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?

  • 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.

  • 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...

  • Oh BTW I did try to contact you but when I put your name in the search, there was nothing, so I contacted Nope, so don't say I am using this to make a show of you because I am not. Good Luck!

    Also why do you keep pestering a member that has clearly told you they are doing as much as they can and yet you put more demands on them?

  • Crack on!! I didn't want to come Sunday anyway, I would have been coming to support somebody else but that wasn't wanted. 

    You kep your little elite club and I feel sorry for the last other female standin.

    Exclusion is a form of bullying, did you know that???

  • 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...

  • 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.

  • All autistic and ND and NA (lol) people who want to join please follow the link, engage in conversation 

    https://join.slack.com/t/neurodiverses-2sm4183/shared_invite/enQtNzQ2MjYzOTgxMjAxLWNlMTRiNmVjMTE5YWM0ZTE2ZDkzMGVmYmY5ZmRmY2M5YjFiM2QwODk5MDQxOWU2NzZmNDU0ODhjZDRjNmRmMDU

    We are Neurodiverse Self Advocacy !

  • Bookworm, you raise some very important points, but it is really difficult to understand.

    Why would you not write directly to the people concerned?

    It sounds as if you are getting Chinese whispers. 
    The male thing must be coming from the males and some may have problems.
    This is something to discuss openly in the right forum. Not bullying and gossiping.

    Facts are:

    We formed a formal charity, an unincorporated Association, there is a constitution and minutes of trustees meetings.
    we are all liable, depending on each-other.
    There were initially 4 members: 2 males, 2 females.
    The chair was elected as all other officers, but the members who signed the constitution and accepted the responsibility.
    It has 6 members now, and all members share financial liability at this early stage.

    You are not a member.

    You were invited to join in June and it was your decision not to because you were too preoccupied with personal stuff. This is totally understandable.

    The membership is open to ND people, you should join us formally and have this discussed appropriately in the meetings of the charity.

    Being a member would also involve doing some work...

    We welcome all with open arms Hugging

  • I'm not sure where you get the all male thing from. We are trying to get as many people on board as possible. We all agreed who would be chair at our first meeting. It was a consensus. I certainly don't want to be it, do you? We have had people show interest and join us on slack but then not show up much (one last time we had him on said he wanted to leave due to personal stuff).

    The one female you claim is ignored is certainly not. And was driving things when necessary.

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

    Slack like this forum is something you can put messages on at any time. It's not a phone line that rings ever time someone puts a message on. We can use it simultaneously to have a meeting or post one off messages that others will see when they log on.

  • 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!

  • Any thoughts on this

    Please give an example of where you think progress has been made in your local area to improve the lives of autistic people and of their families and carers?

  • I for one dont think the 'budget' for Autism services is properly thought out.

    We do have to live in the real world, I know that.  But I don't know how much autism services actually cost.  I have my suspicions that considering the numbers involved, the actual budget to provide a proper service would be quite low.

    We have to wait ages for an assessment and diagnosis.  Yes, these services are quite expensive, but the cost of a diagnosis privately in the upper range is somewhere around fifteen hundred pounds.  Assuming the oft-quoted figure of 350,000 people undiagnosed this would mean somewhere around five hundred million pounds to diagnose everyone.  A lot of money, but in the scheme of things not that great for the problems it would solve for those affected.  And that would be a one off cost, once everyone was diagnosed who needed to be the cost would be very low considering only just over one per cent are affected.  There would be very low waiting list, perhaps three months.  This would impact by ensuring that the problems of an autistic person are understood by government agencies rather than being thought of as 'awkward' especially those who suffer because of their lack of diagnosis.

    And with diagnosis should come help.  Access to support, both at work and not.  Everyone who needs some support should be able to get it.  Support should be tailored, and after an initial consultation with support services a 'support plan' should be put in place, including employment services, housing, mental health, etc.  Support would be according to needs, but in meaningful consutation.  In the minimum it might be a 'named' person who was able to give advice and information, and be able to be seen by appointment (with a short wait) but would also be available by email/letter/telephone.  Further up the line, the support might be sessions of an hour every so often, perhaps every three months or six months.  And then there could be regular support for those that needed it.

    There are already charities in place, so these could be expanded.  They suffer from being underfunded.  Once again, we are not talking a huge amount considering the benefit to the person involved.   And we mustn't forget by no means everyone would feel they need to access the service, but it should be available for all who do think they need such services.  And I am well aware of the problems that are faced by those with any disability.  However we have to fight our own corner regarding autism and let those with their own problems regarding other disabilities fight theirs, and not fight amongst ourselves.

    Combined with this should be a compulsion for all employment services, government services, and employers to undergo diversity training to include a large slice of autism understanding and acceptance training.  Because until there is more understanding and less brushing under the carpet of problems autistic people face, nothing will change.

  • Hope you had a good weekend?

  • I'm catching up on the paperwork as and when I can, in between lots of other paperwork!

  • OK first task for the fledgling collectivity - we're going to see if we can pull together a collective response to the Review of the Autism Strategy in the next 4 days (deadline is 16 May). There's a summary of the questions here: https://docs.google.com/document/d/1BE28q9Cwm18diFXXUTzuYrrpbrJ0505aQnqsJ8_p8Sw/edit?usp=sharing - if you want to get involved and haven't already joined the slack workspace, shout and we'll paste a link.

  • Of course , the basics remain the same, just the tool/software behind it. I can remember Wordstar on a monochrome orange monitor/TV as a basic document writing tool.  it was not What You See Is What You Get (WYSIWIG) which made for interesting results if not careful to structure it correctly.

    As the power/processing/Speed/Storage of computers and internet network have increased then more user friendly (once you know they exist and how to use them) functionality becomes available.