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

Yea I've seen it thanks point 3 under the heading support. I think the up aboves in the NHS are starting to realise that any change definately needs to be bottom up, by using feedback from the likes of us as people with an ASC and staff at grass roots level.

Good job, you certainly seem to know what you are doing.

I think it's fantastic how everyone posting on this thread had posted so many brilliant ideas! Really good idea for a thread topic Former Member :-)

Yep! your thread has 'gone viral' :-)

I'll admit I am very torn as to whether or not I can commit time to this as I am a very busy bee and only just about managing to maintain a balance as it is, if I take on more it could tip the balance. However, I don't want to with hold vital skills that could be useful for the development of the group. Could I be part of the group but sort of hover around in the background and if you want advice on something which you feel I may have knowledge in then ask me? 

Can I also add that I think that a massive deficit which I certainly found post-diagnosis is SIGN POSTING. I got a diagnosis and went online, did a google search of services for adults with Aspergers in my local area and pretty much the only thing I found was a social group that runs once a month (I've ranted on here about that before so I won't bore you all again!). One thing that I am utilising the page of my own group for is sign-posting to other relevant groups, i.e social groups that I have attended myself in nearby towns that are good; services that could be of use to group members such as local SEN services for children (because adults with autism tend to have children with autism and not all groups for children are easy to find online); mindfulness and meditation, etc. Actually I need to do A LOT of admin on my group page today. That and do half a ton of Beaver Scout admin!!! That brings me to my second point that I wanted to make. I really believe that to have an arena, even an online arena where autistic adults can have honest discussions about symptoms that may be troubling them and swap ideas with other autistic adults is essential. This forum goes somewhere towards that but it is limited due to being an extremely public arena and open to viewing by anyone on the world wide web. There are certainly symptoms that bother me that I would not discuss on here because they are too personal to have out in the open for all to see. However, having a closed group with a 'what is said in the group stays in the group' policy, would I feel be beneficial to a lot of people. Given that many people with an Autism Spectrum diagnosis may struggle to articulate themselves fully and accurately in a face-to-face setting then an online platform for this could be the best option, although I'm not ruling face-to-face groups out, I'm just being realistic about what is easier to achieve first leaving out the complications of venues; funding; staffing; etc.

Just a couple of ideas from myself. Let me know what you think.

Morning Tinyexplorer, yes, looking good.  

So efficient!!! It sounds amazing

I like your ideas. I particularly think #3 would be very nice if we can implement it! If we can attract people with expertise, or people who can make a difference, to look at the problems we raised with the current system and our ideas of how to improve it, it might help pave way for a brighter future. 

I love your summary! I was additionally thinking it would be great if there's some way of routinely screening people for it. I think I heard somewhere that in some places in the US, they start screening children for ASD during routine health checkups. If it could be done in the UK and for adults as well, like if ones goes for health checkups, or perhaps have companies send an email about ASD screening once a year, it will increase awareness, and there will be fewer people being overlooked. 

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

Wow, this is amazing! I love how many great ideas people have provided. This is a wonderful summary, Tinyexplorer. Wouldn't it be great if some policy makers (good ones) came and looked at the forum. 

I have reasonable experience in corporates to organise and work in groups, manage projects. I am not bad at researching.

I have time and can 'commit'

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.

Looking good, and you mentioned the National service framework because although this exists for children it doesn't for adults, also I think as somebody mentioned earlier, NICE guidelines are a bit clunky and are not that easy to follow.

I also think every large employer, well every large employer anyway, should have a link person who is an advocsre for autistic adultscwho could also mayve cascade train their teams where needed, much as in nursing we have link nueses who spescialise in say, diabetes or palliative care and cascade any new info to the rest of the team.

Yeah me too per se - should we just go the 'per se' route and assume it's the same as organising any other group - or do we need to be aware of issues some of us (including me) have in working in groups? Or is it just working in NT groups that we struggle with? I'm not sure I can definitely answer this question on my own behalf? Or should we just jump in and sort it out as we go?

Could we maybe make a definite list of who wants to commit to taking something forward in a concrete way? I obvs can see and have already talked to some people but don't want to assume too much?

I think e can learn a lot from LGBT, they normalised it by making it cool, making successful people coming out.

In autism, the fear and stigma is still high, so we need to work on normalising it, there was that idea of 56 black men. NAS did.t respond to it, but maybe we should try to take it further. Maybe without showing faces. To make the point that there are autistic people being successful everyhere, but they are not confident coming out, that e need to stop discrimination and start acceptance

@Trainspoter

Yes. See below 

You covered my ideas too. Thank you  

I edited point 4, does it incorporate what you meant?

I have reasonable knowledge of how to structure ‘groups to organise things’ per se, if that’s any help? As well as sub groups etc

Former Member, Former Member, Jenny Butterfly, qwerty

Any comments?

I incorporated your points I hope