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 Reply
  • I really don't see the boy's club thing though, this started with more females interested than males

    I rest my case, Where are all the females now?

    even the original author of this thread was pushed out, by the chair person along with all the other females who showed interest..

    The male thing must be coming from the males and some may have problems.

    Now she has even started on the boys and wont take responsibility for her exclusion of potential interested members...

    Enough said the evidence speaks for itself!

    How can you ever expect to get members with a chairperson with such an autocratic dominating leadership style,

    I have seen what she has done to one member who is too soft hearted and passive to stand up for himself and the mere mention of her name brings him out in a stress rash, FFS!

    She even gets other members to PM me to apologise for her exclusion of me that is not the behaviour of a good chair person...

Children
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