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.

amber can you please email me
[email protected]

Hi Amber, I am not offended by what you have said, nor did I assume that when you used the word 'we' that you were implying that your experience was universal to all with asd.
There is no need to apolgise, to me of anyone else, I am sure.
My 4 year old is what is known as 'low functioning', and my 6 year old is hfa.
I take from your advice that which I can see applies to my sons, and leave that which doesn't.
Take care, and get some rest,x

I guess they see me using stupidly long explanations on here and don't realise what I can't do, though. Or the amount of help and years and years of effort it has taken for me to do any of the work. And I'm probably rubbish at explaining it properly, which doesn't help. But like I say to the support team, all it means is I can get in trouble ten times faster than LFA individuals. Witness what's happening now

The worst thing is, if I try to say that something hurts me, it might be easy for people to think I mean "hurts" in NT terms - offended, outraged, trying to point-score off other people, I think. They don't realise that it 'hurts' as in causing absolute panic, real physical brain pain from the overload, stops me functioning, can't care for my family or do my job, have to rely on autism support. If they don't realise what hurts people with an ASD or see some of the triggers, or realise that we do this catastrophic thinking/panicking thing, how can I help them understand that those same things might be ones that hurt their own children?

Would they recognise it if someone else did it to their child and got that reaction? Or would they think their child should just get over it? If so, I've done a rubbish job of trying to explain it, that's for sure. I don't know how to explain it any better than I do,which worries me a lot.

D**mn, I've used 'we' in that post. I mean we generally, but some people's experiences will vary

Do you know Amber, I offend people all the time, in rl and I am sure I do on here too.
I am not even very good at apologising, always mess that up too.
You do extremely well at explaining things.

Amber, I didn't see what lead up to this so I don't know what was said to you. If you are saying that verbal conflict/difficult questions can cause you physical pain then surely you should be isolating yourself from those situations. Perhaps communicating via other people who can filter it appropriately.

Whether it's online or a RL debate there will constantly be disagreement as that is the very nature of debate. I can hardly see how other people could avoid causing you problems even if they knew of your particular issues and of course in most cases they would not.

I hope this post doesn't cause you discomfort as I am only pointing out what seems to be a logical conclusion and perhaps I have misunderstood what you are saying.

i think loads and loads of people (me included) appreciate time and effort and insight that amber gives. thank you amber

May I generalise?

Well, theres's this Disability Discrimination Act, which is a law, that says that service providers including UK based websites, even free ones, have to make reasonable efforts to include us, rather than us have to leave.

It works like this, just for our reference:

Person A identifies that they have a disability and is, if necessary, able to prove the diagnosis. This is important.

Person B says something that causes Person A distress because of their disability, e.g. is rude about the disability, mocks it, spreads hatred about it or its characteristics in a malicious way rather than a way that is intended to get help and support for a genuine situation.

Person A explains their distress and how it makes them feel as a person with this disability.

If Person B actually apologises or rephrases or whatever else that solves the situation there and then, brilliant. That will solve about 99% of situations straight away.

If person B instead says (in effect) "Couldn't give a fig what happens to you, why should I have to take any notice of you, I have my right to express any opinion I like - I have to tread carefully round people at home and I don't want to do it here", then it may become a situation where Person A cannot reasonably access the service. Why? Because they are being put into a hostile or intimidating situation for that disability.

The service provider has to provide 'reasonable access', so if they are made aware of the problem, they need to seek to solve it in some reasonable way. Or there's anything up to a £30,000 fine for the company. The individual, if continuing to deliberately pursue someone with a disability in a harassing way, could also face police charges, and those charges would take the disability into account when upgrading it to an Aggravated Offence. It's actually all quite serious stuff. Not easy to get the courts or police to pay attention, but that's what the underlying laws say about service provision. It's the sort of advice I help organisations with.

So, no, it wouldn't be fair for either me or anyone else to have to leave mumsnet. And any sensible debate is absolutely fine. So is asking for support. So is expressing dismay or distress about a personal situation.

But if a person with a disability is asked to leave a service or forced to leave a service by the service provider because of their disability or behaviour caused by that disability, then that becomes a very illegal thing indeed (unless they are a danger to others).

Remember, this is all just me trying to answer the question of why I don't just leave mumsnet, not me threatening anything. I provide advice and information.

We would need to find a workable solution instead, which is what I'm trying to do.

Are we talking about being rude about the disability/mocking it? I thought your posts were explainig how you felt pain if someone disagreed with you or gave too much informataion too fast.

If others acting badly causes you problems then you should be protected from that. If (and this is the impression I got) you are saying that others acting normally upsets you, then that would be different.

Goodness me, people disagree with me all the time. I wouldn't worry about ordinary disagreement at all, no. Never have. From ds questioning my motherly skills (and don't they all from time to time in their own way) to dh disagreeing with me over all manner of pedantic things (never expect total agreement from two ASD adults), to staff disagreeing over the positioning of the new office equipment and people here and on message boards all over the place disagreeing about the general principles of autism.

Too much info too fast? No. I can find it really difficult to follow a verbal discussion, so will take someone with me if I think I will struggle. But here I can pace myself and read things at my own pace.

For me, the big triggers are often the unexpected ones - the ones that say (e.g.) "look at the lyrics of this song - I find them therapeutic" and the song says, for example

"All autistics are cr4p
They've all got the clap
Send them to hell
cos I think they smell".

Well, you get the idea .

No, I don't think that I have a career in writing song lyrics nor do I hold or promote any such set of views - it's just an example to illustrate the point.

That sort of totally unexpected totally negative stuff is awful to read and I have no way to protect myself until it's too late and I've already read it. Great if people can say, for example, "Warning - may offend". Then I'd know to avoid it. It's all a question of being reasonable and finding a way to coexist, yet allowing people to vent in any reasonable way about their personal situations if they need to.

I'd love to have a brain that could be reasoned with when there's that sort of emergency, but what I have is an overwired amygdala and no off-button, you see. It does it completely automatically and I don't get a choice about it until it's too late and it's already pressed the Big Red Panic Button. Not pleasant at all. Really, really does hurt.

I hope you do stay Amber. I like your posts.

I hope to be able to stay if I'm allowed to still - and thank you Bullet123 - I like yours too. Maybe if I get things wrong, people will just tell me, and it'll all work out ok? And if I panic, people will help again.

Have contacted different support service, used my various images to calm down, and taken two emergency tablets. It helps. Can't do it too often, though

Amber, please don't let a couple people get to you, i love reading your posts and they have helped me greatly with dd1, its great to hear things from a AS view and it helps me understand a lot about my daughters and my husband. By reading your threads i have become more considerate towards my husband (he has a lot of AS traits) and has helped me find the cause of many of dd2's melt downs.

Please don't leave

Please continue to support and give advice to us parents of AS/ASD children.

I hope you are ok.

Amber, I am very NT (according to that test thingy we all did a few weeks ago), have a degree in English, many years experience of managing people, and still I often read back my posts and think "why on earth did I write that?" after I've phrased something really badly.. We all get it wrong, I think you're one of the most articulate posters on MN, so please stop worrying about all of this.

Part of life is that not everyone will like you, or share your opinion. There is not one thing you can do to change that, and it is exhausting to keep trying.

You honestly have done nothing wrong. You are expressing your opinion of autism, and it has to be from your point of view - who else's can you write from? Please don't go anywhere, or we will all get very cross with you!!!

Gosh, I wish I could control it in that sort of way but it's a bit like someone with epilepsy finding themselves in a room with a strobe light unexpectedly and they have a fit as a result. They can't control it - they have to trust that people will warn them away from areas that are going to do it, or tell them to close their eyes in time, etc, or maybe use the service in a different room if it's impossible to move the strobe light. I don't think of it in terms of people getting to me, really - I can't work out who's who most of the time anyway - I just start to lose confidence in the surroundings, if that makes sense.

It's difficult being me because I'm stupidly trusting. And I have a default setting of "everyone is nice", which I guess is better than thinking "everyone is nasty" but it means I never have a clue who is really a nice person or not and I am so reliant on other people helping me with it.

So difficult to explain how our brains just press that 'panic button' and there's not a thing we can do to stop it.

I don't know if I'm ok - I feel a bit peculiar. OK, I'm often peculiar, but you probably know what I mean

Ooo, that last post was to Marne not to you kettlechip . You're right, but I have a brain that doesn't do common sense on account of how it doesn't have any. If someone disagrees, I always think that this is because there are facts I haven't learned yet, or things I have said wrongly, so I want to learn more and say things the right way.

Don't want people getting cross with me so in that case I'd better stay here!

You've had an awful lot to deal with lately, Amber. I'm not surprised you feel peculiar, I think any of us would.
Would a nice big cuppa help?

Have we got anything stronger? Drat, no, can't have a glass of anything on these tablets...Yes please, a nice big cuppa would be lovely for me and anyone else who needs one

Well nobody on here is nasty. It's just that everybody has different experiences and everybody wants the best for themselves and their children.

I would just add, that if I avoided everything that gave me stress or discomfort or anxiety, I'd probably just stay at home and not do anything at all (especially not go on MN ).

Amber, I usually try to stay away from this type of discussion. However, this thread of yours got me curious so I just had to read the other thread.

I believe you have brought to all of us a view of austism that no textbook could have ever accomplished, I have learnt so much from reading your posts. I hope you continue to contribute.

However, I really can see the point that the posters on the other thread were making. I have great respect for the honesty with which Davros explained her points. Hand in my heart, I do not think there is a need for you to aplogize for using the word "we". It's not about one word. I think the point Davros and others were trying to make is that since autism is such a vast spectrum your experiences and feelings may not correlate with that of other people. That is all. Sorry, I don't have a degree in english like kettlechip and english is not my first language, so I hope I have not caused any offence.

People that would prefer their children to be free from disability are not disablists.

That's why I was apologising - because I may have somehow misled people into thinking that I was amazing enough to be able to know the minds of every single autistic individual and represent every single viewpoint within my posts. I'm not, and I didn't think people would think that anyway. We all respond to each other's posts on here and lots of people use the word 'we' to mean a group, but without knowing every opinion in that group. Davros has done it in the past too.

No, people who would prefer not to have a child with a disability are not disablists in my view either. Did I say that in some way?

Hi Amber - I have only just found this

I dont think you need to apologise at all.
Tbh I think several (or maybe just one) person is reading way too much into some of your posts and over thinking them maybe, whilst also not reading them in the way you intend them at the same time - that sentance probably doesnt make sense.......

Anyway the point Im trying to make is I think a lot of us appreciate you on mn please dont feel got at.

I know its hard but try not to take what people say on MN personally - often people post before thinking about whether they should, about the effect their words might have on people

I felt really sad when I read that you had been awake since 3am worrying about what people think about you

Oh I haven't much of a clue what they think about me - no real theory of mind, which is a bit of a problem. But I worry that I'm getting things wrong and will end up causing people such problems that I have to leave my friends. I've been through so much these last months and mumsnet has kept me 'sane' and been such a place of support for me.

Oddly, I get a lot of support for me from sharing information with other people, y'see. But thank you Yurtgirl for your kindness too. As Bullet123 says, I don't think there's anyone nasty here, but I know that there are some in the world somewhere, and I'm a sitting target for them (as I found out with the hate mail incidents etc)(no they weren't from mumsnet people - it was a message board somewhere else whose people sent me some very frightening stuff). I think that's what I'm also worried about, maybe - that if I get it wrong enough, I'll find some more things like it again. At least I knew what they thought of me

Amber- dh is the opposite to you (he doesn't trust anyone and thinks everyone is nasty), i trust must people as i don't understand how anyone can be nasty but i often get let down by people .

Life would be a lot better if people were honest and told it how it is.

I hope you are ok and you carry on getting support from mumsnet. You are a great person, you have come far and you should be proud of yourself.