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.

Reply
  • 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.

Children
  • 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...

  • You should disable notifications Slight smileI don't have notifications, nor do I use it on the phone. 

    More to the point, people should talk for themselves. If some people are overwhelmed, they have ample chances and channels to express that appropriately to the right people. You did not receive any communications from us, so I really don't understand.

  • You still are not getting it!

    What part of I do not wish to join Slack do you not understand!!!

    I was coming Sunday not to be with Slack but to be with somebody I cared about because we don't/didn't get much time together

    I was not coming as a member but a partner, I am sick to the back teeth of hearing about Slack but because I loved him I would have come even though it is nearly 3 hours away!

    I get it now though I could only have come if I joined, that isn't at all inclusive that's why you keep banging on about joining.

    Don't worry its not a problem now, I have finished with him, the stress is too much.

    What none of you Slackers seem to realise is that he is under a hell of a lot of pressure at the moment, work problems a new relationship clearing his house, his other hobbies.. which are fine as they help with his anxiety, we could have coped with that but when you lot keep demanding of him something has to give.

    Guess what its me We have finished!

    I will not compete with a fledgling charity which seems to have haemorrhaged more interest than it can keep up with. 

    So I hope you are happy with yourselves, you have him all to yourself because it seems Slack is more important.

    A word to the wise if you have any work or family or quality of life or are in a relationship, stay away from Slack!!

    Also not everybody is as confident as you and TE is pretty pushy so maybe they don't feel they can say no, You need to realise that the voluteers you are using have autism and it affects them in different ways.

    Some people don't have the confidence to say when they are struggling and by all accounts even if they do, which he did will likely not be listened to or heard anyway!

    Well done you have a broken relationship to add to your list of disasters along with less support than either Jeremy Corbyn or Boris Johnson!

  • Well you don't necessarily have to have slack on your phone. I don't, I use it on my PC only but as with all phone apps notifications can be turned off. But when I turn on my computer I see the notifications, if I don't turn it on I am not "bothered" by it.

    I know you have commitments so fair enough. But then why make such a fuss if you don't want to take part anyway. If a member has a problem they can voice it, and we can deal with it. You aren't really being fair coming on here and complaining.

  • 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...