So, after mulling it over for some time I have decided that I am going to go ahead and start up a facebook group for people with Aspergers/ASD in my area :-) Partly because I need this service and partly because I believe that the area that I live in needs this service. I'm starting the planning part of this now so I'm working on that in-between posting on here. Any advice or ideas from you guys is of course most welcome.....
If it’s online, would it not be for all areas? I would like to meet others in London. Online contact is good, so would it matter where we are?
Hi Alice, there are already a number of nationwide facebook groups for people with Aspergers/ASD. Have you tried 'British women with Aspergers UK connect group'? I'm a member and I would recommend it. Or there are some good groups on this website:
I'm starting my own location specific facebook group to try to connect with other people with Aspergers both online and also with a view to meeting up in person for social outings if others were amenable to that idea. For me, online contact is good but I would also like to make friends that I can meet up with etc. My previous posts on this matter, detailed how despite this town having a population of nearly 130,000, the only support for people with Aspergers in one social group that meets once a month on a day that I can't do. There is a facebook group for members of that group but I feel that there must be others like myself that can't make the once per month social group and therefore can't be part of the Aspergers social 'club' in this town. This facebook group is my way of doing something about that. As I am hoping that the group would be able to do social outings together it is necessary that members are close geographically. Have you ever thought about starting up a similar group in London?
Hi Kitsun. Thanks for the link. What you want to start sounds ideal. I find I meet younger women one by one as we recognise common threads. Friends nearer my own age are slightly quirky anyway! And most women my age were never and probably will never be diagnosed!! I think it’s important to support younger people though, diagnosed or not. Struggling is struggling. Isolated is isolated. Marginalised is just that. It’s good to be among people who let you be yourself. A group in your town could be just that. A place where masks are not needed and friends can meet for coffee, something stronger or walking, crafting etc etc .... or just meeting up. I hope you do give it a go.
Thank you for your supportive words Alice. I will give it a go. I'm just busy getting the planning side of it done first as I think it's better to plan first rather than just bounding straight into it having no idea what I'm doing. I was only recently diagnosed myself, 12th December last year, not long before my 38th Birthday so I am feeling, as many people do, a need to connect with others with Aspergers/ASD post-diagnosis. How long ago were you diagnosed?
This last May 2018. I received the report in August. I have been misdiagnosed nearly all my life. I’m nearly a pensioner now! I had to get a diagnosis to access any support available, of which there isn’t much. But now I can help myself better, and find out if I really do need medication or just better self regulation. Less medication would mean better physical health, but I accept any changes have to be monitored and gradual. I would love to meet others who are recently diagnosed. The psychiatrist has been excellent and has got me onto a programme with a psychologist who doesn’t specialise in ASD, but has a very good understanding of my limitations/strengths. I hope others can find the same understanding and support in this day and age.
Hey guys - it’s easy to start a group without FB... If you start a group on FB - it’s not yours ever. It’s owned by FB. And they can and do just move the goalposts and you will be powerless to do anything at all about it. I’ve seen it happen over and over again since the start of FB.
You could use PHB forums or Wordpress instead. 100 times more professional and you’ll have control. Honestly FB is evil and is hijacking our tech in the form of Survielalance Capitolism.
Sorry to hear that you got diagnosed so late and had to go through lots of misdiagnosis first. No, there's barely any support if you get diagnosed in adulthood! Shocking really as we can still benefit from learning how to better manage our condition, for example I've been learning social skills from a book; some people may benefit from learning how to better manage sensory overload; there are so many things we could be taught that would help us but as adults we are just left to sort it out ourselves, I do worry that some people are not able to find and use available resources easily though. If the medication that you are on is for misdiagnosed mental health conditions then it may be worth speaking to your treating doctor about if it is possible for you to titrate your medication down and come off of it, they would be the best person to ask though as most medication requires medical supervision and monitoring to come off of. I'm really glad for you that you've been put into a programme with a psychologist. I don't have any follow up care of any description following my diagnosis but I find it supportive to chat to other people on these forums and on a couple of facebook groups for people with Aspergers
Absolutely agree. I much prefer traditional websites and forums, like phpBB or VBulletin, to FB. The owner has full control of their website whereas with FB they are at the mercy of Mark Zuckerberg and his business interests.
FB is trying to centralise and take over the internet whereas forums are decentralised.
Phew - someone out there agrees! Excuse while I break down in tears of happiness!
Just trying to explain this to my NT friend of 25 years is heart breaking. Had a row today about it without even meaning to.
While a few hours early Mark Zuckerburg allows a massacre to take place allowing live online murder! :(
Internet forums are (perceived as) old school social media. A relic of internet 1.0. Sadly the younger generation by and large does not understand forums, or even know how to use them, and instead lets FB and Instagram run their lives.
Around 2000ish there were concerns that Micro$oft was going to become the gatekeeper for the internet with IE et al, but now it looks like FB will take over the internet.
Internet forums were never covered in the now defunct ICT curriculum in schools.
A rather cynical theory is that forums are dying because intelligent in-depth discussion and debate is also dying. FB doesn't really facilitate intelligent in-depth discussion and debate as everything is reduced to shallow soundbites. A big criticism I have of FB is that discussions become cold and die frighteningly fast (sometimes just a few hours) whereas on forums they can last for weeks or even months.