trekster Report post Posted October 5, 2009 Hello i was wondering if we could have local areas of the UK to discuss things like "local services" meeting up with each other, social groups, parents groups etc. Is this possible? alexis Quote Share this post Link to post Share on other sites
Kathryn Report post Posted October 5, 2009 Thanks for the suggestion Alexis. What do others think? K x Quote Share this post Link to post Share on other sites
anntham Report post Posted October 5, 2009 Thanks for the suggestion Alexis. What do others think? K x I think its a really good idea as it is very difficult to find whats out there without word of mouth and experience. Ann Quote Share this post Link to post Share on other sites
lynne Report post Posted October 5, 2009 I also think its a good idea for people to meet and stop the isolation. You may need a topic for specific areas of england so people can choose to opt in. Quote Share this post Link to post Share on other sites
call me jaded Report post Posted October 5, 2009 We ended up setting up a parents group locally because we found local knowledge invaluable. Coming soon, online, is the Family Information Service. This is a national project which should give details of what's available locally. I've seen what our local council's version says - it's incomplete but a start. Quote Share this post Link to post Share on other sites
baddad Report post Posted October 5, 2009 Actually, there was a 'push' on getting people to post about local groups and stuff a while ago in the resources section... http://www.asd-forum.org.uk/forum/index.php?showtopic=132 it fizzled out quite quickly, but I think it would be a good idea to expand that in any way possible. that said, I also think there's a need for caution, as many local 'groups' actually get set up to promote intervention programmes and 'therapies'. But basically it makes good sense to offer all the help we can promoting local support groups that haven't got a product or agenda to peddle L&P BD Quote Share this post Link to post Share on other sites
minerva Report post Posted October 5, 2009 I agree they would definately be helpful, also if there is enough interest shown in an area but nothing known to be in place then there will be the opportunity to set your own up! I know it isnt easy but I was wondering if it would be at all possible to have a 2 seperate new sections of the forums, one for parents and one for children/teenagers. At the moment I think it would definately help my son to be a member here but am wary about inviting him as I wouldnt want him to see some of the more negative things written. And i'm sure he'd have plenty of complaining about me to do too! Quote Share this post Link to post Share on other sites
call me jaded Report post Posted October 5, 2009 This is us: Parents in Touch. If you need to know how to do something on a shoestring, ask me. Quote Share this post Link to post Share on other sites
Kathryn Report post Posted October 5, 2009 Great site, Jaded. An update of the existing national and local information pinned topic in Resources would be a good idea at the very least: - some of the links are out of date and more groups could be added. Would this meet people's needs, or is there a need for something more elaborate - eg separate threads devoted to particular regions? K x Quote Share this post Link to post Share on other sites
trekster Report post Posted October 5, 2009 i was thinking of maybe starting thread by saying for example "from Bristol, please post here and share social and support groups that happen in bristol" or something similar. The subheading would be "for non promotional use only" A pinned topic in resources sounds like a good starting point, so we could have "sw region social groups and parent support groups" (or even list them seperately) eg "SW social group for ASD folk" and "Sw parents groups". i don't mean to separate people out offensively its just some of the groups are for ASD folk like "the bristol autism user representation group". All what would be asked in return is for members to keep in touch with each other to reduce the "am i the only ASD (or parent) in Bristol?" feelings. HTH Alexis Quote Share this post Link to post Share on other sites
Mum of 3 Report post Posted October 7, 2009 I also think there's a need for caution, as many local 'groups' actually get set up to promote intervention programmes and 'therapies'. But basically it makes good sense to offer all the help we can promoting local support groups that haven't got a product or agenda to peddle L&P BD Sorry, but personally, I'd be quite happy if someone came along and 'peddled' an intervention prgramme or therapy in my area...it would be infinately preferable to sitting here all alone with my diagnosis letter and wondering what the hell we do next!!!! Maybe if you come from an area where there is already a good suport system post (or even pre!) diagnosis, 'peddlars' aren't welcomed, but up here in the wild and woolly hills, assistance and advice is very hard to come by. When I asked for help at the diagnosis meeting I was told G's file would remain open, and i could get in touch 'if anything changes'. In other words, 'don't bother us!!!' I understand that there are people who will see parents like us-desparate for help-and see pound signs in front of their eyes, and we need to be aware of this, but to be honest, I'd rather make my own mind up from a set of 'intervention programmes and therapies' in my area, than sit here twiddling my thumbs! I'm sure people can reccommend things they've tried, or warn others to steer clear of things that aren't that helpful, without opening the frorum up as an advertising site! Quote Share this post Link to post Share on other sites
cmuir Report post Posted October 8, 2009 Hi I'd welcome meeting others within my locality (Edinburgh). I've found that other kids/parents give me and my son a wide berth and it's upsetting. It therefore means that it's very difficult to teach my son social skills when he's not moving out of school with any other kids. Caroline. Quote Share this post Link to post Share on other sites
Kathryn Report post Posted October 8, 2009 it fizzled out quite quickly, but I think it would be a good idea to expand that in any way possible. that said, I also think there's a need for caution, as many local 'groups' actually get set up to promote intervention programmes and 'therapies'. I understand that there are people who will see parents like us-desparate for help-and see pound signs in front of their eyes, and we need to be aware of this, but to be honest, I'd rather make my own mind up from a set of 'intervention programmes and therapies' in my area, than sit here twiddling my thumbs! I'm sure people can reccommend things they've tried, or warn others to steer clear of things that aren't that helpful, without opening the frorum up as an advertising site! Both valid points I think. We don't want to be a platform for promoting particular interventions, but neither should we nanny people. As with anything else recommended here, people are responsible for doing their own research and checking out the suitability of anything they enter into. As long as we make it clear who the group is run by and aimed at, and weed out anything obviously suspect, it should be OK (she says, fingers crossed!) For starters we can dig up some of the support group info which people have posted already on the boards and put the links into the existing resources topic. If people know of groups in their area and would like to pm one of the mods with the information, we can add it in as well. This will eventually give us a more comprehensive list of what's going on in different areas. K x Quote Share this post Link to post Share on other sites
baddad Report post Posted October 9, 2009 (edited) I understand that there are people who will see parents like us-desparate for help-and see pound signs in front of their eyes, and we need to be aware of this, but to be honest, I'd rather make my own mind up from a set of 'intervention programmes and therapies' in my area, than sit here twiddling my thumbs! I'm sure people can reccommend things they've tried, or warn others to steer clear of things that aren't that helpful, without opening the frorum up as an advertising site! Which is fine... people can buy whatever snake oil they want. The point I was making was that the forum has very stringent rules about advertising, and having a link on the site for a local group run by an 'expert therapist' accredited by a group like DAN is no different to allowing a direct link to a DAN website. Coming back to my opening point: people can buy whatever snake oil they want - I just don't think this forum should offer leads to their local stockist. That's not nannying - it's just the way the forum has always been run, in the same way that BBC1 doesn't carry advertising. L&P BD Edited October 9, 2009 by baddad Quote Share this post Link to post Share on other sites
Kathryn Report post Posted October 9, 2009 Agree with you BD, normal rules should apply regarding advertising. K x Quote Share this post Link to post Share on other sites
trekster Report post Posted October 10, 2009 How about having regional threads in the therapies and interventions part? Then you can PM someone who writes about gf/cf diet in your area for example? Quote Share this post Link to post Share on other sites
Gordie Report post Posted October 12, 2009 That's not nannying - it's just the way the forum has always been run, in the same way that BBC1 doesn't carry advertising. I didn't know this forum was funded by a licence fee. James Quote Share this post Link to post Share on other sites
Kathryn Report post Posted October 12, 2009 (edited) Haven't forgotten this thread and and we will do something about updating the listed support groups soon so please pm me if you know of a group in your area which you think should be listed. I already have some to put in. Still pondering how best to do it - we can't and really don't need to duplicate information which can easily be found via the excellent resource which NAS provide on their website here. It's probably pointless to try and do that but I think it would be good to highlight groups which existing forum members are involved with and have recommended. Thoughts still welcome. K x Edited October 12, 2009 by Kathryn Quote Share this post Link to post Share on other sites
