Starting and leading autistic peer support & social groups

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Mona Pereth
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20 Feb 2020, 6:11 pm

If you are building an autistic peer-led support or social group, or if you are considering so doing, feel free to brainstorm here in this thread.

Others, who have attended such groups but have no interest in starting or leading them, feel free to share your thoughts about your experiences in the groups you've attended, including things that went wrong for you. This will hopefully give us would-be leaders some insights into what NOT to do.

Here, in the separate thread Loneliness and ASD:

B19 wrote:
I think this is a huge problem for older and/or widowed/single etc AS women. We need to form somehow our own Autistic Women's Associations. No-one else will do this for us. But I know that takes a lot of energy. I am trying to establish a pilot group here in my city at the moment and meeting someone next week to discuss possible ways forward and exchange ideas.

In a subsequent post in that same thread:

B19 wrote:
I am focusing on adult women, as there are mixed groups available here (not many). Some older AS women here have already established great blogs and written books about life as an AS women, and I am currently forming links with them to discuss what the specific aims of an AWA as a group might be and how to help it achieve "lift off" and connect with the women out there, and define what its specific ethos and goals might be.

Have you been attending some of the mixed groups and exchanging contact info with some of the women there?

My own group (not a women's group, but a small local mixed group for adults in Queens, in NYC) consists mostly of people I met at larger, more centrally-located groups in Manhattan.

For another aspect of building a group, see also my conversation with Magna here and here in the thread Anyone do Meetup?.


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Jakki
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20 Feb 2020, 9:34 pm

a Sewing bee ./ circle (on the net)....type of thing.....? kinda like here .....(. But in my case that could be tough .)
like minded groups ,ideas , things, in general . as a version of a chat circle . For older Aspie Women


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Mona Pereth
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21 Feb 2020, 3:39 am

A group of people who sew is an excellent idea, especially if at least one of the members can teach other members how to make clothes.

At least some of the members could then make at least a little money making custom sensory-friendly clothes for other autistic people in their local area. Those who become especially good at it could, hopefully, create full-fledged small businesses doing that as well.

On the more general topic of the need for a more organized community, see also my post here in the thread Media/pop culture Autism attitudes vs lived experience.


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SharonB
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22 Feb 2020, 8:47 am

Mona, I admire your action-oriented attitude. I am sad to admit that I am in a bit of a powerless place (in my mind)... I really like the idea of stepping into a more powerful role. At this time my contribution is as a group participant.

Five years ago I was in an NT support group for a medical issue and was formerly kicked out - due to emotional dysregulation exacerbated by a hormonal incident (prior to my awareness of ASD and hypersensitivity).

Now I am part of a free monthly support group offered by a local ASD Association. It's adults only. It's currently run by ASD co-leaders (one is a counsellor), although an NT counsellor is the sponsor. We talk about real stuff, hard stuff many times. It's effective. I have heard that previous groups lead by NT were "bland" and unhelpful. It has social events, although I have not been to one. There is talk of splitting the (now large) group into two groups and/or having a women's group.

I have signed up for a paid weekly group (8 wks) offered by a counselor. It's adults only and for women. I hear it's going to be a small group. I look forward to it.

On behalf of your larger community, thank you for leading a group in your area, and having this conversation here.



Fireblossom
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22 Feb 2020, 9:31 am

I go to a peer support group for autistic people (or well, officially any non-NT group, but most of us are or suspect they are autistic), but I don't feel like it's very supportive. Few people in particular keep trying to force their own views on others, though they might not even notice that. I also think that our group is way too big to have any actual conversations, so I suppose I could give the advice that if someone starts a support group, don't let it get too big or if you do, remember to divide it in to small enough groups from time to time so that people actually have the chance to talk with each other.



Mona Pereth
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22 Feb 2020, 8:07 pm

Fireblossom wrote:
I go to a peer support group for autistic people (or well, officially any non-NT group, but most of us are or suspect they are autistic), but I don't feel like it's very supportive. Few people in particular keep trying to force their own views on others, though they might not even notice that.

That is indeed a significant pitfall that can be hard to avoid.

Fireblossom wrote:
I also think that our group is way too big to have any actual conversations, so I suppose I could give the advice that if someone starts a support group, don't let it get too big or if you do, remember to divide it in to small enough groups from time to time so that people actually have the chance to talk with each other.

Yep.

While a group is still small, I think its leaders should keep an eye out for members who appear to have some leadership potential, and cultivate them as occasional co-leaders. That way the group will be prepared to split when it needs to.

Alas I would guess that most leaders of support groups have never even considered the above. I suspect that most support groups are formed purely as ends in themselves, rather than with a community-growth mindset, and hence don't plan for growth and splitting.


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Magna
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22 Feb 2020, 8:21 pm

I just had my very first adult autistic group last night of which I was the organizer and acted as the facilitator. There were four other people that came to the group. It was nice that it was small because we were all able to converse with each other. I've had many years of experience through my employment of being a part of meetings and also management training and that came in handy; I made a point when there was a break in conversation to ask an interesting question to different people to keep them engaged, give each person a chance to speak and to help the process of getting to know each other along.

Everyone said they enjoyed the group very much and asked when the next meeting will be because all of them who stayed wanted to continue on. Only one person left early and that was a teenager who came with his dad. For some reason they thought it was going to be a group for teenage autistics. We welcomed him but he was hoping there would be people his own age there and since there weren't, he decided to leave.

There was also another person that messaged me on meetup after the fact and said she got the date mixed up but she's eager to come to the next meeting.


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IsabellaLinton
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22 Feb 2020, 8:34 pm

I'm really impressed that your group was so successful, Magna. Congrats and best wishes for more success with this venture as it continues. Is it weekly? Monthly? Do you have a plan?



Mona Pereth
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22 Feb 2020, 8:44 pm

SharonB wrote:
Mona, I admire your action-oriented attitude. I am sad to admit that I am in a bit of a powerless place (in my mind)... I really like the idea of stepping into a more powerful role. At this time my contribution is as a group participant.

Since you "really like the idea of stepping into a more powerful role," do you think at some point you may be able to do that, though not now?

SharonB wrote:
Five years ago I was in an NT support group for a medical issue and was formerly kicked out - due to emotional dysregulation exacerbated by a hormonal incident (prior to my awareness of ASD and hypersensitivity).

I'm very sorry to hear that.

SharonB wrote:
Now I am part of a free monthly support group offered by a local ASD Association. It's adults only. It's currently run by ASD co-leaders (one is a counsellor), although an NT counsellor is the sponsor. We talk about real stuff, hard stuff many times. It's effective. I have heard that previous groups lead by NT were "bland" and unhelpful. It has social events, although I have not been to one. There is talk of splitting the (now large) group into two groups and/or having a women's group.

Another possibility you might suggest to the leaders: Create specialized subgroups, perhaps based on co-occurring conditions. Examples: If a large number of members have co-occurring ADHD, create a subgroup for autistic people with co-occurring ADHD. If a large number of members have had problems with substance abuse, create an addiction recovery group.

Also, perhaps they might consider spawning a bunch of specialized social groups? Personally I'm not a believer in general social groups/events for autistic people who may have nothing in common other than autism. Because many of us (including myself) have trouble with unfocused group chit chat, I think it's better to have social groups devoted to particular categories of interests/hobbies (e.g. a group that plays board games) or something else the members have in common, such as a particular common lifestyle choice (e.g. a group of vegans that meets at vegan restaurants). So I would suggest taking a survey of members to see what kinds of social activities they would be interested in, and then form groups devoted to the most popular kinds of activities, whatever they might turn out to be.

SharonB wrote:
I have signed up for a paid weekly group (8 wks) offered by a counselor. It's adults only and for women. I hear it's going to be a small group. I look forward to it.

Hopefully you'll make some friends there.

And, if you ever decide to "step into a more powerful role," perhaps some of these women can eventually become the nucleus of your eventual new group?


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- Queens discussion group on Meetup.com.


Last edited by Mona Pereth on 22 Feb 2020, 9:34 pm, edited 1 time in total.

Mona Pereth
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22 Feb 2020, 9:00 pm

Magna wrote:
I just had my very first adult autistic group last night of which I was the organizer and acted as the facilitator. There were four other people that came to the group. It was nice that it was small because we were all able to converse with each other. I've had many years of experience through my employment of being a part of meetings and also management training and that came in handy; I made a point when there was a break in conversation to ask an interesting question to different people to keep them engaged, give each person a chance to speak and to help the process of getting to know each other along.

That's great! Sounds like you're off to a very good start.

Hopefully, before they left, you got contact information from all of them and/or had them all sign up on Meetup.com in your presence? Sending people reminders (either directly or via Meetup.com) is an essential part of building a new group -- especially with people who have trouble keeping track of their schedules, as a lot of autistic people do.

Every group has turnover. No matter how enthusiastic they all were, chances are that only maybe two out of the original four will show up at the next meeting. So you'll need to keep publicizing your group by means other than just Meetup.com.


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Magna
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22 Feb 2020, 9:29 pm

^^^ Thanks, Isabella. I'm hoping to have a monthly group. I belonged to a non-autistic monthly group in that past and that was nice because it gave people enough time to usually have good info to share about what transpired in their lives since the last meeting.

^ Thanks, Mona. Yes, we all did exchange email addresses and I emailed the group today to thank them for attending and to tell them and I will keep them posted on a date and time for the next meeting.


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AQ-43 (32-50 indicates a strong likelihood of Asperger syndrome or autism).
EQ-14 out of 80
Rdos: Your neurodiverse (Aspie) score: 173 of 200
Your neurotypical (non-autistic) score: 39 of 200
You are very likely neurodiverse (Aspie)


Mona Pereth
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27 Feb 2020, 11:19 am

In my opinion, those of us who lead, or want to lead, groups of autistic people need to keep in mind the things that make social interaction tiring for many of us and find ways to structure meetings so as to avoid or minimize as many of those things as possible.

See the thread What aspects of social interaction are especially tiring?

EDIT: I agree with Magna that a monthly group is a good idea. My little group in Queens meets monthly, and all the larger groups I attend in Manhattan meet monthly too.


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Jakki
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28 Feb 2020, 5:40 am

Jakki wrote:
a Sewing bee ./ circle (on the net)....type of thing.....? kinda like here .....(. But in my case that could be tough .)
like minded groups ,ideas , things, in general . as a version of a chat circle . For older Aspie Women

yup ....... seen people , whom have attempted this ... found , health issues for myself can be daunting (hard) to deal with at times . And that goes over into
even my reactions here , but when someone tells me to look for a pm and that doesn't appear . It becomes hard not to , see that in a manner that does not reflect on my overall communications with that { person } in general .
( hard not to take that personally) . Especially if am already operating at high level of stress .Just to type one handed , be somewhat physically disabled .
In addition to Autism .


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Mona Pereth
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28 Feb 2020, 1:58 pm

Jakki wrote:
but when someone tells me to look for a pm and that doesn't appear .

Are you referring to the PM that I mentioned here, in a post (dated November 7) to which you eventually replied here, to which I replied here?


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Jakki
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28 Feb 2020, 8:57 pm

Mona Pereth wrote:
Jakki wrote:
but when someone tells me to look for a pm and that doesn't appear .

Are you referring to the PM that I mentioned here, in a post (dated November 7) to which you eventually replied here, to which I replied here?

okay apologies have just detected 2 private messages from you mona,
off to go read them , ...................?


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