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If we could design it ourselves, what would AS services look like?

Deleted user
over 4 years ago

I got a formal diagnosis this year - 25 years after taking the AQ test (39) and nearly 60 years after I was first referred for assessment as a child - it's been a bumpy ride! I've had some amazing help from my local authority AS services around employment but I've been a bit surprised at how little AS people are actually involved in the service and it also seems that there's very little ongoing support for AS adults. It also seems a bit of a lottery regionally.

Meanwhile, we have researchers cruising the forums looking for input on the latest app or conference. Again, none of them seem particularly keen to do more than get input on their own ideas - we don't get 'invited to the table'. All the apps I've seen look as though they're for children. The diagnostic process is designed for children. Services seem to be very vague on high-functioning adults?

This NAS forum has been a life-saver in floundering around post-diagnosis and it feels ungrateful to moan - but it's very far from perfect for HF AS adults and, again, there seems to be very little involvement on the part of AS people in defining the service.This might be partly as it started off as a service orientated around parents - it gives the impression of being very much by-and-for people *around* AS people rather than AS people themselves.

So maybe we need to be a bit proactive?

What sort of resource, spaces, support would you have liked (or would like now) that you haven't been offered?

Parents
  • over 4 years ago

    OMG wow, this is amazing - for me I'm thinking the idea of forming an advocacy network is the most 'do-able' bite-sized action we could collectively take to start with? I've run this kind of advocacy organisation before but I don't know half as much about the infrastructure around autism as other people do. What's the best way for a group of auties to organise and pool skills? I think we absolutely have the expertise here to form an organisation and even apply for funding but we'd need to form as a collectivity of some kind and that's going to be a new challenge? We need something like a 'steering group' to bring it together. If we could get a basic structure in place, we could then form sub-groups to take forward specific areas coming up in the discussion - all of which need addressing! Ideas about how we might organise? Are there ways of working in a group specific to AS peeps? Do we need to invent them? Could we use these forum boards or would it be easier to use an online 'workspace' designed for getting stuff done (I can set stuff up if needed)?

  • over 4 years ago in reply to Deleted user

    Fantastic, we could sort of start with us as an informal  steering group and review/formalise later as more people join.

    For example we need:

    1. A steering group to set up the self advocacy network - just a space to keep talking and getting things done

    2. A group to set up something about the forum - like developing a list of technical functions, checking what could be done/how to do it, there was someone who wanted to try ?

    3. The content and resources- we could start some key resource themes as new threads and that could attract people with expertise and desire to contribute
      for example a thread on sumptoms management etc
    4. We could use new threads to get started the discussion on some of the numbered ideas, like mentoring/coaching in employment, an the communication/relationship support, to see who wants to get involved and contribute? 

    5. The forum is good to communicate openly, but it is not really good for editing documents...So if you could set up a workspace.that would be good.
  • over 4 years ago in reply to Tinyexplorer

    OK will set up a workspace tomorrow and post details here :)

  • over 4 years ago in reply to Deleted user

    Hope you had a good weekend?

  • over 4 years ago in reply to Deleted user

    Ooops, got sidetracked! Away weekend but will do it shortly . . .

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