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. I think breaking it up into sections would really help. I'm also curious to know what some of the questions have to do with passing, particularly the last one (do you mean like, facial expressions? Or facial features?).

    I'm so excited to take this survey. And to read other people's responses! Unless it's a private survey in which case I won't get to read other people's responses.

  2. I'm making an art project out of the responses. so you can read them in an anonymous/rearranged form.

    anyway, I am interested in knowing whether passing and/or the experience of having a disability affects stuff like body image--I could be wrong in my guesses, but it seems worth asking. for example I've read that some disproportionate number of women with eating disorders have ASD, and the explanation given is always that core aspects of ASD (rituals, etc.) predispose you to eating disorders, which I think is totally possible, but I also wonder if passing and being part of a stigmatized group can predispose you to them as well.

  3. I think this sounds like a very interesting project. I like the quesitons, but I'd also say that breaking them into sections whould make them less overwhelming.

  4. Can people answer this if they're not autistic, but have some other kind of disability?

  5. Yeah. I'll probably decide later where the line is but my definitions of Autistic and passing, for the purposes of who should actually take the survey, are pretty broad.

    Do any of you think I missed anything? Both major/specific stuff, and things along the lines of "do you think something's wrong with your face?" (In terms of questions like that, I am curious to find out if there are particular neurosis or ways of reacting to things that are common for passing people.)

  6. They are all well explained questions and make sense. When are you posting the survey?

    I like the last question the best.
    I KNOW there is something wrong with my face. It moves funny and I smile crooked (fake or real). What makes me extremely frustrated is that no person alive will ever just tell me the truth when I ask for an honest response? Why not? Why don't people just tell the truth instead of being polite. It's like they think I'm asking them if I'm ugly. I know I'm beautiful, I just have a messed up face. Why can't those two things ever be separate? Just like being social and talking. They are separate things, but people ALWAYS combine them. Anyway it is the bane of my existence (not really), it just feels that way sometimes.

  7. This is great.

    I wrote up some of my stuff already, in kind of a form that's something like a story. Some stuff doesn't fit into any question too well. :/ Is it ok if I include it at the end?

    I like questions 11, 12, and 13. :)

  8. Jess has brought up an interesting point. These are all very good questions, but maybe "something wrong with your face" needs to be explained, like "is your face symmetrical or are their clues to your neurological differences in your face--nose crooked from the base (so that the tip is centered in the middle of a tooth instead of between the two front teeth), or the jawbone is too big for the joint (you may have heard this from your dentist). Or is this question referring only to the funny facial expressions that we make and don't notice until people point them out. As for the eating disorders, they may involve our impulsiveness, eating for comfort and achieving some control all rolled up into one big dose of self-medication--since we know we're not normal, and even when we are brave enough to ask people for feedback, they will not be frank and will give off body language that confirms they know we are different while denying it with their words.
    Also, I'm really glad not to be in this alone. Not glad for all of you, but glad for me.