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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

    This is a joke.

    all welcome to help... Only if you male.

    only if you don't mind being dictated to by the self appointed chair.

    only if you don't disagree with the self appointed chair.

    The self appointed chair will message you all hours of the day or night.

    The self appointed chair will do her best to exclude people, espescially if female!

    How many people are left on Slack?

    Not many it looks like the self appointed chair has got her way!

    Good luck with your exclusive boys club, there is one female but she also is apparently ignored I wonder why?

    Congratulations!

  • over 4 years ago in reply to Bookworm

    Bookworm, you raise some very important points, but it is really difficult to understand.

    Why would you not write directly to the people concerned?

    It sounds as if you are getting Chinese whispers. 
    The male thing must be coming from the males and some may have problems.
    This is something to discuss openly in the right forum. Not bullying and gossiping.

    Facts are:

    We formed a formal charity, an unincorporated Association, there is a constitution and minutes of trustees meetings.
    we are all liable, depending on each-other.
    There were initially 4 members: 2 males, 2 females.
    The chair was elected as all other officers, but the members who signed the constitution and accepted the responsibility.
    It has 6 members now, and all members share financial liability at this early stage.

    You are not a member.

    You were invited to join in June and it was your decision not to because you were too preoccupied with personal stuff. This is totally understandable.

    The membership is open to ND people, you should join us formally and have this discussed appropriately in the meetings of the charity.

    Being a member would also involve doing some work...

    We welcome all with open arms Hugging

Reply
  • over 4 years ago in reply to Bookworm

    Bookworm, you raise some very important points, but it is really difficult to understand.

    Why would you not write directly to the people concerned?

    It sounds as if you are getting Chinese whispers. 
    The male thing must be coming from the males and some may have problems.
    This is something to discuss openly in the right forum. Not bullying and gossiping.

    Facts are:

    We formed a formal charity, an unincorporated Association, there is a constitution and minutes of trustees meetings.
    we are all liable, depending on each-other.
    There were initially 4 members: 2 males, 2 females.
    The chair was elected as all other officers, but the members who signed the constitution and accepted the responsibility.
    It has 6 members now, and all members share financial liability at this early stage.

    You are not a member.

    You were invited to join in June and it was your decision not to because you were too preoccupied with personal stuff. This is totally understandable.

    The membership is open to ND people, you should join us formally and have this discussed appropriately in the meetings of the charity.

    Being a member would also involve doing some work...

    We welcome all with open arms Hugging

Children