people normally treat other people in their regular lives.
Right now I occasionally get to work with some late childhood/preteen-age kids with ASD, who don't tend to be verbal unless it's required. If I go into a room and see a bunch of kids with ASD (or a bunch of people any age with anything, actually) who are all kind of keeping to themselves and playing/looking at different things by themselves, my immediate reaction is:
1. Go stand or sit near someone but don't get super in their space
2. Maybe mumble about something or other related to what they're doing
3. Try to touch some of the things they are playing with, like if they are playing with trains, pick up a train piece they're not using and offer it to them
4. If they try to hug me or touch my hair or whatever, I try to touch their hair or tickle them or something and proceed based on whether they seem to like this
5. And so on
Once I saw two nonverbal kids with Down Syndrome playing some kind of game which consisted of standing near each other, not looking at each other, but making advances into the other's space (like sticking their arm out), then physically moving the other person's arm down. So I started sticking my arm out to see if they would let me be in the game. I don't really see how this isn't the obvious way to react in that situation.
I mean seriously, it actually makes me concerned that people think there is something weird or groundbreaking about such a basic way of relating to other people. This stuff doesn't always have some amazing effect (it definitely doesn't "cure" anything like Son-Rise claims, which is why Son-Rise is so dumb) but I have had lots of nice interactions/connections with nonverbal people who, if I was stupid enough to go up to them and ask "Hi, how are you?" and expect eye contact and a handshake, would probably strike me as not being interested in people.
It is pretty interesting, if reading other people and changing your behavior to fit them is such a basic skill for people without autism, that people need to even be told about floortime or related methods at all (and that an abnormal person like me finds it really intuitive, at least in its purest forms).
It is also interesting, although I totally admit I'm straying really far from my original "social skills don't exist" germ, to observe the lack of flexibility, compassion, or modulation in a very strict behaviorist program that discourages people with autism from stimming, having special interests, or avoiding eye contact. Especially when behaviorists will say that their clients with autism are being lazy or not paying attention, or intentionally causing trouble, when the person does things like avoiding eye contact, stimming, banging their head, screaming, etc., instead of thinking that perhaps the person is just behaving neutrally, or is even expressing that they are really upset. Many behaviorists cannot read other people's emotions very well.
Right now I occasionally get to work with some late childhood/preteen-age kids with ASD, who don't tend to be verbal unless it's required. If I go into a room and see a bunch of kids with ASD (or a bunch of people any age with anything, actually) who are all kind of keeping to themselves and playing/looking at different things by themselves, my immediate reaction is:
1. Go stand or sit near someone but don't get super in their space
2. Maybe mumble about something or other related to what they're doing
3. Try to touch some of the things they are playing with, like if they are playing with trains, pick up a train piece they're not using and offer it to them
4. If they try to hug me or touch my hair or whatever, I try to touch their hair or tickle them or something and proceed based on whether they seem to like this
5. And so on
Once I saw two nonverbal kids with Down Syndrome playing some kind of game which consisted of standing near each other, not looking at each other, but making advances into the other's space (like sticking their arm out), then physically moving the other person's arm down. So I started sticking my arm out to see if they would let me be in the game. I don't really see how this isn't the obvious way to react in that situation.
I mean seriously, it actually makes me concerned that people think there is something weird or groundbreaking about such a basic way of relating to other people. This stuff doesn't always have some amazing effect (it definitely doesn't "cure" anything like Son-Rise claims, which is why Son-Rise is so dumb) but I have had lots of nice interactions/connections with nonverbal people who, if I was stupid enough to go up to them and ask "Hi, how are you?" and expect eye contact and a handshake, would probably strike me as not being interested in people.
It is pretty interesting, if reading other people and changing your behavior to fit them is such a basic skill for people without autism, that people need to even be told about floortime or related methods at all (and that an abnormal person like me finds it really intuitive, at least in its purest forms).
It is also interesting, although I totally admit I'm straying really far from my original "social skills don't exist" germ, to observe the lack of flexibility, compassion, or modulation in a very strict behaviorist program that discourages people with autism from stimming, having special interests, or avoiding eye contact. Especially when behaviorists will say that their clients with autism are being lazy or not paying attention, or intentionally causing trouble, when the person does things like avoiding eye contact, stimming, banging their head, screaming, etc., instead of thinking that perhaps the person is just behaving neutrally, or is even expressing that they are really upset. Many behaviorists cannot read other people's emotions very well.
01 November, 2010
Autistics Speaking Day post
The other day my mom showed me some articles in the newspaper about autism. Midway through one article (http://www.thestamfordtimes.com/story/492905), I read this:
One of the center's clients, a Rowayton resident who wanted to remain anonymous, said her daughter used to avoid eye contact and, like many autistic kids, repetitively flapped her arms and walked on her toes. The client's daughter has been working with Rohdie for a number of years, and when asked what challenges the behavior analyst and now the Southfield Center has helped her daughter overcome, the client said "Oh my God, everything."
"You would never be able to tell she was autistic," the client said, adding that, with the help of Rohdie and other professionals in the field, avoiding eye contact, flapping and toe walking issues have stopped for her daughter.
This kind of attitude from parents and professionals makes me want to scream.
I generally don't like writing about my disability experience in much detail. I'll just say that a) a lot of important things are hard for me to do consistently and independently, b) I have severe anxiety problems, and c) a and b feed into and increase each other. At this point, my dreams for where I might live and what I might do after college are pretty limited which is depressing (and increases my anxiety, ha ha). I think it would be very easy for me to end up in an emotionally and physically dangerous situation, and I'm working hard to avoid that.
A lot of people with autism spectrum disabilities have it way worse than I do--their opportunities for communication may be very minimal, or they may be so overloaded by sensory or emotional experiences that they self-injure and seriously hurt themselves. Younger people with ASD are often bullied, which can result in various kinds of damage. And all people with developmental disabilities are much more likely to be abused.
People with ASD have real problems. That some of us walk on our toes is not one of them. When I read the above quote, I had several thoughts:
1. Passing as non-disabled is not always a good thing because it means that people don't realize you need help, and won't believe you are disabled even if you tell them, because you look "too normal."
2. The experience of living as a passing person can be really isolating and scary because you are constantly trying to hide your reactions, feelings, and body language. It makes you pretty tense and it makes you feel like the people in your life don't really know you.
3. When "not looking autistic" is equated with "being better," that makes it hard for an ASD person (and their parents and professionals) to develop a good set of goals. Instead of goals like, "This problem is making my life harder--how can it be improved?" the goals are like, "I look autistic--how can I hide it?" In the person's mind, goals that are objectively good (like being a kind person, and trying to be happy and successful) become mixed in with the subjective, energy-consuming goal of "not looking autistic." I am still trying to untangle this crap in myself.
4. Some people "stim" (rock back and forth, toe-walk, hop around, run around, vocalize, flap their hands, etc.) because it helps them deal with overwhelming emotions or sensory information. Some people avoid eye contact because eye contact makes them upset. If they stop stimming and start making eye contact, they may be a lot more stressed.
5. Even if 1-4 weren't true, it's still a waste of resources that would be better spent dealing with the real problems that ASD people have.
6. I could try to give these parents and professionals the benefit of the doubt, and say that they're being thoughtless and inefficient. But when I read this stuff, it doesn't just annoy me, it hurts me. It says to me that these people care more about not having to look at a visibly Autistic person than they care about actually helping people with ASD in meaningful ways; that they would rather ASD people suffer in silence than be happy and loud. That doesn't feel like ignorance, it feels like hate.
One of the center's clients, a Rowayton resident who wanted to remain anonymous, said her daughter used to avoid eye contact and, like many autistic kids, repetitively flapped her arms and walked on her toes. The client's daughter has been working with Rohdie for a number of years, and when asked what challenges the behavior analyst and now the Southfield Center has helped her daughter overcome, the client said "Oh my God, everything."
"You would never be able to tell she was autistic," the client said, adding that, with the help of Rohdie and other professionals in the field, avoiding eye contact, flapping and toe walking issues have stopped for her daughter.
This kind of attitude from parents and professionals makes me want to scream.
I generally don't like writing about my disability experience in much detail. I'll just say that a) a lot of important things are hard for me to do consistently and independently, b) I have severe anxiety problems, and c) a and b feed into and increase each other. At this point, my dreams for where I might live and what I might do after college are pretty limited which is depressing (and increases my anxiety, ha ha). I think it would be very easy for me to end up in an emotionally and physically dangerous situation, and I'm working hard to avoid that.
A lot of people with autism spectrum disabilities have it way worse than I do--their opportunities for communication may be very minimal, or they may be so overloaded by sensory or emotional experiences that they self-injure and seriously hurt themselves. Younger people with ASD are often bullied, which can result in various kinds of damage. And all people with developmental disabilities are much more likely to be abused.
People with ASD have real problems. That some of us walk on our toes is not one of them. When I read the above quote, I had several thoughts:
1. Passing as non-disabled is not always a good thing because it means that people don't realize you need help, and won't believe you are disabled even if you tell them, because you look "too normal."
2. The experience of living as a passing person can be really isolating and scary because you are constantly trying to hide your reactions, feelings, and body language. It makes you pretty tense and it makes you feel like the people in your life don't really know you.
3. When "not looking autistic" is equated with "being better," that makes it hard for an ASD person (and their parents and professionals) to develop a good set of goals. Instead of goals like, "This problem is making my life harder--how can it be improved?" the goals are like, "I look autistic--how can I hide it?" In the person's mind, goals that are objectively good (like being a kind person, and trying to be happy and successful) become mixed in with the subjective, energy-consuming goal of "not looking autistic." I am still trying to untangle this crap in myself.
4. Some people "stim" (rock back and forth, toe-walk, hop around, run around, vocalize, flap their hands, etc.) because it helps them deal with overwhelming emotions or sensory information. Some people avoid eye contact because eye contact makes them upset. If they stop stimming and start making eye contact, they may be a lot more stressed.
5. Even if 1-4 weren't true, it's still a waste of resources that would be better spent dealing with the real problems that ASD people have.
6. I could try to give these parents and professionals the benefit of the doubt, and say that they're being thoughtless and inefficient. But when I read this stuff, it doesn't just annoy me, it hurts me. It says to me that these people care more about not having to look at a visibly Autistic person than they care about actually helping people with ASD in meaningful ways; that they would rather ASD people suffer in silence than be happy and loud. That doesn't feel like ignorance, it feels like hate.
27 October, 2010
I don't have time to write this but I want to talk about instant gratification. It's a reason I'm a behaviorist even though behaviorism is so often terribly applied.
I tend to try things one time and then give up. And I know this seems lazy or greedy or something. But the point is that even getting myself to the beginning of things is so scary and tiring that if the thing doesn't turn out well, it's completely devastating. So things need to work right away.
And I think for some people, the risk that is scary/tiring can be a very small risk, as small as trying to understand what someone else is asking you to do. So, M&Ms.
I tend to try things one time and then give up. And I know this seems lazy or greedy or something. But the point is that even getting myself to the beginning of things is so scary and tiring that if the thing doesn't turn out well, it's completely devastating. So things need to work right away.
And I think for some people, the risk that is scary/tiring can be a very small risk, as small as trying to understand what someone else is asking you to do. So, M&Ms.
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