Questionnaire about Aspie Community, pls help,for conference

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Hi, I am going to be doing a presentation for the Penn Autism Network Conference in Philadelphia about Aspie and autistic communities. In preparation for this presentation, I am trying to find out how people percieve Aspie/autistic communities. I know how I feel about them, but I need to find out what other people think of them.

It would help me out greatly if you could answer the following questions. Thank you so much!
I really appreciate all your help. Your answers will help the public learn more about us.

Aspie/Autistic Community Questionnaire

Any replies that I use in my presentation will be anonymous, unless you specify otherwise.

These questions apply to both online communities and in person communities. (So please be patient if the questions seem to apply more to one or the other.)

Preliminary questions: what is your gender, age, and if you are comfortable giving it, your geographical location?

1. What is your connection to Asperger's or autism?

2. Do you consider yourself part of an Aspie or autism community?

Is this community online or in person?
Does it have a name?
Can you describe it? (How many people, how often do you meet, what do you talk about)

3. How long have you been part of this community?
How did you find it?
What were your thoughts upon first finding it?

4. What does being part of an AS/autism community mean to you?

5. Define Aspie/autie community.

6. What are the best parts about being part of this community?

7. What do you think should be improved about being part of an AS/autism community?

8. Do you think overall it is beneficial to be part of an AS/autism community, and why?

9. Did you, and do you still, feel isolated before you found this community? Does being part of this community help lessen your sense of isolation, and if so, how?

10. Have you met any other AS/autistic people in person? What has that experience been like? How is it different from being with non AS/autistic people?

11. If you could create the perfect AS/autistic support group or community, what would it be like? Please describe it. (ideas: how big/composition of group/where would you meet/for how long/what would you do/what would you talk about/would there be any sensory concerns that would impact how you designed the meeting/etc)

12. Some people have suggested buying some land and developing a community of only people on the autistic spectrum.
Would you like to live in a community of only people on the autistic spectrum?
If yes, what do you think the benefits of doing this would be?
What would your perfect Aspie/autistic commune be like?

13. Would you go to an Aspie or autistic support group if there were one in your town? Why or why not?

14. If you are a person who has created an Aspie or autistic support group, what has this experience been like? What have been the easiest and most enjoyable parts, and what are the most difficult parts, both of setting up the group and running it?

Thank you for your time!

Kate Goldfield

Hi I do think yes to it but, I have gone to a Mental health drop in centre instead as it offers a wide range of help, other mental health people, advice, counceling, social skill classs and many other classes, activities. I find As groups to be limited.

/*
Mental health support and information. One-to-one counselling. Information on mental health issues, training, employment, benefits etc. Social and therapeutic activities such as games, outings, arts and crafts etc. There is a drop-in centre so no referral is needed. Anyone with mental health issues can access the service.

Opening Times

Monday, Tuesday and Thursday 2pm until 9pm, Saturday and Sunday 1pm until 5pm. Office only Wednesday and Friday 10am until 4pm
*/

Sorry if you only want to hear about As/autism groups but I like to add depth to something instead of focusing on what groups people would / be pointed to / or think is best.

That aside if you want to note about it...


Preliminary questions: what is your gender (male), age (22), and if you are comfortable giving it, your geographical location? (UK)

1. Asperger's.
2. Yes.
3. Online.
4. Not much really just contact to information...
5. Communities can be defined by interest in particular problems or outcomes, or other common bonds.
6. Share things in common...
7. Offline (Not focusing on 1 thing many mental health people have alot in common, more organization ).
8. Online, not really because I spend way too much time been on it...
11. I would take the mental health drop in centre I am with and install the autistic part into it, but probably be a waste of money, unless they is alot of As round here I only know of 4.
12. We are defined as a culture, but what we lack would destroy us. Hydro cars, solar powered buildings so on, no discrimination of difference, model of practical put back into the world, and the old application of getting a job by just showing them your skill. Have a futuristic look, Underground housing, and ignore this if I got it wrong

Again sorry for not staying to the boundaries of your questions... But it will tell you of my view...

1. Asperger's.
2. Yes.
Online.
4. A place to share/learn
5. A place to share/learn
6. Sharing and learning
7. Hard to say
8. Online, I AM addicted to it, so that is problematic
9. OF COURSE!
10. Only one. It was ok, but relatively brief.
11. That is hard to say.
12. I think logitech is wrong about us being destroyed by what we lack. I DID earlier run a few businesses. NEXT time, I would be a bit more serious about income.
13. As long as there were enough there, or they were similar enough to me, SURE!

Steve

1. What is your connection to Asperger's or autism?
I believe I have Asperger’s though my impairment is very narrow and mild.

2. Do you consider yourself part of an Aspie or autism community?
Absolutely!
Is this community online or in person?
Online.
Does it have a name?
Wrong Planet
Can you describe it? (How many people, how often do you meet, what do you talk about)
8000 members, but probably only about 80 active. We talk about everything under the sun.

3. How long have you been part of this community?
Six months.
How did you find it?
T*A*S*C
What were your thoughts upon first finding it?
My family!

4. What does being part of an AS/autism community mean to you?
This is where I feel like I fit in.

5. Define Aspie/autie community.
?
Wrong Planet is an online resource and support community for those with AS and related issues, and other interested persons.

6. What are the best parts about being part of this community?
Convenience, it’s 24/7, and timing. I need time to process what other people have said and to think about what I want to say. It meets my social needs in a very suitable way.

7. What do you think should be improved about being part of an AS/autism community?
?

8. Do you think overall it is beneficial to be part of an AS/autism community, and why?
Absolutely! Some of these people are in a pretty bad way and have no other support resource. All of us benefit from contact with people like ourselves. Also, we learn how very different we are from each other, and how similar we can be to NTs.

9. Did you, and do you still, feel isolated before you found this community? Does being part of this community help lessen your sense of isolation, and if so, how? Yes, being part of this community helps lessen my sense of isolation. I have someone to talk to when I come home from work, or not, if that’s what I want.

10. Have you met any other AS/autistic people in person? What has that experience been like? How is it different from being with non AS/autistic people?
I have not met any other AS/autistic people in person that I know of, but surely there are some on the campus where I work.

11. If you could create the perfect AS/autistic support group or community, what would it be like? Please describe it. (ideas: how big/composition of group/where would you meet/for how long/what would you do/what would you talk about/would there be any sensory concerns that would impact how you designed the meeting/etc)
Wrong Planet is pretty good in an imperfect world. It tries to be family friendly with a minimum of rules.

12. Some people have suggested buying some land and developing a community of only people on the autistic spectrum.
Would you like to live in a community of only people on the autistic spectrum?
Not sure.
If yes, what do you think the benefits of doing this would be?
Same as onine, but more so.
What would your perfect Aspie/autistic commune be like?
Not in the city.

13. Would you go to an Aspie or autistic support group if there were one in your town? Why or why not?
Maybe.

14. If you are a person who has created an Aspie or autistic support group, what has this experience been like? What have been the easiest and most enjoyable parts, and what are the most difficult parts, both of setting up the group and running it?

N/A

To SteveK:-

Destroy defined = (To damage a combat system so badly that it cannot perform any function or be restored to a usable condition without being entirely rebuilt.)

and lack as in (the state of needing something that is absent or unavailable)

I thought destroy meant basically to make worthless, and lack meant to not have something. And neither one is a "big word", not that I care. HECK, write it in german, danish, hindi, french or spanish, or YEP even english! HAVE AT IT! Use all the big words you want. I might even like russian, etc... BTW I mean NO disrespect. I'm just taken aback by your feel to need to define these words.

Stll, I don't get what you could mean. I thought you meant to say that we would end up getting hurt because of something we didn't have. Frankly, if a bunch of AS people got together, a lot of the problems they have today would disappear. A lot of others could be mitigated! Still others, at the very least, would be better accepted.

Steve

Just for the heck of it, I like taking surveys!

Ai: Male, 16, Wellington NZ (althoug I'm on holiday in Holland right now, heheh!)

A1: The fact that I had it myself. I got diagnosed when I was about 11 or so.

A2: Yes, it's online, it's called WP, and it's a great place where I can hang out and talk to limitless lengths and topics. It has a lot of people, all with their own troubles and hardships (some are bad and some not so), and there's a lot of them (heading to 10,000 now!).

A3: I've been part of this community for about four months. I found it following Aspergers being mentioned as a factor in my exams. I was curious, so I looked it up on Wikipedia. When I first found it, I was nervous at first, and yet glad I found people of like minds, even more than me! I joined a few weeks later, and have been posting like a maniac since!

A4: I don't exactly get what 'means to you' is supposed to suggest, but I do think it's very important, and certainly life-changing for me, despite the fact that I've never had any serious AS-related problems in the past. I'll have to get back to you on this.

A5: I think it's best defined as a bunch of people with AS/autism, but it can include a wide variety of people who aren't, such as parents and siblings (my sister on WP, under the username PhoenixTears, and she's NT), or maybe people like you or those who want to know more about us.

A6: I think the best part has been that there are people like me, not that I had a problem with people not being like me before. It was comforting to know that I now had a source where I could pour all my happiness, adventures and sorrow and stuff and have an understanding audience. The community also has a sense of authenticity to it, as in you get everyone's comments and tricks of the trade that wouldn't be found in things like an Encyclopedia for Aspies/Auties or a Wiki. It also takes up a rainy afternoon quite well!

A7: I think the one thing I'd like to change is the particular hatred of NT's among a few of the users. Not all NT's are mean, only the ones who are or the ones who we choose to be (ALL of my life-long friends are NT, friendly, and cool to be with to boot). Apart from that, this place is perfect!

A8: It's not beneficial, but it certainly is a great help if your in an AS/Autism pickle. I don't know of any other site around where you can get nice and friendly advice which has (as a result of the AS/Autism re-wiring) probably been mentioned countless times before.

A9: I didn't feel isolated in my younger years, however I've found through looking back that there was a certain feeling of not being able to relate to my peers mentally-wise. One time I asked my pals "Have you ever had a time when you couldn't stop thinking about something and just HAD to know everything about it, and then after it was all over wonder why you did it?", and was met with some blank stares instead of the "Oh yeah, I get that too!" that I expected.

WP has helped in the way that I can relate to people and share experiences, and things that no-one else could ever brag about.

A10: Yes, although the results have varied. So far I only know of two, and they were both school friends. One I hated the guts out of because for a time I was his obsession, and he would follow me all around school and follow me home (his house was nearby mine). When the obsession died away, I was greatly releived. The other friend I got along with well. We both had computer know-how, so we would be coming up with cool new ideas in Game Maker and be playing around with the Windows Themes and funny fictional viruses to unleash on the unsuspecting public.

Lately, a good friend I've met through WP is likely to be coming down to NZ from California to meet me, and I have no doubt that it'll be a very pleasant meeting!

I haven't exactly noticed any differences, except that the non-AS/autistic ones seem to be more topic-changing, but they're more funny than the AS/Autistic ones.

A11: I don't have the mindset for this right now (check back for an Edit later), but it would be such that it would suppourt them in every way, from NT outlooks to obsession sources and ways of dealing with sensory-related problems.

A12: I don't think I would want to live in an Aspie/Autie community, partly because, as diverse as we can be, there would be a sense of repeditiveness to it, but mainly because I'd lose frequent contact with my friends and all that. Plus it would suggest a sense that we'd want to "Stuff everbody else and segregate ourselves on purpose, no Others allowed". Like an adult version of the No Girls Allowed sign on your old tree-house.

A13: Probably, but I wouldn't have much interest in it because I've already found WP first, which is far better than I could ever have hoped for. Things might've been different if you would ask me this if I didn't know about WP, but knew about my AS.

A14: Ask Alex for this one!

Preliminary questions: what is your gender, age, and if you are comfortable giving it, your geographical location?

Female
25 (August, 1981)
St. Louis

1. What is your connection to Asperger's or autism?

I am Aspergers.

2. Do you consider yourself part of an Aspie or autism community?

Yes, several.

Is this community online or in person?

Online. Used to be part of a rl meetup group, but it no longer exists.

Does it have a name?

Yes, I mostly am at Gestalt, which is a forum I own and help run with a great bunch of folks. I'm also on WP a fair amount, though not as much as I used to be. I go to Fractalus as well, even though it's not officially an ASD forum all the members are ASD so far. And I've also just started going to the autistics.org forum as well.

Can you describe it? (How many people, how often do you meet, what do you talk about)

I'm on every day on Gestalt. At present we have about 144 members, also some are doubles for the admin accounts, others members who've not come back, and quite a few prefer to lurk and read. We basically talk about just anything that comes up. However, it is specifically an ASD and Psychology discussion forum. But the topics aren't held to that.

For WP, I'm on about every day or every other day for a couple posts. There's obviously a lot of members.

For Fractalus, there's not many members, but there's a handful of consistent ones who are enjoyable to interact with.

For autistics.org forum, it's new (I think) so there's not a lot of activity yet. I go on once a day or every other day.

3. How long have you been part of this community?

For Gestalt, ever since it started. That was since about last March or April (2006).

For WP, ooh, I think it was April of 2005 I think. Somewheres around there.

Fractalus, just a couple weeks actually.

autistics.org, a couple days.

How did you find it?

Gestalt? I made it.

WP, I think just through Google. It's hard to miss.

Fractalus, an online friend told me about it.

autistics.org, same thing, an online friend.

What were your thoughts upon first finding it?

Gestalt, not sure that's applicable. Excited?

WP, I don't even recall. Not negative.

Fractalus, good thoughts. Nice community.

autistics.org, same.

4. What does being part of an AS/autism community mean to you?

I like being part of a community. I like thinking that I might be able to make a difference. It also helps give me some identity and guidance that I was lacking prior. And it also gives a lot of support, and I hope I'm able to give some in return.

5. Define Aspie/autie community.

A group of ASDs, online, irl, anywhere. Bound by commanilities.

6. What are the best parts about being part of this community?

Like I said, it's immeasurably helpful to have the support, to have many people who have a good idea what life can be like for an autie. While still acknowledging our indivuality of course.

7. What do you think should be improved about being part of an AS/autism community?

I wish the many different online communities were a bit more... cooperative? I mean, for the most part, we basically all have the same goals. To have smaller communities but all interconnected and pulling our weight together to achieve things, I wish it were more like this.

8. Do you think overall it is beneficial to be part of an AS/autism community, and why?

Yes, for the support, the friendships, gaining more self-identity...

9. Did you, and do you still, feel isolated before you found this community? Does being part of this community help lessen your sense of isolation, and if so, how?

I still feel isolated somewhat. But that's a quality of my own life preferences and difficulties. But these online forums have helped a great deal. I can't express how much.

10. Have you met any other AS/autistic people in person? What has that experience been like? How is it different from being with non AS/autistic people?

Yes, several. It's strange. I think sometimes we have such strong personalities it may be more probable we just don't get along together. But then, I've only met a couple.

11. If you could create the perfect AS/autistic support group or community, what would it be like? Please describe it. (ideas: how big/composition of group/where would you meet/for how long/what would you do/what would you talk about/would there be any sensory concerns that would impact how you designed the meeting/etc)

I hope we're on the right track with Gestalt. We want to start expanding it so it can dually be a social community like it is now, but also a good place to find resources.

12. Some people have suggested buying some land and developing a community of only people on the autistic spectrum.
Would you like to live in a community of only people on the autistic spectrum?

No, probably not. I would enjoy being more in touch with auties irl. But like I said earlier, I think we're more prone to have strong personalities and I haven't found too many auties I wouldn't mind being around for more than a couple minutes, hehe.

13. Would you go to an Aspie or autistic support group if there were one in your town? Why or why not?

Yes, there was one. But it sort of went defunct. I tried to help start it and get it going. But there just wasn't enough interest beyond a parents group.

14. If you are a person who has created an Aspie or autistic support group, what has this experience been like? What have been the easiest and most enjoyable parts, and what are the most difficult parts, both of setting up the group and running it?

The hardest part was getting auties to come. Getting the group leader organized without totally taking over the running of it. And also not letting the nonautistic parents start taking over and dictating everything.

Preliminary questions: what is your gender, age, and if you are comfortable giving it, your geographical location?
18, Male, East Bay Area in California.

1. What is your connection to Asperger's or autism?
I have AS.

2. Do you consider yourself part of an Aspie or autism community?
Yes, I do, if WrongPlanet counts. I'm not in a real life one.

Is this community online or in person? Online.
Does it have a name? WrongPlanet.
Can you describe it? (How many people, how often do you meet, what do you talk about) I go on about every day. It's got quite a few people. We talk about all things AS and some things not AS at all, but sometimes give these things an obsessive AS spin.

3. How long have you been part of this community? I've been here almost a year. I joined in February 2006.
How did you find it? One of my online friends told me about it.
What were your thoughts upon first finding it? I was intigued and wanted to see how I liked the people there.

4. What does being part of an AS/autism community mean to you? A lot of things. A place to go when you need support, or want to partake in discussion of AS-related philosophies.

5. Define Aspie/autie community. A group of at least 20 people who regularly speak to one another about AS or HFA.

6. What are the best parts about being part of this community? The stories I read here. Very fascinating! The support's great, too, and it's a nice way to meet people.

7. What do you think should be improved about being part of an AS/autism community? The arguements need to be minimized. When we get into arguements here, the posts are enormous, and it takes forever to write them. That needs to stop.

8. Do you think overall it is beneficial to be part of an AS/autism community, and why? Yes, because you find out how other aspies are like and unlike you, and it gives you a broader idea of the spectrum. It also is very helpful to be around people with some of the same difficulties as you.

9. Did you, and do you still, feel isolated before you found this community? Does being part of this community help lessen your sense of isolation, and if so, how? It lessened it because it gave me another place for online social interaction, but I still feel just as isolated in real life.

10. Have you met any other AS/autistic people in person? What has that experience been like? How is it different from being with non AS/autistic people? Yes, I knew a girl with HFA in high school. I didn't get along well with her, though she seemed to enjoy my company. She annoyed me because she reminded me of the things I disliked about myself, and because she was so sheltered and ignorant about so many things.

11. If you could create the perfect AS/autistic support group or community, what would it be like? Please describe it. (ideas: how big/composition of group/where would you meet/for how long/what would you do/what would you talk about/would there be any sensory concerns that would impact how you designed the meeting/etc) Ideally it wouldn't be huge, because too many people would make it overwhelming for all. I guess this would be a real life support group, where everyone WAS supportive and accepting, or at least tried their best to be--ideally this would be an excercise for us all as we all tried to be supportive and understanding despite our deficit of empathy. There wouldn't be anything to bother the senses.

12. Some people have suggested buying some land and developing a community of only people on the autistic spectrum.
Would you like to live in a community of only people on the autistic spectrum? I don't think so. There has to be contrast. Without NT, there is no AS.
If yes, what do you think the benefits of doing this would be? N/A (though one benefit is we'd know more people that we could relate to better)
What would your perfect Aspie/autistic commune be like? I'm not really sure, honestly.

13. Would you go to an Aspie or autistic support group if there were one in your town? Why or why not? Yes. I'd need the support.

14. If you are a person who has created an Aspie or autistic support group, what has this experience been like? What have been the easiest and most enjoyable parts, and what are the most difficult parts, both of setting up the group and running it? N/A (I have not.)

Good luck with your presentation!! ^_^