where it keeps building my hopes up and then, you know, dangling me off of a skyscraper, but never mind.
[note 4/30/11: it's been pointed out on tumblr how incredibly shitty the title/subtitle of this post is. For me to use a stereotype of an abusive relationship to try to make a joke about the DSM is basically to imply that no one who is or was in a REAL abusive relationship, and would not see their life as a joke, is likely to be reading this blog. I'm really sorry.]
Thanks to Sarah posting about it, I realized that a lot of revisions on the DSM-5 website have been updated. This is the ASD page.
I have some trouble with the diagnostic criteria because it's so obsessed with social impairment, and I just really worry that there will be a lot of the same issues with adults getting diagnosed. The way I see things is that a lot of people with autism tend to have a similar kind of history of being socially isolated from childhood to young adulthood, especially at 10-15.* And this is definitely an experience that affects people in a lot of ways and is important and can probably be used pretty effectively to diagnose teenagers and kids. But in my opinion it's not a good idea to say "this is autism" unless you're writing a diagnostic criteria only intended to diagnose very young people.
It's really frustrating that the DSM has again produced a criteria for autism that actually scares me when I read it, because I have to start thinking, "okay, if I need a recent diagnosis ever...where am I going to find someone who can actually do this, who actually knows enough people with autism to have a feel for what it actually is, instead of just going down the list like, 'okay, you can do a normal back and forth conversation, you don't have autism'" (seriously, you just have to miss one social symptom and you're out).
I believe in autism. What a weird thing to say, like it's some kind of ideal--what I mean, though, is that when you look at all these people who have ASD diagnoses, there are a lot of shared experiences and perceptions and impairments. Yes, the diagnosis, and the medical conception, is fucking ridiculous, as evidenced by the fact that so many people who were diagnosed as kids wouldn't be able to be diagnosed as adults, indicating that what was written down as The Disability was just kind of a fairly superficial piece of it--so what professionals mean when they say "autism," I guess I don't think that is real. But I do believe that I am a particular kind of disabled person because I've felt and seen that.
It's just really hard, because I frequently feel like the only people I can trust are other people with autism. I guess a lot of disabled people feel this way, but it's just scary to think about how much professionals don't have our back.
Speaking of being scared, I am, a lot. In fact, I perfectly fit the DSM criteria for Generalized Anxiety Disorder, except for the fact that people with ASD can't be diagnosed with GAD. I looked up the proposed GAD revisions to see if this has been changed, but it's still the same. For a minute I thought that GAD in someone with autism could be diagnosed as Anxiety Disorder Due to a General Medical Condition, but I'm pretty sure this is only applicable to physical illnesses.
This requirement has always baffled me, since, even though a lot of people with ASD do have all the symptoms of GAD, these symptoms aren't actually part of the ASD diagnosis. So my understanding is that if someone with ASD who has all the symptoms of GAD needed accommodations or services due to their anxiety, they would not have a diagnosis that supported those accommodations or services because anxiety is not mentioned in the ASD criteria; and they also wouldn't be able to go get a diagnosis of GAD, since these symptoms are supposed to be somehow covered by ASD.** Even though they're actually not.
So it's like, apparently anxiety is recognized as related enough to ASD that it can't be considered a separate disability, but it's not related enough to actually officially include in the ASD diagnosis? Wow thanks for completely fucking us every which way! That's baller.
If someone tells me I'm misunderstanding how this works--what it means for diagnoses to exclude other diagnoses--I'd be so into that. It's the kind of thing about which I end up feeling sort of sad and sick because it can be so damaging to people in real life. But if I'm right, I'd like to tell you about some other stuff that both isn't in the diagnostic criteria for ASD and isn't allowed to be diagnosed as a separate disorder in someone who's already diagnosed with ASD.
Disorganized speech, if coupled with either catatonia or what are called "negative symptoms" (flat affect, avolition, asociality), is enough for a person to be diagnosed with schizophrenia--as long as the person doesn't use drugs, doesn't have episodes of a mood disorder at the same time, and doesn't have autism. People with autism are only allowed to be schizophrenic if they also have "prominent delusions or hallucinations."
Impairing or distressing thoughts about self-injury are enough for a person to be diagnosed with Non-Suicidal Self Injury or Non-Suicidal Self Injury NOS (the NOS is for people who have done it less than five times in the past year, but regularly think about it) but neither diagnosis can be received if "the behavior [can] be accounted for by another mental or medical disorder (i.e., psychotic disorder, pervasive developmental disorder, mental retardation, Lesch-Nyhan Syndrome)." They've already ruled out the act of self-injuring as part of stimming, so that is not what they mean by saying ASD and ID can "account for" self-injury.
You also can't be diagnosed with social phobia if your symptoms of social phobia are part of the symptoms of your ASD. And no, of course they don't explain what this means. And you can't be diagnosed with hoarding if you hoard things related to your special interest? I'm actually not going to go through the whole DSM website because it's making me depressed. Maybe I'm in a depressed mood, but I don't think I was before. I just have way too much faith in professionals I guess and it's always just like...you know. Skyscraper times.
(*I guess, in the interests of accuracy, I should say that I'm referring to people whose only developmental disability is autism and who tend to grow up with and socialize mostly with non-disabled people. I'm not sure if there's as much isolation for people with autism who also have intellectual disabilities and tend to socialize with other people who have intellectual disabilities--I have a few impressions, but they're not really enough to go on, and it's also not my experience.)
(**Of course I'm aware that some diagnosticians ignore these parts of the DSM, and will diagnose someone with GAD and autism, or whatever, if it makes sense to do so--but I'd rather not have to trust them to know to make that call.)
(Also, one good thing that I noticed is that you can have ADHD and autism now, which wasn't the case before.)
Showing posts with label dsm. Show all posts
Showing posts with label dsm. Show all posts
29 January, 2011
18 October, 2010
take one
I have been thinking about the interesting fact that I am now as developmentally disabled as I'm ever going to be unless I get hit by a car in the next three weeks. Which is to say, people who receive brain injuries before the age of 22 have those injuries classified as a developmental disability. Since I found this out a few years ago, I have occasionally thought about it because I often get confused when I am driving and crossing the street. It would just take a minute and then I'd have two developmental disabilities instead of one.
I think this is just a fact that has stuck with me. Obviously the possibility of acquiring another disability will exist for me all my life. And just as one sometimes thinks, "I wonder what if I decided to be a pastor," "I wonder what if I decided to be a social worker," "I wonder what if I got married to someone who isn't a US citizen" (although regarding a lot of the job things, I try not to think too hard because I think I couldn't do most jobs and should be satisfied with what I have planned)--I sometimes think, "Oh, I wonder what if I became blind, or had to use a wheelchair."
I'm pretty sure I'm not resourceful enough to be a wheelchair user so that gives me a bit of pause (as soon as I encountered something that wasn't accessible, I would just go home) but in terms of having to use other mobility aids, or having a sensory impairment, it's not so different from "what if I was a lawyer, what if I was a living statue." Which I think is unusual and probably offensive. I mean, Real Disabilities are hard. I shouldn't just think of them as being like a different hair color.
But sometimes I do.
***
I was thinking/talking about what it means to be "born disabled." I identify this way and I feel different from people who acquire disabilities or people who have disabilities that only matter in certain contexts (like specific learning disabilities). However, it is certainly the case that I haven't identified as disabled my whole life. I have at times identified as Autistic to various degrees over the past ten years, but I often haven't, and I've identified as disabled for not even really two.
So how can I have been born disabled? If I couldn't walk, I just would be disabled, it wouldn't be a matter of identity.
If I had to make a choice to identify, am I appropriating an identity that isn't mine, that would just automatically be mine if I really deserved it?
I will tell you why I think otherwise--because the decision to identify was and is always like falling asleep. It is a sense of something that was always there that you always wanted, that you thought you weren't allowed and tried, exhaustedly, to stay away from. I didn't grow up not disabled, I grew up Not Disabled.
I grew up different and, by the time I had a modicum of sense, working around something I just didn't look at or name because I thought I was not allowed to call it autism or Asperger's because I didn't act like they were supposed to and must therefore have recovered, and very interested in disability issues but knowing They Were Not Mine (they just drew me for some reason).
Eventually I found out I was allowed to have one and then the other too. Or if you consider Asperger's a weaker identity than autism, and I do, I was allowed to have three things I had always wanted.
When working with people who have more severe developmental disabilities, I find myself wondering if I have any right to think of us as belonging to each other. After all, I can remove myself from this environment, not take any more disability-related jobs, never talk about it again, and just not be disabled. No one has to know. But then when I think of this life I realize that like childhood it would be suffused with a sense of Not Being.
I am not working with those people. I do not look like them. I will do anything not to look like them.
In addition to being unlivable for me, this option simply isn't the same thing as not being disabled.
***
To receive one Asperger's diagnosis can be regarded as a misfortune; two seems like carelessness. Seriously--and is this ever embarrassing--I would like to get rediagnosed because I haven't gotten a diagnosis since I was 14. That's not the most embarrassing part, I mean. But I have a diagnosis preference. I want my other ASD diagnosis, PDD-NOS, the one I got when I was 9. I'm not really willing to admit this out loud to my parents, but I want to find a doctor who will give me a PDD-NOS diagnosis.
I can't believe I'm writing this. Who the fuck cares. "It's all autism," as my friend said. The whole reason they are taking the little categories out of the DSM is because they don't mean anything and lots of people could end up with at least two of them depending on which doctors they go to. Some people could end up with all three.
I know, but like, even though I know it's all autism that doesn't mean other people do. "Hi I have autism." "Oh you have Asperger's you mean." "No autism." "But you must have Asperger's..." (Oh fuck, I do, why don't I just say it and let myself fall into a whole pop culture mess where I am just a socially awkward genius and there is no room for me to say, actually, I am afraid to live alone because it is so hard to initiate action including eating, moving, etc.; also my anxiety is sort of a little like using a wheelchair because I know there are buildings I just can't go into and that's that. But I guess I look pretty normal, all things considered, compared to what you've seen on TV) "...and it must be very mild because you're looking me in the eye." (which hurts but whatever it only matters how you look, but then INSPIRATION STRIKES) "Well, actually my diagnosis is called Pervasive Developmental Disorder Not Otherwise Specified and it means atypical autism. I don't have Asperger's. I have autism. But I mean, we all do. It's not that simple."
I know this is ridiculous, but it's sort of my lifeline. I know it's an incredibly stupid reason to want a particular diagnosis, I mean we all have atypical autism and it sounds like I think I'm more atypical than people who have Autistic Disorder or Asperger's. But I'm just worse at talking than some people, and better at passing than others, and if I have to use that horrible word Asperger's to talk about myself, I might as well not talk about myself at all.
***
I want to fall into disability. I want to fall into community. I want it not to be something I have to say out loud or prove. I don't want to have to make decisions about forcing myself into a visibility that many people ignore or don't accept or downplay, anyway.
I think, as bad as I feel for saying this, that if it was just something people could see, if it was just something I could obviously never do instead of this set of problems rearranging themselves in endless useless patterns. If I could just state my identity or ask for help; if I could just not do things that hurt, and even if I do them, it would just be something I did one time. It wouldn't mean I am better.
I think this is just a fact that has stuck with me. Obviously the possibility of acquiring another disability will exist for me all my life. And just as one sometimes thinks, "I wonder what if I decided to be a pastor," "I wonder what if I decided to be a social worker," "I wonder what if I got married to someone who isn't a US citizen" (although regarding a lot of the job things, I try not to think too hard because I think I couldn't do most jobs and should be satisfied with what I have planned)--I sometimes think, "Oh, I wonder what if I became blind, or had to use a wheelchair."
I'm pretty sure I'm not resourceful enough to be a wheelchair user so that gives me a bit of pause (as soon as I encountered something that wasn't accessible, I would just go home) but in terms of having to use other mobility aids, or having a sensory impairment, it's not so different from "what if I was a lawyer, what if I was a living statue." Which I think is unusual and probably offensive. I mean, Real Disabilities are hard. I shouldn't just think of them as being like a different hair color.
But sometimes I do.
***
I was thinking/talking about what it means to be "born disabled." I identify this way and I feel different from people who acquire disabilities or people who have disabilities that only matter in certain contexts (like specific learning disabilities). However, it is certainly the case that I haven't identified as disabled my whole life. I have at times identified as Autistic to various degrees over the past ten years, but I often haven't, and I've identified as disabled for not even really two.
So how can I have been born disabled? If I couldn't walk, I just would be disabled, it wouldn't be a matter of identity.
If I had to make a choice to identify, am I appropriating an identity that isn't mine, that would just automatically be mine if I really deserved it?
I will tell you why I think otherwise--because the decision to identify was and is always like falling asleep. It is a sense of something that was always there that you always wanted, that you thought you weren't allowed and tried, exhaustedly, to stay away from. I didn't grow up not disabled, I grew up Not Disabled.
I grew up different and, by the time I had a modicum of sense, working around something I just didn't look at or name because I thought I was not allowed to call it autism or Asperger's because I didn't act like they were supposed to and must therefore have recovered, and very interested in disability issues but knowing They Were Not Mine (they just drew me for some reason).
Eventually I found out I was allowed to have one and then the other too. Or if you consider Asperger's a weaker identity than autism, and I do, I was allowed to have three things I had always wanted.
When working with people who have more severe developmental disabilities, I find myself wondering if I have any right to think of us as belonging to each other. After all, I can remove myself from this environment, not take any more disability-related jobs, never talk about it again, and just not be disabled. No one has to know. But then when I think of this life I realize that like childhood it would be suffused with a sense of Not Being.
I am not working with those people. I do not look like them. I will do anything not to look like them.
In addition to being unlivable for me, this option simply isn't the same thing as not being disabled.
***
To receive one Asperger's diagnosis can be regarded as a misfortune; two seems like carelessness. Seriously--and is this ever embarrassing--I would like to get rediagnosed because I haven't gotten a diagnosis since I was 14. That's not the most embarrassing part, I mean. But I have a diagnosis preference. I want my other ASD diagnosis, PDD-NOS, the one I got when I was 9. I'm not really willing to admit this out loud to my parents, but I want to find a doctor who will give me a PDD-NOS diagnosis.
I can't believe I'm writing this. Who the fuck cares. "It's all autism," as my friend said. The whole reason they are taking the little categories out of the DSM is because they don't mean anything and lots of people could end up with at least two of them depending on which doctors they go to. Some people could end up with all three.
I know, but like, even though I know it's all autism that doesn't mean other people do. "Hi I have autism." "Oh you have Asperger's you mean." "No autism." "But you must have Asperger's..." (Oh fuck, I do, why don't I just say it and let myself fall into a whole pop culture mess where I am just a socially awkward genius and there is no room for me to say, actually, I am afraid to live alone because it is so hard to initiate action including eating, moving, etc.; also my anxiety is sort of a little like using a wheelchair because I know there are buildings I just can't go into and that's that. But I guess I look pretty normal, all things considered, compared to what you've seen on TV) "...and it must be very mild because you're looking me in the eye." (which hurts but whatever it only matters how you look, but then INSPIRATION STRIKES) "Well, actually my diagnosis is called Pervasive Developmental Disorder Not Otherwise Specified and it means atypical autism. I don't have Asperger's. I have autism. But I mean, we all do. It's not that simple."
I know this is ridiculous, but it's sort of my lifeline. I know it's an incredibly stupid reason to want a particular diagnosis, I mean we all have atypical autism and it sounds like I think I'm more atypical than people who have Autistic Disorder or Asperger's. But I'm just worse at talking than some people, and better at passing than others, and if I have to use that horrible word Asperger's to talk about myself, I might as well not talk about myself at all.
***
I want to fall into disability. I want to fall into community. I want it not to be something I have to say out loud or prove. I don't want to have to make decisions about forcing myself into a visibility that many people ignore or don't accept or downplay, anyway.
I think, as bad as I feel for saying this, that if it was just something people could see, if it was just something I could obviously never do instead of this set of problems rearranging themselves in endless useless patterns. If I could just state my identity or ask for help; if I could just not do things that hurt, and even if I do them, it would just be something I did one time. It wouldn't mean I am better.
28 March, 2010
I support Ari Ne'eman, part two
Hi.
I am an ASD person. But, something that I think is equally important, if not more so: for a few years I have volunteered with people who have mild, moderate, and severe developmental disabilities. I know a lot of DD people with different levels of impairment. I want to work with severely DD people after I graduate from college.
I care very much about people who are not "high-functioning," and I wouldn't support Ari if I didn't think he felt the same way. I used to not like him very much because I had gotten the impression that he was one of those "a dash of autism creates a genius" windbags. I later realized that this wasn't the case and was more a function of the way he was portrayed by popular news outlets, who were more interested in writing a gimmicky article about his disability than expressing what he actually believes and is actually doing. He has worked a lot on keeping people with disabilities from being abused in schools and institutions--an issue which generally affects people who are more severely disabled. He has also made comments that show he is not a Shiny Aspie, for example in this New York Times article from November:
“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity...I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”
The people who have campaigned against his nomination and confirmation are generally people who don't like the idea of ASD people expressing opinions--especially opinions that are anti-cure. They set up being anti-cure as being anti-severely disabled people. But I couldn't disagree more.
I've written several times about a school for ASD kids where I interned last summer. I have a lot of criticisms of the way this school is run, for example the fact that they are anti-stimming. However, because the school has a 1:1 teacher:student ratio and most of the teachers are really devoted to their jobs--plus the highly notable fact that every nonverbal kid gets an AAC device--kids with severe ASD are able to make a lot of progress. Every kid can communicate at least a little using their AAC device and understand schedules and instructions; and there are kids at the school who were nonverbal and have become highly verbal.
In Ohio, I know kids who have problems (including but not limited to ASD) that lead to them having trouble talking, looking at things, and paying attention. They generally don't have a person working with them 1:1 who is doing exactly what is necessary to help the kid pay attention and learn. So, they are way behind the ASD kids at the school where I interned.
The school where I interned is a charter school that kids with Autistic Disorder and PDD-NOS can get into by lottery, when there's a free space. It has the resources to serve 28 students. If you're a rich person with a severely ASD kid and you can't get them into that school, you can try to put them in a private school. If you're not rich, your kid can go to public school and be in a big special ed class where people will maybe sometimes pay attention to them, occasionally, and maybe that will or won't help your kid learn something or other.
The reason I'm anti-cure...well, I may not be anti-cure theoretically (I don't know if I am) but I am practically....and the reason I'm anti-cure is that there are lots of things you can do to help people with severe disabilities, but there isn't enough money. But there is a lot of money going to research. If everyone was anti-cure, the charter school could serve more than 28 kids.
But I do think ASD mice would be really cute.
I am an ASD person. But, something that I think is equally important, if not more so: for a few years I have volunteered with people who have mild, moderate, and severe developmental disabilities. I know a lot of DD people with different levels of impairment. I want to work with severely DD people after I graduate from college.
I care very much about people who are not "high-functioning," and I wouldn't support Ari if I didn't think he felt the same way. I used to not like him very much because I had gotten the impression that he was one of those "a dash of autism creates a genius" windbags. I later realized that this wasn't the case and was more a function of the way he was portrayed by popular news outlets, who were more interested in writing a gimmicky article about his disability than expressing what he actually believes and is actually doing. He has worked a lot on keeping people with disabilities from being abused in schools and institutions--an issue which generally affects people who are more severely disabled. He has also made comments that show he is not a Shiny Aspie, for example in this New York Times article from November:
“My identity is attached to being on the autism spectrum, not some superior Asperger’s identity...I think the consolidation to one category of autism spectrum diagnosis will lead to better services.”
The people who have campaigned against his nomination and confirmation are generally people who don't like the idea of ASD people expressing opinions--especially opinions that are anti-cure. They set up being anti-cure as being anti-severely disabled people. But I couldn't disagree more.
I've written several times about a school for ASD kids where I interned last summer. I have a lot of criticisms of the way this school is run, for example the fact that they are anti-stimming. However, because the school has a 1:1 teacher:student ratio and most of the teachers are really devoted to their jobs--plus the highly notable fact that every nonverbal kid gets an AAC device--kids with severe ASD are able to make a lot of progress. Every kid can communicate at least a little using their AAC device and understand schedules and instructions; and there are kids at the school who were nonverbal and have become highly verbal.
In Ohio, I know kids who have problems (including but not limited to ASD) that lead to them having trouble talking, looking at things, and paying attention. They generally don't have a person working with them 1:1 who is doing exactly what is necessary to help the kid pay attention and learn. So, they are way behind the ASD kids at the school where I interned.
The school where I interned is a charter school that kids with Autistic Disorder and PDD-NOS can get into by lottery, when there's a free space. It has the resources to serve 28 students. If you're a rich person with a severely ASD kid and you can't get them into that school, you can try to put them in a private school. If you're not rich, your kid can go to public school and be in a big special ed class where people will maybe sometimes pay attention to them, occasionally, and maybe that will or won't help your kid learn something or other.
The reason I'm anti-cure...well, I may not be anti-cure theoretically (I don't know if I am) but I am practically....and the reason I'm anti-cure is that there are lots of things you can do to help people with severe disabilities, but there isn't enough money. But there is a lot of money going to research. If everyone was anti-cure, the charter school could serve more than 28 kids.
But I do think ASD mice would be really cute.
14 March, 2010
No, no, no, no, no
I don't know what to say, you guys. Once a week I'm going to get to go into a school and hang out with kids who can't talk and can't do some other stuff. I guess I'm glad that I know some people who can talk, because talking can be fun, but sometimes I feel like the ratio in my life is a little too biased towards people who can talk, and I'd like to have more people who can't talk, or at least talk differently. The more I think about the kids I met on Thursday who can't talk, the more excited I am for my summer job where I'm going to spend a huge amount of time with people who talk differently or can't talk! And do other kinds of stuff that I think is interesting.
I think I'm not a very good person and I've felt this way for a long time. I think that it's helpful for me to be around people who don't do some of the things that we sometimes incorrectly assume everyone does, that we sometimes assume are part of being a person. This isn't some Lovaas shit, never fear; it's awesome because they are people, because it reminds me of how stupid and fallacious my concepts of existence are. Also, I invariably get reminded of how arrogant and blinkered I can be, when I make some assumption about how much a person can do or understand...and then they do the thing I thought they couldn't do! Which is wonderful. It's amazing to feel so happy about being proven to be a jerk, and I feel like it's sort of the essence of being Christian, or being the kind of person I want to be.
Being with people who don't pass for nondisabled is exciting because I don't have to worry as much about passing, and can sometimes even experiment with trying to go in the opposite direction, to see if the person responds to stimminess and stuff. Overall, it just feels sometimes like a much better, deeper way of being with people, better than the way I feel about being with anyone normal, except my really good friends.
So, I am really prone to flip a shit when I hear or read anything that seems insulting to people who are more severely disabled than people with an Asperger's Syndrome diagnosis. I try to be nice but it's really hard to worry about being nice to the person I'm talking to when everything they're saying seems either like it's mean to more severely disabled people, or like it's trying to erase them. I don't see Michael John Carley, Temple Grandin, et. al, as people who just have a different opinion that I should respect. Because if everyone's being so respectful, where the fuck is the respect for people who can't talk and wear diapers? Talking about respect just implies a world where everyone can do those things, where the only people being insulted are hypothetical. That is not the world I live in, or even want to live in.
I think I'm not a very good person and I've felt this way for a long time. I think that it's helpful for me to be around people who don't do some of the things that we sometimes incorrectly assume everyone does, that we sometimes assume are part of being a person. This isn't some Lovaas shit, never fear; it's awesome because they are people, because it reminds me of how stupid and fallacious my concepts of existence are. Also, I invariably get reminded of how arrogant and blinkered I can be, when I make some assumption about how much a person can do or understand...and then they do the thing I thought they couldn't do! Which is wonderful. It's amazing to feel so happy about being proven to be a jerk, and I feel like it's sort of the essence of being Christian, or being the kind of person I want to be.
Being with people who don't pass for nondisabled is exciting because I don't have to worry as much about passing, and can sometimes even experiment with trying to go in the opposite direction, to see if the person responds to stimminess and stuff. Overall, it just feels sometimes like a much better, deeper way of being with people, better than the way I feel about being with anyone normal, except my really good friends.
So, I am really prone to flip a shit when I hear or read anything that seems insulting to people who are more severely disabled than people with an Asperger's Syndrome diagnosis. I try to be nice but it's really hard to worry about being nice to the person I'm talking to when everything they're saying seems either like it's mean to more severely disabled people, or like it's trying to erase them. I don't see Michael John Carley, Temple Grandin, et. al, as people who just have a different opinion that I should respect. Because if everyone's being so respectful, where the fuck is the respect for people who can't talk and wear diapers? Talking about respect just implies a world where everyone can do those things, where the only people being insulted are hypothetical. That is not the world I live in, or even want to live in.
13 March, 2010
me trying to be a badass on livejournal
it's not a situation where both sides are equal. Saying "Asperger's is going to be taken out of the DSM" doesn't make sense, because that isn't true (by that definition of "being taken out of the DSM," Autistic Disorder is also going to be taken out, but I don't hear anyone saying that). Saying "kids with Asperger's are going to be forced to be in classes with severely autistic, nonverbal kids" doesn't make sense, because that isn't true. Saying "people with Asperger's are now going to be considered not to have any condition at all" doesn't make sense, because that isn't true. Saying "people with Autistic Disorder use diapers/headbang/etc., and people with Asperger's don't, so they should be considered to be different disorders" doesn't make sense, because that isn't true across the board, and even if it was, there are lots of disorders where some people use diapers/headbang/etc., and some people don't.
I don't have to respect opinions that don't make sense or are based on things that aren't true. And it's very hard for me to respect opinions which (in some cases) seem to have a basis in ableism.
ETA: [J.] and plenty of other people who are verbal and who don't use diapers or wear helmets have to share the Autistic Disorder diagnosis with people who do. I have to share the PDD-NOS diagnosis with people who do. If sharing a diagnosis with people who have certain problems that you don't have is so horrible, then why aren't any of us bothered about it? Probably because we're not elitists like Michael John Carley and we realize there's more to a person than whether they can control their bowels.
(Yeah, at this point I'm sort of being an asshole. SOMETIMES I GET OVEREXCITED, OKAY.)
I don't have to respect opinions that don't make sense or are based on things that aren't true. And it's very hard for me to respect opinions which (in some cases) seem to have a basis in ableism.
ETA: [J.] and plenty of other people who are verbal and who don't use diapers or wear helmets have to share the Autistic Disorder diagnosis with people who do. I have to share the PDD-NOS diagnosis with people who do. If sharing a diagnosis with people who have certain problems that you don't have is so horrible, then why aren't any of us bothered about it? Probably because we're not elitists like Michael John Carley and we realize there's more to a person than whether they can control their bowels.
(Yeah, at this point I'm sort of being an asshole. SOMETIMES I GET OVEREXCITED, OKAY.)
18 February, 2010
my reply to her reply
(Hi: so I feel like this is an unfair thing to do, not just because I'm cheating on God, but because I'm only posting my responses and not what my professor actually said. I guess I feel like it would be wrong to post what someone else said. I basically feel that I really misunderstood comments she made in class that I took as her saying that ableism was going to be looked at in a really theoretical way and we weren't going to talk about how it affects specific disabilities. She was actually saying that we weren't going to read a lot of personal narratives and that she didn't want disabled students to feel that they had to educate anyone about their experience, and that classification of disabled people can be othering. She also totally missed/ignored what I was saying about accessibility, and was like, "in an academic class, which this is, you can get accommodations through the disability services office." And I think that a disability studies class taught by a nondisabled professor is problematic in general, unless the professor is MAGIC. But I feel like, by only posting my own emails, I might be making her look bad, so I want to be clear that she was pretty nice in the email, and didn't say the things about ableism that I misinterpreted her as saying.)
Dear [professor],
I'm sorry to hear that I misunderstood what you said, about classification and not studying personal experience, to such a great extent. I wish that add-drop wasn't so short, because then I would have been able to go to class more times before making my decision. As it is, since I have trouble changing my schedule and had never dropped a class before, I didn't really have any more time to make the decision. It took a lot of time (Wednesday through Sunday, I think) to make the decision and get myself used to the fact that my schedule was going to be different from what I expected. If I waited until after class on Monday, I would have felt like I was making the decision at the last minute.
I think it's possibly an inherently uncomfortable situation. The problem is that, while it's obviously wrong for a disabled student or students to be the zoo animal of the class who has to explain disability to everyone else, it is also uncomfortable to be invisibly disabled while everyone else is theorizing about it, especially if you don't feel that you're allowed to say, "I'm disabled." I don't feel that the class is [Ralph] Studies, but when [Ralph] makes comments in class, everyone knows that he is coming from a particular perspective and set of experiences, and if they are not disabled, they feel that he may have more understanding of certain issues. (At least, I hope they feel that way, because he does.) Note: "Ralph" is the only visibly disabled person in the class.
Like a lot of people with autism, I was raised to be hyperconscious of the way I speak and what I say. It is hard for me to participate spontaneously in class discussions because I am also trying to speak and respond to people in a standard way, and cover any lapses that I have in creating or processing speech (if someone interrupts me, I basically feel like someone has tripped me, and can't finish at all). On Wednesday, a person in class said, "I'm really interested in Asperger's, and they're taking Asperger's out of the DSM and they're going to call them autistic, and people with Asperger's feel like the identity they claimed is being taken away from them." Actually, a lot of people with an Asperger's diagnosis don't feel this way, identify as autistic rather than Asperger's, and are horrified by this response to the DSM change (which we see as very ableist, and basically coming out of mildly disabled people not wanting to be identified with severely disabled people--a very prevalent type of ableism which occurs in many disability communities). I've been thinking, reading, and writing about the autism/DSM issues a lot in the past few weeks. However, I felt like I couldn't say anything because it might take a lot of words to explain, and because I might be seen as dominating the conversation and trying to make it about a more specific issue (instead of classifications), or trying to make the conversation about my "Asperger's special interest," or whatever the stereotype is. It was just really uncomfortable because it would have taken more preparation to figure out how to talk about it, and I didn't have time to prepare, but I felt upset about it for days because it's really uncomfortable to have another person speak for you, and attribute sentiments to you that you find offensive.
It would have been nice to feel like I could just explain that I am disabled/what my disability is, I guess. At the same time I can imagine that maybe other invisibly disabled people want to pass, or feel like zoo animals if they're expected to explain themselves in that way. I have trouble with people not knowing, because then I just have to spend a lot of time wondering how soon they'll figure out that something is wrong, or what assumptions they'll make about me before they figure it out. (For example I had a professor who chastised me for not having done the reading and not being serious about the class, because in his opinion I didn't speak coherently enough to have done the reading, and didn't make the facial expressions that people make when they are interested in a class.) And it is especially hard if people are talking about stuff that is disability-related or especially autism-related, because I worry that I'm too emotional about it to talk about it in an appropriate way, or if I shouldn't say anything, which also feels wrong.
To conclude, I basically have no useful criticisms of the class, and I'm sorry. I just was upset, and figured I would email you, because sometimes it's hard to tell from the inside if you are feeling uncomfortable for a good reason or not. I'm really relieved to hear that I misunderstood the classification/specificity thing and I appreciate that you are concerned lest disabled students might feel that they are being studied or expected to educate other people about disability or ableism.
I don't agree that disability is the one identity category we will all embody. What about queerness?
I explained why I don't want to apply for accommodations and don't think that any standard accommodations would be useful for me. Also, I think that the whole setup, where I have to go through the disability services office, and bring in doctors' reports to prove that I'm disabled--well, I think it's kind of like a building with a wheelchair entrance in the back, where wheelchair users have to ring the doorbell and wait until someone comes outside and then ask the person to unlock the wheelchair entrance. To make the analogy more appropriate for my situation, let's say that the wheelchair user has CP, and has difficulty being understood, especially by strangers. If I understand the ADA correctly, this building is ADA-compliant, but I wish that buildings would have ramps in the front that people can use if they need them, without feeling like they're asking for special treatment. My desire for the autism and learning disability equivalent of this doesn't have anything to do with whether your class is "academic," by the way. I guess I mentioned it because I was dropping the class anyway and figured that, given the nature of the class, you might be interested in accessibility (which is also an assumption I might make about psych or neuro professors, or professors teaching a disability-related literature class, and so on). I admit I have somewhat radical views on accessibility, and I apologize for unleashing them on you, especially if you felt that I was saying your class wasn't academic.
Thank you very much for your reply, have a wonderful semester too (and I'm sorry for being so long-winded),
Amanda
(I'm being kind of a bitch with the wheelchair entrance thing, huh? also, here is a paragraph I cut:
I don't agree that disability is the one identity category we will all embody. What about queerness? Something I wanted to say about classifications, but didn't manage to get out in class, is that when someone tries to "reassure" me by saying I'm not disabled, I feel like the floor is being pulled out from under me. I know that there are parts of disability and queerness in everyone, but people don't look at me the way they look at Eli Clare, and people with regular brains don't feel the way I do about being found out. Neither do straight people. Being able to escape a certain amount of worry and ambiguity is something that certain people get, in certain areas of life. I'm jealous. I feel different from them, even if we're technically all different/all the same.)
Dear [professor],
I'm sorry to hear that I misunderstood what you said, about classification and not studying personal experience, to such a great extent. I wish that add-drop wasn't so short, because then I would have been able to go to class more times before making my decision. As it is, since I have trouble changing my schedule and had never dropped a class before, I didn't really have any more time to make the decision. It took a lot of time (Wednesday through Sunday, I think) to make the decision and get myself used to the fact that my schedule was going to be different from what I expected. If I waited until after class on Monday, I would have felt like I was making the decision at the last minute.
I think it's possibly an inherently uncomfortable situation. The problem is that, while it's obviously wrong for a disabled student or students to be the zoo animal of the class who has to explain disability to everyone else, it is also uncomfortable to be invisibly disabled while everyone else is theorizing about it, especially if you don't feel that you're allowed to say, "I'm disabled." I don't feel that the class is [Ralph] Studies, but when [Ralph] makes comments in class, everyone knows that he is coming from a particular perspective and set of experiences, and if they are not disabled, they feel that he may have more understanding of certain issues. (At least, I hope they feel that way, because he does.) Note: "Ralph" is the only visibly disabled person in the class.
Like a lot of people with autism, I was raised to be hyperconscious of the way I speak and what I say. It is hard for me to participate spontaneously in class discussions because I am also trying to speak and respond to people in a standard way, and cover any lapses that I have in creating or processing speech (if someone interrupts me, I basically feel like someone has tripped me, and can't finish at all). On Wednesday, a person in class said, "I'm really interested in Asperger's, and they're taking Asperger's out of the DSM and they're going to call them autistic, and people with Asperger's feel like the identity they claimed is being taken away from them." Actually, a lot of people with an Asperger's diagnosis don't feel this way, identify as autistic rather than Asperger's, and are horrified by this response to the DSM change (which we see as very ableist, and basically coming out of mildly disabled people not wanting to be identified with severely disabled people--a very prevalent type of ableism which occurs in many disability communities). I've been thinking, reading, and writing about the autism/DSM issues a lot in the past few weeks. However, I felt like I couldn't say anything because it might take a lot of words to explain, and because I might be seen as dominating the conversation and trying to make it about a more specific issue (instead of classifications), or trying to make the conversation about my "Asperger's special interest," or whatever the stereotype is. It was just really uncomfortable because it would have taken more preparation to figure out how to talk about it, and I didn't have time to prepare, but I felt upset about it for days because it's really uncomfortable to have another person speak for you, and attribute sentiments to you that you find offensive.
It would have been nice to feel like I could just explain that I am disabled/what my disability is, I guess. At the same time I can imagine that maybe other invisibly disabled people want to pass, or feel like zoo animals if they're expected to explain themselves in that way. I have trouble with people not knowing, because then I just have to spend a lot of time wondering how soon they'll figure out that something is wrong, or what assumptions they'll make about me before they figure it out. (For example I had a professor who chastised me for not having done the reading and not being serious about the class, because in his opinion I didn't speak coherently enough to have done the reading, and didn't make the facial expressions that people make when they are interested in a class.) And it is especially hard if people are talking about stuff that is disability-related or especially autism-related, because I worry that I'm too emotional about it to talk about it in an appropriate way, or if I shouldn't say anything, which also feels wrong.
To conclude, I basically have no useful criticisms of the class, and I'm sorry. I just was upset, and figured I would email you, because sometimes it's hard to tell from the inside if you are feeling uncomfortable for a good reason or not. I'm really relieved to hear that I misunderstood the classification/specificity thing and I appreciate that you are concerned lest disabled students might feel that they are being studied or expected to educate other people about disability or ableism.
I don't agree that disability is the one identity category we will all embody. What about queerness?
I explained why I don't want to apply for accommodations and don't think that any standard accommodations would be useful for me. Also, I think that the whole setup, where I have to go through the disability services office, and bring in doctors' reports to prove that I'm disabled--well, I think it's kind of like a building with a wheelchair entrance in the back, where wheelchair users have to ring the doorbell and wait until someone comes outside and then ask the person to unlock the wheelchair entrance. To make the analogy more appropriate for my situation, let's say that the wheelchair user has CP, and has difficulty being understood, especially by strangers. If I understand the ADA correctly, this building is ADA-compliant, but I wish that buildings would have ramps in the front that people can use if they need them, without feeling like they're asking for special treatment. My desire for the autism and learning disability equivalent of this doesn't have anything to do with whether your class is "academic," by the way. I guess I mentioned it because I was dropping the class anyway and figured that, given the nature of the class, you might be interested in accessibility (which is also an assumption I might make about psych or neuro professors, or professors teaching a disability-related literature class, and so on). I admit I have somewhat radical views on accessibility, and I apologize for unleashing them on you, especially if you felt that I was saying your class wasn't academic.
Thank you very much for your reply, have a wonderful semester too (and I'm sorry for being so long-winded),
Amanda
(I'm being kind of a bitch with the wheelchair entrance thing, huh? also, here is a paragraph I cut:
I don't agree that disability is the one identity category we will all embody. What about queerness? Something I wanted to say about classifications, but didn't manage to get out in class, is that when someone tries to "reassure" me by saying I'm not disabled, I feel like the floor is being pulled out from under me. I know that there are parts of disability and queerness in everyone, but people don't look at me the way they look at Eli Clare, and people with regular brains don't feel the way I do about being found out. Neither do straight people. Being able to escape a certain amount of worry and ambiguity is something that certain people get, in certain areas of life. I'm jealous. I feel different from them, even if we're technically all different/all the same.)
12 February, 2010
Topic sentence-->mission statement
Of course I was reading about the DSM on Wikipedia, and found out about a new diagnosis called Sluggish Cognitive Tempo. This sounds pretty much like a description of the ways that I think ASD impairs my ability to get stuff done. I'm not saying that I was misdiagnosed with ASD and really have SCT; I have some ASD symptoms that aren't included in SCT. I guess SCT-ish stuff can be part of ASD, as with Sensory Processing Disorder.
As usual, it makes me feel weird. If this blog had a topic sentence it would be "I'm super high-functioning but not like those other high-functioning people." I know that saying high-functioning is considered really offensive etc., but I feel like I need to use a word to describe what I'm like, and I'm not saying it as a judgment on other people. I think that judging people for their "functioning level" is one of the most hateful things you can do. What I'm trying to say is that I currently get by without services for my ASD, and expect that I always will. I got some services when I was a kid but I would have gotten by without them. Things would have been worse but I think I would still have been able to go to college and eventually make friends, just slower. I feel like the worst thing that could have happened to me would have just been that my life up until the age of eighteen would have been shit and I would have entered college as a very frightened person who self-injured a lot. But I would have entered college, is what I'm trying to say. (By services I largely mean going to a small private school where a lot of kids had learning disabilities and outright bullying was rare. It's hard to explain to people if I was in special ed because I don't think of my high school as a special ed school, but it kind of was, and it helped me a lot in terms of learning some methods of doing homework and talking to people.)
Anyway, I feel alienated by the word "Asperger's," because as I've previously mentioned, I feel more comfortable with the labels developmentally disabled or developmentally delayed or PDD-NOS. I am more high-functioning than the stereotypical person with Asperger's; I can sometimes talk to people without them noticing anything, I have satisfying friendships, my special interests are not that intense and not at all apparent (I think--I manage this by reading blogs and forums about them instead of trying to have conversations about them). The areas in which I'm not high-functioning are not stereotypical Asperger's problems of being an obnoxious nerd.
This is why Francisco Hernandez Jr. has (somewhat creepily) become an iconic figure to me, sort of the mascot of this blog. What happened to him has to do with getting overwhelmed and retreating and fading out. This is what happened to me for the first few months that I was writing this blog. I just called it "I'm somewhere else" because I was studying abroad, but then it ended up being a description of my mental state while I was abroad. A persistent, sometimes fascinating, sometimes horrible absence. I can't remember if I posted this at the time, but at one point I kept wearing the same jeans long after they needed to be washed because I was too depressed to work up the energy to change them.
I'm not active and odd. I'm passive and odd. And I'm not really as odd as I used to be.
I am excited about the DSM V because I feel like they describe a kind of ASD that can actually fit me.
Because I feel so alienated from the mainstream face of Asperger's, the topic sentence of this blog can be further developed into a mission statement, which is "Just because a lot of people are making dumb movies about people with Asperger's, and just because someone thinks we're good at making rocket ships, or whatever, doesn't mean that we're actually that different from other developmentally disabled people, or that we don't owe them anything."
As usual, it makes me feel weird. If this blog had a topic sentence it would be "I'm super high-functioning but not like those other high-functioning people." I know that saying high-functioning is considered really offensive etc., but I feel like I need to use a word to describe what I'm like, and I'm not saying it as a judgment on other people. I think that judging people for their "functioning level" is one of the most hateful things you can do. What I'm trying to say is that I currently get by without services for my ASD, and expect that I always will. I got some services when I was a kid but I would have gotten by without them. Things would have been worse but I think I would still have been able to go to college and eventually make friends, just slower. I feel like the worst thing that could have happened to me would have just been that my life up until the age of eighteen would have been shit and I would have entered college as a very frightened person who self-injured a lot. But I would have entered college, is what I'm trying to say. (By services I largely mean going to a small private school where a lot of kids had learning disabilities and outright bullying was rare. It's hard to explain to people if I was in special ed because I don't think of my high school as a special ed school, but it kind of was, and it helped me a lot in terms of learning some methods of doing homework and talking to people.)
Anyway, I feel alienated by the word "Asperger's," because as I've previously mentioned, I feel more comfortable with the labels developmentally disabled or developmentally delayed or PDD-NOS. I am more high-functioning than the stereotypical person with Asperger's; I can sometimes talk to people without them noticing anything, I have satisfying friendships, my special interests are not that intense and not at all apparent (I think--I manage this by reading blogs and forums about them instead of trying to have conversations about them). The areas in which I'm not high-functioning are not stereotypical Asperger's problems of being an obnoxious nerd.
This is why Francisco Hernandez Jr. has (somewhat creepily) become an iconic figure to me, sort of the mascot of this blog. What happened to him has to do with getting overwhelmed and retreating and fading out. This is what happened to me for the first few months that I was writing this blog. I just called it "I'm somewhere else" because I was studying abroad, but then it ended up being a description of my mental state while I was abroad. A persistent, sometimes fascinating, sometimes horrible absence. I can't remember if I posted this at the time, but at one point I kept wearing the same jeans long after they needed to be washed because I was too depressed to work up the energy to change them.
I'm not active and odd. I'm passive and odd. And I'm not really as odd as I used to be.
I am excited about the DSM V because I feel like they describe a kind of ASD that can actually fit me.
Because I feel so alienated from the mainstream face of Asperger's, the topic sentence of this blog can be further developed into a mission statement, which is "Just because a lot of people are making dumb movies about people with Asperger's, and just because someone thinks we're good at making rocket ships, or whatever, doesn't mean that we're actually that different from other developmentally disabled people, or that we don't owe them anything."
11 February, 2010
THE DSM V AGAIN (sorry)
A really long time ago I had talked about how I read an article about how the DSM is trying to change Asperger's, autism, and PDD into Autism Spectrum Disorders, and I had talked before about how I thought this was incredibly good and important. And I guess, now, they've sort of made it more official that they're planning on doing that, and of course some people have said things about how they don't agree, and I don't know, I find that very upsetting.
I'll explain more about what I mean, because I feel like this sounds like a very big statement to make, but I feel like some people with Asperger's, or people with Autism Spectrum Disorders who are verbal and fairly academically gifted, think that the way they're different is okay but they don't feel ready to accept the ways that other people are different.
This makes me very upset. I feel like I've certainly probably been like that at some point, like, when I was younger I didn't know a lot of people with severe disabilities, so I feel like a lot of people I probably thought that I didn't have much in common with them. But as I've gotten older I've found out that this isn't true, and that prejudice against some people with disabilities is insulting to all people with disabilities, and prejudice against some people with Autism Spectrum Disorders is insulting to everybody with an Autism Spectrum Disorder.
And, I'm very uncomfortable with the idea that I'm more like nondisabled people than I am like severely autistic people. Like, maybe if you made a diagram, and you had somebody who can't talk and isn't toilet-trained, etc., I guess you could probably figure it out mathematically so that I'm more like a nondisabled person--but I don't know, I still feel like the ways in which I'm different are important, and I still feel very connected and identified with that severely disabled person. And it's very hard for me to feel that I'm not supposed to care about that person [and feel identified with them as ASD people].
And my mom--I haven't heard it yet, 'cause I guess it was on the radio and it's not online yet. But my mom heard this interview with a woman about my age who has Asperger's, and she [the woman] said that she doesn't agree with Asperger's being considered autism, because she says that she doesn't identify with people who are severely disabled--and, um, apparently, she said people who are mentally disabled
--which, I think, I've probably gone over how this doesn't make sense, and how if someone's severely autistic, you can't actually tell if they're mentally disabled, and some people with severe autism have been shown to have normal intelligence or even be brilliant, and that's just a fallacy, it's not true.
But anyway, I guess this girl had said that she thought it was a problem with services because if everyone was called autistic, then she doesn't know what she'll do because the services that she needs aren't the services that a severely autistic person needs. Well I feel like this is just a strawman and it doesn't make any sense. Because I mean, for example, a person could have a diagnosis of an intellectual disability, and this could mean that when they get a job they need some extra help with their job and they need some extra help with their tax forms and stuff. Or it could mean that they can't talk at all and they live in a group home and they need people to help them with quite a lot of things all the time. And these people have the same diagnosis. [Actually I guess this isn’t accurate--one would have a diagnosis of Profound/Severe and one would have a diagnosis of Mild or Borderline. But this is also going to be the case for ASD, I think, so whatever.]
And another example is cerebral palsy, which is a physical disability involving muscle weakness and poor muscle control. So, for some people this could mean that they use a wheelchair, and they can't really talk, so they have to use a machine or a computer to talk, and some people don't even have enough muscle control to do that. So, those people definitely need a lot of services from the government, because they need an aide to help them get around, and they need communication devices, and they need a wheelchair. But there are also maybe people who have some trouble walking, but they can walk, and they talk in a different way, but they can still talk. And those people obviously don't need as many services, or they need different kinds of services.
So, I don't think the fact that all these people are called people with cerebral palsy, or that all the intellectually disabled people are called intellectually disabled people...I don't think that means that they all have to get the same services. I mean, that's kind of ridiculous. I feel like, to the extent that that's true, that everyone with one disability is expected to be the same, and you're expected to be judged by the word that your disability is--you're not able to be like "I have trouble with self-care skills" or "I need help moving around" or something like that--that isn't an acceptable way for services to work. And I don’t get services so I’m not an expert, but I don’t think that’s the way services do work.
So, I guess I don't understand how me being called "autistic" means that I'm somehow going to end up with all the services that a severely autistic person would have. I've also been accused of, people like me, who are "high-functioning," trying to take away the services from "low-functioning" people which also isn't true--I have no desire to take all the services that a severely disabled person needs, and have them end up with my services, which at this point are not any services. That just doesn't make any sense, and I feel like this person doesn't know what she's talking about, about services.
And I also feel like it's a little, maybe, even, dishonest, for people to pretend that it's about services. Because I really feel, sometimes, that people--like me, when I was younger, and like many other people--don't know a lot of people with severe disabilities, and feel very uncomfortable about it, and think that those people can't be anything like them, but that's just not true.
I read some interview with some guy, who, while he ultimately came out supporting Asperger's being enfolded into the autism diagnosis, he said that it's hard to think of yourself as being like people who have to wear a helmet and use adult diapers. And I don't know, I think that's funny because even some people who don't have autism have to use diapers, because all kinds of people have those problems, especially when they're older and stuff, or if they're in a car accident...I guess I think it's funny that he thinks that only happens to severely autistic people.
But anyway, I just think it's really funny that someone is upset by the idea that they might even be associated with someone who God forbid uses diapers. If you ever actually met anyone who has those kinds of disabilities, it's pretty much like meeting any other person, if you can believe it, it's not like that's the only thing there when you look at them. And I don't know, that just makes me feel upset.
On a different (but not extremely different) subject, I get really upset by the word retarded, when it's used as an insult. And I feel like when I try to say that it upsets me, I get this attitude like I'm being really politically correct, and I think people imagine that I'm trying to defend this imaginary group of like, "retarded people," all these disabled people who are, like, too disabled to understand what's going on, and that I'm trying to be charitable. Well, that's not the case. Retarded people, who have a diagnosis of mental retardation...some of these people that I care about and think are really cool and like to be around as much as I like to be around anyone else, and, I'm definitely not being charitable--I'm defending, basically, my friends, or my fellow disabled people.
I mean, I've been called "retarded” as an insult. I think a lot of people with Autism Spectrum Disorders have been. And, there are certain people who will go around...well, I feel like Asperger's has gotten to this point in our culture where we're kind of being thought of as, like, these exotic zoo animals, because we have, like, splinter skills and special talents, and a big effort is being made to distinguish us from either severely autistic people, or retarded people, or sometimes they're just considered to be one big group of people, which doesn't really make sense.
But this makes me very uncomfortable. I don't think my value is in my supposed splinter skills, if I even have such a thing. And I've been called retarded, and I think I have some of the same problems that some intellectually disabled people have. I definitely have some of the same problems that some severely disabled autistic people, who are mistaken for intellectually disabled, have. So, I mean...yeah, to some extent, when people use the word retarded, I even feel like they're insulting me, so I'm not being charitable. I'm defending myself.
And, um, I don't want to separate myself from other disabled people because it isn't fair. It has to go farther than that. I can't just be thinking about myself. I have to be thinking about all the other people who are in this with me.
I'll explain more about what I mean, because I feel like this sounds like a very big statement to make, but I feel like some people with Asperger's, or people with Autism Spectrum Disorders who are verbal and fairly academically gifted, think that the way they're different is okay but they don't feel ready to accept the ways that other people are different.
This makes me very upset. I feel like I've certainly probably been like that at some point, like, when I was younger I didn't know a lot of people with severe disabilities, so I feel like a lot of people I probably thought that I didn't have much in common with them. But as I've gotten older I've found out that this isn't true, and that prejudice against some people with disabilities is insulting to all people with disabilities, and prejudice against some people with Autism Spectrum Disorders is insulting to everybody with an Autism Spectrum Disorder.
And, I'm very uncomfortable with the idea that I'm more like nondisabled people than I am like severely autistic people. Like, maybe if you made a diagram, and you had somebody who can't talk and isn't toilet-trained, etc., I guess you could probably figure it out mathematically so that I'm more like a nondisabled person--but I don't know, I still feel like the ways in which I'm different are important, and I still feel very connected and identified with that severely disabled person. And it's very hard for me to feel that I'm not supposed to care about that person [and feel identified with them as ASD people].
And my mom--I haven't heard it yet, 'cause I guess it was on the radio and it's not online yet. But my mom heard this interview with a woman about my age who has Asperger's, and she [the woman] said that she doesn't agree with Asperger's being considered autism, because she says that she doesn't identify with people who are severely disabled--and, um, apparently, she said people who are mentally disabled
--which, I think, I've probably gone over how this doesn't make sense, and how if someone's severely autistic, you can't actually tell if they're mentally disabled, and some people with severe autism have been shown to have normal intelligence or even be brilliant, and that's just a fallacy, it's not true.
But anyway, I guess this girl had said that she thought it was a problem with services because if everyone was called autistic, then she doesn't know what she'll do because the services that she needs aren't the services that a severely autistic person needs. Well I feel like this is just a strawman and it doesn't make any sense. Because I mean, for example, a person could have a diagnosis of an intellectual disability, and this could mean that when they get a job they need some extra help with their job and they need some extra help with their tax forms and stuff. Or it could mean that they can't talk at all and they live in a group home and they need people to help them with quite a lot of things all the time. And these people have the same diagnosis. [Actually I guess this isn’t accurate--one would have a diagnosis of Profound/Severe and one would have a diagnosis of Mild or Borderline. But this is also going to be the case for ASD, I think, so whatever.]
And another example is cerebral palsy, which is a physical disability involving muscle weakness and poor muscle control. So, for some people this could mean that they use a wheelchair, and they can't really talk, so they have to use a machine or a computer to talk, and some people don't even have enough muscle control to do that. So, those people definitely need a lot of services from the government, because they need an aide to help them get around, and they need communication devices, and they need a wheelchair. But there are also maybe people who have some trouble walking, but they can walk, and they talk in a different way, but they can still talk. And those people obviously don't need as many services, or they need different kinds of services.
So, I don't think the fact that all these people are called people with cerebral palsy, or that all the intellectually disabled people are called intellectually disabled people...I don't think that means that they all have to get the same services. I mean, that's kind of ridiculous. I feel like, to the extent that that's true, that everyone with one disability is expected to be the same, and you're expected to be judged by the word that your disability is--you're not able to be like "I have trouble with self-care skills" or "I need help moving around" or something like that--that isn't an acceptable way for services to work. And I don’t get services so I’m not an expert, but I don’t think that’s the way services do work.
So, I guess I don't understand how me being called "autistic" means that I'm somehow going to end up with all the services that a severely autistic person would have. I've also been accused of, people like me, who are "high-functioning," trying to take away the services from "low-functioning" people which also isn't true--I have no desire to take all the services that a severely disabled person needs, and have them end up with my services, which at this point are not any services. That just doesn't make any sense, and I feel like this person doesn't know what she's talking about, about services.
And I also feel like it's a little, maybe, even, dishonest, for people to pretend that it's about services. Because I really feel, sometimes, that people--like me, when I was younger, and like many other people--don't know a lot of people with severe disabilities, and feel very uncomfortable about it, and think that those people can't be anything like them, but that's just not true.
I read some interview with some guy, who, while he ultimately came out supporting Asperger's being enfolded into the autism diagnosis, he said that it's hard to think of yourself as being like people who have to wear a helmet and use adult diapers. And I don't know, I think that's funny because even some people who don't have autism have to use diapers, because all kinds of people have those problems, especially when they're older and stuff, or if they're in a car accident...I guess I think it's funny that he thinks that only happens to severely autistic people.
But anyway, I just think it's really funny that someone is upset by the idea that they might even be associated with someone who God forbid uses diapers. If you ever actually met anyone who has those kinds of disabilities, it's pretty much like meeting any other person, if you can believe it, it's not like that's the only thing there when you look at them. And I don't know, that just makes me feel upset.
On a different (but not extremely different) subject, I get really upset by the word retarded, when it's used as an insult. And I feel like when I try to say that it upsets me, I get this attitude like I'm being really politically correct, and I think people imagine that I'm trying to defend this imaginary group of like, "retarded people," all these disabled people who are, like, too disabled to understand what's going on, and that I'm trying to be charitable. Well, that's not the case. Retarded people, who have a diagnosis of mental retardation...some of these people that I care about and think are really cool and like to be around as much as I like to be around anyone else, and, I'm definitely not being charitable--I'm defending, basically, my friends, or my fellow disabled people.
I mean, I've been called "retarded” as an insult. I think a lot of people with Autism Spectrum Disorders have been. And, there are certain people who will go around...well, I feel like Asperger's has gotten to this point in our culture where we're kind of being thought of as, like, these exotic zoo animals, because we have, like, splinter skills and special talents, and a big effort is being made to distinguish us from either severely autistic people, or retarded people, or sometimes they're just considered to be one big group of people, which doesn't really make sense.
But this makes me very uncomfortable. I don't think my value is in my supposed splinter skills, if I even have such a thing. And I've been called retarded, and I think I have some of the same problems that some intellectually disabled people have. I definitely have some of the same problems that some severely disabled autistic people, who are mistaken for intellectually disabled, have. So, I mean...yeah, to some extent, when people use the word retarded, I even feel like they're insulting me, so I'm not being charitable. I'm defending myself.
And, um, I don't want to separate myself from other disabled people because it isn't fair. It has to go farther than that. I can't just be thinking about myself. I have to be thinking about all the other people who are in this with me.
10 February, 2010
Autism Spectrum Disorders in the DSM V Part 2 Transcript
Um, a really long time ago I had talked about how I read an article about how the diagnostic...something...the DSM...I actually realized I have no idea what that stands for, which is kind of bad. [For the record, I know what the DSM is and all, I just forget what it stands for.]
Yeah, so they're trying to change Asperger's, and autism, and PDD into Autism Spectrum Disorders, and I had talked before about how I thought this was incredibly good and important. And I guess, now, they've sort of made it more official that they're planning on doing that, and of course some people have said things about how they don't agree, and, um, I don't know, I find that very upsetting.
So, um, I guess--and I mean, I'll explain more about what I mean, because I feel like this sounds like a very big statement to make, but I feel like, um, some people with Asperger's, or people with Autism Spectrum Disorders who are verbal and fairly academically gifted think that the way they're different is okay but they don't feel ready to accept the ways that other people are different.
And, um, this makes me very upset. I feel like I've certainly probably been like that at some point, like, when I was younger I didn't know a lot of people with severe disabilities, so I feel like a lot of people I probably thought that I didn't have much in common with them. But as I've gotten older I've found out that this isn't true, and that prejudice against some people with disabilities is insulting to all people with disabilities, and prejudice against some people with Autism Spectrum Disorders is insulting to everybody with an Autism Spectrum Disorder.
And, I'm very uncomfortable with the idea that I'm more like nondisabled people than I am like severely autistic people. Like, I feel like, maybe if you made, like, a diagram, and you had, like, somebody who can't talk and isn't toilet-trained, etc., I guess you could probably figure it out mathematically so that I'm more like a nondisabled person, but I don't know, I still feel like, the ways in which I'm different--I still feel very connected and identified with that severely disabled person. And, um, it's very hard for me to feel that I'm not supposed to care about that person.
And, um, my mom--I haven't heard it yet, 'cause I guess it was on the radio and it's not online yet. But it was a woman about my age who has Asperger's, and she said that she doesn't agree with Asperger's being considered autism, because she says that she doesn't identify with people who are severely disabled--and, um, apparently, she said people who are mentally disabled
--which, I think, I've probably gone over how this doesn't make sense, and how if someone's severely autistic, you can't actually tell if they're mentally disabled, and some people with severe autism have been shown to have normal intelligence or even be brilliant, and that's just a fallacy, it's not true.
But, um, I guess this girl had said that she thought it was a problem with services because if everyone was called autistic, then, um, she doesn't know what she'll do because the services that she needs aren't the services that a severely autistic person needs. Well, this, I guess, I feel like it's just a strawman and it doesn't make any sense. Because I mean, for example, a person could have a diagnosis of an intellectual disability, and this could mean that when they get a job they need some extra help with their job and they need some extra help with their tax forms and stuff. Or it could mean that they can't talk at all and they live in a group home and they need people to help them with quite a lot of things all the time. And these people have the same diagnosis.
And another example is, like, cerebral palsy, which is when you don't get enough air when you're in the womb, and it leads to having, like, a physical disability with, like, trouble controlling your muscles and muscle weakness and stuff. So, for some people this could mean that they use a wheelchair, and they can't really talk, so they have to use like a machine or a computer to talk, and some people don't even have enough muscle control to do that. So, those people definitely need a lot of services from the government, because they need an aide to help them get around, and they need communication devices, and they need a wheelchair. But there are also maybe people who have some trouble walking, but they can walk, and they talk in a different way, they can still talk. And those people obviously don't need as many services, or they need different kinds of services.
So, um, I don't think the fact that all these people are called people with cerebral palsy, or that all the intellectually disabled people are called intellectually disabled people...I don't think that means that they all have to get the same services. I mean, that's kind of ridiculous. I feel like, to the extent that that's true, that everyone with one disability is expected to be the same, and you're expected to be judged--what you need is supposed to be judged by, like, the word that your disability is--you're not able to be like "I have trouble with self-care skills" or "I need help moving around" or something like that--that isn't really the case, and to the extent that that is the case, it shouldn't be the case.
So, I guess I don't understand how me being called "autistic" means that I'm somehow going to end up with all the services that a severely autistic person would have. Or, um, I've also been accused of, people like me, who are "high-functioning," trying to take away the services from "low-functioning" people which also isn't true--like, I have no desire to take all the services that a severely disabled person needs, and have them end up with my services, which at this point are not any services. Like, that just doesn't make any sense, and I feel like this person doesn't know what she's talking about.
And I also feel like it's a little, maybe, even, dishonest, for people to pretend that it's about services. Because I really feel, sometimes, that, um, people--like me, when I was younger, and like many other people--don't know a lot of people with severe disabilities, and feel very uncomfortable about it, and think that those people can't be anything like them, but that's just not true.
I read some interview with some guy, who, like, while he ultimately came out supporting Asperger's being enfolded into the autism diagnosis, he said, um, that it's hard to think of yourself as being like people who have to wear a helmet and use adult diapers. And, um, I don't know, I think that's funny because, like, even some people who don't have autism have to use diapers, because, like, all kinds of people have those problems, especially when they're older and stuff, or if they're in a car accident, you know, like...I guess I think it's funny that he thinks that only happens to severely autistic people.
But, um, just the same, I just think it's really funny that someone is upset by the idea that they might even be associated with someone who God forbid uses diapers. If you ever actually met anyone who has those kinds of disabilities, it's pretty much like meeting any other person, if you can believe it, it's not like that's the only thing there when you look at them. And, um, I don't know, that just makes me feel upset
I feel like, um...Okay. I get really upset by the word retarded, when it's used as an insult. And I feel like when I try to say that it upsets me, I get this attitude like I'm being really politically correct, and I think people imagine that I'm trying to defend this imaginary group of like, "retarded people," all these disabled people who are, like, too disabled to understand what's going on, and that I'm trying to be charitable. Well, that's not the case. Retarded people, who have a diagnosis of mental retardation...some of these people that I care about and think are really cool and like to be around as much as I like to be around anyone else, and, um, I'm definitely not being charitable--I'm defending, basically, my friends, or my fellow disabled people. And also, I think--
I mean, I've been called "retarded." I think a lot of people with Autism Spectrum Disorders have been called "retarded." And, um, there are certain people who will go around...I feel like Asperger's has gotten to this point in our culture where we're kind of being thought of as, like, these exotic zoo animals, because we have, like, splinter skills and special talents, and a big effort is being made to distinguish us from either severely autistic people, or retarded people, or sometimes they're just considered to be one big group of people, which doesn't really make sense.
But, um, this makes me very uncomfortable. I don't think my value is in my supposed splinter skills, if I even have such a thing. And, um, I've been called retarded, I think I have some of the same problems that some intellectually disabled people have. I definitely have some of the same problems that some severely disabled autistic people, who are also called "retarded," have. So, I mean...yeah, to some extent, when people use the word retarded, I even feel like they're insulting me, so I'm not being charitable. I'm defending myself.
And, um, I don't want to separate myself from other disabled people because it isn't fair. It has to go farther than that. I can't just be thinking about myself. I have to be thinking about all the other people who are in this with me.
(I guess maybe I do these in case a person who can't hear or doesn't like noises would be interested, but I also am just interested in figuring out how I speak, which is a lot of why I started making YouTube videos in the first place. I think it's interesting that as I've recently started trying to advocate for myself a lot more, I've started using the phrases "It upsets me" and "It makes me feel uncomfortable" almost compulsively. It's really cool to be able to say those words, I hope someday all of us learn how to say them.)
Yeah, so they're trying to change Asperger's, and autism, and PDD into Autism Spectrum Disorders, and I had talked before about how I thought this was incredibly good and important. And I guess, now, they've sort of made it more official that they're planning on doing that, and of course some people have said things about how they don't agree, and, um, I don't know, I find that very upsetting.
So, um, I guess--and I mean, I'll explain more about what I mean, because I feel like this sounds like a very big statement to make, but I feel like, um, some people with Asperger's, or people with Autism Spectrum Disorders who are verbal and fairly academically gifted think that the way they're different is okay but they don't feel ready to accept the ways that other people are different.
And, um, this makes me very upset. I feel like I've certainly probably been like that at some point, like, when I was younger I didn't know a lot of people with severe disabilities, so I feel like a lot of people I probably thought that I didn't have much in common with them. But as I've gotten older I've found out that this isn't true, and that prejudice against some people with disabilities is insulting to all people with disabilities, and prejudice against some people with Autism Spectrum Disorders is insulting to everybody with an Autism Spectrum Disorder.
And, I'm very uncomfortable with the idea that I'm more like nondisabled people than I am like severely autistic people. Like, I feel like, maybe if you made, like, a diagram, and you had, like, somebody who can't talk and isn't toilet-trained, etc., I guess you could probably figure it out mathematically so that I'm more like a nondisabled person, but I don't know, I still feel like, the ways in which I'm different--I still feel very connected and identified with that severely disabled person. And, um, it's very hard for me to feel that I'm not supposed to care about that person.
And, um, my mom--I haven't heard it yet, 'cause I guess it was on the radio and it's not online yet. But it was a woman about my age who has Asperger's, and she said that she doesn't agree with Asperger's being considered autism, because she says that she doesn't identify with people who are severely disabled--and, um, apparently, she said people who are mentally disabled
--which, I think, I've probably gone over how this doesn't make sense, and how if someone's severely autistic, you can't actually tell if they're mentally disabled, and some people with severe autism have been shown to have normal intelligence or even be brilliant, and that's just a fallacy, it's not true.
But, um, I guess this girl had said that she thought it was a problem with services because if everyone was called autistic, then, um, she doesn't know what she'll do because the services that she needs aren't the services that a severely autistic person needs. Well, this, I guess, I feel like it's just a strawman and it doesn't make any sense. Because I mean, for example, a person could have a diagnosis of an intellectual disability, and this could mean that when they get a job they need some extra help with their job and they need some extra help with their tax forms and stuff. Or it could mean that they can't talk at all and they live in a group home and they need people to help them with quite a lot of things all the time. And these people have the same diagnosis.
And another example is, like, cerebral palsy, which is when you don't get enough air when you're in the womb, and it leads to having, like, a physical disability with, like, trouble controlling your muscles and muscle weakness and stuff. So, for some people this could mean that they use a wheelchair, and they can't really talk, so they have to use like a machine or a computer to talk, and some people don't even have enough muscle control to do that. So, those people definitely need a lot of services from the government, because they need an aide to help them get around, and they need communication devices, and they need a wheelchair. But there are also maybe people who have some trouble walking, but they can walk, and they talk in a different way, they can still talk. And those people obviously don't need as many services, or they need different kinds of services.
So, um, I don't think the fact that all these people are called people with cerebral palsy, or that all the intellectually disabled people are called intellectually disabled people...I don't think that means that they all have to get the same services. I mean, that's kind of ridiculous. I feel like, to the extent that that's true, that everyone with one disability is expected to be the same, and you're expected to be judged--what you need is supposed to be judged by, like, the word that your disability is--you're not able to be like "I have trouble with self-care skills" or "I need help moving around" or something like that--that isn't really the case, and to the extent that that is the case, it shouldn't be the case.
So, I guess I don't understand how me being called "autistic" means that I'm somehow going to end up with all the services that a severely autistic person would have. Or, um, I've also been accused of, people like me, who are "high-functioning," trying to take away the services from "low-functioning" people which also isn't true--like, I have no desire to take all the services that a severely disabled person needs, and have them end up with my services, which at this point are not any services. Like, that just doesn't make any sense, and I feel like this person doesn't know what she's talking about.
And I also feel like it's a little, maybe, even, dishonest, for people to pretend that it's about services. Because I really feel, sometimes, that, um, people--like me, when I was younger, and like many other people--don't know a lot of people with severe disabilities, and feel very uncomfortable about it, and think that those people can't be anything like them, but that's just not true.
I read some interview with some guy, who, like, while he ultimately came out supporting Asperger's being enfolded into the autism diagnosis, he said, um, that it's hard to think of yourself as being like people who have to wear a helmet and use adult diapers. And, um, I don't know, I think that's funny because, like, even some people who don't have autism have to use diapers, because, like, all kinds of people have those problems, especially when they're older and stuff, or if they're in a car accident, you know, like...I guess I think it's funny that he thinks that only happens to severely autistic people.
But, um, just the same, I just think it's really funny that someone is upset by the idea that they might even be associated with someone who God forbid uses diapers. If you ever actually met anyone who has those kinds of disabilities, it's pretty much like meeting any other person, if you can believe it, it's not like that's the only thing there when you look at them. And, um, I don't know, that just makes me feel upset
I feel like, um...Okay. I get really upset by the word retarded, when it's used as an insult. And I feel like when I try to say that it upsets me, I get this attitude like I'm being really politically correct, and I think people imagine that I'm trying to defend this imaginary group of like, "retarded people," all these disabled people who are, like, too disabled to understand what's going on, and that I'm trying to be charitable. Well, that's not the case. Retarded people, who have a diagnosis of mental retardation...some of these people that I care about and think are really cool and like to be around as much as I like to be around anyone else, and, um, I'm definitely not being charitable--I'm defending, basically, my friends, or my fellow disabled people. And also, I think--
I mean, I've been called "retarded." I think a lot of people with Autism Spectrum Disorders have been called "retarded." And, um, there are certain people who will go around...I feel like Asperger's has gotten to this point in our culture where we're kind of being thought of as, like, these exotic zoo animals, because we have, like, splinter skills and special talents, and a big effort is being made to distinguish us from either severely autistic people, or retarded people, or sometimes they're just considered to be one big group of people, which doesn't really make sense.
But, um, this makes me very uncomfortable. I don't think my value is in my supposed splinter skills, if I even have such a thing. And, um, I've been called retarded, I think I have some of the same problems that some intellectually disabled people have. I definitely have some of the same problems that some severely disabled autistic people, who are also called "retarded," have. So, I mean...yeah, to some extent, when people use the word retarded, I even feel like they're insulting me, so I'm not being charitable. I'm defending myself.
And, um, I don't want to separate myself from other disabled people because it isn't fair. It has to go farther than that. I can't just be thinking about myself. I have to be thinking about all the other people who are in this with me.
(I guess maybe I do these in case a person who can't hear or doesn't like noises would be interested, but I also am just interested in figuring out how I speak, which is a lot of why I started making YouTube videos in the first place. I think it's interesting that as I've recently started trying to advocate for myself a lot more, I've started using the phrases "It upsets me" and "It makes me feel uncomfortable" almost compulsively. It's really cool to be able to say those words, I hope someday all of us learn how to say them.)
AGGHHH
So, I really want this job. It's at a camp in Vermont for people with disabilities (mostly DDs but other stuff too).
I am worried because I feel that things are never easy, but the assistant camp director sounds like Laura Roslin on the phone, so my interview was strangely calming. Also, usually I am afraid of giving the wrong answer, but I basically have a lot of sincere feelings about this stuff, so it wasn't very hard. I said that my hero was Harriet McBryde Johnson and I thought my strength was enthusiasm and my weakness was I don't have much experience dressing people or giving them showers. I said that I feel uncomfortable about giving people showers, but that if someone is used to getting help with that stuff, that would probably help me feel more comfortable, when I saw that the other person wasn't awkward or mad at me. She said that's probably true, and that it's natural to be uncomfortable with that stuff.
Job interviews are scary, because thanks to past experience, I feel concerned that a place I'm applying to work at is less ethical than I am. I'm not too good a person to work at an unethical place because I feel like at least I'll only do the bare minimum of unethical stuff, and once I have job experience I can become a big shot and revolutionize the system. So, I feel like I shouldn't be too noisy about my convictions.
This place seems really good though! She asked what I would do if someone wouldn't get dressed and go to breakfast, and I was really afraid that I was supposed to say that I would grab them and pull them to breakfast, or something. Instead I said that I would try to talk to them about how they might regret not going to breakfast, and how if they don't go to breakfast they might miss out on other activities later in the day. AND THIS WAS TREATED AS A GOOD ANSWER!! I was so relieved.
Also, it was just really emotional to hear about all the stuff they do, how they have all kinds of different activities and special events, because when I was visiting Clayton he told me how he went to disabled camp when he was a kid and it was basically like a warehouse, they sat around and the kids who could walk were sometimes taken for a walk, and that was it. This camp has as many activities as any other camp, if not more.
I was supposed to think it over and call her back. The problem is I had nothing to think over. I was supposed to talk to people so I talked to Noah and my mom, but all I really said was "THIS IS THE BEST CAMP, do you think I should be worried about giving people showers" and they were like "not really." So, after waiting the minimum suggested amount of time (she said two to three days) I called her back and as soon as she answered the phone I said "This is Amanda Forest Vivian [I love how I think putting a random word in the middle of my name will keep people from stalking me on the Internet], I really want to work at Camp ____, it wasn't a difficult decision, so I don't know how well I can explain my thought process, do you want me to try to explain."
Then I heard some coughing. She has a cold, as I learned when I talked to her before. Then she said, "You caught me off guard. Well, you considered it briefly, and I think if people really want to be doing this, they usually are sure about it fairly soon; I try to describe a lot about the camp when I talk to people, and if they seem to be hesitating, then those are usually the people who change their minds. So I'll check your references, and if nothing horrible turns up, you should be getting a contract in a few weeks."
I started to get seized with paranoia that my references secretly hate me and/or don't remember me, because I haven't worked with DD people in a while. It's too bad that the DD people can't give the references, because I think my friend Mike would remember me and give a really good reference, as long as he could communicate by stimming. (His verbal reference would probably be something like "Hi...blue...toast...BABIES!" One time I saw a woman with a baby walking by and basically forced her to come over and show the baby to Mike. All Mike has ever wanted to do is look at babies and talk to them, but unfortunately there are no babies in the South Group Home or the Oberlin Work Activity Center. However, he can carry pictures of them around.)
But anyway, I started emailing my references to remind them of who I am. But it took me like two hours because I kept accidentally flicking my wrists and jumping around the room, like Mike does when he encounters babies, police officers, mailmen, and flyers. I mean, Mike would never flick his wrists at a baby. Around babies, he finally becomes still. I hope nothing horrible turns up because if I get this job, I will have the best summer, and my life will more or less be on track FOREVER.
eta: oh oh oh, also the DSM? Best day ever. Except, I already heard two dumb comments about it today. You guys, if part of your Asperger's identity is thinking that Einstein had Asperger's, YOU'RE DOING IT WRONG. He had a speech delay. This is a good example of how Asperger's ISN'T REAL AND MAKES NO SENSE.
I am worried because I feel that things are never easy, but the assistant camp director sounds like Laura Roslin on the phone, so my interview was strangely calming. Also, usually I am afraid of giving the wrong answer, but I basically have a lot of sincere feelings about this stuff, so it wasn't very hard. I said that my hero was Harriet McBryde Johnson and I thought my strength was enthusiasm and my weakness was I don't have much experience dressing people or giving them showers. I said that I feel uncomfortable about giving people showers, but that if someone is used to getting help with that stuff, that would probably help me feel more comfortable, when I saw that the other person wasn't awkward or mad at me. She said that's probably true, and that it's natural to be uncomfortable with that stuff.
Job interviews are scary, because thanks to past experience, I feel concerned that a place I'm applying to work at is less ethical than I am. I'm not too good a person to work at an unethical place because I feel like at least I'll only do the bare minimum of unethical stuff, and once I have job experience I can become a big shot and revolutionize the system. So, I feel like I shouldn't be too noisy about my convictions.
This place seems really good though! She asked what I would do if someone wouldn't get dressed and go to breakfast, and I was really afraid that I was supposed to say that I would grab them and pull them to breakfast, or something. Instead I said that I would try to talk to them about how they might regret not going to breakfast, and how if they don't go to breakfast they might miss out on other activities later in the day. AND THIS WAS TREATED AS A GOOD ANSWER!! I was so relieved.
Also, it was just really emotional to hear about all the stuff they do, how they have all kinds of different activities and special events, because when I was visiting Clayton he told me how he went to disabled camp when he was a kid and it was basically like a warehouse, they sat around and the kids who could walk were sometimes taken for a walk, and that was it. This camp has as many activities as any other camp, if not more.
I was supposed to think it over and call her back. The problem is I had nothing to think over. I was supposed to talk to people so I talked to Noah and my mom, but all I really said was "THIS IS THE BEST CAMP, do you think I should be worried about giving people showers" and they were like "not really." So, after waiting the minimum suggested amount of time (she said two to three days) I called her back and as soon as she answered the phone I said "This is Amanda Forest Vivian [I love how I think putting a random word in the middle of my name will keep people from stalking me on the Internet], I really want to work at Camp ____, it wasn't a difficult decision, so I don't know how well I can explain my thought process, do you want me to try to explain."
Then I heard some coughing. She has a cold, as I learned when I talked to her before. Then she said, "You caught me off guard. Well, you considered it briefly, and I think if people really want to be doing this, they usually are sure about it fairly soon; I try to describe a lot about the camp when I talk to people, and if they seem to be hesitating, then those are usually the people who change their minds. So I'll check your references, and if nothing horrible turns up, you should be getting a contract in a few weeks."
I started to get seized with paranoia that my references secretly hate me and/or don't remember me, because I haven't worked with DD people in a while. It's too bad that the DD people can't give the references, because I think my friend Mike would remember me and give a really good reference, as long as he could communicate by stimming. (His verbal reference would probably be something like "Hi...blue...toast...BABIES!" One time I saw a woman with a baby walking by and basically forced her to come over and show the baby to Mike. All Mike has ever wanted to do is look at babies and talk to them, but unfortunately there are no babies in the South Group Home or the Oberlin Work Activity Center. However, he can carry pictures of them around.)
But anyway, I started emailing my references to remind them of who I am. But it took me like two hours because I kept accidentally flicking my wrists and jumping around the room, like Mike does when he encounters babies, police officers, mailmen, and flyers. I mean, Mike would never flick his wrists at a baby. Around babies, he finally becomes still. I hope nothing horrible turns up because if I get this job, I will have the best summer, and my life will more or less be on track FOREVER.
eta: oh oh oh, also the DSM? Best day ever. Except, I already heard two dumb comments about it today. You guys, if part of your Asperger's identity is thinking that Einstein had Asperger's, YOU'RE DOING IT WRONG. He had a speech delay. This is a good example of how Asperger's ISN'T REAL AND MAKES NO SENSE.
04 November, 2009
Kinds of Autism
So, it has been proposed that in the DSM V, they might just have degrees of Autism Spectrum Disorder--if this happened, Asperger's, PDD-NOS, and classic autism would no longer be separate diagnoses. I made a YouTube video about this where I was basically peeing myself with excitement, because I think all those labels are really reductive and basically ignore the existence of people who gain or lose skills with time, or come off as really normal but can't manage their lives at all, or are really affectionate but don't use words (actually, so many of the severely autistic kids I've met have been really sweet and affectionate, and it's just like, hi professionals, you have no idea what you're talking about). I prefer to call myself ASD anyway, both because I have two diagnoses, and because I don't think I have a different condition from people with severe autism.
But I do feel different from some ASD people. And it would be stupid for me to claim that I am just like the curebie poster kids; I care a lot about those kids and in some ways when they are hurt it is a personal thing, but the truth is, right now, at least, I talk, and I go to school, and I buy my own groceries and I don't seriously hurt myself and I don't stim in front of other people. I wouldn't call the way I am Asperger's, because except for talking, none of those things are things that all Asperger's people do.
I think that different ASD people have different levels of independence, passing ability, and communication. I think I can say, confidently, that the kinds of autistic people are:
.5. People who are perceived as normal, nice, sane, intelligent, not going through a personal crisis, and not on drugs.
1. People who look normal--not necessarily really normal, but normal enough that they can walk down the street without having someone freak out that they're being left unattended. People who can talk--not necessarily so well that people don't think they're on drugs, or being rude, but well enough that they are not immediately pegged as someone who should not be alone.
2. People who are usually immediately pegged as having some kind of disability, and may require support staff, but have some way of expressing themselves really well. They may not speak, but they are recognized as intelligent by the people in their lives, and they can make decisions about how they want to live (if other people are willing to accept those decisions).
2.5. People who cannot communicate that well. If they use words, it might not be in ways that other people can understand. They might have learned to use either speaking or augmented communication to express things like being hungry or being tired. And of course they can still relate to other people in various nonstandard ways, like cuddling, and stimming, and making noises and repeating words that other people say.
3. People who don't communicate in a recognizable way. It is hard to tell why they do any of the things they do, and obviously, if they were able to tell us why, they wouldn't be 3 anymore.
I should mention, most of the people I've met who were classified as severely autistic were 2.5. I've met very few people who were 3. I've met absolutely no 3 people who seemed to me to be receiving adequate education that fit their needs; I'm not sure that anyone is doomed to 3-ness if their family can get them the right services.
And I should also mention, if I didn't already make it obvious, that many people, maybe even most people, are not one number for their whole life.
But I do feel different from some ASD people. And it would be stupid for me to claim that I am just like the curebie poster kids; I care a lot about those kids and in some ways when they are hurt it is a personal thing, but the truth is, right now, at least, I talk, and I go to school, and I buy my own groceries and I don't seriously hurt myself and I don't stim in front of other people. I wouldn't call the way I am Asperger's, because except for talking, none of those things are things that all Asperger's people do.
I think that different ASD people have different levels of independence, passing ability, and communication. I think I can say, confidently, that the kinds of autistic people are:
.5. People who are perceived as normal, nice, sane, intelligent, not going through a personal crisis, and not on drugs.
1. People who look normal--not necessarily really normal, but normal enough that they can walk down the street without having someone freak out that they're being left unattended. People who can talk--not necessarily so well that people don't think they're on drugs, or being rude, but well enough that they are not immediately pegged as someone who should not be alone.
2. People who are usually immediately pegged as having some kind of disability, and may require support staff, but have some way of expressing themselves really well. They may not speak, but they are recognized as intelligent by the people in their lives, and they can make decisions about how they want to live (if other people are willing to accept those decisions).
2.5. People who cannot communicate that well. If they use words, it might not be in ways that other people can understand. They might have learned to use either speaking or augmented communication to express things like being hungry or being tired. And of course they can still relate to other people in various nonstandard ways, like cuddling, and stimming, and making noises and repeating words that other people say.
3. People who don't communicate in a recognizable way. It is hard to tell why they do any of the things they do, and obviously, if they were able to tell us why, they wouldn't be 3 anymore.
I should mention, most of the people I've met who were classified as severely autistic were 2.5. I've met very few people who were 3. I've met absolutely no 3 people who seemed to me to be receiving adequate education that fit their needs; I'm not sure that anyone is doomed to 3-ness if their family can get them the right services.
And I should also mention, if I didn't already make it obvious, that many people, maybe even most people, are not one number for their whole life.
Subscribe to:
Posts (Atom)
