Where do you find your community?

Hello. I got diagnosed with ASD about 2 months ago. Immediately I felt relief - like things made sense, I had some additional information about me which I could use to try and be a bit kinder to myself. I plunged into reading everything I could but got a bit overwhelmed and now just feel totally lost. I need to work things out, work out who I actually am after 40+ years of knowing I was different but not understanding why - and I need some help to do that I think from people whose brains work like mine or who have been through this. I keep reading that I am now part of an autism community but I don't know what that means. I don't know anyone else in real life who is autistic and I'm not great with people anyway so would rather some internet based thing. There seems to be loads of website and forums but I don't know where to start. Does anyone have any recommendations of friendly online places? I've had good advice on here as I was waiting for the assessment so thank you for that.  

  • I don't deny that, but I disagree with the modern use of community. It isn't a community, it is a group of people with certain characteristics in common. A community is the village/town/suburb/street you live in, and consists of people of a number of different characteristics. (Gays have the same issue. I have gay friends who don't relate to a lot of the supposed gay culture out there.)

    My problem isn't with other autistic people, it's dealing with the non-ASD (I don't use "neurotypical" here as many have bipolar and a dozen other things). When you live in a community, you've got to deal with all kinds of people, not just the ones you like. I'm finding that people on the spectrum as varied as those outside it. I'm rubbish at mathematics, and not interested in trains or Dungeons & Dragons, and despite those being stereotypes, I know such people exist, because I've met them. I have little in common with those folk. I do have friends who are autistic (one of whom is blatantly so, and undiagnosed - he refuses to acknowledge it), but I don't specifically seek them out.

    What I'm after just now is living strategies. That's far more useful to me, and to the other people in my view. I don't mind the advice, and I'm happy to meet some other people with this, but it's not my whole world.

  • There is growing body of research demonstrating that autistic people are better at interacting, i.e, understanding and communicating  with each-other than in a mix with neurotypicals due to a shared autistic experience and communication style. Basically autistic people are more 'compatible' with each-other. There was research to show that autistic people exchange and communicate more information in autistic pairs. A recently published study also shows autistic people develop better and deeper connection with other autistic.

    So in this sense autistic lead spaces are valid autistic communities, even if they are not in immediate neighborhood.

    Being a minority of 1% it is difficult to find a genuine community of interest locally. Sitting in a local autism group amongst people who don't share anything except the diagnosis can be awkward. Online groups, like this forum and some others might be a genuinely meaningful community for autistic people.

    It is also about the channels that work for you. Some are at their best at interacting in person, others prefer a written medium, others exchange pictures. It is individually driven.

  • I am in contact with other people on the spectrum, but I don't really consider it a community. I know it is fashionable to conflate community with a common interest group, but that is not the same. To me a community consists of the people you live among. 

    However, that said, this is all hair splitting. If you have a One Stop Shop near you, I recommend getting in touch with them. Some of these are really good. There are also some autistic organisations which are not so good, and I'm just finding out about them. Most of them are about organising autistic pride festivals etc instead of providing practical help to those with this condition.

  • What are Facegroups like?
    The media forces certain type of posts. It it a good place to explore in depth sensitive issue that  linger?
    A forum with the cover of aninimity enables to open up and discuss the deep sited issues.

  • thank you. I will have a look at those. 

  • If you're on Facebook, try Autism Inclusivity and The Autistic Cooperative as a good starting point... and Neurodiversity Allies..

    I was diagnosed back in 1987... welcome...

  • When my physical health has improved i will meet up with other local autistic's.

  • That's fair enough - it's not for everyone. Thanks for letting me know re. wait times - I might try contacting them again soon.

  • Thanks - I don't want to attend an in person group though. I waited between 6 to 9 months I can't remember exactly. I said I was available for short notice and cancellation appointments though so I don't know if that speeded things up

  • Hi, Murmu - welcome to the group. How long did you have to wait for your autism assessment? I've been on the waiting list for over a year now, so I'm really hoping I don't have to wait too much longer. I'm mostly managing to put it out of my mind, but it's tough sometimes.

    I've never tried them myself, but it might be worth looking at the National Autistic Society's local groups. I know they're not internet-based, but I'd imagine you wouldn't be the only one who feels a bit uncomfortable around people: https://www.autism.org.uk/services/community/group.aspx

    Hope you get some good suggestions and find a community that works for you :)