me: it's so weird to have this identity that's massively important to me that I feel like someone could just take away
untoward.lady: nods
I have felt like that about my autism for a long time
...
you know something though? A lot of people have told me I'm not autistic or "not really autistic" or some other you're-really-"normal" statements but I have never, EVER been accused of being neurotypical by an autistic person
ever
sometimes those who have power over us, like doctors and "autism moms" and bureacrats and stuff will try to deny us who we are and tell us that we can't belong to our community
but that's why we have a community
31 January, 2011
30 January, 2011
from the inside, #3
Talk disabled to me.
If you want me to have a crush on you and/or consider you one of my best friends, this is a pretty surefire way to do it. I'll make it easy for you, actually, if I think you're going to be good at it. It goes like this:
"Wait, well, I mean, do you think I'm really disabled?"
And then you list the reasons I am disabled.
My friend Ari does this. He is Up There in my estimation as a result. One time he spent a really long time telling me all about how I'm disabled in different areas. It basically felt the same as if he made me a cake.
Some people will have no idea what this means and will probably take it as some kind of self-hatred. That's cool, you guys, because I actually hate you for having that reaction. These posts are called "from the inside" because they don't concern themselves overmuch with explaining a bunch of context to people who haven't experienced it and can't put two and two together to understand how other people feel.
If you do understand how I feel...well, I don't hate you. And if you want me to opposite-of-hate you, you know how to do it.
If you want me to have a crush on you and/or consider you one of my best friends, this is a pretty surefire way to do it. I'll make it easy for you, actually, if I think you're going to be good at it. It goes like this:
"Wait, well, I mean, do you think I'm really disabled?"
And then you list the reasons I am disabled.
My friend Ari does this. He is Up There in my estimation as a result. One time he spent a really long time telling me all about how I'm disabled in different areas. It basically felt the same as if he made me a cake.
Some people will have no idea what this means and will probably take it as some kind of self-hatred. That's cool, you guys, because I actually hate you for having that reaction. These posts are called "from the inside" because they don't concern themselves overmuch with explaining a bunch of context to people who haven't experienced it and can't put two and two together to understand how other people feel.
If you do understand how I feel...well, I don't hate you. And if you want me to opposite-of-hate you, you know how to do it.
29 January, 2011
I basically have an abusive relationship with the DSM
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.)
[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.)
27 January, 2011
ANNOUNCEMENT GROUP BLOG YOU GUYS!!
So, FWD/Forward ended, which is really bad because my hands don't know how to exist without typing in http://www.disabledfeminists.com to my URL box a million times a day. Sort of as a reaction but also just because it gave us the idea, Julia and I are starting a disability group blog called LOVE-NOS.
The name isn't meant to indicate that only people with mind disabilities are included. We want to practice love not otherwise specified, which basically means that we don't want the blog to be the kind of blog where people feel under a lot of pressure to follow certain rules in order to be allowed there--which sometimes happens in social justice spaces. We'd like people to behave decently and listen to what other people have to say but this doesn't always mean agreeing.
We are just starting out and a lot of what we're thinking about now is just how to do basic things to encourage love-NOS (the feeling) at LOVE-NOS (the blog). In terms of content, I would really like to do some stuff in terms of sharing disability news and promoting writing and art by disabled people; and also just writing about disability in general the way we write on our own blogs, of course. (Although I'm thinking a less personal focus, at least sometimes, than a personal blog.) We really want more contributors and hopefully some of the structure of LOVE-NOS will reveal itself as we learn who is interested in being a contributor, and what their interests and abilities are.
If you would like to be a contributor, you have to identify as disabled or thereabouts and have some ideas for things to post. This is the only requirement, although we're hoping obviously for contributors who have different identities and disabilities from us so the blog can be more accessible and useful to everyone.
Just comment here or there or something or you know how to contact me or...whatever. It's going to be sweet!
!!!!!11111<----look, look how great it's going to be, look at the elevens.
ETA: it's been 14 hours and no one volunteered, I'm going to start calling on people.
The name isn't meant to indicate that only people with mind disabilities are included. We want to practice love not otherwise specified, which basically means that we don't want the blog to be the kind of blog where people feel under a lot of pressure to follow certain rules in order to be allowed there--which sometimes happens in social justice spaces. We'd like people to behave decently and listen to what other people have to say but this doesn't always mean agreeing.
We are just starting out and a lot of what we're thinking about now is just how to do basic things to encourage love-NOS (the feeling) at LOVE-NOS (the blog). In terms of content, I would really like to do some stuff in terms of sharing disability news and promoting writing and art by disabled people; and also just writing about disability in general the way we write on our own blogs, of course. (Although I'm thinking a less personal focus, at least sometimes, than a personal blog.) We really want more contributors and hopefully some of the structure of LOVE-NOS will reveal itself as we learn who is interested in being a contributor, and what their interests and abilities are.
If you would like to be a contributor, you have to identify as disabled or thereabouts and have some ideas for things to post. This is the only requirement, although we're hoping obviously for contributors who have different identities and disabilities from us so the blog can be more accessible and useful to everyone.
Just comment here or there or something or you know how to contact me or...whatever. It's going to be sweet!
!!!!!11111<----look, look how great it's going to be, look at the elevens.
ETA: it's been 14 hours and no one volunteered, I'm going to start calling on people.
26 January, 2011
good brains wearing clothes
1. I can wear clothes that don't match (mismatched patterns, sneakers with a dress, pajamas in the daytime) and people will perceive this as an expression of my style rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.
2. I can go outside with messy hair, messy clothes, or a half-grown beard, and people will perceive this as an expression of my style, or lack of caring, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.
3. If I am perceived as female and I don't shave, people will perceive this as an expression of my politics, or lack of caring, or gender expression, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.
4. If I have a "childish" hairstyle (pigtails or braids, very long hair, a big cloud of curly hair) or if I wear clothes with children's cartoons on them, people will perceive this as an expression of my sense of humor, aesthetics, or interests, rather than thinking that I am like a child, or that my parents or guardians want me to be a child.
5. If I dress extremely nicely and formally, I don't feel like this is something I have to do to compensate for my disability.
(ETA: can someone explain lol_meme to me? I'm so confused right now.)
2. I can go outside with messy hair, messy clothes, or a half-grown beard, and people will perceive this as an expression of my style, or lack of caring, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.
3. If I am perceived as female and I don't shave, people will perceive this as an expression of my politics, or lack of caring, or gender expression, rather than thinking that I don't know any better, or that my parents or guardians aren't taking good care of me.
4. If I have a "childish" hairstyle (pigtails or braids, very long hair, a big cloud of curly hair) or if I wear clothes with children's cartoons on them, people will perceive this as an expression of my sense of humor, aesthetics, or interests, rather than thinking that I am like a child, or that my parents or guardians want me to be a child.
5. If I dress extremely nicely and formally, I don't feel like this is something I have to do to compensate for my disability.
(ETA: can someone explain lol_meme to me? I'm so confused right now.)
I hope everyone is reading Josh's tumblr posts today. I read one and went back to sleep and then there were MORE!
Buffy, Faith, and Camus
..ok sorry to go on about this but more Buffy thoughts.
..I mean I’m not saying Willow is an elitist, classist bitch
The initial crime that marks her out and separates her from the Scooby Gang is not so much accidental manslaughter but not displaying a socially normative emotional reaction to a traumatic event...I’m sure the well meant concern and flapping from the Scoobies, and having Buffy’s deeply empathic grief thrust at her pours considerable salt on this alienation. Perhaps if they’d not made a value judgement on Faith’s psyche, she wouldn’t have become what- from that moment- they feared she may well be?
A++
Buffy, Faith, and Camus
..ok sorry to go on about this but more Buffy thoughts.
..I mean I’m not saying Willow is an elitist, classist bitch
The initial crime that marks her out and separates her from the Scooby Gang is not so much accidental manslaughter but not displaying a socially normative emotional reaction to a traumatic event...I’m sure the well meant concern and flapping from the Scoobies, and having Buffy’s deeply empathic grief thrust at her pours considerable salt on this alienation. Perhaps if they’d not made a value judgement on Faith’s psyche, she wouldn’t have become what- from that moment- they feared she may well be?
A++
25 January, 2011
stuff I wish I'd known
being in 9th grade and being cast in this play as a character who didn't exist--the teacher who was directing planned to divide up lines between my character and another character. During vocal warmups every cast member had to say one of their lines and we would all repeat it, but this made me feel awful because I didn't know which lines were mine, because we hadn't gotten to blocking that scene yet. I didn't want to steal someone else's lines. I dreaded warmups so much, because of this one moment, that I tended to skip rehearsals and go to the art room and hang out with Joan. Eventually I got caught, no real harm done; I explained to the teacher several years later, once I could talk to her.
being in 9th grade and always being told my mom to wash my face in the morning and brush my teeth with the electric toothbrush. I didn't wash my face usually--it just happened--I couldn't really explain why I dreaded the sensation of putting water on my face. I just avoided it and felt guilty because I knew it was my fault I didn't have better skin. The electric toothbrush was so loud and full of movement that it filled my head with compulsive horrible thoughts; I usually used it but sometimes I had to turn it off or use a manual toothbrush.
same with toilets (always).
being in 7th grade and having to go to tae kwon do lessons. It started with this ordeal of "conditioning"--running in place, holding weights, while loud music played. It wasn't the exercise, I liked other parts of tae kwon do, but the combination of the movement and the loud music caused all the compulsive horrible thoughts. On the mornings of lesson days, at school, I'd write these little rhyming poems that I could repeat over and over in my head during conditioning to try to keep from having the thoughts. Or I'd memorize certain Yeats poems, which had a good rhythm.
why didn't I tell my teacher to just turn the music off? I guess for other people the music probably helps. It just didn't occur to me that the music was anything other than part of life. Maybe I thought that the compulsive thoughts were part of what conditioning was supposed to be like. It didn't occur to me to say it out loud.
I remember beautiful things like all the time I spent figuring out how to trace words in my head. Like, should I connect the letters? Tracing every word that I thought or heard, like in sixth or seventh grade I think this was. It took time but I had time.
But I also remember that I didn't just tell Mrs. M. that I was upset because I felt like I was stealing other people's lines. Or that I tended to just avoid loud things without thinking and couldn't explain why. And I knew my diagnosis for a lot of these incidents. It's just I didn't know how to talk, or that no one was there to tell me what it meant.
being in 9th grade and always being told my mom to wash my face in the morning and brush my teeth with the electric toothbrush. I didn't wash my face usually--it just happened--I couldn't really explain why I dreaded the sensation of putting water on my face. I just avoided it and felt guilty because I knew it was my fault I didn't have better skin. The electric toothbrush was so loud and full of movement that it filled my head with compulsive horrible thoughts; I usually used it but sometimes I had to turn it off or use a manual toothbrush.
same with toilets (always).
being in 7th grade and having to go to tae kwon do lessons. It started with this ordeal of "conditioning"--running in place, holding weights, while loud music played. It wasn't the exercise, I liked other parts of tae kwon do, but the combination of the movement and the loud music caused all the compulsive horrible thoughts. On the mornings of lesson days, at school, I'd write these little rhyming poems that I could repeat over and over in my head during conditioning to try to keep from having the thoughts. Or I'd memorize certain Yeats poems, which had a good rhythm.
why didn't I tell my teacher to just turn the music off? I guess for other people the music probably helps. It just didn't occur to me that the music was anything other than part of life. Maybe I thought that the compulsive thoughts were part of what conditioning was supposed to be like. It didn't occur to me to say it out loud.
I remember beautiful things like all the time I spent figuring out how to trace words in my head. Like, should I connect the letters? Tracing every word that I thought or heard, like in sixth or seventh grade I think this was. It took time but I had time.
But I also remember that I didn't just tell Mrs. M. that I was upset because I felt like I was stealing other people's lines. Or that I tended to just avoid loud things without thinking and couldn't explain why. And I knew my diagnosis for a lot of these incidents. It's just I didn't know how to talk, or that no one was there to tell me what it meant.
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