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dmaher
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18 May 2012, 5:16 am

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?

D Maher



questor
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18 May 2012, 7:51 am

Have you considered starting your own local adult group? First find some place local where you can hold meetings. It should be cheap or free, have windows, and either no fluorescent lights or a mix of lighting types, so that the fluorescent ones can be left turned off. It should also have easy access to the outside. Perhaps it could be at someone's home. At your first meeting you could have paper and pens at every person's seat and have them write down what they would like meetings to do for them. Then, at future meetings these things can be done.

I am fortunate in usually not being bothered by fluorescent lights. This problem affects some NTs also. Occasionally, if a bulb is going bad and flickering, it will bother me. I also occasionally have problems with monitors, and will fiddle with one that's bothering me until I can reduce the screen flicker effect. With compact fluorescent bulbs, the regular colored ones bother me because the color they shed is not good for my eyes. However, I do like the "daylight" colored ones. Although it is not really daylight colored, it does come somewhat close to it, and this color is brighter than the equivalent powered regular colored ones.

I do think that you should look into forming your own local group. Good luck with this! :D


_________________
If a man does not keep pace with his companions, perhaps it is because he hears a different drummer.
Let him step to the music which he hears, however measured, or far away.--Henry David Thoreau


dmaher
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Joined: 13 Dec 2009
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25 May 2012, 3:58 am

Dear Questor,

The trouble with starting my own adult group is that I have never managed to get a contact for talking to other aspergers in the local newsletter and I am also not allowed to use the website to post things like that. I also seem to get a lift to the meetings every 10 years or so and I am not really confident enough to introduce myself to every total stranger there and ask them if they want to have a different group especially when it is being supervised by the official local Asperger group, people who don't like competition.

What I might do is post this question here and various other forums:

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

D Maher