Upsetting People

[CarolJ]

Ooooh, Carol...you won't know, but I was dx'd with AS last summer!!

 

Well i remember you scoring very highly on the online cambridge autism research unit test! Well done for getting dx and finding a bit more out about yourself!

 

Carol, I agree to a certain point that as advocates for our children we have to stop worrying about 'upsetting people' so that we can get then the provision they deserve.

 

BUT,BUT,BUT...I think that there is a very real danger that if this comes across as 'aggressive' rather than 'assertive', this doesn't help our kids and can even end up in some really awful situations.

 

Now, for the burbley bit!! Now that I'm working, and I think the same is true for Mumble in her academic world (tell me if I'm wrong, M ), I want and need support for my AS. But not 'support' that ultimately disempowers me by reducing me to a position where there are no expectations that I can function and compete on a level with the NT world.

 

In other words, I would rather be given strategies, behaviour I can model and explanations I can understand rather than an attitude that says 'well, everyone else needs to understand AS and make allowances accordingly'.

 

This won't help me at all, actually. What does help me, both to compete and to 'grow' in ability and confidence, is to have good, effective 'NT' communication skills explained (even if the explanation is ultimately, sorry, it's illogical, but you just have to accept that's how the NT world functions) and most importantly presented so that I can then model them in my own interaction with the people I work with.

 

I am lucky in that I have a fantastic line manager, and I am getting better at being a team leader because I consciously think all the time 'How would X deal with this', when I'm having to sort out staff problems, etc, and I model my behaviour and how I say things on her (grammar left the building, sorry!).

 

I know that some people with AS, and people who support them, parents, etc, feel strongly that we spectrum peeps 'shouldn't have to do this', it should be the NT world that changes to accommodate us. To a degree, I think this is true, the attitude to ASD does need to change, but not to one where disabling collusion replaces true support and acceptance. After all, parents struggle with toileting, because for their child to be able to 'conform' to NT expectations as far as this goes, is actually more empowering for them, even if it goes against their innate autistic imperative.

 

Phew, don't know if any of this makes sense, and as ever, it's only my opinion/experience as an autistic person who feels they are finally getting somewhere in the NT world after 40 odd years of largely failing.

 

Bid

 

Bid I agree that assertiveness and agressiveness can be confused - its not about riding roughshod over others feelings. I am blessed with high emotional Intelligence which allows me to strike a good balance and know how to deal with people. I always apologise beforehand when I state a point but I explain that I really have to be clear in what it is I want and also like to make sure I am agreeing to any points made.

 

I find straight talking refreshing. Its about knowing when the boundaries are crossed into rudeness and unfortunately many with AS struggle with this. My daughter and fella typically come out with some choice statements. But because I am aware of thier AS I am obligated to try and help them understand the impact of their words or actions.

 

I find that some people really cannot deal with straight talking even when its done in a non-aggressiveway. But havign to stop and think about everything you say and do is soul destroying and can make someone with AS anxious. I think guidance and understanding is the key. I agree that sometimes people with AS can place themselves in danger by upsetting the wrong person. But if someone is aware, ie disability support worker, of the AS why on earth is behaving like this? I really feel for mumble as I have seen the same confusion on my Daughters face. I have said to her have the courage to be true to herself. By learning from those my daughtertrusts shes able to avoid repeating the mistakes in teh future its part of learning how to deal with this world she lives in. Which is why whatever it is that mumble has done he has the right to be told so that he wont repeat it again.

 

Yes your words made perfect sense i bow to your wisdom

 

 

hugs x

[Mumble]

Now that I'm working, and I think the same is true for Mumble in her academic world (tell me if I'm wrong, M ), I want and need support for my AS. But not 'support' that ultimately disempowers me by reducing me to a position where there are no expectations that I can function and compete on a level with the NT world . . . the attitude to ASD does need to change, but not to one where disabling collusion replaces true support and acceptance.

 

:clap: :clap: (hmm, must work on this excited fast clapping thing - anyone else do that? )

 

With your permission Bid, can I quote the above? It explains what I need in a few words when I have a tendency to use lots of words!

[bid]

Oooh, blumey...I've come over all blushing!!

 

Of course you can use my quote (fee in the post, in guineas natch ).

 

Bid <'>

 

As for the clapping...er, yerse, to such a degree that one night I realise I had 'infected' my colleagues and we were all sitting there clapping and squealing over something or other

Edited February 3, 2008 by bid

[CarolJ]

oops sorry mumble I just realised you are a "she" not a "he" - sorry <'>

 

I must say you definitely appear to be a "chip off the block" - notice i left out the "old" there bid?.

 

Good luck xx

 

BUT,BUT,BUT...I think that there is a very real danger that if this comes across as 'aggressive' rather than 'assertive', this doesn't help our kids and can even end up in some really awful situations.

 

Bid can I give you an example of where I had to be direct. Last week my daughter had a problem with a boy with autism picking on her at school. She goes to a SEN school for moderate difficulties. My daughter has told me in the past that her teacher "confuses" her. She rambles on using a lot of langauge and my daughter cant take it all in. She gets very stressed example last week the school had an inset day on a Tuesday which we knew about but the teacher had said to the class on the friday "see you all wednesday". My daughter thought that meant that she wasnt to go into school until wednedsday and we had a big fight monday morning to get her to go to school. She said she wasnt supposed to go into school and really started getting into a meltdown. In the end I had to phone the school and ask if they were coming in on the Monday.

 

I had to say to my daughters teacher that her way of speaking directly caused confusion in my daughter and she was to slow down and use less language and be more direct. I didnt enjoy saying this but I had to be honest with the teacher and tell her what was happening because my daughter really didnt like her teacher very much. She also doesnt appear tolisten very well and cuts you off when you are speaking. I had a choice did I allow my duaghter tosuffer and be unhappy which would affect her education or did I explain to the teacher what the problem was.

 

The teacher asked my duaghter why she didnt tell her at the time she was being bullied,and I had to explain to the teacher about fight or flee response. when someone comes up to you in your face and verbally abuses you for no reason you dont always react rationally plus my daughter didnt want to show emotion and that she was upset to this boy. The teacher coldnt understand why my daughter couldnt go and find a teacher. I had to explain that part of my daughters problem is communication she struggles tofind the right words and it gets worse when she was upset. And shes not very good at judging when she can interrupt someone especially an adult. I suggested to to my daughter that she write down on a bit of paper when she gets back to the class if there are any incidents and to pass it to her teacher. I have found that shes able to write things down that upset her rather than talk about them. Which my daughter seemed happier with. I found that her teacher was not very tolerant of my daughter not being able to verbally express what had happened and Ihad to say to teacher well its my daughters way and the way she is affected by her AS, just because you expect her to do something a certain way doesnt mean she will do it.

 

This is the example of the straight talking Bid, a choice between my daughter's happiness and her teachers feelings, I really had to be honest. I dont enjoy it but I have found it necessary and unless someone is aware of how they affect others how can it get better?

Edited February 4, 2008 by CarolJ

[Mumble]

I am absolutely fuming and really upset. I get angry sometimes, but not like this where I could quite happily go to this woman's office and tell her exactly what I think. Clearly she's read the 'I exist' campaign and taken the figures as guidance on how I should be treated - ignored, isolated and thought of as nothing more than a burden on society.

 

I love what I am doing so much and I want to be successful in my field - I want a career, I want to live independently and I want to be accepted. I don't want to be thought of as a burden to anyone - all I'm asking for is some support to allow me to compete equally with my peers - and this is what I have been assessed as needing and what I had assumed had been agreed.

 

But all this stupid woman seems to think is that I'm a financial burden and a burden on her time - that's why she's not communicating because I take up too much time and I'm too much trouble. I finally get some communication and she's just trying to blind me with figures and how I'm too expensive. I really don't want to be thought of as trouble - I just want a chance to achieve what I am capable of achieving.

 

So what do I do to avoid this situation with others - not exist? Curl up in a ball and die so she or anyone else doesn't have to bother with me anymore? I don't think I can cope with being thought of as trouble and bother.

[pearl]

So .... you didnt upset her then, Mumble? Basically, she just can't be *rsed? Then she is failing in her responsibility. The cost & time are not your problem. She is there as part of your reasonable adjustment, I think its time to mention the dreaded words Disability Discrimination to her line manager.

I'll have to go as I'm at work, but I'd be fuming too. Well, I am! <'>

[Mumble]

So .... you didnt upset her then, Mumble? Basically, she just can't be *rsed?

I upset her because of who I am and my needs. If I didn't exist she could continue in her merry way. I upset her by existing.

[Guest Lya of the Nox]

<'>

not good that is is how she is but at least you did not upset her

DO NOT curl up in a ball and want not to exist, you dont need to you have worked way too hard to get to where you are

have a rant a scream some choccy

lvs

x

[bid]

 

While it is still all fresh in your mind, write down this woman's comments to you.

 

Then I think you need to contact the Disability Rights Commission.

 

<'> <'>

 

Bid

[Karen A]

<'> <'> Mumble.I think it is worth making a written complaint to her line manager.That is not just disability discrimination it is also verbal bullying to say things like that to you.Karen.

[llisa32]

Hi Mumble <'>

 

Can't believe the lazy so an so can't be bothered to do anything for months and then tells you you're too expensive!!

 

Where's the money going?? gold plated cups of tea and belgium chocs for her?? - unbelievable!!

 

I think you need to escalate to her manager if you know who that is, and make sure you cc your tut and yr sup

 

If you need someone to call her or act on yr behalf I am well up for it! Let the battle commence!

 

And don't whatever you do think this has anything to do with you being 'not worthy' or being a burden etc - you are not...you are simply asking to have your needs met - as agreed by those that should know.

 

It is really not her place to question any of that, if she hasn't got enough money thats not yr problem - it's hers!!

 

I have every admiration for the way you keep going to be honest <'> you are faced with muppets like this on a pretty regular basis lately, yet you move forward and carry on - so huge well done! <'>

 

Don't let the muppets win!

[CarolJ]

But all this stupid woman seems to think is that I'm a financial burden and a burden on her time - that's why she's not communicating because I take up too much time and I'm too much trouble. I finally get some communication and she's just trying to blind me with figures and how I'm too expensive. I really don't want to be thought of as trouble - I just want a chance to achieve what I am capable of achieving.

 

So what do I do to avoid this situation with others - not exist? Curl up in a ball and die so she or anyone else doesn't have to bother with me anymore? I don't think I can cope with being thought of as trouble and bother.

 

Mumble sweetheart I come across people like this all the time in the "support" services. Look at it this way you "love" what you do and "want" to do well all you need is support which is what this person is there to do but perhaps to her this is a "job" a means of paying her bills, rather than a "vocation". Some put 100 per cent. into what they do others, do the least possible in order to get by and you can clearly see the difference in their atttiude. My son who is non verbal can pick out a "do be" a mile off he knows when someone is truly interested in him. He is a brilliant judge of character. Mumble dont allow this womans laziness to upset you. Go to her superiors and tell them how she is treating you and if you need to quote Disability Discrimination Act - that always seems to prompt a reaction. Ask if its possible to change your support worker?

 

What she is doing to you is trying to make you feel like a burden. As a parent I have come across this attitude numerous times. Its the standard "you are asking for too much" quoting words like "Budgets" "figures" "financial targets" approach making you feel like a drain and a burden which is wrong. Basically making you feel as if you are asking for far too much and are greedy!!

 

If it werent for people like you Mumble this woman wouldnt have a job so really she ought to be more appreciative of the fact that you are using her services. You need her support as a means to an end in order to qualify and go on to have a rewarding career you are asking for help in order to give something back.

 

It really makes me angry when I come across "do bes" like this, if you were not so determined her attitude and others like her would probably influence you to give up and think "whats the point?". I admire you for having the guts to keep on despite this "do be". And I can picture Bid saying "thats my girl " and will do all she can to support you. We are all behind you on this one.

 

People like this dont realise the effect they can have on a young person be they neurotypical or autistic. Attitudes like this can kill a young persons ambition. It happened to me too when I was younger. I wanted to work for NASA as a rocket sicentist but the careers adviser told me to take a secretarial course instead seriously though I didnt end up what I wanted to do do and lived to regret not sticking to my guns so I admire your spirit Mumble.

 

You go Girlfriend

 

p.s. dont you dare curl up in a ball and die or I shall ask bid to kick you!!! How many others have given up because of this "do be's" attitude? Dont allow people like her to make you feel less of a person because you have asked for the help you were assessed as needing. Grrrrr! You are worth 10 of this "do be" dont allow this woman to use your AS against you. I am going to stop now becaue what I want to really say would get me banned. So dont you dare go giving up or thinking like that. You will come across people like this throughout your life you are your own person dont ever stop fighting for what you want.....any volunteers for an "angry mob?" ability to set buildings alight and to shake fist a must - i will supply pitchforks and torches? puts in addy of "do be" into SatNav....

Edited February 6, 2008 by CarolJ