Local Autism Groups - Printable Version
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Local Autism Groups - Ephemerol9 - 05-25-2012 11:53 AM
Posted: Fri May 18, 2012 9:16 pm Post subject: Local Autism Groups
Briefly, 11 years ago, I was just finding out about autism/aspergers and was awaiting diagnosis. (I am now 50+). Myself and partner were living in Norwich, we still live in Norfolk. We found the local Asperger Norfolk group, it seems still to be run by and for those living in Norwich, unless you have your own transport as there is still no help to get there and back for activities which still all seem to be run in the evenings. We went a few times to the evening meetings when we were still in Norwich.
The staff running it seemed friendly but there was no practical help with anything such as social skills and there was once a sort of “workshop” involving an actor who did some sort of role-play which I didn’t understand about interaction or something. I’d prefer a structured exercise with written info as well as examples. I have no idea if anybody else found it helpful, either then or now, 11 years later, because:
• Your social skills and confidence have to be very good to start with, because you’re briefly introduced to everyone in the room (who seems to know each other) and then left to get on with it. It also seemed to be for people who lived in or around Norwich only so when we left Norwich that was it.
• I also have tremendous problems with fluorescent lights and they had loads of them in that room which were absolutely huge and hung down quite low over head. I kept blinking and having to keep my eyes shut which basically took out any form of eye contact which is meant to be a form of / part of socialising. There are no windows in the room and it was quite airless.
• The only possibility of talking to the other people was after the group ended and a bunch of them go to the pub. I can’t cope with pubs either so that was out of the question as well.
Long story, we had to move out of Norwich quite soon after and couldn’t attend any groups or activities because they all seemed to be held in the evening when buses don’t go there. Also, their newsletter was unreliable and unpredictable, so you were expected to keep up with activities and the frequent changes of dates / events via a computer which we couldn’t afford then or now.
There was no help with using a computer at the library and there still isn’t now. The only reason I can contact other aspergers via forums is because a local woman who has nothing to do with the asperger or autism service answered an ad which I put up about 3 years ago.
I tried many times to put a contact ad in their local newsletter, but had no success or nobody replied. So far as I know, none of the ads actually went in for various reasons. I was also told that I could not put a request for contact on their website or anywhere on their premises and there are no local groups / forums apart from these ones as far as I can find, certainly no asperger / autistic run ones.
The only reason I was able to go to any meetings were because the autism service, who are much more helpful, the woman actually drove us to and from meetings, but the autism service is basically run by and for autistic children and their parents and relatives, so not relevant to my age group. She also drove us to a meeting last year of the “Asperger Adult Service” which apparently has been set up recently. It had a lot of the people which I remembered from the Asperger Service 10 years before.
It was held in the same airless cramped room with the fluorescents overhead. You got introduced to everybody by a bloke who has aspergers but that’s the only change and you still have to get on with it and the only other change is that my light sensitivity seems to be worse and I had to wear my wrap-around sunglasses and a hat with a brim for the whole time in that room which eliminated any possible eye contact and I ended up constructing these shapes out of magnetic toys in the room just to stop myself getting agitated. There’s a social skills workshop held this May 26th but it is in that same room again, at least it is during daylight hours so I can run out and breathe if I choose to go.
Are there any other people around who have experienced any of these similar problems with their local groups? How do you make contact with other aspergers locally, apart from obviously using Asperger United contacts page? Maybe nobody else in Norwich is light-sensitive or minds cramped airless rooms and perhaps they have all got great social skills, or at least got their own transport, but supposing somebody else came along who had at least some of my issues and was over children’s age, or at least somebody who doesn’t have access and / or considerable help with the computer.
Any ideas from anybody?
Does anyone apart from me in Norfolk / East Anglia in Britain want an alternative local group / website / newsletter by and for autistic / asperger people. (The local Asperger and autism services who run the current activities - no replies from them please)
Are there any autism / asperger people who would like a different group or meeting place somewhere in Norfolk or East Anglia?
Or at least anyone who wants to set up a local website or printed newsletter or regular meetings anywhere?
Please no replies from autism / disability organisations either local or national in Britain / UK.
I have no transport of my own and answer e-mails sporadically so be patient at first. Thanks
RE: Local Autism Groups - M - 05-27-2012 02:49 PM
Mostly around where I live the help is for people who can pay or have social services pay. Most of the help is for job placement but very limited numbers of people can get it.
There is a place I went for help for job training - although I did not get a job placement from them - they are focused on helping immigrants. I am not an immigrant but because they are funded by government partly, they cannot discriminate. They had no understanding of Asperger's and staff did not really read much of the information I sent them.
Mostly these types of groups are relying on someone getting a government grant for funding or just getting what space is available for meeting at church or community centre.
Are you needing help with computer at the library? Could you contact a local church/mosque/temple and ask for a someone to volunteer to help you for a certain number of hours per week? Be specific in what you need help with and only engage the volunteer for the said number of hours.
right now I am going to a church for a craft group but I never told them I have asperger's. There are some other people there who I suspect have some developmental issues but I never asked. I get on ok with them. But I did get some social skills training earlier in life.
There is some information in this forum on defining social skills and practical exercises.
RE: Local Autism Groups - Ephemerol9 - 06-08-2012 11:20 AM
Where I live, unless you have a very obvious physical disability (and sometimes not even then), you have to pay for any help you can find for yourself. Social services have made it absolutely clear to me that I am not entitled to anything, although for some reason, they say I can have an assessment. I have not idea what the point of this is, because a person would have to be extremely lonely / desperate to have a social worker come around just to talk about nothing basically. Where is this place you went to for help for job training? I didn't even know there were such places, although loads of organisations claim they do this. Did you get any real training that referred to actual jobs? I don't expect any of these people to read any information or understand Aspergers, they never do. Explain what you mean by 'Mostly these types of groups are relying on someone getting a government grant for funding'.
I avoid funded groups / types / organisations as they tend to be useless at best and downright nasty or obstructive / dishonest at worst. Hope ones in your area are better.
Help with computer at library, I ask a librarian but they tend to be really busy. I have no idea if there are mosques or temples around here and without getting too political, it doesn't seem a good idea to be seen going to any kind of non-church type of place at the moment, especially in this area (I am mixed race).
Years ago I did try writing to both the Protestant and Catholic churches / representatives in East Anglia and never got any reply or acknowledgement from either of them, although the local Fakenham church let me put an ad in their newsletter for 3 months for only £12 which was very nice and helpful or them. Absolutely no response though. People who volunteer for things do not have computer skills or anything technical or specialised like that, and I have tried the whole voluntary thing and try to avoid anything which says volunteers. Like most organisations, they don't listen and are run by a few very well paid types.
If you want any thing, it's best to put something in a newsagents or shop window, or advertise on Gumtree, or something for people with real skills.
Churches and church people are nice, but they are clearly not able to help with anything like this. You mention you got some social skills training earlier in life, can you tell me all the details about that and also on any sort of links / details on the social skills information on this forum which you mention?
Thanks a lot