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ASPartOfMe
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25 May 2014, 4:18 am

If it ever was a wannabe diagnosis (which is what the thread is really about) following the elimination or the coming elimination of Aspergers diagnoses, Adam Lanza, the Glasgow study, and Elliot Rodger it sure is not cool now.

The question now is will there be overdiagnosis to segregate "undesirables" or under-diagnosis because people do not want to be associated with spree killers?

Is for the disability vs difference thing I have discussed the reasons why it has been both for me many times (not black and white thinking, Am I not really Autistic? :wink: ) . Even though I find some in in the "neurodiversity" movement "shiny Aspies" and some of their views ableist I am glad it happened and still is happening. First of all I probably would never have been diagnosed at age 55 without the awareness that there can be autism that is not as inhibiting/severe as thought when I was growing up. I have been Mr. Pessimist my whole life while it added some realism it hurt my life also. While I am by no means Mr. Optimist but I have a more balanced and accepting view of my "traits" because of reading about the neurodiverse view. I don't know what the future holds but the neurodiverse movement has made my life considerably better now.

Probably what could solve a lot of this would be to split Aspergers in half. There should be Aspergers-Condition whose impairments over their life have been "mild" enough to have very high to near average functioning most of their lives, whose differences have helped as much as they hurt but who still have had some effects from at least 2 of the 3 triad of impairments. There should be Aspergers-Autism for those with more significant impairments but still in the "High Functioning/milder impairments" area. This is just a rough draft type idea.


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“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


Last edited by ASPartOfMe on 25 May 2014, 5:00 am, edited 1 time in total.

ASPartOfMe
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25 May 2014, 4:58 am

JerryM wrote:
And as far as disability/difference goes, the way I look at it is "disabled" means you CAN'T do something. Someone who lost their legs is disabled, cause they can't walk. Someone who is blind in one eye is disabled cause they can't use it. With ASD, you can still do everything an NT can do, though you'll face obstacles along the way. But you can still do it (though I really don't care if you call me disabled or different, those are just my views).


Everything? Not really.


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DSM 5: Autism Spectrum Disorder, DSM IV: Aspergers Moderate Severity

“My autism is not a superpower. It also isn’t some kind of god-forsaken, endless fountain of suffering inflicted on my family. It’s just part of who I am as a person”. - Sara Luterman


foxfield
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25 May 2014, 5:31 am

I think all you "Its a disability not a difference" people need to get some perspective.

Quote:
More than a billion people live with less than a dollar per day.
2.8 billion people, that is to say almost half of the global population, live with less than 2 dollars per day.
448 million children are underweight.
876 million adults are illiterate, two thirds of which are women.
Every day, 30,000 children under 5 die from avoidable diseases.
More than a billion people don?t have access to healthy water.
20% of the global population have 90% of the wealth.


(From this link)

Yes, maybe having Aspergers does make your life difficult in comparison to some of the other over-privileged people who surround you, and yes some people have worse AS than others... but why do you expect anyone to care? There are much worse things happening on this planet you know.

When you get some perspective, trying to find an exact dividing line between "those who are just a bit quirky" and "those who have real problems" all becomes a bit ridiculous don't you think.

If some people here are seeing the positives of having AS like traits, and are making it work for them in their lives, then good for them. I'm extremely interested to hear their perspective as well as experiences from the other end of the spectrum.



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25 May 2014, 5:37 am

It is a matter of perception and point of view, for some people everything associated with autism is negative, it is their right to feel the way they do, but personally I simply do not think that every trait associated with autism is negative, nor that autism as a whole is a disability by itself, eventho some people have more disabling difficulties because of it.

The spectrum is indeed very large, from very low functioning to high functioning (its not a "trend", its a fact), but the fact that some have less disabling issues than others, doesn't mean that they don't have disabilities or difficulties, nor that their issues should be trivialised or "shrugged off", because it doesn't mean that they are not serious and causing serious problems in their life. Refusing to acknowledge these people doesn't make the facts nor their issues less important or serious, nor does it help anyone.

Temple Grandin has Aspergers, but she was lucky enough to have a mother who was very persistent and refused to institutionalise her. She now has a Master's degree (even a doctoral degree) and her inventions are invaluable and unique. Without her autism none of her inventions would exist because in addition to her intelligence, it is her perception of the world around her, due to autism, that has allowed her to understand things that neurotypical people don't. And I think this applies to many inventions and inventors, also to many others in other areas.

Short articles and a video with Temple Grandin:

Article: http://www.usatoday.com/story/news/nati ... n/2122455/

Article and video: http://www.cbsnews.com/news/temple-gran ... ng-autism/


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25 May 2014, 5:41 am

This is an interesting topic, I think I am someone that would fall into that borderline area that people would be skeptical of, I had friends at school, I never had meltdowns over routines, I have a job etc from the outside it probably seems i'm fairly normal if lacking a little in confidence. But on the inside their is considerable turmoil and anxiety, i've basically struggled constantly since my early teens. I never even considered autism/aspergers because I had a lot of preconceptions about it, but after exploring various alternatives (personality disorders etc.) I started to read a bit about it and it really was a moment of recognition, it brought everything into focus and drew together so many experiences and difficulties. I read the Tony Attwood book, and came across so many things I had already put into words myself, or read in school reports and work appraisal, or had people say to me. I know I have difficulties in all the areas of impairment, but it was reading about all the other things that I thought were just my quirks that convinced me.

I was nervous about getting diagnosed because I felt like a bit of a faker, like my traits weren't strong enough I just want an excuse for my failings. But I did get diagnosed at the beginning of this month (ASD I don't know if it is the same across the rest of the UK but the place I went do not diagnose Aspergers anymore) and just knowing has been hugely beneficial to me.

I guess what I am trying to say is that just because a person's traits are relatively mild does not mean the overall effect is mild. If severely affected and mildly affected people's difficulties have the same roots then it makes sense to group it all together as ASD for the condition to be fully understood (with the severity levels used by DSM being a good way to distinguish between levels of impairment) restricting the label to just the most severly affected would cut people like me, who do struggle and need support, adrift. They could come up with some separate classification but if it has the same underlying cause then that would seem artificial to me, I think the 'spectrum' concept is accurate, and level of support needed can be defined within it.

Having said that, when I come across youtube videos where self diagnosed people talk like they are an authority, it does annoy me a little, i'm not doubting they have it I just think people should at least try and get it confirmed before they talk with such certainty. I understand this is more difficult in some countries and there are good reasons not to, but there are informal options.



MrGrumpy
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25 May 2014, 7:22 am

Here is a link to a piece which appeared in the London Times about a month ago. I think it is a very good example of a professional journalist trying to appear cool and trendy about something she has no real idea about - personally, I think the article is completely made up. Check out the author's own website to find out a bit more about her.

http://www.thetimes.co.uk/tto/life/rela ... 067289.ece

http://nichihodgson.com/



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25 May 2014, 7:26 am

Its very trendy, who doesnt want a life full of problems, trouble and misery.

Trendy certainly is not the word i would use.

Here you get looked down on like a loser if you have mental trouble, because most people dont understand it. Aspergers, autism and so forth, it either you are lazy or you are a ret*d kind of view. So you certainly dont get ahead in life.

There is a reason the nr rule if you want a job is never EVER talk and tell them about stuff like this, you will never get a job here. It doesnt help with all the stuff that happens, that some people think that you might be a lose cannon who might go on a killing spree or something. Its kinda scary actually.

That its always brought up that these people have aspergers, autism or something, when that alone does not a killer make, far from it.



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25 May 2014, 7:38 am

As I've said before, people here in Australia don't associate it with killers.

The people at work know I have it. They know it allows me to just sit there and work for 8 or more hours straight without the need to take a break or sit around chit chatting.
They know I can program like a machine and that I'm very intelligent. They were telling me before I told them I have AS and they still tell me. Now, they just think it's because I have AS. I'd like to think I've just always been intelligent... I can also be incredibly dumb and naive as well. It's a conundrum!


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25 May 2014, 7:44 am

If the gifts I have are due to me having AS, well then I'm happy about that but it also brings with it a LOT of other troubles I wouldn't wish on anybody.

It's certainly not trendy in my eyes but it's not totally devoid of any benefits or advantages either and I think, those who may feel it is (or was) trendy to have AS probably didn't really have it. They were probably last seasons emos back when that was trendy (or pirates, or vampires or wizards or whatever's trendy at the time).


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CJH123
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25 May 2014, 8:24 am

The thing that we have to remember though is AS makes us well us it's apart of our personality and if we did not have it then we would not be who we are.



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25 May 2014, 9:11 am

A general theme has emerged from this thread. For some Aspies (not all), AS itself is not at all the hindrance. Instead, it's how AS is perceived by influential outsiders. For this reason, disclosure may be really tenuous because we are then placed in a position of vulnerability. The person to whom it was disclosed can then wreck havoc, even if unintentionally. Lack of acceptance, even fear on the part of outsiders, can be the real 'disability.'


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25 May 2014, 9:25 am

LabPet wrote:
A general theme has emerged from this thread. For some Aspies (not all), AS itself is not at all the hindrance. Instead, it's how AS is perceived by influential outsiders. For this reason, disclosure may be really tenuous because we are then placed in a position of vulnerability. The person to whom it was disclosed can then wreck havoc, even if unintentionally. Lack of acceptance, even fear on the part of outsiders, can be the real 'disability.'


^^ Very wise words indeed!



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25 May 2014, 9:27 am

LabPet wrote:
A general theme has emerged from this thread. For some Aspies (not all), AS itself is not at all the hindrance. Instead, it's how AS is perceived by influential outsiders. For this reason, disclosure may be really tenuous because we are then placed in a position of vulnerability. The person to whom it was disclosed can then wreck havoc, even if unintentionally. Lack of acceptance, even fear on the part of outsiders, can be the real 'disability.'



I think the disability is not really accurately perceiving certain kinds of social information this results in misunderstanding other people's motivations and the intent of their actions. It also means a problem in gauging how our own actions are likely to be perceived and little error correction in that process because feedback from the people we are with is misread.

It would be great if people made infinite allowance for it, but it isn't reasonable or practical to demand it and the problem is really, truly in our brains not their response to us.

As for trendy, I see people say it but I don't believe it. There might be some people who want any excuse to think they are "special" but I never met anyone who wanted to be bad a communicating with other people and never really be a part of any community.

My wife asked me to go with her to a mutual friends birthday bash the other night. I went and stood around and nobody talked to me and I didn't talk to anyone, beyond wishing the guy happy birthday and non-verbally greeting a few ot the people I knew there. All these people were talking but it was like being a human on beach covered in gulls. They were all making sounds that meant nothing and their group behavior meant nothing and I was really more like the furniture there than one of them. I was glad I made myself go because the people I greeted or nodded to seemed happy to see me there and that is about as much socializing or bonding as I typically get.

I am absolutely certain none of them would trade places with me. They don't want this. Whatever the trendy things is it isn't having aspergers.



AlienorAspie
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25 May 2014, 9:39 am

I think the most frustrating (although not the always the most debilitating) thing about AS for me is the fact I have certain "gifts" and (what I see as) a better, clearer and less selfish viewpoint than most, but i do not have the ability to express them without invoking some sort of negative reaction. People usually see either the good (artistic, good agony-aunt) or the bad (too introverted and self loathing/extroverted and arrogant , no brain-mouth filter, or the ability to adapt this to the person or situation), or a "sickly" person or hypochondriac/liar when I tell them "I'm sorry I cant eat that, I'm allergic to salad". I wouldn't believe me either to be fair! Everything about me seems so far-fetched and I am too honest because I dont care what they think if it is based on prejudice. If they see the good bits, then see the mess in my house, for example, and they dont know that I'm hyperactive if anything, they can't imagine that it is not just laziness. Nice people are sickeningly nice to me, and horrible people are really horrible. As Ive got older and get treated like a teenager still, at 28, it has become too annoying to bother going out. Do you all get this?

For example, I have a good degree in footwear design from a 'prestigious' uni, but I was soooo disappointed with my final grade because it wasnt perfect lol. I knew I was more than capable but missed so many classes because of illness/social exhaustion, especially at the start when it was most important, and I did not respect my tutor so couldn't pretend to like the others, or speak about my work in a way the explained at all what it was about. Although I worked solidly gathering info, ideas, images etc for my dissertation for months, I could only bring myself to start putting together my notes as proper text the day before the hand-in, because I absolutely had to. Obviously I didn't sleep that night (which I'm used to) and had an incredibly stressful time getting it printed and bound in the morning. I got there with only 2 minutes to spare, thankfully!

My shoes were all made using very time-taking traditional techniques (40 hrs for a professional) that I'd taught myself from books, but my tutor had never made a shoe in her life (my uni wasnt all it cracked up to be), so unless I told her how hard it was (I was too shy and disgusted with her to try- because she was a thief as well as superficial). She treated me as if I was stupid, and then like I wasn't there- that was fine for me. It has always been impossible for me to ask for help, so while everyone else at the uni got the technicians to make their shoes or pick the correct materials I did it all myself, but I got no extra marks for that even though I tried to show it in my sketchbooks etc. She was genuinely shocked when I received the uni's highest footwear prize based just on my work (not meeting them face to face) and went on to be a finalist in a big competition judged by Manolo Blahnik and got to meet him. I was incensed when she sent an email around the uni trying to take the credit for my achievements. She started to be really nice to me then :roll: I could not find a job for months after uni despite these things, although my next door neighbour took pity on me and took me on styling jobs. I was always the odd one out and in fashion that is not a good thing, despite how creative you'd think it is. I moved back to my home town and spent a lot of money setting up a business making bespoke wedding shoes but despite having lots of orders I couldn't organise myself enough to make them :( Thankfully the 2 customers i actually made for were very, very patient.

People must think I'm lazy to have my business put on hold, but my family, school friends and I know I am constantly trying to self-improve and am always busy so I didnt understand what I was doing wrong. I'm not depressed or have any other mental health problems that I know of. Ive given myself CBT for phobias, but then another sensory problem would arrive in its place. It may not look like a disability, but i am able to do even the basic things that are important to me, like making a phonecall, texting people back or remembering appointments, even when Ive written reminders all over me! In some ways I wish I had been given accommodations, but I think I needed to be put in stressful situations to survive. It takes a lot to stress me out because the constant feeling of something-bad-is-going-to-happen has always been normal to me- I cant imagine anything breaking me now I have a bit of life experience. I feel like it is my only choice to get a diagnosis as I have recently realised there is nothing more i can do to help myself- I need the diagnosis for people (doctors, future employers) to take my needs seriously if and when I need help that seems completely mad or unnecessary to those who dont already know me- I need things written down, for example.

I think we need people to "come out" in a way, to change the stereotype of mental health problems of all sorts. It will be problematic before a balance of "It is a gift and they dont need special treatment" and "It is a horrible disability and they're all stupid, weird and lazy" (the one that needs to be challenged the most). Ignorant people need to know that no-one can be pigeon-holed, whether they have a disability or not. There was a woman on breakfast TV on friday (i think) who was talking about being rejected from a job because she disclosed past depression. I'm thankful people are speaking out these days to shame big employers who do this but the whole "trendy" thing is a bit much.


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25 May 2014, 9:48 am

Acedia wrote:
That's very true rascal. A large number of AS people don't even post on these forums. I've met HFA people in real life who live in accommodation, are unemployed, and some who work in disability work shops.

Why isn't this side of HFA represented?


I'm going to reply to other posters, but atm busy, just posting this small post.

---


I live in supported housing, just moved in there 2 weeks ago, I have a small appartment and receive help with cooking to make sure I eat, shopping if sensory issues are too bad to do it myself or making lists of what to buy (because I can forget many items like for example soap or water) and other tasks, I am unemployed and receive disability pension.
I do volunteer work from my pc, but those people I do it for know about my autism, it is important because I have severe executive dysfunction and need to be guided in it (like making a schedule).


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AlienorAspie
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25 May 2014, 10:16 am

KingdomOfRats wrote:
mike_br wrote:
Yes.
I can not stand the "proud to be autistic" trend, as others mentioned. Don't hate them or anything, just don't agree... and truly think most of them don't have a diagnosis.

But hey, if you think it's cool to be depressed/autistic/whatever other disability... well, more power to you.

Myself, I'd be free of it all in a heartbeat, if possible.

people who are proud to be aspie or autistic usualy just have a stronger connection to their autistic identity,in own view the majority dont use it as a tool to look 'special', they may have felt they never belonged in this world their whole lives until they got given their label.

will never understand the concept of conditions being 'cool' or 'trendy',without actual proof of people stating they think this way-am not a believer of it.
of course some conditions have more awareness than others and some are overdiagnosed in specific age groups like ADHD,and some have more exposure in the celebrity world like bipolar but it doesnt make it trendy,it just means people who feel they dont fit in-want to fit in somewhere rather than feel disconnected to the entire world.


I already feel connected to the ASD identity, couldnt care less what anyone except my family and close friends think of it (theyre not keen at the moment but they are understandably protective), and I hope I can say "I am proud" one day without people assuming I want attention for it. I'm in no doubt that the vast amount of responses to the "label" will be negative.

The crazy thing is people with ASD are labelling people they dont know as immature or weird, when they themselves have to deal with the effects of that judgement every day! The one person I know who I would absolutely diagnose had the worst reaction to me suggesting I had it... maybe it was too close to home? She's going through a hard time though so I'm not taking it personally. She is a teacher though, and I really worry about her closed-minded view of disability :S There is a kid in her class who sounds lovely, and a little quirky, and she is HORRIBLE to him. She does impressions of how she speaks to him and if it was my child I'd take him out of the class but she seems to think he loves her. She cant tell that all of us are sitting thinking "That is disgusting". She is too clever in a way though- has a way of not letting you challenge her, and of getting compliments which people would never give usually by asking leading questions, so her ego grows bigger in public while she suffers with anxiety and body dysmorphia :/

I didnt know about the bipolar celebrity thing until the other day either! Have I been living under a rock? :lol: I wish I had- sounds comfy.

I think we should be very careful about labeling any teenager with such a concrete thing unless the evidence from before age 10/11 is very strong, because it is a period in your life when everyone is searching for themselves and trying to stand out. We all get more extreme personalities, social anxiety and want a box to fit in at that age, whether we admit it or not, because it is an important developmental stage to want to find "your people". Maybe they are the only people who would find the idea of a disability trendy... if their peers are doing it, they want to do it. I think by mid-twenties if there is no change in social skills etc then a diagnosis is not as likely to be wrong.


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