Published on 12, July, 2020
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?
OMG wow, this is amazing - for me I'm thinking the idea of forming an advocacy network is the most 'do-able' bite-sized action we could collectively take to start with? I've run this kind of advocacy organisation before but I don't know half as much about the infrastructure around autism as other people do. What's the best way for a group of auties to organise and pool skills? I think we absolutely have the expertise here to form an organisation and even apply for funding but we'd need to form as a collectivity of some kind and that's going to be a new challenge? We need something like a 'steering group' to bring it together. If we could get a basic structure in place, we could then form sub-groups to take forward specific areas coming up in the discussion - all of which need addressing! Ideas about how we might organise? Are there ways of working in a group specific to AS peeps? Do we need to invent them? Could we use these forum boards or would it be easier to use an online 'workspace' designed for getting stuff done (I can set stuff up if needed)?
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
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'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.
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'