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an NT asking autistics what THEY want from us.....

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...what do YOU want to see neurotypicals do in society to help you adapt better , fit in, feel happy etc ?

what changes do YOU think will help do this?

I think you all deserve the chance to speak about this for yourselves rather than other people doing it, so individually and as a group what are changes you think are needed?

When people say, 'you must be mild' or 'I never would have guessed you have Aspergers', I feel like saying to them, 'well, what behaviour do you expect to see, and what should someone with Aspergers look like'?. I never say this, but maybe I should. THere is no such thing as a one-size-fits all standardized AS presentation. All presentations represent the spectrum that is autism, and as Someone points out, AS is an 'invisible' disability because it mostly concerns thought processes, perceptions, consequent anxiety and information processing differences. Some people with AS manifest in a more 'obvious' way, as exhibited in unsual mannerisms and voice intonation, but there are an equal number of people with AS whose condition is camouflaged and who on first impression do not seem that different, myself being one of them. But if someone could really see the constant anxiety I face every day, the obsessions, uncertainties, organizational problems, difficulty securing employment and making friends, they would hardly call my condition 'mild'.

longman wrote:

Its what I was afraid of - some University URLs, while being traceable by searching, cannot be repeated - security I guess.  Finding your way through the menu is equally tricky, but you might get there just by using their search option.

If you go to Bournemouth University's web page www.bournemouth.ac.uk - I took the "staff" option (top right hand corner of the home page) though I think this can be accessed as a student. I'm just surprised their staff pages are accessible to students.On the page this opens, scroll down to and click on "Academic Support". (I bet there are several routes to this page).

Under Academic Support chose "Disability Support". Top left of this page is a list of options. I took the "staff" one again. This got me a page "Academic Support - Disability Support"

On of the options in the list of four in the middle of the page "Academic Support - Disability Support", the third one, is "understanding additional learning needs and disabilities". Click on that.

This gives you a page with a list of disabilities. The top one is "aspergers".  Click on that and you get what I was on about.

Confused?  I bet you are. Lots of Universities tell students they can find the information they want on the University web pages. Patently not. Its easy to quote a web page to a student. It is really a hard search for most students to find anything useful, and this sequence proves it.

Having got there though, this is one of the best on-line advice services for staff on how to support disabled students. However the reason I flagged it up is it still must leave teaching staff nonplussed. It really isn't that easy a read!

And it may be quite a revelation for people on the spectrum, how teaching staff are told to regard us.

Got it!  As you say, it wasn't easy to find and I probably wouldn't have done it without your guidance. Thank you.

I've only had time for a quick glance through but I've printed it out so I can read it at leisure. 

longman wrote:

It is sometimes interesting to see how organisations perceive they should address our needs. I found this in a general search on the web and the url may be incorrect, but it should be possible to access via the Bournemouth University staff section http://www.bournemouth.ac.uk/disability_support/staff/asperger.html 

By the standards of most universities this is an amazing amount of information, and while a lot of it is clinical and "text-booky" it is very appropriate advice for the most part. At the end there are fact sheets for how staff should approach students on the spectrum. I feel slightly like a zoo animal reading the public notice on the outside of the cage!

But if you can access this, one way or the other, this is what university staff are being told about how to deal with students with AS.  It is fairly similar to what most universities are doing even if most don't set it out in as much detail on their websites.

Also, although the context is university students, read it as a guide to people on the spectrum generally.

How comfortable are you with what is being said?

I've now had an opportunity to read it and I have no problems with it.  I feel it sets out very clearly how AS affects people and they 'nailed' the term 'mild autism' when they said "this is misleading and can undervalue the significance of the diagnosis.  There is nothing mild about the impact of AS.  The impacts are considerable and permeate almost every aspect of life ....  Exactly the point Hope made recently.

There is also reference to Anxiety and Phobias: People with AS are often nervous and anxious of any change in their lives;  they can also be unnaturally afraid of quite ordinary things.

Depression: People with AS can become depressed about their lack of a social life, their inability to function independently, or if they feel rejected by protential friends or emplyees.

PEOPLE WITH AS DO NOT LIKE CHANGE.  THEY LIKE 'SAMENESS'. 

I thought  the Fact Sheets were excellent.  They didn't make me feel like a zoo animal reading the public notice outside the cage - just grateful that someone not only understood my problems but was prepared to accommodate them.

 

some one wrote:

Goatworshiper wrote:

I've learned to deal with touchy feely people (I some times work with Drama lovies (I hate them)) by telling them there touching the wrong part of me. That makes them feel uncomfortable and then the touchy feely stuff goes.

The behind the back thing I still struggle with. Because I'm a grump I make it known to people that if my life is made difficult, I will make others lives difficult, however I have stronger willpower than most. As harsh as this is it avoids a lot of confrontation and I get on with people better for letting it known I won't tolerate. 

Emmotional/Irrational stuff is odd. I don't mind people crying or being upset. I think it's people telling me how I feel about stuff I don't like. For instance people saying "you said x and therefore you feel y", and Im more of a x means x and y means y. I'am not very romantic, but that's because I'm not romantic, It doesn't mean I don't love you etc. 

My mum does my head in with emotional stuff. She refuses to accept objectivity. She fat and cries if a doctor says she's obese. Where I see obese as a clinical definition of someone who is overweight by a certain proportion. 

When/if I get a diagnosis I might start being open with people which might help some of this stuff.

i have to say i did giggle at your comment about your mum,

i understand your reasons and you have a valid point, but i also understand hers,

being told you are fat (to a fat person, or to a woman) is like being told you are worthless and usless, because usually YOU made you fat and most people know that, but most also dont like being made to feel THEY could have done something about it

also, you might have noticed, most nts dont really like 'the truth', for different reasons

many people cant handle the truth and objectivity of autism, sometimes even the autistic persons family and ESPECIALLY when its about them

you can try talking to her about it, ask her 'mum what is it that upsets you about this? do you want to be healthy? i will help you do that but i dont understand why you get upset when we talk about what it is that you need help with', listen to what she says about it (even if it seems irrational or like it doesnt make sense )

try to make it less personal and less her fault,speak about it to her like 'its a problem and we can change that' 

we nts respond better to facts and truth IF they come along with support, help and some nice things like 'i love you mum, i want you to be healthy, happy' etc

hehehe "touching the wrong part of me" at least it works for you

it is harsh, but i understand it, being with an autistic partner for 12 years ive learned to see things that way too, i can totally understand why you think that and if it works then again thats the point

the 'it doesnt mean i dont love you' i know that one well, i will just end on, i know, and i think many other people with autistic family and partners will know too, you will find someone who accepts that part

TBH with mum I try not to offer an opinion unless pushed. Mum is very emotionally immature, she fixates on demonises people she doesnt like at that point in time for very petty reasons. I just talk about football over the top and that diverts. My mum is always right (if you know what I mean).

I kind of make up for romance with planning. So I might not be too good for flowers, but I'm pretty good at booking a hot air balloon ride for two for a special birthday. 

different

It would be a start if it was well endorsed that the Neurotypical perspective was not introduced as the all seeing all being point of view and that the theory of mind is debunked as a best guess that is fraut with pifalls at the best of times, Nt international travelers and adventurers have to dipense with a great deal of assumtive attitudes but this culture seems entrenched in it's own self possed uninformed concreted attitude that monotropic is an impairment, it is not, I grant you it is well different and taking things litterally is not a recipe for a quick giggle but when you get the hang of it it is an avenue to greater generosity, understanding and appreciation of most things as a direct consequence of its presence.

It lends itself to easy resolution and perpetuates a general persuit of greater values and investment in positivity. It also adresses the issues of bullying easily as it is not a perspective that is easily toyed with or manipulated and lends itself towards apppreciation of others views with a greater security as an immediate byproduct.

I am left head scratching with dismay and missery at the persistant poor attitude and dissenfranchising promotions that are a pervasive facet of Neurotypical investment in the notion of the ability to operate with the myth that is the theory of mind.

As for Mr Abbotts assertion that when you have met one Autistic you have met one Autistic, I am incensed that this is so easily adopted without much challenge, what rot, there are a tremendous number of binary markers that are the common feature of the monotropic cosmology. After all the effort we go to and are demanded of us to achieve and learn to understand the common NT demands of life and society this seperating default is such a lasy view and as a person who is almost obsessively consumed with patterning and its connectivity there is no doubt in my experience of the vast number of comonalities that connect us as a community. Regardless of the degree of autism or associated conditions we experience I can see a thread of consistent shared factors and the term monotropic cosmology is a fine address as a frame work for a way of viewing the world, has the world bothered to pass beyond what quantifies professional name calling and actually learn our language and terminologies, No. Has any one passed beyond the "we don't realy understand" position and ventured towards an antropology of Autistics, No were that I was able to find some one to teach me to be an anthropologist, I would write such a wonder and have no doubt that it would foster a far greater appreciation of just what a fantastic bunch of optomistic, steadfast, hard working and patient people we are, contrary to popular oppinion. whilst we are measured by the neurotypical and heirarchical benchmark that invests in better than and more as a driver, without consideration of the context in which we are measured and have to function. We suffer because you refusse to recognise your own suffering, not because we suffer persea.

The assumption of a supremis attitude and right of authority is obtuse at best and often quantifies the level of indifference that it is easy to operate when faced with a whole world view of things. If you are a  world traveler and have a love of different culture then I think you may well be better equiped to begin the endevour of befriending an autistic than some people who have spent a deal of time in a class room with many a book on the subject.

WB

The datum by which the whole of our society is measured is what our health is asking to be moved and the health of the many will I believe be served by the needs and deserved plee of the few. But it is an antithasis to the corperate and consumtive directives of a society based on capitalism with money as the measure of quality or life itself.

 

Hope wrote:

When people say, 'you must be mild' or 'I never would have guessed you have Aspergers', I feel like saying to them, 'well, what behaviour do you expect to see, and what should someone with Aspergers look like'?.

if someone could really see the constant anxiety I face every day, the obsessions, uncertainties, organizational problems, difficulty securing employment and making friends, they would hardly call my condition 'mild'.

my partner has the same comments, all the time, it is a bit irritating to hear but its easily passed over because its lack of understanding of what autism is, and i cant complain as i had that ignorance myself before we learned he has it

its the government, and autistic authorites, place to educate society about these issues (as well as peoples OWN responsbility to do it themselves)

yes exactly, i know what my partner goes through, on the outside he 'looks fine' inside, its a different matter , and a lot of autistics dont or cant express how they feel the same way its 'expected' by society so its rarely noticible

pain is another one, a lot of autistics, and my partner included, have an ability to deal with pain and not say a word about it, you wouldnt know they had any problem, he broke his finger once and didnt know till he visited the doc months later, (this is just one example of many)

Wolfbear wrote:

It would be a start if it was well endorsed that the Neurotypical perspective was not introduced as the all seeing all being point of view and that the theory of mind is debunked as a best guess that is fraut with pifalls at the best of times,

  ...but this culture seems entrenched in it's own self possed uninformed concreted attitude that monotropic is an impairment, it is not,

I grant you it is well different and taking things litterally is not a recipe for a quick giggle but when you get the hang of it it is an avenue to greater generosity, understanding and appreciation of most things as a direct consequence of its presence.

..It lends itself to easy resolution and perpetuates a general persuit of greater values and investment in positivity. It also adresses the issues of bullying easily

..I am left head scratching with dismay and missery at the persistant poor attitude and dissenfranchising promotions that are a pervasive facet of Neurotypical investment in the notion of the ability to operate with the myth that is the theory of mind.

..Regardless of the degree of autism or associated conditions we experience I can see a thread of consistent shared factors and the term monotropic cosmology is a fine address as a frame work for a way of viewing the world, has the world bothered to pass beyond what quantifies professional name calling and actually learn our language and terminologies, No.

 a fantastic bunch of optomistic, steadfast, hard working and patient people we are,

...The assumption of a supremis attitude and right of authority is obtuse at best and often quantifies the level of indifference that it is easy to operate when faced with a whole world view of things. If you are a  world traveler and have a love of different culture then I think you may well be better equiped to begin the endevour of befriending an autistic than some people who have spent a deal of time in a class room with many a book on the subject.

WB

The datum by which the whole of our society is measured is what our health is asking to be moved and the health of the many will I believe be served by the needs and deserved plee of the few. But it is an antithasis to the corperate and consumtive directives of a society based on capitalism with money as the measure of quality or life itself.

 

and you even mention capitalism 

i agree with you completely, to me its capitalism, that really took out our human intelligence and replaced it with greed and selfishness and that comes along with this lack of ability to see anything other than our own views/needs

aside from that, i like the fact you bring up the positives about autism, its very rare, there are so many people trying to 'cure' it, and talk about 'changing/adapting the behaviours, making them 'fit in'  that we ignore the brilliant parts of it and jus thow  much autism and autistics have actually made our society

nts have learned to be quite selfish and small minded, its not all our 'fault' tho its the world we are in, but i think it is a problem that needs to be dealt with, and as i said, i think the government and autistic authorities are the people who 'should be doing that

 

I think we need to be careful about typecasting, for people with aspergers are just as capable of being greedy and selfish as are so called 'neurotypicals'. Likewise, neurotypicals can be caring, sympathetic, generous and accepting. We are really all individuals, first and foremost, although  we share a label and by definition have a great deal in common. But we must not let our shared experiences and commonalities obscure our unique aspects. It is a glib statement, but it is true that no two people with AS are the same. Sometimes I might have more in common with a non-autistic person than I do with someone who has AS.

As someone who was diagnosed very late, I have two feet in two different places, the non-autistic world and the autistic world. I have never received special education, or even special treatment until I got diagnosed with AS. I have always experienced mainstream life and have learnt to adapt and fit in. This has come at a price, namely knocks to my self-esteem, but I have regained my confidence and self-esteem since my diagnosis. Knowing the reason why I have had certain difficulties with friendship, conversation, practical tasks, organization, anxieties etc, was the most fruitful aspect of my diagnosis. But I still have my foot firmly in the mainstream world and am happy in both worlds: the autistic and mainstream. I will never define myself by my label, but I like the reassurance that comes from being part of a community of autistic individuals. I come here for security. However, I also seek identity in the non-autistic world too - I am split in two!.

I agree about the negative aspects of Capitalism. The biggest problem in life is a cold utilititarian logic that reduces everything to money and relative value.