What is this forum for?

[indiscreet]

"I think there does need to be a debate about what this forum is for. As a new member this year I have yet to understand what the rules are for example, rather there seems to be none, only editorial control by people who I rarely see make a contribution." (LancsLad - Suicide Thread)

 

I agree. Why don't we have a debate about what this forum is for - and hopefully the 'hosts' and mods will join in.

 

I've always thought that it was probably started by and for parents of autistic children and that some of the problems arise from it having widened to include adults of all ages who are on the spectrum - but I don't know if that's the case.

 

 

 

 

 

 

 

 

[Suze]

I,m here ..happy to join in.I became a member many yrs back as my son suffered a breakdown, and was seen by a physch.....Dx with ASD, auditory processing disorder, dyslexia, dyspraxia, and sensory integration disorder.Statemented and educated in a autism resource.He is now 17 and doing fab .I use this forum as a parent and have been helped so much by many members on here .However I agree the forum has under gone some changes , and more adult members who have a DX themselves have joined and are posting which is fab.Maybe we need newer mods, amongst those that are now posting more than some of us oldies, I,m all for progression and development.This forum should be for anyone that needs it.

[A-S warrior]

thats evolution for you, nothing ever stays the same, guys like me and darkshine will come along and turn places upside down, lancslad will post like a mad man with his always on point and acurate posts, even the new mum members like mannify come here to socialise with us to learn more about a-s and to have a good time. its a forum now that self moderates, but if you are going to pick a new mod, then it would have to be lancslad. but hes one of those that also belives the same as me.

 

this is now a forum for pepole like me to be able to say what i want, and to have like minded convosation, its a place for parents to observe our posts and learn about us to be able to better understand there children, the landscape has changed. more and more young adults are signing up on there own acord, and making this there new home. myelf included.

[Mannify]

Why don't we have a debate about what this forum is for

You asked what I've been wondering for ages. I've always liked to assume that we are not all part of some melting-pot experiment , so how it all came about is interesting.

 

even the new mum members like mannify come here to socialise with us to learn more about a-s and to have a good time

Fame at last. I don't need to bother training like crazy for two years to become an Olympic curling medalist now.

 

I've always thought that it was probably started by and for parents of autistic children and that some of the problems arise from it having widened to include adults of all ages who are on the spectrum - but I don't know if that's the case.

I kind of assumed the opposite - that it was set up for those with a diagnosis and that us parents are the interlopers.

[A-S warrior]

.

Fame at last. I don't need to bother training like crazy for two years to become an Olympic curling medalist now.

 

 

my sarcasum meeter just burst a saftey valve lol

[Mannify]

[A-S warrior]

I have yet to understand what the rules are for example, rather there seems to be none,

 

 

by the way the rules are here http://www.asd-forum.org.uk/forum/index.php?app=forums&module=extras&section=boardrules

[SensitiveSoul]

I've always thought that it was probably started by and for parents of autistic children and that some of the problems arise from it having widened to include adults of all ages who are on the spectrum - but I don't know if that's the case.

 

I don't see how having adults on the spectrum, as well as parents of children on the spectrum is a bad thing and is causing problems. I would have thought that we all have things to learn, and we have help, support and advice to offer others. I know I, for one, have formed a friendship with someone on this forum already. I am an adult on the spectrum, she is a mother of children on the spectrum. I have loved messaging her as it seems we have lots to offer each other. I can offer her insight on how it feels to be a child/teenager on the spectrum because I've been there. She can help me to understand how it feels from the point of view of someone trying to help and support someone on the spectrum, because I have things to learn too. It strikes me as a positive to have a mix of people with different connections to the spectrum!

[Mannify]

It strikes me as a positive to have a mix of people with different connections to the spectrum!

Indeed!

[indiscreet]

I don't see how having adults on the spectrum, as well as parents of children on the spectrum is a bad thing and is causing problems.

 

I didn't say that it was a bad thing - or that it was causing problems - I was just speculating about the history of this site, since if it had originally been started by and for parents then that could have an effect on the way the mods look at some of the current posts.

[darkshine]

The asd-forum.org.uk site hosts would like to wish you a very warm friendly welcome. The aim of this forum is to provide help, support and friendship to people whose life has been touched in one way or another by Autistic Spectrum Disorder (commonly known as ASD), Asperger or any other forms of Autism.

 

Please click here for direct access to the

Asperger and ASD UK Online Forum

Asperger, Autism or ASD affects millions of people in the UK and worldwide. People dealing with Asperger, Autism or ASD often feel lonely and isolated and the aim of this forum is to bring people in similiar situations together to support each other and provide useful practical advice on dealing with the effects of Asperger, Autism or ASD.

 

 

 

All available on this link:

 

http://www.asd-forum.org.uk/

[SensitiveSoul]

I didn't say that it was a bad thing - or that it was causing problems

 

Obviously I misread your post then so I apologise. I guess I read it literally and perhaps needed to think outside the box a bit to fully understand. It was just where you said:

 

some of the problems arise from it having widened to include adults of all ages who are on the spectrum - but I don't know if that's the case.

 

It made it sound like us adults on the spectrum are causing a problem, and I still struggle to see how to read that as meaning anything else, but if you say it does then I take it on board and believe that.

 

Misreading and misunderstanding it was an honest mistake to make.

Edited August 9, 2012 by SensitiveSoul

[Mannify]

What is definitely remarkable about this forum, aside from the mix of people's relationship to the spectrum, is the diversity of ages. I just love the fact that teenagers on here can chat alongside contributors several times their age, and many combinations in between.

[hollypoppy]

 

I've always thought that it was probably started by and for parents of autistic children and that some of the problems arise from it having widened to include adults of all ages who are on the spectrum - but I don't know if that's the case.

 

I came on here to get advice on Childhood Autism. Its really useful to get a perspective from adults on the spectrum, but maybe would be an idea to have an area of the forum for parents?

[darkshine]

Hollypoppy - I just want you to know that the following is not aimed at you personally - it's just that ever since I joined this forum, there's been a repeated mentioning of issues with the mixture of diagnosed adults and parents on here, or there's questions, in the past there has been tension at times... and also the issue of the nature of this forum - or "what is this forum for?".

 

I just wanted you to know that, because I think this could be interpreted differently and cuz today is just the day that I felt like saying something about that

 

Regards

 

Darkshine

 

 

 

Ok, "so what is this forum for?" and the topic of - if it was created originally for parents and now there's a mixture of adults too, does that mean anything at all....

 

My point is in this quote of myself (I'm ignoring the fact that quoting myself is just ever so slightly tragic lol) that outlines the purpose of the forum, it is the forum welcome message.

 

The asd-forum.org.uk site hosts would like to wish you a very warm friendly welcome. The aim of this forum is to provide help, support and friendship to people whose life has been touched in one way or another by Autistic Spectrum Disorder (commonly known as ASD), Asperger or any other forms of Autism.

 

Please click here for direct access to the

Asperger and ASD UK Online Forum

Asperger, Autism or ASD affects millions of people in the UK and worldwide. People dealing with Asperger, Autism or ASD often feel lonely and isolated and the aim of this forum is to bring people in similiar situations together to support each other and provide useful practical advice on dealing with the effects of Asperger, Autism or ASD.

 

The key word is: people.

 

Not mum's, or teens, or adults, or dad's, or any other difference there is going.... "people"

 

I for one have had numerous conversations with the parents of children, teens and adults, parents that have a wealth of info and experience to offer - and I have seen other adults do the same, and I've just been amazed at times at the absolute determination that these people have, the tips they have to offer, the advice, the insight into their worlds.

 

What's more, I and lots of other adults on the spectrum, have also spoken to the parents and have been able to offer an insight into some of these children/teens/adults lives that sometimes isn't immediately apparent, we can offer another side that sometimes can explain things or offer ideas about how to broach certain issues.

 

But it isn't like a parent asks a question and every adult on the spectrum bombards them with stuff - parents talk to other parents too

 

Some people on here are what is called "NT" a term I do not like - and others have various other little labels, AS, HFA, ASD - to name but a few. And again, this mix of people all adds so much value, because we can all learn from each other.

 

I just don't think that we should have subsections of the forum that split things, because that doesn't make sense for anyone...

 

Firstly, it would be very difficult for those parents on here who have AS, who also have children with an ASD.

 

As an adult with AS, I don't want to be encased in a neat little AS type box where I can only talk to other adults with AS and nobody else - because that isn't how it is in the world - and I don't want to miss out on talking to some great people who are parents, just because I have a label that says AS and they have one that says Parents - and if there was a "parents only" section, that is what it would be like and that's not right, because there's been times when I've been able to say something useful in some way - I know that cuz people have told me that I have - I wouldn't want to miss out on seeing how they do things, and to be able to ask how they cope with a certain behaviour and if there's anything I can learn from that. And I wouldn't want to lose that interaction, because I know that I can sometimes offer something useful - but more than that so can they, I've had some amazing conversations, help and advice and even just comments that make me smile from some of the parents on here.

 

This isn't a thing where there's adults with an ASD standing one side of a chasm, and parents on another - we're all human, all people, all trying to live with autism as a factor in our lives, and I see it as unnecessary to create a line between us - because those kids now are gonna be the adults of the future, and us adults on here - we've got a lot of experience at that. It isn't all depressing stuff because the adults on here have struggles - some of us are going to get somewhere, even if it's damn hard along the way, and even if it takes longer than we hoped.

 

Anyway... that's what I think - that the forum is a place to help, support and provide friendship to people and it's the people who are members of this forum who do that, who help, support and provide friendship by talking to each other.

 

Isn't that what the forum is for?

 

To talk, about autism, about struggles and triumphs, share our stories, give and receive advice, have a laugh in the off topic section (or any other random topic that goes up in there) and to be there when we are there, and wonder where people went when they aren't around, and to look through all the different forums and talk about what we want to talk about, to ask questions, to learn, to debate, to get support and give support, and if we're lucky - finding some friends along the way. And anything else that people on here can get or give to the place.

 

I think that's what it's for - isn't that enough?

[SensitiveSoul]

Well said Darkshine. What a fantastic post!

[LancsLad]

Darkshine, you have my vote for 'new' best post of the year!

[Mannify]

Yes .

[hollypoppy]

Hollypoppy - I just want you to know that the following is not aimed at you personally

 

 

No offence taken! lol. The only reason I suggested an area for parents with kids on the spectrum etc, is that it maybe easier to find specific info and people with the same issues. My ex-husband is dx aspergers and our ideas on whether our undx son is on the spectrum are totally different. I agree that its good to have diversity and in the long run we're all here to get and give support and advice <'>

[indiscreet]

 

... The only reason I suggested an area for parents with kids on the spectrum etc, is that it maybe easier to find specific info and people with the same issues...

 

For the same reason I'd like to see a sub-section on "Diagnosis and assessment".

[LancsLad]

I have my concerns about creating a 'pick and mix' environment by sub dividing up the forum even more.

 

I believe it is important to look at the broad picture of what the spectrum represents and the peoples lives it touches upon. At times I find posts from some members personally challenging because they make me think about aspects of my own life from a different perspective, what might it be like to be my partner, my son, my parents. What would life be like if the symptoms I experience on a daily basis were different, how would I feel about myself then. All these things help me get a perspective on who I am and how I relate to myself and others.

 

I think the danger of structuring the forum even more is that individulas might simply have go to areas. In my experience the regular members would not do this because they tend to be broad minded. My concern is more about the casual visitor to the site who are possibly coming to it from a far more narrow perspective. Their expectations might be for a three or four mouse clicks to navigate to the information I need type experience. Sub dividing the forum would help them in that respect, but would it help us? Is that what the forum is for, handing out sound bites of information to the casual visitor?

 

Personaly I feel the forum is a far richer environment than that. I love the cryptic nature of many of the post titles. I love the personalities which frequent these pages. The quirky nature of the replies at times. I also find strength and support in the brutal honesty of the forum at other times. The anecdotal examples which give an insight as to how autism affects people either who have it or who live with people diagnosed with the condition. And yes within it there are masses of information. The more I engage with the forum the more I get from it.

 

Given a choice I would not add more structure rather the opposite. I think we are a community first a source of information second. A healthy community does not need loads of rules and regulations to enable it to function, rather as it develops, more and more is simply implied by how the individuals within it go about their activities on a daily basis.

 

There is a deeper element at play here as well. How do you satisfy the perfectionists amongst us when it comes to the structure of the forum. I know I sit here on a daily basis and there are lots of things which bug me about the forum in its design and structure. Part of me says completely re-design it. If I did I suspect half of the members might think it was improved if I was lucky, half would not, either way a lot might not simply like change. If someone else re-designed it there would be a similar reaction. From a personal perspective I tend to think the forum is what it is, it will change slowly over time and that leaves me with a choice, if I like what it offers stay, if I don't stop coming to it. It is a community and if I stay for a bit I feel obliged to give something back and that is how it should be.

 

Just a few thoughts.

[Mike_GX101]

Well that's easy:

 

It's a discussion forum for Asperger and ASD in the UK. That is all.

 

..."but wait! Isn't there more to it than that??" You're asking.

 

Well here's where I'm a little confused; I'm confused because it isn't really a forum where you can happily discuss about Aspergers and ASD in confidence because...well...I've said this before and I'll say it again...everything we type on this forum is apparently available from any number of search engines and I find that unsettling.

 

Sure if you treat it as a bit of fun and don't reveal anything personal then it's a good thing. But I do worry about how much some members are putting out there about themselves. In some respects I think some of the topic areas should be restricted to members-only like in other forums.

[hollypoppy]

 

In some respects I think some of the topic areas should be restricted to members-only like in other forums.

 

I totally agree!

[LancsLad]

Mike I understand your point about how much people divildge and who is looking on and it needs to be kept being made over and over again to ensure that potentially more vulnerable members are aware of some of the potential issues with the forum as it stands.

 

I suspect if it was members restricted those who wanted to come to the forum for the wrong reasons would simply become members as there is no way to verify their legitamacy. In such a set up people might actually feel safer than they actualy are. I understand your point and it is very valid but I think this can work both ways, it is a difficult one to get right.

[darkshine]

Well here's where I'm a little confused; I'm confused because it isn't really a forum where you can happily discuss about Aspergers and ASD in confidence because...well...I've said this before and I'll say it again...everything we type on this forum is apparently available from any number of search engines and I find that unsettling.

 

My search engine automatically prioritises any website I frequently view - that contains the search terms I enter, so if I typed "autism" I get at least a dozen pages from this forum. If I do it on someone else's computer, this forum comes way down the list.

 

I sort of fail to see how we can post in confidence, because we are writing on the internet, and by doing so a certain degree of confidentiality is given up.

 

But I do worry about how much some members are putting out there about themselves. In some respects I think some of the topic areas should be restricted to members-only like in other forums.

 

I don't see that happening - the forum mods and admins don't filter out the spammers as it is (even though they have a membership to this forum and can post and advertise).

 

Creating restricted areas would take too much work... and I kinda agree with LancsLad on that one...

 

I've always thought the calender is stupid - because I'm sure you can check that out without being signed in - that seems idiotic to me... why should just anyone be allowed to look at that?

Edited August 15, 2012 by darkshine