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What would you have liked from a post-diagnosis peer support group?

MoMoSmurph

Hi

I'm seeking opinions on what you would have liked to be included in a short-term post-diagnosis peer support group (if you'd had the chance to attend one). I'm an autistic researcher setting up a project to co-create the content of the group sessions with the autistic adults who are participating and while the project is going through the ethics approval process, I'd like to gather some opinions. What kind of things would you have found useful? Examples are time to have some free-flow chat, learning more about autism, learning some coping skills...? etc..

I'd be really grateful for your opinions! Slight smile

  • in reply to Jenny Butterfly

    It's a hard slog to get to diagnosis let alone have something afterwards.  All mental health services are starved of resources especially when the rest of the NHS is under such pressure.  As always, mental health is bottom of the pile.

  • Biscuits, yes.  But also detailed, robust advice on how to assist with:

    - chronic burnout in an family member

    - how to improve family dynamics (again in a household where ALL members are adults)

    - therapy for trauma, including intergenerational trauma as a result of lack of identification and support

    And generally more on family support.  I'm finding that most services either support individuals or parents of children.  Hardly anything for families where the youngest age of diagnosis is already in adulthood and family members wont' necessarily engage with services themselves. 

  • Any support would be better than what most adult-diagnosed autistics get, which is nothing at all. 

    Just the ability to meet others in the same position would be beneficial.

    Information is quite freely available over the internet, but sharing the life experiences of other autistics would be a very good thing.

    I don't think free-flow chat is particularly suitable for autistics, as it is the sort of thing we have difficulty with. Something with more structure would work better, and a plan of activities being available beforehand would also help. Autistics like structure and predictability.