Holly - The moderator

i received permission from Ian Dale, please check with him and reinstate my post. You could of asked where I got my permission from before deleting 

  • Dear and community members, 

    I have responded to you in your original post as well here. 

    Firstly, I am sorry that I am only responding to you now, and I hope the response here helps to clear up the reasons behind the post being deleted. We would like you to know that we have spoken to Ian about the permission given, and although he agrees that he suggested the community as a place to seek information, there has unfortunately been a miscommunication and misunderstanding about what the community can offer in regards to research, formal or informal. 

    The community rules have always stated that any posts that are for research purposes will be edited or deleted without warning. The reason for this is so that the community remains a place just for the community users - to chat and converse - and not to be part of research for others to use in any capacity. This applies to the National Autistic Society as well. We will not conduct research here, as the community is not here for that reason, and therefore we do not want to encourage others using it for research either. 

    We appreciate that everyone on the community are able to make the choice of how much information they give in their posts, and we want to create a safe, open space, but occasionally we have to edit or delete posts that we deem to have broken the rules. This is a wonderful community to be part of, because you chat, support and advise each other amazingly. As Moderators we try our best to not intrude, but also be as helpful as we can, when we can. I am sorry if you felt on this occasion and on others that the wrong decision was made.  

  • No I only intended to use it to inform my information sessions at work.  I am Autistic but I am one of thousands.  I don't want to become the face of Autism in my sessions I want to make sure I represent as many people as possible so I have to ask the Autistic population

  • It seems they take as long as they like, maybe hoping we will forget about It?

    It appears  It is was not right to delete her initial thread topic title, ,if however they think it was a right decision based on finding out any relevant “ facts”/then it would be nice to be told,

    it does effect us, this forum is suppose to be provided for our use, if we cannot use it ,it isn’t our fault, if you offer a service then you should make sure it delivers what it is supposed to.

    As it exist’s  purely for us then should we not have some say as to what causes us concern?

    Two days now and no response, from my perspective they often just ignore people, I have had that all my life but would expect more from the “ NATIONAL AUTISTIC SOCIETY”.

     Come on admin at least respect my exhistance with some kind of comment.

  • For the sake of any strangers/"newbies" reading, I am posting a link to the *original* Thread at which I assume this Thread refers to:

    http://community.autism.org.uk/f/introduce-yourself/11915/hello---please-help-me-to-represent-the-autistic-community/

    ...The Starting Post was rewritten by NAS. But it was a good Thread. (If I had the original text I would also put it here, but I do not, sorry about that...) ...And as I write this, NAS has still not resolved the issue.

    (If NAS reads this here Post, then, also, how about those POLLS and certain older SPAM, instead of picking upon poor "IndigoAngie" instead,  please?)

  • The two pictures I attached to this post cannot be seen anymore.

    They are gone!

    Where are they?

  • Exactly. A poll is a type of survey.

    I think in this case that the rules were stretched too far. The intention of that thread was not  to do any kind of official research or to produce a publication. Therefore, the rules about research ethics and data protection do not apply anyway. As a scientist, I know something about what type of research requires those considerations, and asking a question informally on a forum does not fall into that category. Only if the OP intended to release the results publicly would there be such an issue.

    It really is a shame, because here was a person who could have made things better for all of us, and she even had permission to post, and then her post was deleted and nothing was done to restore it when the mistake was discovered.

  • I felt very sad when reading your experience. Almost started to cry.

    I would like one or two good friends.

    I become very attached and close to friends.

    I am extremely loyal. I would hate to leave someone behind and suffering because of me.

    Once I have a good friend, I never ever want to separate.

    I am glad, I was helpful to you.

    What is your idea of a friend? Maybe we share the same idea?

    I feel that my idea of a friend is also different. I would like a couple of close friends.

    Take care!

  • I’ve seen you make lots of friends on here already California, in a very short space of time.

    Thank you for saying that!

    I am feeling a little bit better now.

  • When it comes to friends I prefer quality over quantity.

    One or two good friends.

    I do not like crowds.

    I think I am interested to be a moderator in site like this one and I could do this very well.

    Definitely, after some training and time.

    And, if I could do this mostly from home or the location I could choose myself, a quiet place, I would be so happy. That would be life changing for me

    I love computer and the computer stuff.

    For me, location freedom is very important. I want to feel free to move.

  • ...What occurs upon this Thread so far, is both not fair and is also something of a shame/pity...

    ...And as my Post here takes the chance to reply to an actual Moderator, however, I was wondering how you feel about others actually POLLING...? There are certain Threads here currently running "Polls" and I wonder if that is also allowed or not...?

  • It doesn’t matter anymore. So leave it, I was annoyed last night, but it’s fine to leave it deleted. 

  • Well California It is not easy for me to make friends.

    I consider I have met people on here I call friends, I talk to them on here, we seem to share things that resonate between us, 

    I have no friends out in the real world. I do not want friends out there,

     my idea of a friend is not understood by people out there.

     I had one once when I was very young until late teens , it lasted many years, we were closer than brothers, shared absolutely everything. I was left behind alone and very unhappy.

     He decided to move on with his life. He needed to start being a normal every day person. Met a girl, got engaged, got married, had lots of children, etc etc etc, I have not seen him since he left. He has never tried to contact me, I did try to call him, I bumped into him once but the person I knew was no longer there, he didn’t seem bothered seeing me, just oh hi.

    The few people I call friends on here are kind caring people. We do not expect anything other than understanding and to know we can talk if we need to.

    it is more companionship.

    I received your message by the way, thank you. 

    You taught mevhowvtobdobsomething I did not know.

    ()

  • I’ve seen you make lots of friends on here already California, in a very short space of time. 

  • That would be great California and that could be a nice income for you. Actually, if you’re interested in that role, I’ll shortly be needing a moderator on my website which will be a paid position. 

    Do you not like having friends California? 

  • It is a amazing to hear that you find it easy to find friend.

    For me it is extremely difficult.

  • Ok,,,,well I just set the receive messages box to ALL instead of friends only.

    silly me, well I take back my earlier comment about “ having” to friend request people.   I think I asked back then but the admin didn’t reply to very much.

    At least my misunderstanding gave me a very good friend, which is a positive. 

    Itvreally is a shame there aren’t more how to’s on here, 

    Come to think about it?

    there used to be a how to To thevfight of screen. I am sure it said to PM someone you must friend request them first?

    Or as usual my memory is mixed up and fragmented?

  • Oh?

    ok I will take a closer look at my profile settings then.

    I often feel like dropping someone a PM just to say how I think they are so kind etc, 

    When I first joined I so wanted to tell some how much I liked the work they put in helping others, I tried to on thevforum, quite rightly they were embarrassed and couldn’t accept my kindness in front of others, I am the same, if I am told I am a kind person I freak out a bit. It really means that much to me.

     So I told them I wanted to just message them but I would have to friend request to do that.

     I did and it took a long time for them to think it through.

     Thankfully they did and we have actually become very good friends,

    thanks california. ()

  • I could send a private message to BlueRay.

    You do not offer that option.

  • Hi California, I have tried to find how to PM. But only ever find “connect” when in someone’s profile?

    i tried hovering over a users name but just got a box with  things for copying,saving etc.

     Many thanks, ()