A request for opinions and advice regarding Amber's departure from an outsider, but concerned friend.

[Catitainahatita]

Hi.

I am one of Amber's friends from outside the SN board. We have been distressed and upset by her departure and are unsure of how to respond to it.

We know that Amber was trying to seek a solution with MNHQ for some of the problems that she has faced on the boards recently. We would like to continue this, but are unsure of how to proceed.

To be clear: We are aware that there are many, many issues here that we do not understand or know about. It is not our intention to try to do anything that would be detrimental to other users of the SN board.

For these reasons, we seek your opinions and advice. We do not wish to be presumptious or insensitive or disrespectful in anyway. We would just like to help our friend.

One final personal comment. I realise that my own participation in a recent thread here was rude and beligerant. I apologised there and do so again here. I hope this lapse of personal control can be forgotten if not forgiven.

My only motivation here is concern for Amber; although, I repeat, this does not mean that I am looking to help her at the cost of anyone else.

I really hope there is a solution that is amenable to all. Could you all give us some help on how this might be done?

Thank you very much.

Sorry, but people have said that to me - I guess I'm a bit sensitive to it.

I've had an email from Amber, she's asked me to post it. I've been in email contact with her throughout, keeping her informed of people's good wishes, etc.

Anyway, Amber:

"I've had two old and good friends die today. I've had to travel the best part of 100 miles with dh to have his brain scan results (so far so good, but stressful). I've been up since 4am. I had an email from mumsnet to say the users had no appetite to change the way that talk works, and I took that really literally, because I do take things literally from leaders. If it's not what they meant, they needed to have rephrased it. I left in exhaustion and despair.

I don't understand some of the arguments here and in the site stuff: I can't work out why this absolutely has to be restricting people's freedoms. Why does it have to be done in such a way that it would?

Let me try to explain (maybe badly): Go onto the main Topics list. See how many there are. There's absolutely tons of different boards, aren't there? Loads and loads and loads. So would adding one more - ANY one more - be a huge restriction on freedom for people? Start with that thought.

There is already a Special Needs area and a Special Educational Needs area, for example. Was there a big debate about how one restricted the other one and causing censorship? If not, why not? Because they're for separate purposes? There's ones for further education, secondary education, primary education, general education, home education...blimey! So why does (for example) potentially splitting the SN board have to be a problem for all of mumsnet and cause disruption for all of mumsnet? If it's just a split for different purposes, and it makes sense, and it helps people by coincidence, then I'm missing the problem.

If there's a 'SN questions' thread as an area for general practical questions between mums about SN rather than lively/robust debate, (just for example) would that sort of thing a) restrict the freedom of everyone to keep posting in the ordinary SN bit if they wanted to, just like they do now (no it wouldn't), or b) give people more choice than they had before - a quieter place AND a sometimes livelier place to choose from? Why is it only seen as a restriction of freedom, and what sort of restriction could it possibly be?

A private board in a few months isn't a solution for me. I'm hurting right now, I'm exhausted right now, I need my friends right now. I can't wait for months, I haven't the strength left. I could go to any number of private boards right now elsewhere - why would I wait for months for a mumsnet one? I'm actually pretty scared of private boards after a very, very nasty experience a couple of years back. It takes me a long long time to work out the dynamics, and often the site leaders don't know a thing about ASDs and have no time to learn. And I don't know how mumsnet would run it or anything else about it. It's no comfort right now. I'm sure it will be good for some people later on, yes. But as a solution for me, I've no clue about it or comfort from it.

None of this should just be about me. I've said this so many times. I've counted a lot of people who have said they find it hard sometimes to post in the main SN bit because their abilities and exhaustion levels aren't matching the board or the threads at that point, and yet they want to join in and contribute too. I think a quieter place for SN would be useful anyway, since we have a massively tough job as parents and after a day wrestling our dcs or tearing our hair out, we might just want to be somewhere a bit quiet. Other days we might want to rant for England (or whichever country you're in). Handily, there'd be a place for both. A place where we know we can be quieter/rant more loudly without causing worry to others. I see this as improving freedom, not restricting it. Someone said that they were fed up with having to tread carefully round people. They wouldn't have to do so. More freedom! I also see it as improving Mumsnet's public 'face', their membership levels, their profitability. Properly done it's a total win-win situation.

No system is 100% safe. If people focus on only finding 100% safety then of course it'll never be agreed. There's no such thing. I've never asked for 100% safety, so I don't know why that was raised in connection with this. But...if mumsnet means we have to be able to take whatever comes our way, then I've done the right thing by going, because I just can't. Not "I don't wish to" or "I think it's my right not to have to". I just can't.

I can't - any more than a wheelchair user can "just walk up the stairs" because everyone else can, or a person who's deaf can "just hear" because everyone else can. I'm sad.

I'm glad that others are so able, can access the things they need, but I am sad that I lack the ability to do so in your way.

As you know, I'm already having to do all the translating from words to pictures and back each time, I already can't understand a lot of the threads and boards and posts so have to stay clear because they're on topics that mean nothing to my brain. I disguise it all. I don't even know who's who most of the time. I do almost 100% of the coping already on here, gladly because it helps others not to have to cope with what would otherwise be a totally utterly different comms system. No, I don't cope well with some other SN boards either, but I have better trust in some of their help systems, and it really does help me. The difference? If I say "oh heck, I'm scared" (which isn't often) they say "don't worry, we'll help". A big board yesterday warned me to stay off it temporarily because they were having a redesign. Tiny simple thing - few seconds to do. It made a huge difference to my life, rather than walking into a totally unfamiliar environment unexpectedly and getting scared witless. They took that second to think. No freedoms were restricted.

I'm doing a heck of a lot to adapt, to do all I can to be here, but I can't risk more brain function damage - and that's what's starting to happen to me through the ASD disability panic-fits and overload.

Thank you to everyone who's cared. Please know that I miss you all already, but I'm scared sick right now that if I keep pushing myself in environments that are frying my brain, I'll not be able to care for my family, and they need me to stay strong for them.

And since I am not a member of mumsnet, I don't have a vote on this anyway, so those are all thoughts you can all totally ignore.

love from an exhausted Amber"

I honestly think that this is exactly the same problem in RL support groups. Adult AS/parent ASD support groups do not mix well. They need and require totally different things.

I would support a section for adults on the spectrum (and friends) - I would see that as equivalent to what often happens in RL- adults set up their own support groups.

I would not support a 'post this type of thread here and that one there' because I think it is far too hard for anyone else to understand what should be posted where. I for example would want to post Autism Every Day as support and Welcome to Beirut or Holland as support, but I still have no idea whether they would be acceptable. I would not want them posted in debate- I'm not offering them up for debate. I'm offering them as something supportive.

Firstly Amber hasn't asked for a support board for adults with AS (or if she did I missed it). Her needs don't relate to that at all! Secondly, from what I can see, and from what people have posted, she has helped and supported a lot of parents of children with and ASD. Support that other parents might not be able to give because they don't have the same insights into a ND mind (and no, I don't want to debate that either - but that is how I see it).

I am tired now, its been a long day, and I'm going to bed...

random thought, could something not be done like it was for the antenatal testing topic,
in a way split the sn topic in to 2, so the old hands who have been in the sn world a while can still have their rows but there could be a quieter place as well, and maybe mn hq could just keep an eye on it and move lively threds to the other side(hope this makes sense)

is exactly how i feel....

and 2shoes- " mn buddys "..fabulous!
(when "contact ANY mumsnetter was possible...we found our own Mums'sNet * Buddies".

When i started on mumsnet it soon became my ONLY support in my life.

I still need it- but to quote ambers email :

"It takes me a long long time to work out the dynamics,"

and a couple of years ago...i somehow got it wrong- when a 'private area' was totally awash with gossip that was drowning me- and since then hardly any of my 'old pals' have 'chatted' with me.

I apologised for my social clumsiness... but i did it in full view of all posters...rather than in the 'private place'...and was critisised for that.

THIS is the first time i have really talked about this... and to be honest this amber thing has remionded me of how i felt when all the shit hit my fan.

so...like marybs said
"Thing is, she isn't the only one who has problems, but is the only one with the "umph" to face up to it, I certainly wouldn't have the courage to make a stand and try to get it changed. I just get upset and hide for a bit until I feel better, and avoid what is causing my distress."...

that is what i did... for 2 years... but i am now prepared to speak out.

(p.s...if anyone reading this is interested...I used to be the 'funny' and 'lighthearted' (most the time) MRSFORGETFUL...'affectionally named as MRSF...

it is a long time since i have felt any affection on MN

I have to seek for affection and support in RL now. But it is not there.

back then ALL my posts were in SN..whether truly SN relavent or not...i just felt SAFE there. Now...i have to post elsewhere.

Occaisionally i find rapport with people...but due to my own 'special needs' i soon get swept away by the tide...

Have posted this on the several threads that have been started about this

I kind of thought that this had settled now, what with the tearoom thread and whatever; it's a shame that the comment about there being 'no appetite for changes' was made to Amber by MN and taken, understandably, by Amber to mean that there was no appetite to help her. I'm assuming that MN perhaps meant that there was no appetite for a change to the board (which is not necessarily true for all, but a reasonable assumption for MN to make when people like me have argued so vociferously for everyone's right to say what they need to say.)

I think a change into two quite abstract types of SN boards would be difficult. Who knows when a question thread will turn into a rant? Who knows when a rant will contain a question? Who know whether a cross/sad thread will have a happy ending or vice versa? Also, many posters (including me) would not be very happy to have to post anything negative in a rant/ controversial thread, as though it was something dirty to be ashamed of.

However, that's not the same as me saying that Amber shouldn't be allowed on here, and that I want her to be excluded. I've never said that I want that, and those who've said that I did either chose to misinterpret or didn't understand what I posted.

I don't see why the tearoom thread can't be kept for the happy chilled type of posts, like a chill out zone or safespace. Don't really see that that needs a separate board - seems to be working for people so far. As for the 'controversial posts'...well, Amber has said that she doesn't mind parents ranting (so that probably doesn't need a separate board) and that she's going to think carefully before opening up threads that look like they might be upsetting, so I think this is more about Amber feeling that people want her here (hence being upset by MN's post) than about what is done to change things.

If there are so many people willing to flag up any posts that they think might upset here, then the combination of the 'safe' thread, careful choosing of topics and flagging up by friends should help, shouldn't it?

This whole thing wasn't over disablist posts or anything like the superrace threads, so is a poor comparison, IMO. It's also not about refusing accessibility, but balancing up rights and needs of everyone.

I also think that the point that many people have made about arguments and disagreements being upsetting for everyone, NT or otherwise, is very true. We all get upset and angry when we feel ignored or that someone else is wrong in what they've said and done. I think that, particularly on the SN board, we're generally very tolerant with each other and try to understand that everyone here is under pressure in RL and don't need extra here...but a talk forum inevitably contains disagreements and strong feelings; that is intrinsic to iits nature, and I don't think you can moderate for that without taking away its honesty and its openness.

/hijack - MrsF - I used to be mummytosteven, we chatted offsite a little by e-mail years ago - I had a bit of a MN sabbatical in about 2006 - which was when I guess your difficult times on here took place, so I missed them - I guess I just assumed that you were deliberately talking a step back from SN and on the craft threads over the years - I don't have CAT but my e-mail addy is milkfloatquack at hotmail dot com if you want to touch base again.....

How about a section within SN called something like "look for a mumsnetter with a similar SN" - applies only to certain SN I appreciate.

it would specifically be a place for you to try to find adults who have the same or similar SN as your child so you can try to figure out whether any of their testimony/insights might help you get inside your child's head a bit?

There wouldn't be special "rules" but you would obviously be less likely to report potentially hurtful things to someone's "face" as it were. And maybe mumsnet could have a wider discretion to remove posts that the adults with SN found upsetting than would otherwise be appropriate?

It would be a dreadful shame to lose Amber's insights. I'm sure she has helped many families all over the world.

thanks TC... i will keep your email addy safe.

back then...my nextdoor neighbour moved (she was my RL ONLY support...only one who understands my chaotic mind...my psychologist ended my CBT as she was moving away...my CPN was pregnant (so left) AND i felt i had lost ALL my mumsnet support.

So to 'find you again' is lovely.

"Firstly Amber hasn't asked for a support board for adults with AS (or if she did I missed it). Her needs don't relate to that at all! Secondly, from what I can see, and from what people have posted, she has helped and supported a lot of parents of children with and ASD."

I'm aware Amber hasn't asked for a support board for adults. I'm suggesting it as an alternative for everyone else having to second guess what might upset her.

I agree with givemesleep.

And yes Amber has supported a lot of parents of children with ASD, but there's a whole load of ASD out there that isn't in the realms of her world of ASD and I think that should be open for discussion too. This IS an issue across the globe for ASD at the moment btw- and has come up at every single conference I have been to.

I'm not trying to keep Amber (or anyone else) quiet, I am just here saying ASD should not be sanitised. Or that only one 'type' of ASD should be allowed representation.

Amber's suggestion of highlighting topics that may be upsetting is unworkable imo so I am suggesting others.

I am sorry if I tread on anyone's toes here but I'm going to anyway - for those of you who say that debate and disagreement are just part of the boards and things that we all have to deal with, I agree entirely - except in amber's case (and people like amber). As she says, it's not something she can learn, it's not something that one day she will be able to do, she simply CANNOT do it.

If there were to be a split board, which I can't see happening but I do think it would be nice to have Amber's Corner, then it would mean that anyone who wanted to have a strong debate, or disagreement, or be controversial, or who doesn't think amber really understands their viewpoint (you're probably right, she probably doesn't) would simply STAY AWAY from Amber's Corner, thus leaving it a haven for those who DO want her insights on things, and where she can be safe because people won't be arguing.

It is possible to have non-controversial threads, great long ones too - and very nice they are!

So, why can't amber have Amber's Corner, with a header by MN explaining what it's about? Why would that be so hard?

Wouldn't that be the same as an adult AS support group though? I have no problem at all with Amber's corner, but I'm getting the impression that's not what she wants.

hello saintlydamemrsturnip

I don't think it would be the same. Parents of little ones would be asking mumsnetters with ASD about sensory issues, problems multitasking, etc. So it would be Amber supporting other people not the other way round at least some of the time.

Wish we could sort this as I have a question I'd like to ask her!

thanks mum23 sorry things were so bad for you back then.

lingle if you ask MaryBS she might be able to email amber for you - but amber might not be in a good place to answer just now.

saintlydame - no, I wasn't at all thinking of Amber's Corner as being a support group for adults with AS, although that could be part of it if it worked - more what lingle said.

Well surely an adult support group (plus friend's) would be a place of mutual support not a place to answer questions.

I think it needs to be within SN whatever it's called.

Newbie parents of two year olds need to meet people who are further down the line and have gained experience to share, people in the same position as them,and people who might be able to help them feel they're a bit more in the child's head. Pref. all on the same board if not the same thread.

I agree lingle - a sub-section of SN would be ideal.

Amber's corner sounds very like the current tearoom thread thing, and nobody seems to have a problem with that, least of all Amber, who set it up! Can't that continue and then start a new one at 1000 posts? Though I know that some people would find it a shame not to have her post her insights on their general threads about ASD/AS, they could always go on there and ask her and know that she's 'there'. Might give her fewer threads to trawl through too, as she has said that she finds it hard to keep track of threads.

tbh i sometimes think there needs to be a teens section on sn as well, as dd is 14 and often I feel homeless as I don't fit here or on the teens topic.

Well with my soon to be 10 year old in a few days I would agree 2shoes. Teens more relevant to him than toddlers.

Good evening.

I realise you are all in bed, but the night is yet young on my side of the Atlantic, so I am catching up on this thread.

In the first place, thank you all for contributing to this discussion. It seems clear to me that the situation we are dealing with is also about tolerance and inclusiveness, another minefield for any talkboard.

To summerise the options people have suggested so far (thank you all )

Rustybear mentioned that MNHQ was looking to set up a private support area, but that it would take a few months to get up and running.
MaryBS quoting an email from Amber, points out that this ddes not offer much hope as there is no indication that it would be set up in such a way as to be beneficial to her.

RB also suggests that Amber could also write a blog.

2shoes suggests some kind of buddy system to help her navigate MN and stay away from her triggers.

SaintlyMrsT suggests a section for people (not parents) with autism. Something that MaryMB assures us that Amber does not want.

Amber herself in the email quoted is suggesting a division of the SN board into different zones (contraversial/quiet/questions).
But some posters think that this would be too restrictive as it would (I think they mean this) oblige them to self-censure themselves.

Givemesleep and others wonder why the Amber-friendly threads were not a good answer.

My own thoughts on this are as follows.

1. Private support groups/and the idea that Amber should perhaps remain in her own friendly threads, are all very well, but I think (and I am not trying deliberately to be controversial, just expressing a counterargument) could be construed as discrimination. It might be like having a wheelchair-only in a downstairs room at a party, where the main fun is going on in an upstairs hall (with no lift). It is inclusive, ie. it allows everyone in, but effectively separates one group of people from another.

1. The buddy system sounds fanastic and I would be happy to sign up to be one such person. However, (again without intentionally being contrary) it is a solution that demands, again, for Amber (and by extension anyone who may identify with her concerns here) it might seem like the demand is that she adapts to MN, rather than MN making itself a site that is also welcoming of people in similar situations to hers.

1. Variously posters have commented that Amber's situation is too unique to her to validate her suggestions. If I understand correctly, they contend that no two people with ASD are alike and they all have different triggers.

Having read the quoted email from Amber, I think that she is pointing out that she is not suggesting that MN make changes that are only tailored to her needs. Rather she is suggesting a division that would allow all people (and there are many of them) who dislike argumentative and contraversial threads to know which they are before they open them.

I am not sure why this would constitute a terrible restriction on free speech or force people into self censureship. It already exists anyway on MN in the form of the AIBU corner.

The only difference would be, as I see it, that such a division would also require outside management. That's to say, a poster might start a thread in the quiet zone without any intention of initiating a freefor all, but it ends up going that way anyway. In this case, perhaps an option of "report this thread" could be set up, so the thread could then be transferred to the contraversial section. Noone need be censured, but members could all be aware of the status of a thread.

I do think that this might be a good way to resolve this issue, perhaps in tandam with a buddy system.

Finally, to Robespierre. This is an idea that would be confined to the SN section, altough, from what I understand from other poster, it is a solution that has already been adopted in some other sections of MN.

Sorry for the excessively long post. I hope I have been respectful of everyone's opinion. I am not in favour of heavy-handed censureship at all. I just think that when we demand that everyone "puts up or shuts up" in a public forum we are actually being discriminatory against those who lack the necessary mental tools to participate on an equal footing with everyone else.

It´s not about silencing anyone, simply making MN a more accesible place to a group of people who already find communication difficult.

Right, now I am off to bed.

Thanks Catitainahatita, that is really helpful.

Lingle, if you email me your query, I can pass it on to Amber. I know she'd love to help.

Well I think the post shows how confused we all are about what is actually wanted/needed.

To my mind there needs to be a decision about what Special Needs is about. If it's a parent support group then I would be anti any censure at all I'm afraid -because I think that is essential for any support group. People need to be able to talk honestly and if they can't then you are not running a support group. God knows I've sat through enough things in RL that have made my teeth itch. My belief is that you don't stat challenging things in a support group - it's a private space where anything goes. Likewise that was my issue with My Name is Autism, yes it's angry and rather ugly, but it will be helpful for someone at some stage and therefore should not be deemed unworthy. If someone is in a difficult place with ugly thoughts and then gets reminded they're ugly and they shouldn't be thinking like that then you're not offering much support (I don't go with shouldn't- people feel what they feel).

If the special needs section is not trying to operate as a support group, then yes I'm sure it's fine to decide that something is too robust or emotionally difficult. But if it's here to function as support for parents then I remain anti censure.

I like the idea of it being divided into zones.

MrsF/Mum23ASD - I am terrible at keeping up friendships on here, but I just wanted to say that I always smile with affection when I see your name. We have talked at various times over the last few years, and I like you a lot.

I will reply more later after school run, but wanted to get those two bits out now