Apology from Amber about her use of words

[amber32002]

I would like to apologise to all of mumsnet for using the word 'we' in any of my posts. It apparently gave people the impression that I would know every single viewpoint of every single autistic or Asperger individual and was speaking for each and every one of them. That was never my intent.

I apologise unreservedly.

hi amber, i would just like to thank you for all your advice to me over the last few days, and i would never take offence at you using the word "we", i am only thankful that you are so giving with your time and your insight has certainly helped me and mine

thanks

bev

Amber, Im not sure what has happened as I've not been about for a few days, but just wanted to say that I find your posts exceptionally helpful, and insightful. You've really helped me to understand my son better. Thank you.

Amber, you're an inspiration to a lot of mums on here. I'm so sorry you've been made to feel bad like this, I know how hard you work to help and support people on here and elsewhere.

It would be stupid if every time you said "we" you had to qualify your statement with a disclaimer.

Hold on..unless this is some strange coincidence of random pickings - I was so worried by what was said about me talking as if I spoke for every individual and having no clue that others might have a different opinion that I thought it must be true. But looking at what I've been writing to people in the last few days, these are the random examples...

"Girls with Asperger syndrome? There's some of us on here. Well, us once we're grown up, anyway. Generalisations follow:."

"?but I can generalise a bit..I'm sociable with people I know. And my goodness me I have an imagination (though it's a bit odd!), and I can be affectionate on my terms. And I'm aspie as hell itself - right off the scale on most of the things tested, and well on the scale for the rest too.The thing is, our sensory world is such a nightmare unless we can plan it"

"We need data. Lots of data. But we can only trust a bit of it at a time.It takes us up to 100 repetitions for us to build up enough of a picture on something new to feel confident in it. Doesn't mean you have to walk there 100 times, but he's probably got to think about it 30-100 times - and feel certain that the answer is the same each time - before he can calm down fully." Well, this is from the experts, so I think we can blame them rather than me if it's not true.

"I'm not an Expert or brain scientist, but I've had enough years of reading and talking with them to have a few clues"

"Much depends on how much we know in advance, and how information is given. let's say for example?.(gives examples)? No guarantees that either approach will result in a non-meltdown, ?Might not work, but worth a try unless you already do it that way?"

Trouble is, the noise of other people really is often deafening for us.

We're often not at all sure what 'love' is.

There's pages and pages of me using words like 'often' and 'generally' and 'might not work' or using research material from the experts to illustrate things.

I'm not finding many examples where I've forgotten to make it clear.

What am I supposed to do differently so that I always get it right? Can people please help me?

Amber, I don't think the majority viewed your use of 'we' like that at all, at least I understood what you meant by that, but after things that have been said can understand why you have posted this. I hope this doesn't make you feel restricted now in what you can and cannot say as your posts are insightful, well written and most of all, very helpful to the mothers on here with children who have (any type of) autism.
I do not have a child on the spectrum or with SN but I do have members of my extended family who do and so you have helped me understand them a lot better.

Amber most people get it wrong occasionally, i dont know ANYONE that gets it right everytime...see you're normal just like everyone else.

i always use the word we as a way of speaking but would never be speaking for all people

amber your posts have always been inspirational and i dont look into your posts as being about everybody but about yourself so do not now feel uncomfortable to write as i honestly never read it in that way

your posts are like windows to your soul it helps us realise how or what our child may be thinking or feeling its helped me find out some of bubbla boys sensitivity's so carry on

i think at times when people are angry about things they get personal and can bite dont speak for me etc but really its not meant its anger

if someone mentions something about not speaking properly i bite as i know my ds cant

its just a natural reaction sometimes to be over sensitive but i really do feel you need to not take it personal and continue doing what your doing xxxxxxxxx

your reading to much into it what your not reading from that is how many people you have helped in my opinion thats what counts

ODL and now ive made it look like you've "got something wrong" - which you sooooo havent!

Amber you are definately better than me at these things. Im always offending people, and i honestly dont mean to, its just kinda... a talent I think

Agree with JBKP.
But would it be useful to not get so personally involved in threads like those, especially if you end up upset by them. (Havent read all of them, but have got the gist but never saw the poem in question). But dont take peoples dislike of bad effects ASD has on their lives as criticism of you they are not menat that way.

improvingslowly the poem made me cry i was upset all night at it took me all the next day to see what the gist of it may have been but it was not nice words used was not nice i want the poem forgotten now i just want amber to see that she is so valued so yes forget the poem it was very upsetting but we all appreciate you and think so much of you lets just throw the poem to one side and support each other again

i have a thread for group hugs if needed and then we can just get back to normal

the poem has gone but unfortunately some of the words will stay but its a point of saying right that was the attitude then do you know what lets prove them idiots wrong lets show them it wont bother me by carrying on as before

I was also just thinking "we" could be taken as a "them and us" kinda thing - but the thing is humans are programmed that way, group survival. Theres 'men and women', 'adults and kids', 'those in authority and those that have none', 'childless couples and those with plenty', "toffs and slobs", 'lefties & righties", "gay or straight" even "innies and outies", you name it theres a group for it, many people belonging to many different groups. Its human nature, we all feel an innate sense of needing to belong and 'groups' do that:. there cant be groups or differing qualities without a 'we' and there is no way to differentiate between groups without using either a 'we' or 'you'. And without that differentiation, it would be difficult to understand which group the speaker is addressing. XXX

Want to know how hard it is for me to work out who "I" am, half the time, let alone where to define "We" with 100% accuracy. I really, really do need people to be clear and as kind as they can if I get things wrong, because there's no point in me doing the work I do if I am getting it wrong.

What helps is for people to explain how they see it, to join in, to put their views down in ways I can understand, given that I can't 'see' words - I have to convert all of them to pictures to be able to know what people are saying. I don't make a big thing of this on here, but it adds to the challenge for me.

I really really don't want to (brass) anyone off on this site. I think everyone's lovely, without exception, including people like Davros and Chocolate, and I am so sad that I've offended and insulted some people without realising it somehow.

improving, Amber gets involved, at great personal cost to herself, because she cares and wants to improve the lives of others.

I'm another one (with Asperger's) who takes criticism badly. Its not something I can control, because it is an overwhelming fear of failure and hurt that squashes and pushes out rational thought processes, albeit temporarily. Its a really REALLY horrible feeling. The way I (and probably Amber too) cope is to try not to bring criticism on myself. However every now and again I feel a need to speak up. I try my hardest to get it right, but sometimes people misunderstand what I'm trying to say.

I cannot BEGIN to tell you how much Amber has changed my life for the better, with the unique support she offers me.

Ambewr

Dont be silly

you're amazing, God's gift (look away non faith types LOL) to ASD people, a voice for those at the HFA end certainly. Who deserve a voice as much as any of the others; we all need a voice and just because you can talk doesn't mean you can articulate your message well or feel able to deliver it or even interpret what you feel; indeed a voice doesn't mean very verbal either, DS3 has a voice, limited use it is though.

Trying to explain further about what I learn from this place, I know that MrsT had said that not enough research was being done into LFA, so I've found 15 people with an interest in autism research and work is being done in several more areas now. I really do try to listen, but I know that I do miss things

You're only human Amber. Please don't leave. Nobody wants you to.

AMber we all miss things, we all generalise. All we can do on MN is to post to our own experiences and needs. In RL that's all we would be expected to do, here it seems we are expected to represent everyone but heck that's not possible! Living with two on the Spectrum who are so very different shows me that every day. The more people such as yourelfverbalise their experiences and take the more we can try to interpret what we find in our own loved ones; but to expect that to be a generic understanding is worng. Children on the spectrum 9and indeed adults) vary so much because they are first are foremost people, the person they would have become had they not developed the ASD is there co-existing and putting an inetible slant on the total person; I have no doubt that had ds1 not been AS he wuld still have been aggressive, and ds3 would still have been gentle and a thinker.

We can learn from your experiences but to expect them to relate to all ASD and represent all is a fault of the reader not yourself.

I also note in the past that thre tolerance we ask for our children is not always extended to you: we have to understand ythat you do have an ASD, and as such may not always understand the subtleties of MN posts, it's aprt opf the DX. Heaven knows I get it wrong enough,my record was IIRC three apologies for misunderstood ironies in one day a few weeks back!

Give yourseldf a pat on the back and a break Amber, you're doing a great job.

Amber
That was one comment...just one
I know how much one comment can cloud out everything else...but please try to concentrate on what other people have said too.
Just because one person may think you have made one mistake in one area does not mean that you have made lots of mistakes in all areas.
Nothing has gone wrong
No one wants you to leave Mn
For what it's worth i think this is just what happens here every now and again. We shuffle along nicely then someone feels a bit put out and not heard properly by the board in general.We all get a bit stroppy and then we all settle again untill the next time.
It will pass...just stick around

amber I would like to thank you for your help. Your insight has been invaluable already and I've only posted a couple of times so far! You have made a positive difference to my family. I realise that you may feel upset over other people's criticism of your use of 'we' (I haven't read all of these threads), and I personally take criticism very hard so I understand it must be very upsetting for you. But PLEASE understand how fantastic many of us find your help and support. And maybe I'm also guilty of speaking for the collective here, but I'm taking my evidence from all of the supportive posts people have written on this thread! It would be awful for you to feel that you couldn't post because your every word is scrutinised. Thank you again.

I know how much I go into 'catastrophic thinking' and can't stop. And I'm my own worst enemy for overfocusing on things I get wrong. I hate getting anything wrong or upsetting people, anyone at all

And thank you to anyone who thinks any of it has helped in any way. I am very very happy to provide links and references if people ever want to check whether what I say has any expert backing.

If what I say upsets some people, does anyone have a clue what we could do about it? Is it worth me having one thread where I can just put a disclaimer at the top and then only talk to people who ask me things on that thread, would that work?

How do I know which people are upset and which ones aren't so I know how to avoid upsetting them? I am SO bad at working out who's who from names on here. I thought totalchaos and tinyclanger were the same person because my brain only registers the basic initials and pattern of the word, not the whole word .

Speaking just for me, I appreciate your personal perspective as it is this that is helpful to me and DD (aspergers). Having read a lot of expert opinion, it still is the real life issues that cause us problems, and to be able to speak to somebody who has what appears to be a very similar perspective and experience of the world to DD is what is so invaluable. I am scared for her as she struggles to come to terms with things that other people take for granted, and I worry that not enough is done in our schools for HF children on the spectrum. I haven't even begum to think what happens after she finishes school. To be able to discuss this with you has been really helpful. We need support, and despite the fact that you are a stranger to my family, you have willingly given your time to try and help us. Again, thank you for that.

begun tut! Me and my rubbish typing.

Ah Amber us aspies are sensitive souls arent we.

im AS as you know and ive never ever been offended by your use of us and we in fact most times i sit there nodding and saying yes i do that and i think that.

dont leave here please i look forward to and enjoy reading your posts,you have explained a lot for me and it helps me to come to terms with my aspieness.

jen
xx

AMber presumably if someone is asking you a qquestion they know you have ASD

if they know you have ASD they they should damned well expect you to strugglewith language subtleties at times!

I understand the issues about a lack of voices for LF ASD people, that doesn't in any way reflect on what you do, or at least it shouldn't. We should still celebrate when any section gets a voice. If someone with LF ASD has a spokeswoman (Donna Williams? Don't know much of her but I think that's the one) I don't see anything but good in it, so it should be for HFA / AS.

Actually I need a voice for HFA; people assume that as DS3 (current DX ASD non-specified) will go on, according to Paeds, to receive a HFA dx that he can speak for himself but of course he cannot. Just because he functions at a highish IQ level doesn't mean he has any form of voice, in relaity it is little than when he was non-verbal as he doesn't seem to have insight or a need to share, add in injury related scarring on his mouth and quite frankly communication wise he is stuffed.

Your posts help me to undersdtand how life is for him, and that shouldn't be reserved in one thread. As adults we are quite able to understand the limits on that advice.