Aspies For Freedom

I’ve been lurking about for a while now, learning lots from everyone here. Finally a good chat with Amy last week convinced me I should start a thread and speak up at last. (Thanks, Amy!)

Disclosures first: I am a researcher. Specifically a graduate student in the field of discourse analysis – I am a linguist who studies the social functions of language.  In particular, I’m interested in how language can be used to empower communities – how people use language to resist stereotypes and define their own identities.  I should be very clear here: linguists are _not_ interested in changing the way people speak - they want to understand how language is actually used in the world.

I am interested in AFF for several reasons: I support the goal of neurodiversity, and the elimination of prejudice and intolerance of all kinds. I think AFF provides a safe place where Aspies are valued and celebrated, which I think is a vital part of creating wider social change.  I feel like the voices of people on the spectrum are missing from the “usual” public discourse on autism, and AFF fills that void.  And I am especially interested in how the internet makes all this possible – how a site like this can create an international community.  It seems like the Aspie community has appropriated the Internet as a primary way to interact with one another, and I’m hoping to learn more about how that’s happening.

My initial research project is what anthropologists call an “ethnography” – which just means learning what it means to belong to a community. I’m NT myself, and as Amy suggested, I think it’s important to make that clear – so maybe to some degree I can’t really be a part of the Aspie community.  But I’ve noticed how open people seem to be to the presence of NTs on this site – so perhaps that’s a membership I can work toward.  I hope that some of you will be willing to share with me your input, your individual perspectives, and your suggestions.  

But I also need to disclose that I’m interested in the language in the forum posts, since the process of empowerment is done through text.  In other words, I’m not only interested in what you have to say, but also (and especially) how you actually say it.  This is the kind of data that I use for my work – and I’m happy to explain more about that if it’s helpful. The point is, I am hoping to collect data here, too – with your permission.  If possible, I’d like to be able to contact the authors of individual posts and the contributors to threads, and ask for their individual permission to “record” their posts to use for analysis. I will only use posts that I have permission for.

I know that researchers have a less-than-stellar reputation in some self-advocacy and activist circles. (For a funny example of the kind of researcher I don’t want to be, check out this link at the Institute for the Study of the Neurologically Typical – a hysterically funny site, if you haven’t seen it:  http://isnt.autistics.org/ntskills.html )  I don’t have any “scientific questions” – at the moment I just want to get to know the members here and learn as much about the community as I can.  But I do hope you’ll tell me what you think of this proposal. If you have thoughts or suggestions, I’d love to hear them.

Sorry for such a long-winded post! I just wanted to be as clear as possible about my interests here, and of course I’ll clarify further as necessary.  I’ll look forward to your responses!
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energeia

agreed - it's internet, it's public


Jen

I'd probably don't mind, but I'd be not the best guinea pig for this study (like some others I believe) for I'm not a native speaker and a lot of my "specialties" in using the language might descend from that fact. You should take that into consideration, for not all ppl here have stated where they origin from.

Anyway, I think it's ok if you ask for permission - there's nothing wrong in asking  :smile:  It's usually being spied upon what people upsets here.

Sibylle

THanks so much for your warm responses.  I'll try to answer some of the issues you raised. Energeia, you asked about NT vs. AS distinctions - I've thought a little about this. Initially, I thought it might be problematic... but actually I don't think it is so much, because the info that's available to me is the same as what's available to the rest of the forum. That means that people will only disclose/self-identify when they think it's important - and since it's _members'_ sense of importance I'm interested in, it shouldn't actually matter whether a person has a diagnosis, or is self-diagnosed, or is NT, unless it actually comes out in the posts. (I'm not sure that was the most clear way to put it - if not, I'll try to rephrase.)

As to hypotheses: one of the really useful things about this kind of research (ethnography) is that a researcher is supposed to try not to "come in" with any ideas from the outside.  Any sense of what's meaningful or important is supposed to come from the observations - so anthropological research is really different from a hypothesis-driven "test,"  which you'd be more likely to find in, say, neurological or psychological research.

As for how long the research might take - that's a really, really good question. I'm hoping this might turn into a sort of longer-term study - maybe even a year or two. But it's hard to tell this far out, since I really don't even know what questions I'll eventually be asking.  So that's probably not a very good answer to your question, but for now that's all I can predict.

As to what led me to the community - it's kind of a long story, but the short version is that the more I learned about autism, the more I learned about the importance of self-advocacy. And the more I learned about that, the more I realized how central websites like AFF are in the process of creating a community. (Maybe I'll post another message later discussing that in more detail.)

As to native speaker vs. foreign speaker, and whether fellow linguists make good subjects - which jobron and Sibylle brought up - in my way of thinking, every speaker is equally valid as a speaker and as a member of AFF, though, as Sibylle pointed out, sometimes it might be necessary to consider the differences in where people are from.

Thanks for your questions and thoughts! I'm off to school now (alas - 8:45 am in the eastern US...) but I'll check in again this afternoon.

I forgot to respond to one of energeia's points - the one about sharing my research. I would be happy to share once it's completed, of course - I think the participants in the study would have a right to know what I found!

You are most welcome Jen!  Have you seen the article by Edan on the Aspergia website, on "re-branding Asperger's," which inspired many of us to get involved in this effort?

http://www.aspergia.com/lead.htm

Changing the language of the social discourse regarding autism is my main goal at present. I have been working for the past year on a project to collect (and distribute to other sites) an extensive list of links to web pages that describe autism in positive and/or civil rights terms.  My objective is to increase the visibility of autistic activism on the Internet so that mainstream society will begin to perceive the autistic population as a minority group seeking civil rights.

I'm looking at the language issue in terms of risky shift theory; that is, although the prevailing descriptions of autistic people in the media, etc., are extremely negative and prejudiced, to such an extent that most of us would be aghast if such terms were used to describe any other group, most individuals will not take the personal risk of supporting autistic civil rights (and, in many cases, will not even notice the prejudice) until they see others standing up to challenge the stereotypes in large numbers.  When this happens, a group shift in perception will occur.

Please feel free to check out my links on Aspergian Pride, and if you have any suggestions for good articles I may have overlooked, I hope you'll let me know!

So do I. But as far as discourse analysis goes. I think it has place in various outlets.  I would hadly call it linguistics. Grammar in the mind  or really the neurons is the real subject matter. Not  a lot of the fluffy bs that many say

Bonnie, thanks so much for the links and info. I've been to your site before, and I really enjoy it. I hadn't seen the article you referenced; I'm just about to sit down and read it. Perhaps you'd be willing to talk/email/chat with me more at some point about your own experiences?

cookieman, your point about DA not really being a part of linguistics is a pretty familiar criticism, and is commonly heard from people with a more "theoretical" bent. I agree that grammar in the mind is fascinating - but to me what's utterly mind-boggling is what we _do_ with that machinery.  Not all linguists would agree with me on that point, but I think all sociolinguists would. What kind of linguistics are/were you interested in?

Thanks Jen, if you want to send me an e-mail or a private message, go ahead; I don't often chat because I prefer to take more time to think about my responses.

oh, and Sibylle - I noticed that you're from Germany, which got me feeling all nostalgic. I spent a couple years there in the north, on the Baltic coast for a while and then in Goettingen; es fehlt mir jetzt so sehr! Ich fand es besonders schoen so gegen Weihnachten, wenn's gluehwein und lebkuchen und raeuchermaennchen gibt.  I hope the season there is lovely, or at least not too rainy... :smile:

If you really what to hear harsh just ask me on my viewpoint on
optimality syntax. whew! thats a doozy.

I like minimalism, GB. optimality theory on phonology(!)  prosodic morphology has caught my fancy.

Jen

Well, I live a bit north of Goettingen and we rarely have lots of snow. But these days, west of where I live, a lot of ppl don't like snow anymore. They had too much and the power supply lines broke, so a lot of the people have been up to 4 or 5 days without electricity - a rare happening in Germany.

Yes, I like christmas time, too, but more for the olfactory pleasure - smelling cinnamon and spices, different teas, the smoke from the oven where I sit in the evening and so on. And yes, I like Raeuchermaennchen and Gluehwein (sometimes - it causes headaches if one drunk too much).

Sibylle

Sorry for the delays in responding - meant to get back to this discussion earlier, but I've been in bed sick most of the day. Rats.

Energeia, you raised some really good points. The definition of ethnography you found is a pretty good basic one, I think - though it mentions "living with" a group, which isn't always possible (obviously). I guess I'd say I agree with what's stated in that definition, while also pointing out that it's very generalized. The generalization is probably necessary, though, because each ethnography is so different.

You asked about how an online ethnography compares with cultural sites

I think there are some ways in which an "online" ethnography would differ from one that takes place in a geographic location, but most of the basic questions could be transferred; what's most at issue for ethnographic studies is how membership is consituted.  So, for example, one of the threads that I found really interesting was the one where John Best started issuing very unwelcome statements about how he "knew" that "autism is curable." In their responses to his statements, members issued complaints about his conduct - and from those complaints, a person like me can begin to understand what some basic "rules of conduct" - or rituals, if you like - might be. (e.g., don't use this forum as a platform for advancing ridiculous claims or intolerant rhetoric).

The two issues you pointed to are dead-on. They're linked very closely, but I think they are to some degree separate processes: how does community get constructed online (I think this has a lot to do with shared goals); and how does language in these online interactions facilitate self-empowerment.

My own participation will probably shape up more as I go along - I feel like I've been very fortunate to discuss these issues with such receptive people so far, anyway! (of course I always say that my opinions are worth what you pay for them.  :lol: )  

Cookieman, I wish I had enough experience to comment thoughtfully on OT - sadly, the phonology side of my coursework has been rather skimpy. But I really enjoyed syntax - GB came easier; the minimalism stuff has me a bit buffaloed still. Last I recall, I had to do a presentation on Lasnik that nearly killed me. But that "mathematical" treatment of language definitely has its appeals...

Delayed again - drat. My end-of-semester exams are coming up and what with my fun new cold and my general discombobulation, I'm running around like a chicken with its head cut off!

Anyway, energeia, thanks for your willingness to participate. This is the only Aspie community I know so far, though I'd like to get in touch with folks in my area eventually. I'm glad to hear that you'd be willing to 'engage in intellectual musings' with me - I'd like to ask you, (or anyone else who'd be interested) whether you'd be willing to just pm me if you see any discussions on the forum that you think relate to the overall issue of Aspie empowerment. I don't have anything in particular in mind here at all - I'd just like to know which issues members identify as important to empowerment (as opposed to just making guesses myself).
Does that make sense?

And thanks for your kind get-well wishes. I'm feeling much better now, sitting here with a nice cup of tea and getting ready to hit the books  - sigh...

Hi Jen! Linguistics is cool. I don't mind your study, but it was very considerate to tell us about it. :smile:

What do you like knitting Jen?