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

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
  • 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!

  • Of course, you could join us. You chose not to at the time but did not want to which is fair enough (would have made it one female more....). You just happen to be able to see the communications despite not wanting to take part so really I don't know what this is all about.

  • It was not that I did not want to I have commitments as you well know! I saw the message TE did not want myself and another member, I also had it from a member.

    I wouldn't join if it was the last forum on earth.

    Do I want to be getting my phone pinging all hours of the day and night no thankyou, do I want to be bossed about by the chair, no thank you...

  • you don't need notifications because you are on that site 24/7!

    You have caused untold damage and still all you can do is defend you self!

    Did you not read my previous post I am struggling and going through hell all you can do is defend yourself.

    There is no way you should be an advocate you can't even show somebody who's bottom has fallen out of their world compassion. You should be ashamed of yourself.

    BTW one of you slack members has indicated he is struggling on another thread, he has me worried and he broke my heart but have you commented? No That's sad you can't even look  after your own members, how can you ever be considered fit to support anybody else.

    Get a life, but make sure its not the caring profession. This is my last response unless you want me to keep bumping this up I suggest you don't comment either...

Reply
  • you don't need notifications because you are on that site 24/7!

    You have caused untold damage and still all you can do is defend you self!

    Did you not read my previous post I am struggling and going through hell all you can do is defend yourself.

    There is no way you should be an advocate you can't even show somebody who's bottom has fallen out of their world compassion. You should be ashamed of yourself.

    BTW one of you slack members has indicated he is struggling on another thread, he has me worried and he broke my heart but have you commented? No That's sad you can't even look  after your own members, how can you ever be considered fit to support anybody else.

    Get a life, but make sure its not the caring profession. This is my last response unless you want me to keep bumping this up I suggest you don't comment either...

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