Starting and leading autistic peer support & social groups

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Jakki
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24 Mar 2021, 4:26 pm

Thank you for reposting this btw


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Velorum
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24 Mar 2021, 4:53 pm

Coincidentally today I had a meeting with the lead for equality and diversity at the NHS trust that I work to confirm that they would like me to set up and coordinate a neurodiverse staff network. They already have BAME, LBGTQ+, Disability etc networks but no ND - something that they would like to address. I agreed something to go on the intranet and to be circulated to teams and am looking forward to coordinating the first meeting next month.

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Mona Pereth
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24 Mar 2021, 5:28 pm

Regarding the following tutorial: Facilitating Support Groups (PDF) on the website of the World Institute on Disability.

This tutorial talks briefly about many issues that need to be considered when launching and facilitating a support group. I'll discuss just a few of these issues below, mainly ones on which I have some minor disagreements with the tutorial.

Quote:
An essential prerequisite for successful support-group leadership is experience as a group member. Leaders need to become familiar and relaxed with the dynamics of group interaction.

I fully agree with the first sentence. But I don't think it's necessary for a would-be facilitator to be "relaxed with the dynamics" of whatever groups they were previously a member of. On the contrary, it seems to me that it should be okay for a would-be facilitator to be uncomfortable with how previous groups were run and aim to do better. Hopefully the would-be facilitator will have enough self-awareness to avoid the same pitfalls -- although doing so may turn out to be more difficult than expected.

But one does need experience as a group member to know what the relevant issues are, regardless of how comfortable one is with the "dynamics" of one's previous groups.

Quote:
Leaders also need to think about topics in advance and plan approaches to the meetings. They can pose topics for discussion, and eventually, group members might even become a good source of inspiration for topics to discuss and share. Group leaders have to allow for time spent in meetings brainstorming topics for future discussion. .. Arriving at meetings without clear ideas about the topic or focus should be avoided. In many groups, "What shall we talk about tonight?" doesn't inspire confidence, and may make participants feel uneasy. It may be effective, however, to change the group-session focus spontaneously, depending on what participants are excited or concerned about.

When my support group (the Queens discussion group for autistic and autistic-like adults) met in person, we always had pre-announced topics, and one of our aims was to have meetings that were a bit more structured than those of some other local support groups. One reason for this, from my own point of view, was to accommodate my own need for structure and focus in in-person group interactions. Also, I wanted to have meetings that focused on what I call autistic-friendly social skills.

When COVID hit and we moved to text-based chat, we became a lot more informal. One reason was simply that, for a while, I became just too frantically busy to devote time to planning meetings.

Then, a few months ago, we decided to have two distinct kinds of meetings: both (1) "general support group" meetings with no pre-announced topic and (2) topic-focused discussions.

However, this month, what was supposed to be a topic-focused meeting on Active listening ended up spontaneously turning into an entirely different kind of meeting, due to the arrival of a newcomer who seemed to be extremely distressed, and who also seemed to have greater difficulty communicating with us than most other members do. (In the past we've always had a policy of giving priority to whatever urgent issues may have arisen in one or more members' lives, but they don't usually take up the whole meeting as they did this time.) I'm not sure how I should handle similar situations in the future. Be that as it may, the discussion on active listening has been postponed to next month.

Quote:
Ground rules are part of the structure of successful meetings. They need to be in place prior to the first meeting. Leaders may open the first meeting by stating the ground rules and making sure that every participant understands and agrees to them. Leaders may even decide to restate the rules at the beginning of every meeting to refresh participants' memories. Restating them is certainly a must if the meetings are open-ended and have an open enrollment.

The Queens discussion group does have a set of Rules & guidelines, but I may need to do more to call people's attention to them.

I'll have more comments later. Gotta run now.


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Mona Pereth
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24 Mar 2021, 6:12 pm

Velorum wrote:
Coincidentally today I had a meeting with the lead for equality and diversity at the NHS trust that I work to confirm that they would like me to set up and coordinate a neurodiverse staff network. They already have BAME, LBGTQ+, Disability etc networks but no ND - something that they would like to address. I agreed something to go on the intranet and to be circulated to teams and am looking forward to coordinating the first meeting next month.

This is great news!

Here in the U.S.A. we don't have anything like the NHS, so the nearest possible equivalent here would be a privately-organized group of autistic and similarly neurodivergent people who work in healthcare-related professions. This is one of the types of career-oriented groups I've long advocated the formation of. (See Autistic Workers Project.) Hopefully it could have a working relationship with relevant labor unions.

Velorum wrote:
Image

Looks very good.

My one quibble is with the way the word "neurodiverse" is used. Please see:

- What Is: Neurodiversity, Neurodivergent, Neurotypical (Disabled World)
- Neurodiversity: Some Basic Terms & Definitions by Nick Walker.

Briefly: An individual person can be neurodivergent but cannot be neurodiverse. Only a group (or couple) can be neurodiverse, meaning that it is made up of people who are neurologically different from each other.


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SharonB
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24 Mar 2021, 7:09 pm

Glad to see that. Here's to advocacy and progress!!

Ironic that in the US healthcare and educational institutions don't support Autistic workers well. I googled "Autistic Teacher" and it's still all about the children. Supporting the children's role models: the teachers and healthcare personnel, would go far in that. Books this way say our population is about 30% neurodiverse and if myself and my friends (and our children by blood or relation) are indicators (mostly undiagnosed), then it's more.