Starting Online Autistic Support Group - Need Feedback!

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BigSister
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23 Jun 2014, 4:45 am

For many reasons, most Autistic people don't have access to traditional support groups. General population autism support groups tend to actually just be parent groups (which can be quite the opposite of supportive). Support groups for actual Autistic people are often NT-led, which isn't always a good experience, either. And, of course, support groups for Autistic people are rather rare, and your odds of running into one outside of a large metropolitan area aren't so great.

So, Colin had the idea of making one online, and invited my sister Caley and I to help. This will be an Autistic-led endeavor for Autistic adults, online with lots of communication options (you can type or speak, with or without video). We're still working on the details of the group, it hasn't started yet, which is why we need you guys' help! What kind of demand is there for it, should there be sub-groups, what time(s) should we have meetings, what do you guys want to talk about, and all those sort of things.

Here's the introductory YouTube video by Colin:
http://www.youtube.com/watch?v=3qS9GWMymO4

And here's the web-page about the group with a survey you can take to tell us what you're looking for in a group:
http://www.autismspectrumexplained.com/ ... group.html

Before you guys say it, yes, WP is kind of like an online Autistic support group. It serves a similar function through different means. But, it's still definitely a different experience and we wanted to open up the additional option of a live support group to people.

If you could give us your feedback, either on this thread or in the survey, we'd super appreciate it! Thanks so much!

BigSister


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Aspendos
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23 Jun 2014, 5:35 am

Interesting idea.

One concern certainly would be privacy. In a small local support group everyone will likely know everyone else, while on Wrong Planet everyone's anonymous. An online support group would likely be somewhere in between. People may want to know each others names, but may not be comfortable talking via skype about their problems when (as we all know) some other group member might record the session (even for legitimate reasons, because they can't process quickly enough and want to rewatch it later) or even someone from outside the group might might gain access.

There's also likely to be a lot more "turnover" in an online support group - people leaving, new people joining. These frequent changes may be difficult to deal with for some on the spectrum.

There may also be a language barrier. People who are not native English speakers may feel more comfortable writing in English (at their own pace) than speaking it, particularly as many of us don't have anyone to practice speaking a foreign language with.

Also, if participants live in different countries (I'm just guessing from the accent that Colin's not from the US) they may experience similar problems, but in vastly different circumstances due to different government policies in their respective countries, etc. It may therefore be difficult, for example, for a participant from the US to really help/advise someone who lives in the UK or Australia.

There's also a time zone problem. When it's evening in the US, it's night in the UK and morning in Australia.



oblio
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23 Jun 2014, 6:24 am

At the very least check out grasp.org

I have not been keeping up to date with my exploring autism for maybe three years, but maybe the book I was given by my uncle and aunt from Canada, when I had just self-discovered and confirmed (however poorly the first dx was), who happened-to-be-visiting-and-came-across-this-at-the-airport-shop, maybe that book is still really the only book that deals with more or less all issues one finds oneself confronted with in dealing with late(r)-in-life-discovery.

Point being, the writer, Michael John Carley, then also was the guy heading GRASP - I figured good book, wouldn't mind becoming involved in something related. Somehow, life took me elsewhere, at least for a while, so I have little experience with GRASP myself.

I even had a look at the link... and oops, it's there already.
Don't let it hold you back, but you may just want to prevent doing double work, and see if connecting with them might be a plan...


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BigSister
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23 Jun 2014, 8:11 am

Aspendos wrote:
Interesting idea.

One concern certainly would be privacy. In a small local support group everyone will likely know everyone else, while on Wrong Planet everyone's anonymous. An online support group would likely be somewhere in between. People may want to know each others names, but may not be comfortable talking via skype about their problems when (as we all know) some other group member might record the session (even for legitimate reasons, because they can't process quickly enough and want to rewatch it later) or even someone from outside the group might might gain access.

There's also likely to be a lot more "turnover" in an online support group - people leaving, new people joining. These frequent changes may be difficult to deal with for some on the spectrum.

There may also be a language barrier. People who are not native English speakers may feel more comfortable writing in English (at their own pace) than speaking it, particularly as many of us don't have anyone to practice speaking a foreign language with.

Also, if participants live in different countries (I'm just guessing from the accent that Colin's not from the US) they may experience similar problems, but in vastly different circumstances due to different government policies in their respective countries, etc. It may therefore be difficult, for example, for a participant from the US to really help/advise someone who lives in the UK or Australia.

There's also a time zone problem. When it's evening in the US, it's night in the UK and morning in Australia.


Aspendos, you actually made me feel really good, because really, almost all of those issues we have covered! If you look at the survey, we actually ask what time zone/country people are in. We ask it so we can try to figure out an appropriate time for meetings, or to see if we need to hold multiple meeting times, so people can join in whichever one they want.

Also, there's diversity among the facilitators in that regard. Colin's from the UK, Caley and I are from the US. :) There's also diversity of experiences. Caley and I are in our early/mid twenties and female, Colin, of course, is male and he's 38. Caley grew up with a spectrum diagnosis, while Colin just got diagnosed and I've never been diagnosed. Caley considers herself an Autistic person, Colin considers himself a person with Asperger's, and I consider myself to be questioning, but I generally just say "At least BAP." You get the idea, we're all very different people and I imagine those that join will be, too. (We don't plan on being leaders of the group so much as facilitators, and we want people in the group to learn from each other, too.)

We will not be using Skype. We'd be using either Go To Meeting or Adobe Connect, we haven't decided yet. I don't know about Go To Meeting (we divvied up the research amongst ourselves) but in Adobe Connect a participant can't record the chat. Facilitators can (as Colin, Caley, and I would be), but there's a flashing sign that automatically comes on and alerts participants that the session is being recorded. So I don't think that will be an issue.

The anonymity thing is not such a big deal, we don't have to know people's real and/or full names. :) There may be more turnover, but there's actually an awful lot of turnover with traditional support groups, too (I volunteered at one for years), and that's just a problem we'll have to face.

We offer communication choices of typing or talking. You do not have to speak out loud. This is more for the benefit of people who are non-speaking, but it can definitely be a benefit to those who aren't comfortable with their English, too. :)

I think that should address all your concerns! :D If you're interested, please click on the link and take the survey! :) (And, hey, even if you're not I'd still be interested in your thoughts.)

BigSister

Edited to add: Oops, I forgot to post the link again! Here it is! :) http://www.autismspectrumexplained.com/ ... group.html


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BigSister
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23 Jun 2014, 8:28 am

oblio wrote:
At the very least check out grasp.org

I have not been keeping up to date with my exploring autism for maybe three years, but maybe the book I was given by my uncle and aunt from Canada, when I had just self-discovered and confirmed (however poorly the first dx was), who happened-to-be-visiting-and-came-across-this-at-the-airport-shop, maybe that book is still really the only book that deals with more or less all issues one finds oneself confronted with in dealing with late(r)-in-life-discovery.

Point being, the writer, Michael John Carley, then also was the guy heading GRASP - I figured good book, wouldn't mind becoming involved in something related. Somehow, life took me elsewhere, at least for a while, so I have little experience with GRASP myself.

I even had a look at the link... and oops, it's there already.
Don't let it hold you back, but you may just want to prevent doing double work, and see if connecting with them might be a plan...


Yikes, they really need to do some better advertising or positioning themselves online, because seriously, all three of us checked. We Googled, Reddited, Facebooked, YouTubed, and not a single person mentioned them (presumably because they hadn't heard of them) nor did our own searches uncover anything (save for our own group's page). That's kind of not good. Maybe because we were searching autism and their official title is Asperger's? (Do they focus on Asperger's alone?)

I see that you have to be a member to join a group, too....will tell Caley and Colin about this and see what they think and we'll all investigate. In the meanwhile, there seem to be enough differences between the proposed group and current group that it seems safe to operate under the assumption that we're going forward with our own group. Thanks for letting us know, though! :)


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BigSister
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23 Jun 2014, 8:49 am

Hm...or maybe not a safe assumption, looking at what they offer. Will check with Colin and get back to you guys...if we decide to join forces, I will definitely ask them if they want some help with advertising, lol. :)

Edited to add: Nope, we're definitely still on. A mailing group is not the same as a live online support group.


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Last edited by BigSister on 23 Jun 2014, 9:36 am, edited 1 time in total.

Aspendos
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23 Jun 2014, 9:06 am

Well, the most obvious difference would seem to be that despite the name GRASP isn't a global group. It's based and active in the US. So won't be any help to Colin or anyone not living in the US. (I think GRASP may have a global mailing list, but that's about it.)



BigSister
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23 Jun 2014, 9:13 am

Aspendos wrote:
Well, the most obvious difference would seem to be that despite the name GRASP isn't a global group. It's based and active in the US. So won't be any help to Colin or anyone not living in the US. (I think GRASP may have a global mailing list, but that's about it.)


I'll have to look into that more. GRASP seems to REALLY want to make people become members to get info about them, because until my membership is approved I have all of next to no access to information about their programs. (Almost all the pages are blocked.) But in an online support group, unless the time zone is an issue (and I have no way of knowing when their groups meet, as I said, I seriously can't view anything right now), I would think that would be accessible world wide. ?


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Aspendos
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23 Jun 2014, 9:28 am

BigSister wrote:
Aspendos wrote:
Well, the most obvious difference would seem to be that despite the name GRASP isn't a global group. It's based and active in the US. So won't be any help to Colin or anyone not living in the US. (I think GRASP may have a global mailing list, but that's about it.)


I'll have to look into that more. GRASP seems to REALLY want to make people become members to get info about them, because until my membership is approved I have all of next to no access to information about their programs. (Almost all the pages are blocked.) But in an online support group, unless the time zone is an issue (and I have no way of knowing when their groups meet, as I said, I seriously can't view anything right now), I would think that would be accessible world wide. ?


Here's a cached version of the page:

http://webcache.googleusercontent.com/search?q=cache:2ZBCk87Qtp0J:grasp.org/page/grasp-support-groups+&cd=1&hl=en&ct=clnk&gl=uk

Their online groups are not "skype" groups, but mailing lists ("discussion groups"). The other groups they run meet physically.



BigSister
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23 Jun 2014, 9:34 am

Aspendos wrote:
BigSister wrote:
Aspendos wrote:
Well, the most obvious difference would seem to be that despite the name GRASP isn't a global group. It's based and active in the US. So won't be any help to Colin or anyone not living in the US. (I think GRASP may have a global mailing list, but that's about it.)


I'll have to look into that more. GRASP seems to REALLY want to make people become members to get info about them, because until my membership is approved I have all of next to no access to information about their programs. (Almost all the pages are blocked.) But in an online support group, unless the time zone is an issue (and I have no way of knowing when their groups meet, as I said, I seriously can't view anything right now), I would think that would be accessible world wide. ?


Here's a cached version of the page:

http://webcache.googleusercontent.com/search?q=cache:2ZBCk87Qtp0J:grasp.org/page/grasp-support-groups+&cd=1&hl=en&ct=clnk&gl=uk

Their online groups are not "skype" groups, but mailing lists ("discussion groups"). The other groups they run meet physically.


Ah! I see! Okay, so that's a different matter altogether, a mailing list is very different from a live chat. In that case, we're still on! :)


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oblio
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23 Jun 2014, 10:08 am

i remember wanting to get involved, by possibly setting up a group in Holland, i think there were some aspie-self-support groups outside of the USA, but not a lot, nope

i think the "global & regional" do work well in creating a good aspie name in Grasp ;]] maybe that's the reason, plus of course an amount of optimistic mission thinking hehehe

i did note a live chat thingy, available upon signing in... (there were 2 users...)

okay, time to turn to Holland v Chile, and i so believe the dutch coach is an aspie ;]]]
(it would explain sooooo much)

good luck


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BigSister
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23 Jun 2014, 6:23 pm

oblio wrote:
i remember wanting to get involved, by possibly setting up a group in Holland, i think there were some aspie-self-support groups outside of the USA, but not a lot, nope

i think the "global & regional" do work well in creating a good aspie name in Grasp ;]] maybe that's the reason, plus of course an amount of optimistic mission thinking hehehe

i did note a live chat thingy, available upon signing in... (there were 2 users...)

okay, time to turn to Holland v Chile, and i so believe the dutch coach is an aspie ;]]]
(it would explain sooooo much)

good luck


WP has live chat, too. What we're hoping to do though, is have live chat to allow people to participate in a support group, which is rather different...but thanks for letting me know!

Hope the team you were rooting for (presumably Holland won! (Sorry, I don't follow soccer, so I haven't the faintest who came out victorious.)


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Katte
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02 Jul 2014, 7:56 pm

I would like more information about a live chat or online support group. Thanks!



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14 Nov 2015, 7:21 pm

If the online support group is still going, I would like to know more about it and possibly join?



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26 Nov 2015, 6:22 pm

In regards to my earlier posts, since I can't delete them.

I've decided to opt out and not join the Skype group after all and due to a change of heart, no longer want to add people onto Skype from wp.

Rather not disclose the reasons why, just a change of heart.

No longer accepting friend requests sorry.

The group is a great idea and all the best with creating the support group but it's not for me personally. Don't feel comfortable in a group setting, rather speak one to one with people.

All the best though



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26 Nov 2015, 6:28 pm

In real life, the only viable support group I have ever found is a Meet-up group for the socially anxious. 80% of the group are on the spectrum, the rest a mix of generalised anxiety, OCD and "lifeache". In fact if not name it is an Aspergers support group, and the sum has been much greater than the parts; I have seen people blossom there and formed some solid and interesting friendships. Online and offline, the more support the better, IMO.