I finished this a while back but hadn't really gotten to posting all of it. It's here:
http://autisticpassing.tumblr.com
go to the last page and scroll up
(eta: just kidding, I put this in the queue thinking I'd have time to finish posting the passing project, but I actually haven't)
Showing posts with label possible passing project. Show all posts
Showing posts with label possible passing project. Show all posts
17 June, 2011
13 February, 2011
some Autistic Passing Project rough-drafting, help please!
I'm getting together the questions for my passing project survey, and was wondering if anyone had any ideas for how to organize the questions or write them more clearly. My plan is to ask questions fairly broadly and loosely, but these are some areas I'm thinking of covering. (See the possible passing project tag for some posts I wrote when I was originally thinking up this project.)
1. Did you start passing on purpose? If so, when and how did you make the decision?
2. What are some things about you that might give you away, which you're very conscious of? Do you feel something's wrong with your voice? The way you walk? The way you hold your hands? The words you use? Your history?
3. If you are still passing (to some extent, in certain environments, or all the time) can you explain your reasons for doing so? What would be the consequences of not passing?
4. If you belong to one or more other minority groups (I'll probably include a list of examples of what this could mean), does this have anything to do with how and why you started passing? For example, did you feel that belonging to one minority was isolating enough without also being on the autism spectrum? Did you feel that people might be convinced to accept one, but not more than one? Is this because of the number of minority identities, or because some minority identities might be more easily accepted than others?
5. If you belong to a minority group which you don't or can't hide your membership in, do you think this affects your ability to pass? An example would be a passing Autistic person who is the only black student in his high school, who starts to be stereotyped as "the black student," and therefore is less likely to be read as Autistic. Or maybe he becomes highly visible because he is the only black student, and must work harder to pass. Etc.
6. Have you ever made yourself more visibly different in order to pass? For example, you might dress in an unusual way to distract from the more subtle ways in which you are different. Or, you might try to take on a class clown or subcultural persona so that everything about you that is different will be perceived as part of that persona.
7. Have you ever made yourself more visibly normal in order to pass? What did you do?
8. This question sounds like a bad poem, but bear with me. Have you ever felt attracted to the idea of becoming more visibly different? For example, did you want to injure yourself in a way that would change your appearance? Did you want to tell a dramatic lie about yourself, get a lot of body modifications, or drastically change your weight? Etc.
9. Have you ever had someone notice signs of your autism, but interpret it as indicating something unrelated to autism? For example, have people interpreted you as being drunk or high when you're not, or being upset when you're not? How does this make you feel? Have you ever used these assumptions as part of your passing system?
10. Have you ever been in a situation where someone else was seen as disabled, or as being on the spectrum in particular, but you were assumed to be "normal"? For example if you were a counselor at a summer camp for kids with autism, and the counselor culture assumed that none of the counselors had autism. Or if you're a relative of a more visibly or severely disabled person, and people put you in the position of "non-disabled relative of a disabled person." Or if you're taking a psychology, education, or disability studies course where you talk about people with developmental disabilities, with the assumption that no one in the class has such a disability. Is this upsetting for you in any way? On the other hand, does it make you feel more secure about your ability to pass because someone else is taking the attention off you? Do you ever put yourself in these situations on purpose, because you can pass better?
11. Do you ever say no to things you want to do, because you are passing? If so, what are some of those things?
12. Do you ever limit potential friendships or relationships, because you are passing? For example, being reluctant to spend a whole day with someone you really like, because you know you couldn't act normal for a whole day.
13. What do you think other people's reactions to you are? This question covers both what you think intellectually, and what you feel. For example, someone might feel that everyone is judging them and thinks they're a loser, when they know that's actually not true.
14. How do you feel about sexual and romantic acts (including solitary acts like masturbation, and non-genital acts like kissing, holding hands, and roleplaying)? How do you feel about sexual and romantic relationships?
15. How do you feel about food?
16. How do you feel about self-injury, and injury/pain in general (for example, getting in a fistfight, getting shots, or going to the dentist)?
17. How much do you feel depressed or experience anxiety or dissociation (feelings that aspects of your life aren't real or that you are someone else)? If you experience those things, what does it feel like?
18. Have you ever been in a "covering" situation--that is, a situation where everyone knows you're on the autism spectrum, but you still have to perform. For example, you might have to act in a certain way to offset people's expectations about what someone with autism is like. Or you might have to express gratitude for being given a particular job, friendship, relationship, etc., despite your autism.
19. Do you identify as disabled? Do you identify as A/autistic? Why or why not? What do you think it would mean (or does mean) for you to identify with either or both of those terms?
20. Have you ever been told, by a professional or someone else, that you have recovered from your autism or that you don't have autism anymore?
21. Do you feel like something is wrong with your face? Why or why not?
I find myself thinking that I should cut up these questions into thematic clusters of very short specific questions, because these questions seem very overwhelming to me the way they're written now and I can imagine people would have trouble answering them. Also...they're such leading questions a lot of them. But it's not a scientific study so I don't know if I really feel that bad about that.
Also (semi-related) I made a formspring which I feel like might make me more accessible both for people who are taking the survey, and in general. I made that big post about how I wanted to get in contact with people and then I actually get overwhelmed by or forget some of the emails I receive, so this might be a better way to do that because I can answer people more impulsively and not have to remember for a long period of time.
1. Did you start passing on purpose? If so, when and how did you make the decision?
2. What are some things about you that might give you away, which you're very conscious of? Do you feel something's wrong with your voice? The way you walk? The way you hold your hands? The words you use? Your history?
3. If you are still passing (to some extent, in certain environments, or all the time) can you explain your reasons for doing so? What would be the consequences of not passing?
4. If you belong to one or more other minority groups (I'll probably include a list of examples of what this could mean), does this have anything to do with how and why you started passing? For example, did you feel that belonging to one minority was isolating enough without also being on the autism spectrum? Did you feel that people might be convinced to accept one, but not more than one? Is this because of the number of minority identities, or because some minority identities might be more easily accepted than others?
5. If you belong to a minority group which you don't or can't hide your membership in, do you think this affects your ability to pass? An example would be a passing Autistic person who is the only black student in his high school, who starts to be stereotyped as "the black student," and therefore is less likely to be read as Autistic. Or maybe he becomes highly visible because he is the only black student, and must work harder to pass. Etc.
6. Have you ever made yourself more visibly different in order to pass? For example, you might dress in an unusual way to distract from the more subtle ways in which you are different. Or, you might try to take on a class clown or subcultural persona so that everything about you that is different will be perceived as part of that persona.
7. Have you ever made yourself more visibly normal in order to pass? What did you do?
8. This question sounds like a bad poem, but bear with me. Have you ever felt attracted to the idea of becoming more visibly different? For example, did you want to injure yourself in a way that would change your appearance? Did you want to tell a dramatic lie about yourself, get a lot of body modifications, or drastically change your weight? Etc.
9. Have you ever had someone notice signs of your autism, but interpret it as indicating something unrelated to autism? For example, have people interpreted you as being drunk or high when you're not, or being upset when you're not? How does this make you feel? Have you ever used these assumptions as part of your passing system?
10. Have you ever been in a situation where someone else was seen as disabled, or as being on the spectrum in particular, but you were assumed to be "normal"? For example if you were a counselor at a summer camp for kids with autism, and the counselor culture assumed that none of the counselors had autism. Or if you're a relative of a more visibly or severely disabled person, and people put you in the position of "non-disabled relative of a disabled person." Or if you're taking a psychology, education, or disability studies course where you talk about people with developmental disabilities, with the assumption that no one in the class has such a disability. Is this upsetting for you in any way? On the other hand, does it make you feel more secure about your ability to pass because someone else is taking the attention off you? Do you ever put yourself in these situations on purpose, because you can pass better?
11. Do you ever say no to things you want to do, because you are passing? If so, what are some of those things?
12. Do you ever limit potential friendships or relationships, because you are passing? For example, being reluctant to spend a whole day with someone you really like, because you know you couldn't act normal for a whole day.
13. What do you think other people's reactions to you are? This question covers both what you think intellectually, and what you feel. For example, someone might feel that everyone is judging them and thinks they're a loser, when they know that's actually not true.
14. How do you feel about sexual and romantic acts (including solitary acts like masturbation, and non-genital acts like kissing, holding hands, and roleplaying)? How do you feel about sexual and romantic relationships?
15. How do you feel about food?
16. How do you feel about self-injury, and injury/pain in general (for example, getting in a fistfight, getting shots, or going to the dentist)?
17. How much do you feel depressed or experience anxiety or dissociation (feelings that aspects of your life aren't real or that you are someone else)? If you experience those things, what does it feel like?
18. Have you ever been in a "covering" situation--that is, a situation where everyone knows you're on the autism spectrum, but you still have to perform. For example, you might have to act in a certain way to offset people's expectations about what someone with autism is like. Or you might have to express gratitude for being given a particular job, friendship, relationship, etc., despite your autism.
19. Do you identify as disabled? Do you identify as A/autistic? Why or why not? What do you think it would mean (or does mean) for you to identify with either or both of those terms?
20. Have you ever been told, by a professional or someone else, that you have recovered from your autism or that you don't have autism anymore?
21. Do you feel like something is wrong with your face? Why or why not?
I find myself thinking that I should cut up these questions into thematic clusters of very short specific questions, because these questions seem very overwhelming to me the way they're written now and I can imagine people would have trouble answering them. Also...they're such leading questions a lot of them. But it's not a scientific study so I don't know if I really feel that bad about that.
Also (semi-related) I made a formspring which I feel like might make me more accessible both for people who are taking the survey, and in general. I made that big post about how I wanted to get in contact with people and then I actually get overwhelmed by or forget some of the emails I receive, so this might be a better way to do that because I can answer people more impulsively and not have to remember for a long period of time.
05 October, 2010
some more passing thoughts
I wrote a long thing in a notebook to be a possible intro to my passing project if I do it...then decided I kind of don't want to have a big intro, I can just include my experiences mixed in anonymously with everyone else's. But anyway.
I talked about passing. I said it is often conventionally associated with people of color passing for white. I said that trans men and women talk about "passing," but it's not exactly the same since you are actually trying to be perceived as the correct gender, not the wrong one. But then I thought, if you are passing for cis that is kind of "passing as something you're not" because being cis implies stuff about your history and physiology, but nonetheless you are misleading people about small things in order to get them to recognize a big, true thing: your correct gender.
But then I thought about how passing as straight had once felt a little bit like this for me. When I was [one of] the only visible queer kid[s] in my school, everything else about me disappeared, so the person I was being perceived as wasn't me at all. When I started going into new environments and intentionally keeping quiet or lying about being SSA, I felt like myself again. People again noticed the details of who I was.
And also, the way normal people talk about people with ASD often deprives us of agency and an inner life. It is assumed that for example people wouldn't stim or monologue if they just understood that it is not normal. The way a person walks or talks is analyzed; the abnormalities are pointed out with no thought of how a person who walks or talks that way might feel as they are going about their life. Things are said, like, "The 'active and odd' type...I worked with an autistic boy and when I said hello how are you, he talked about his special interests. He wanted to engage with me--that's active--but he did so in an abnormal fashion--that's odd." So our choices and personalities just become symptoms.
I am canny. And I am careful to the point of having significant anxiety problems. So for a long time, I felt that being seen as ASD would actually erase who I really am. The fact that I have green hair wouldn't be seen as a choice or even a covering mechanism, but a sign that I maybe am not good at dyeing my hair and made a mistake, or don't understand what is a normal way for a girl to present herself. And I felt that stylized and strange things I do because I have too much anxiety to do things the normal way, or just don't know how, would be seen as thoughtless, and just "behaviors" that show what people like me are like.
The other week, I wrote an email to a kid I don't know super well, but would like to know better. He knows I have ASD because of a workshop we were in together where I wrote about it. My email said something like, "Dear ___, I would like to be friends with you, and when we ate together the other week it was very nice, but now when I see you I feel like you avoid talking to me for very long, do you think I'm weird? Sincerely Amanda. (This is a joke.)"
Now, the reason I said "this is a joke" is because I sometimes tend to try to initiate friendships in ways that seem very abrupt (although this kid has done some friendship initiation towards me, such as sitting with me in the dining hall and stuff) and to avoid being self-conscious, and because I'm not going to agonize over phrasing something in a super normal way, I will instead intentionally phrase something in a very twee, stylized, overdramatic way. It's the Manic Pixie Dream Girl act, a little bit, but I've dropped a lot of that I'm glad to say, but I still have an instinct to approach people in the twee stylized way, and you know, it works for me, I don't really regret it.
But anyway, then as I was going to send it I thought "But he knows I have ASD. So maybe he'll just think that I really write like that all the time and don't know any other way to write, and that I genuinely think he doesn't like me because the last time we said hi to each other we didn't have a conversation." So I added "This is a joke." And a while later he wrote back expressing positive/friendship sentiments (we'll see how this goes, but I don't think it was different than the sort of thing normal people say to other normal people when they're thinking of becoming friends) but also wrote "I don't know what you mean about it being a joke" and then I wrote back explaining.
Anyway. Um, I would like my passing project to be kind of a collage of voices, and maybe some actual collaging with images too around the words. But then I feel concerned that I will almost be taking away people's agency and using them as examples, just like I'm afraid of professionals, or people who are "interested in autism," doing to me. For example, if someone writes a very low-key, long, almost cheerfully listless description of some experience, but at one point buried in all that is the sentence, "The way she was acting was making me want to kill myself." If I take that sentence because it's striking and use it as a headline, isn't that a way of kind of erasing who the person really is?
I talked about passing. I said it is often conventionally associated with people of color passing for white. I said that trans men and women talk about "passing," but it's not exactly the same since you are actually trying to be perceived as the correct gender, not the wrong one. But then I thought, if you are passing for cis that is kind of "passing as something you're not" because being cis implies stuff about your history and physiology, but nonetheless you are misleading people about small things in order to get them to recognize a big, true thing: your correct gender.
But then I thought about how passing as straight had once felt a little bit like this for me. When I was [one of] the only visible queer kid[s] in my school, everything else about me disappeared, so the person I was being perceived as wasn't me at all. When I started going into new environments and intentionally keeping quiet or lying about being SSA, I felt like myself again. People again noticed the details of who I was.
And also, the way normal people talk about people with ASD often deprives us of agency and an inner life. It is assumed that for example people wouldn't stim or monologue if they just understood that it is not normal. The way a person walks or talks is analyzed; the abnormalities are pointed out with no thought of how a person who walks or talks that way might feel as they are going about their life. Things are said, like, "The 'active and odd' type...I worked with an autistic boy and when I said hello how are you, he talked about his special interests. He wanted to engage with me--that's active--but he did so in an abnormal fashion--that's odd." So our choices and personalities just become symptoms.
I am canny. And I am careful to the point of having significant anxiety problems. So for a long time, I felt that being seen as ASD would actually erase who I really am. The fact that I have green hair wouldn't be seen as a choice or even a covering mechanism, but a sign that I maybe am not good at dyeing my hair and made a mistake, or don't understand what is a normal way for a girl to present herself. And I felt that stylized and strange things I do because I have too much anxiety to do things the normal way, or just don't know how, would be seen as thoughtless, and just "behaviors" that show what people like me are like.
The other week, I wrote an email to a kid I don't know super well, but would like to know better. He knows I have ASD because of a workshop we were in together where I wrote about it. My email said something like, "Dear ___, I would like to be friends with you, and when we ate together the other week it was very nice, but now when I see you I feel like you avoid talking to me for very long, do you think I'm weird? Sincerely Amanda. (This is a joke.)"
Now, the reason I said "this is a joke" is because I sometimes tend to try to initiate friendships in ways that seem very abrupt (although this kid has done some friendship initiation towards me, such as sitting with me in the dining hall and stuff) and to avoid being self-conscious, and because I'm not going to agonize over phrasing something in a super normal way, I will instead intentionally phrase something in a very twee, stylized, overdramatic way. It's the Manic Pixie Dream Girl act, a little bit, but I've dropped a lot of that I'm glad to say, but I still have an instinct to approach people in the twee stylized way, and you know, it works for me, I don't really regret it.
But anyway, then as I was going to send it I thought "But he knows I have ASD. So maybe he'll just think that I really write like that all the time and don't know any other way to write, and that I genuinely think he doesn't like me because the last time we said hi to each other we didn't have a conversation." So I added "This is a joke." And a while later he wrote back expressing positive/friendship sentiments (we'll see how this goes, but I don't think it was different than the sort of thing normal people say to other normal people when they're thinking of becoming friends) but also wrote "I don't know what you mean about it being a joke" and then I wrote back explaining.
Anyway. Um, I would like my passing project to be kind of a collage of voices, and maybe some actual collaging with images too around the words. But then I feel concerned that I will almost be taking away people's agency and using them as examples, just like I'm afraid of professionals, or people who are "interested in autism," doing to me. For example, if someone writes a very low-key, long, almost cheerfully listless description of some experience, but at one point buried in all that is the sentence, "The way she was acting was making me want to kill myself." If I take that sentence because it's striking and use it as a headline, isn't that a way of kind of erasing who the person really is?
then I got excited
after I made that post and didn't do my homework, because I was thinking how cool it would be to do a project collecting writing/talking from people with ASD who pass or have passed
some areas of LOOK HOW SUPER COOL THIS WOULD BE:
insecurities about stimming/gait etc. Or other things, like speech, or intensity, that people think will give them away
opting out of initiating things, getting too close to people, going into certain environments, because of a fear of getting into a situation where you won't be able to pass
covering rather than/in addition to passing. Passing to avoid covering.
being put in a position of assumed normalcy in relation to people with disabilities and/or mental illnesses--special ed teacher or staff person, student in a psych class, psychiatrist, parent of a disabled child, sibling of a more "visibly" disabled or ill person
intersections of unread ASD with other identities that aren't always read, and/or that the person consciously hides or covers (including ethnicity, class, being same-sex-attracted or trans, other illnesses or disabilities)
intersections of unread ASD with identities that are obvious to everyone (basically everything I just listed can also be "visible")
people who feel disconnected/unreal because of passing, or feel their relationships are damaged by their passing
people who are not read as ASD, but are read in some other negative way instead
decisions to stop passing, how they are made and their affects. Or, people who stop passing and feel they can't help it or don't really have a choice
having people tell you that your ASD isn't real or significant, because of the way you look or speak
anything else?
some areas of LOOK HOW SUPER COOL THIS WOULD BE:
insecurities about stimming/gait etc. Or other things, like speech, or intensity, that people think will give them away
opting out of initiating things, getting too close to people, going into certain environments, because of a fear of getting into a situation where you won't be able to pass
covering rather than/in addition to passing. Passing to avoid covering.
being put in a position of assumed normalcy in relation to people with disabilities and/or mental illnesses--special ed teacher or staff person, student in a psych class, psychiatrist, parent of a disabled child, sibling of a more "visibly" disabled or ill person
intersections of unread ASD with other identities that aren't always read, and/or that the person consciously hides or covers (including ethnicity, class, being same-sex-attracted or trans, other illnesses or disabilities)
intersections of unread ASD with identities that are obvious to everyone (basically everything I just listed can also be "visible")
people who feel disconnected/unreal because of passing, or feel their relationships are damaged by their passing
people who are not read as ASD, but are read in some other negative way instead
decisions to stop passing, how they are made and their affects. Or, people who stop passing and feel they can't help it or don't really have a choice
having people tell you that your ASD isn't real or significant, because of the way you look or speak
anything else?
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