Why are we not allowed to share contact details?

Let's be very clear about what we adults are doing here. This website was neither designed nor intended for AS adults. As R'socks says, we have recently had some robust discussion around this very issue.

Anonymity is vital. If you read some of the things we discuss, and I include my own posts on various subjects, there are matters that we touch on that are deeply personal. I certainly wouldn't publicise, or want to HAVE publicised, things that I've discussed to help and encourage other AS adults.

It's very easy to criticise, and most of us do find something about the NAS to criticise, but thanks to our previously mentioned robust discussion there is some hope that we can move things forward and help the NAS to help us. We want the site to evolve, it would be far too misguided to expect everything to change overnight without discussing all of the implications - AS people, expecially those who don't recognise simple dangers that they put themselves in, MUST be protected from themselves and, potentialy, exploitative others. In this sense, the NAS acts very responsibly.

Hi AspyMum,

Being prickly is practically a pre-requisite for diagnosis so I know I am prickly but it takes a lot to make me react in the forum because I expect everyone to be at least a bit maladroit. If you were a sliver tongued diplomat I would smell a rat!

NAS can't be perfect for everybody and the main focus of their work is people who are the most disabled. It is also a charity staffed by a mixture of folk some of whom are on the spectrum so some things that they do and put on the website might not suit everyone. On balance, the website is useful, some people object to various aspects of it from time to time and we have had a very robust discussion about how the forum is moderated and I think it's fair to say that we have made ourselves heard. see http://community.autism.org.uk/discussions/general-discussions/general-chat/idea

I agree with Cephie's comments about anonymity and the facility it gives for frank and hopefully sensible conversation. There are other places in tinternet for meeting like minded people and I guess for finding other diagnosed people. My impression is however that most people with a diagnosis who have sustained a long term friend ship or relationship didn't set out on that path by deliberately selecting someone else who was on the spectrum. I think that would frequently not end well. I have a few trusty friends who are aware of my diagnosis (the world does not need to know and the world actually doesn't cope with this information very well) but I have found that my encounters with other people on the spectrum (diagnosed or not) are always more difficult than with NT people. BTW I use NT to indicate people who are not on the spectrum but I do not use it to indicate a clone like group of people with very similar behaviour, there is as much variety in NT as there is within people on the spectrum.

Smallprint: For the avoidance of doubt, this is all opinion and my own personal view rather than a definitive judgement! I reserve the right to apologise, contradict or correct myself as necessary whenever anyone identifies anything that I should have given more thought to.

Hi again AspyMum,

 I agree with you the stereotypes perpetrated by the NAS are all rather patronising, but the spectrum is wide and they offer much help to parents, some of whom are really struggling. Check out the forum though - especially discussions around 'mild' and ' high functioning'. Adult autism seems to be much neglected, seemingly if you have got to adulthood and coped there 'can't be anything much wrong with you'. Particularly true for the older generation. When I was at school in the 70s I doubt autism would have been on the radar. 

I must come out here and say I am as yet undiagnosed, mostly because I manage to function OK day to day, and if not I  hide away. I am female and 57 and have developed plenty of coping strategies, so i assume it will not be obvious that I have issues and of course I am aware I may be deluding myself that I am autistic. I believe it though because I recognised so much of myself on this site, in this forum, which i investigated after scoring high on one of the well known tests. I really must get onto my GP.

Meant to say there are Autism chat sites around - maybe someone could point you in the right direction... I haven't checked.

Ok, if I'm allowed to stay anything here goes...

I feel slightly uncomfortable, maybe unsettled is a better word, about the NAS.  Just one point would be the photos on the website of 'Autistic People'.  They all seem to show someone who looks 'disabled' with an able carer sitting beside them, what about people like us?  I don't have or need a carer (someone understanding to talk to at times would be lovely though!)  Isn't that perpetuating the stereotype that to be 'really Autistic' you have to be quite severe?  

I tried to join a mothers group for Autistic children (my child is ASD) and I asked if there were any other mothers there who also had a diagnosis, there was a long pause then the woman on the other end said, 'Well no, not a formal diagnosis but I'm sure we all recognise Autistic traits in ourselves some days'.  NO, that's NOT what I meant!!!!  Or the other group where the woman on the phone said, 'I really can't stand it when people think they're Autistic and they're not'. ARRRGHHHHH!!!!

I have an NHS diagnosis with a huge report that quite succinctly outlines all my traits and puts me fair and square in the Autistic category, not borderline, but really in there... and yet I have managed to hide most of these things. I avoid socialising (unless the people are intense and do NOT smalltalk) I don't really go out much at all (movies are the one exception) so then life is manageable.  If no-one see's you for more than a few minutes at any time then I can hide things, people think I'm awkward, abrupt, maybe rude but not Autistic.  But I hate it that when someone can talk to me on the phone, and I sound 'normal' then they think I'm making it up!!!  Life is really HARD, sometimes unbearably so!!

What do you think?  Do you think the photos are representative?  

And what has been your experience with people when you have told them you are Autistic?

Hi AspyMum, yeah - I can empathise (yes I can) with not wanting to do the basket weaving etc. Group leaders come across as especially idiotic.

I have found the annonymity of this forum very useful - there are many intelligent, literate, self aware people here - and I have been able to say much 'stuff' that I would otherwise repress, especially in a therapeutic context. Some of the regular posters make me smile ( and cry) and they are real people to me - but I can't imagine actually meeting them in real life - it would not work! There are very real dangers too, as I'm sure you are aware. 

Don't know what to say about the loneliness.

Thank-you for your welcome :)

But who said anything about smalltalk?! I don't do that!  My closest friend is autistic but vigorously denies it, I meant anyone who is happy to say they are autistic...

I have seen groups for autistic adults and they are not what I am looking for.  I have an ASD diagnosis but I'm at Uni, I feel worn out because I either get patronised and treated like I am incapable of walking down the street alone, or I'm treated as if I've made up the diagnosis because I come across as 'capable' (many years of observing and emulating).

My closest friend and I only speak to on the phone, (Not Smalltalk!) but it would have been nice to go to the movies with someone... I love the movies, I'm recently separated from my husband and I'm isolated.  Sigh...

Sorry if that sounds a bit prickly, I just don't want to access 'adult support groups' where I can 'play on an xbox' or 'crochet'.  I'm in my final year of a law degree... :(   I love the cinema and haven't been for over a year.  

Being socially awkward sucks.

The rules are designed to protect vulnerable people. The forum is used by autistic people some of whom need every protection from being taken advantage of.

There are some groups for autistic adults to meet in some areas. Given the communication problems that we have - smalltalk is not a strength for most of us - I would guess that social groups might be a bit strained.

You probably will have met other autistic people but you won't have spotted them. We are not good at working out the subtle differences between people.

Anyways, welcome to the community.