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Tuttle
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30 Nov 2011, 10:10 pm

dalurker wrote:
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I am someone who would worry about people being cured whether they want it or not. I'm also explicitly someone who states that I'm not against a "cure" existing, and people taking it if they choose to. I think each individual should be able to make that decision without there being any additional pressure to take the "cure". If the person who doesn't want the "cure" is non-verbal or the person who wants it is one of the most "high functioning" cases, I think that both sides must be respected. It's not about functioning level, its about individuals and individuals being allowed to make such drastic decisions as that for themselves. We're not just disabilities we are people. I am not a case study for Asperger's Syndrome, I'm autistic.

As for disability not being neutral, yes, but I don't care that its not neutral, making me not be me would be far more damaging than autism is.


What evidence is there that someone is going to be forced?


This is irrelevant to me not wanting someone to be forced. I already said that I'm not against a "cure" existing, I'm against it being forced on people.

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When was my consent ever requested regarding whether I wanted to put up with being disabled or not?


You have always been disabled. Becoming not disabled means changing you. If you want that change then go ahead and take it. Personally, I am absolutely disabled, yet value being myself far more than removing my disability. I Don't Want to have to relearn how to live. I don't want to have to think in entirely different manners. Removing autism from me would mean that I am a different person in my mind.

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It doesn't make sense for functioning level not to influence that decision, as cure is to increase functioning.


Cure is to remove autism. Removing autism might increase functioning but it makes other changes as well. The functioning level can be taken into account by each individual, but at heart it should be each individual's choice. I really don't think that anyone should have the right to tell someone non-verbal that they are less than human and need to be made into a real human by removing their autism. They are still a person and still an individual. If they want to remain that way it should be their choice.

Life isn't about who can make the most money. Happiness should be valued far more than money. If someone can be happier disabled than not, then why should an external view of what is right get the ability to reduce someone's happiness.

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I don't know what cure would even mean for someone very high-functioning, as they already have lots of ability.


I have a college degree. I live away from my parents. I also can't relate to the sensory discussions that occur on these forums because it takes getting to some of the people who consider themselves moderate autism (not Asperger's) to get to relating to similar level of sensory issues.

Functioning level is a terrible measurement in many ways.

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This doesn't have anything to do with making you not be you.


To me it does. Being autistic is an intrinsic part of me, not an additional "illness". Being autistic helps define how I view the world, how I interact with it, and how I always have interacted with it. Take that away and you take away my ability to interact with the world in the manner which I always have. You make me relearn basic things because my approach is innately that different. You make me not be able to function in the same manners that I always have.

You also take away how I think and how I interact with emotions, because my thought processes are also affected by my autism.

You change who I am.

I am Tuttle. I am autistic. I am not just a person who happens to have autism. Changing my autism changes me. Removing my autism removes part of me.

If others want that done, they can go ahead. Nobody should be able to do that to me when I'm the person who is disabled.



dalurker
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30 Nov 2011, 11:33 pm

Tuttle wrote:
Becoming not disabled means changing you.

That's not true.

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I Don't Want to have to relearn how to live. I don't want to have to think in entirely different manners. Removing autism from me would mean that I am a different person in my mind.

Well, I've been ready to live all my life. I don't get how someone would have to relearn how to live. I can't ever truly adjust to how I've usually been living.

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Cure is to remove autism. Removing autism might increase functioning but it makes other changes as well. The functioning level can be taken into account by each individual, but at heart it should be each individual's choice. I really don't think that anyone should have the right to tell someone non-verbal that they are less than human and need to be made into a real human by removing their autism. They are still a person and still an individual. If they want to remain that way it should be their choice.

Cure isn't particularly about removing autism. Regardless, cure-related research is necessary for devising therapies to remove disabilities.

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Life isn't about who can make the most money. Happiness should be valued far more than money. If someone can be happier disabled than not, then why should an external view of what is right get the ability to reduce someone's happiness.

Money is needed to live and it helps. Disability decreases happiness. Common sense.

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Functioning level is a terrible measurement in many ways.

Functioning levels/disparities still are real.



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30 Nov 2011, 11:48 pm

Do you really think that even if your autism was removed that you would just be able to get up and live a normal life? No, you wouldn't, as you have been autistic your whole life, and in order to come be able to just jump into a new life your memory and the things you've learned and gotten used to would have to be changed to the point were you might as well be a conpletely different person.


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Tuttle
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01 Dec 2011, 12:34 am

dalurker wrote:
Tuttle wrote:
Becoming not disabled means changing you.

That's not true.



I have no idea how this isn't true. If someone who is blind gains sight they've had a drastic change. If someone who needs a wheelchair gains the ability to walk they're drastically changed. The same is true for autism.

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I Don't Want to have to relearn how to live. I don't want to have to think in entirely different manners. Removing autism from me would mean that I am a different person in my mind.

Well, I've been ready to live all my life. I don't get how someone would have to relearn how to live. I can't ever truly adjust to how I've usually been living.


If someone who always has been able to see suddenly becomes blind (which is possible), how they approach things has to change drastically. My autism is such an intrinsic part of me that I would truly expect that the change in removing it could be a full order of magnitude greater than a sighted person loosing the ability to see.

I'm living now. And changing how I perceive the world (which would be necessary to make me not disabled) means I'd need to make drastic changes just to make me more normal and no more happier.

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Cure is to remove autism. Removing autism might increase functioning but it makes other changes as well. The functioning level can be taken into account by each individual, but at heart it should be each individual's choice. I really don't think that anyone should have the right to tell someone non-verbal that they are less than human and need to be made into a real human by removing their autism. They are still a person and still an individual. If they want to remain that way it should be their choice.

Cure isn't particularly about removing autism. Regardless, cure-related research is necessary for devising therapies to remove disabilities.


You've still not responded at all about the idea that people are allowed to make choices.


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Life isn't about who can make the most money. Happiness should be valued far more than money. If someone can be happier disabled than not, then why should an external view of what is right get the ability to reduce someone's happiness.

Money is needed to live and it helps. Disability decreases happiness. Common sense.


Some money is needed, true. That's an unfortunate thing that is true in our society. However the amount that is needed isn't actually that much. It's not necessary to have fancy cars, large houses, and yearly vacations. It's not necessary to buy new electronics every year. It's not necessary to go out spending $100 for a piece of clothing. And rarely do those purchases actually increase happiness.

As for the second part of that statement [citation needed].

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Functioning level is a terrible measurement in many ways.

Functioning levels/disparities still are real.



I never said they aren't. I said they're a terrible measurement.

Take me for example. What's my functioning level?

I first started taking a full load of college classes at age 16. I graduated high school a week after I turned 17. When I went to college I didn't suddenly hit a wall like many aspies do. I graduated college before I turned 21, and got a double major in college.

When I went to college I went into a dorm room with other people. I didn't have a single and didn't require a single. (Though I did basically move out when a roommate swap occurred).

Since going to college, I've not lived with my parents other than the summer after freshman year. I'm not living with them at the moment, I have an apartment.

I have a boyfriend. In fact I've been in an almost 5 year long relationship. Not only have I managed to have a successful relationship for 5 years, we live together and I successfully live sharing all my space with someone else.

I have near daily meltdowns (though not severe ones), and at least weekly shutdowns.

I will never drive. Both myself and others have stated this. It will never be safe for me to drive.

I cannot take care of an apartment on my own. I cannot clean the entire apartment (there are parts that I can and parts that I can't). I have no ability to look at stuff and figure out what to do with it if it doesn't have a predefined spot. If I was to try to use most cleaning substances I'd be completely non-functional for the rest of the day, likely with a migraine.

I can barely cook. I might be able to learn to do this eventually, I'm working on it. If you give me a set of ingredients and a basic idea of what to do, instead of being able to make food I'd completely freeze and be unable to do anything even if I was very hungry. If I was given an explicit recipe I could make something from scratch.

There are times I can go grocery shopping and times I can't. Today is one of those days where I literally cannot simply go to the grocery store (quarter mile away) and buy some juice because I really want juice. I'm needing to have my boyfriend do that for me because its just not an option for me to go.

Beyond that, simply walking down the street is something I have major difficulties with because of my sensory issues being that severe. I have hypersensitive senses that trigger migraines. A large portion of my life is avoiding migraines. Even living in my apartment is sometimes too much.

I can't read anything other than 'positive' or 'negative' in emotions in most situations.

I have rather strong alexithymia. I have minimal sense of my own emotions and have even less of an idea of how to talk about them.

I've tried working with multiple different people for them helping me to find employment. Every one of them has told me that I should be on SSI. The latest has even told me that she often tells people to get off of SSI because they don't need it. People don't think I'll ever be able to work more than 20 hours a week.

However, despite these difficulties with interacting with people and with working, I have been tutoring people since I was 13 and do it well enough that people have told me that in a single session there's a major change because I've gotten someone to care far more about going through the process of learning the material.

I have times when I lose speech. Not being able to speak is a quite interesting state actually. More interesting is almost losing the ability to speak where you can only do so if necessary. In the latter state many people don't realize how limited my speech actually is because when its necessary it comes out just as well as if I had no reduction in speech.

I have been abused because of my naivety.

I have had at least one person close to me for my entire life. Close friends were actually not a huge challenge for me when I was young.

My functioning level is a huge mess. It varies topic to topic and day to day. If you look at parts of me then it looks like I'm incredibly high functioning, look at others and you wonder how I manage to live on my own. It's not a simple "high functioning" vs "less high functioning" comparison.


(And yes, despite every negative aspect listed, I'd still choose to remain autistic if I could remove my autism.)



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01 Dec 2011, 9:47 am

DerStadtschutz wrote:
Sweetleaf wrote:
dobrolvr wrote:
I was looking online at something the other day, and came across a whole slew of information regarding the Autism Awareness Puzzle Piece and how some people don't like it because they hold the stance of neurodiversity. What's your opinion? Is the puzzle piece symbol wrong? Should it, or should it not be worn?


I am confused why would having the stance of neurodiversity make someone dislike that symbol?

I don't think it is nessisarly right or wrong, but I am not quite sure what wearing that symbol would imply exactly, and for neurodiversity I would say Autism and AS are not the only variations from normal neurological functioning so it is a bit ridiculous to refer to anyone who does not have Autism or AS as neurotypical since there are other variations.


I think it's because the puzzle piece implies that a piece of your brain is missing if you're on the spectrum, which suggests you're inferior instead of separate but equal.


I thought it meant they just couldn't figure my brain out...


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01 Dec 2011, 6:14 pm

MagicMeerkat wrote:
http://phoenix-kat.deviantart.com/gallery/#/d3czytt


Ribbons are mostly used to gather awareness for serious diseases and severe genetic disorders, I don't think that's the ideal symbol to associate with Asperger's... Not to mention it's so corny and trite, I'd rather wear a tattooed swastika on my forehead.



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01 Dec 2011, 6:48 pm

Tuttle wrote:
I have no idea how this isn't true. If someone who is blind gains sight they've had a drastic change. If someone who needs a wheelchair gains the ability to walk they're drastically changed. The same is true for autism.

I can only conclude that you basically are scared of change in general and like to approve of social hierarchy.

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If someone who always has been able to see suddenly becomes blind (which is possible), how they approach things has to change drastically. My autism is such an intrinsic part of me that I would truly expect that the change in removing it could be a full order of magnitude greater than a sighted person loosing the ability to see.

Nobody is trying to force you to remove your "autism". I'm not trying to remove it either.

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I'm living now. And changing how I perceive the world (which would be necessary to make me not disabled) means I'd need to make drastic changes just to make me more normal and no more happier.

Perceiving things has nothing to do with disability. Being normal has nothing to do with it either.

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Some money is needed, true. That's an unfortunate thing that is true in our society. However the amount that is needed isn't actually that much. It's not necessary to have fancy cars, large houses, and yearly vacations. It's not necessary to buy new electronics every year. It's not necessary to go out spending $100 for a piece of clothing. And rarely do those purchases actually increase happiness.

Sounds like a dismal outlook for civilization.

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My functioning level is a huge mess. It varies topic to topic and day to day. If you look at parts of me then it looks like I'm incredibly high functioning, look at others and you wonder how I manage to live on my own. It's not a simple "high functioning" vs "less high functioning" comparison.


(And yes, despite every negative aspect listed, I'd still choose to remain autistic if I could remove my autism.)


I don't get how you can't do many of the things you say you can't, as from what you say, you don't point out any lack of skills, but sensory sensitivities getting in the way. Your situation isn't just as dire as those of others on the spectrum. I have trouble doing all kinds of things because I just plain don't know how to do and learn things and avoid mistakes. I didn't have that success in college. I went to college and did a semester at a dorm and made an ass out of myself, and received no job based on it, and now am just struggling to correctly do the job that I have now.



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01 Dec 2011, 9:48 pm

dalurker wrote:
Tuttle wrote:
I have no idea how this isn't true. If someone who is blind gains sight they've had a drastic change. If someone who needs a wheelchair gains the ability to walk they're drastically changed. The same is true for autism.

I can only conclude that you basically are scared of change in general and like to approve of social hierarchy.



It's not that I'm scared of change, it's that I value individuals' ability to choose far more than making someone match society.

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If someone who always has been able to see suddenly becomes blind (which is possible), how they approach things has to change drastically. My autism is such an intrinsic part of me that I would truly expect that the change in removing it could be a full order of magnitude greater than a sighted person loosing the ability to see.

Nobody is trying to force you to remove your "autism". I'm not trying to remove it either.



So you're just telling us how terribly wrong we are for thinking that people should have a choice about a cure?

I explicitly said in my first post that I'm not against people who want a cure getting one. I'm against people getting one without being asked if they want one. I'm against people not having the choice.


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I'm living now. And changing how I perceive the world (which would be necessary to make me not disabled) means I'd need to make drastic changes just to make me more normal and no more happier.

Perceiving things has nothing to do with disability. Being normal has nothing to do with it either.


This depends on your disability. Someone who's blind or deaf easily has how they perceive the world as part of their disability.

Someone like me, who has extremely hypersensitive senses as both an advantage and a disadvantage, and the advantages and disadvantages not being able to be decoupled, how I perceive the world is incredibly tied to my disability.

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Some money is needed, true. That's an unfortunate thing that is true in our society. However the amount that is needed isn't actually that much. It's not necessary to have fancy cars, large houses, and yearly vacations. It's not necessary to buy new electronics every year. It's not necessary to go out spending $100 for a piece of clothing. And rarely do those purchases actually increase happiness.

Sounds like a dismal outlook for civilization.


Not really, I'm openly anti-consumerist. I also have truly seen people far happier when they focus on something other than buying the latest and greatest.

I am not unhappy because the newest computer we have is 4 years old. I am not unhappy because I don't fly to big touristy places every year.

I'm happy becuse I have my computer. It lets me communicate with people and lets me do what I need with it.I'm happy because when I need to get out of the city, I have parents who will help me get into a kayak away from tourists.

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My functioning level is a huge mess. It varies topic to topic and day to day. If you look at parts of me then it looks like I'm incredibly high functioning, look at others and you wonder how I manage to live on my own. It's not a simple "high functioning" vs "less high functioning" comparison.


(And yes, despite every negative aspect listed, I'd still choose to remain autistic if I could remove my autism.)


I don't get how you can't do many of the things you say you can't, as from what you say, you don't point out any lack of skills, but sensory sensitivities getting in the way. Your situation isn't just as dire as those of others on the spectrum. I have trouble doing all kinds of things because I just plain don't know how to do and learn things and avoid mistakes. I didn't have that success in college. I went to college and did a semester at a dorm and made an ass out of myself, and received no job based on it, and now am just struggling to correctly do the job that I have now.


You missed my point. You also completely didn't understand parts my description of what I can and can't do, but they were mostly irrelevant to my point. (Also, so you know, I explicitly was focusing on my sensory aspect, not including every detail of the rest of my autism because I wasn't trying to say "look at me I'm so disabled", I was trying to say "if you look at the same person in different ways you get incredibly different results", my sensory aspect was the easiest way to show this)

If you view me from the lens of how someone does in academic situations, then I'm incredibly high functioning and there would be question if I have a disability at all.

If you view me from the lens of the ability to work, then I'm without question disabled, but how disabled is dependent on more details.

If you view me from the lens of sensory sensitivities... Well I eventually found someone one here who described more severe sensitivities than mine. That person is SuperTrouper. In this lens my disability is not only clearly present, but also clearly something that wouldn't put me as high functioning. The ability to either be able to function in one's place of living or outside of it seems required for high functioning to me.

If you look at all of me, sure it averages out to high functioning. There's not a better 'level' because I do function far better than those who are giving other labels. However, saying "high functioning" doesn't give an accurate picture for me. "autistic traits that impair day to day life without being visibly autism to someone without knowledge of the autistic spectrum with severe hypersensitivies" gives a far better description.

Simply using "functioning levels" as if they were generally applicable is oversimplifying reality to a problematic degree.



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01 Dec 2011, 10:53 pm

Tuttle wrote:
So you're just telling us how terribly wrong we are for thinking that people should have a choice about a cure?

Nobody is trying to deprive you of choice. I'm not trying to force anything on you.

Tuttle wrote:
You missed my point. You also completely didn't understand parts my description of what I can and can't do, but they were mostly irrelevant to my point. (Also, so you know, I explicitly was focusing on my sensory aspect, not including every detail of the rest of my autism because I wasn't trying to say "look at me I'm so disabled", I was trying to say "if you look at the same person in different ways you get incredibly different results", my sensory aspect was the easiest way to show this)

If you view me from the lens of how someone does in academic situations, then I'm incredibly high functioning and there would be question if I have a disability at all.

If you view me from the lens of the ability to work, then I'm without question disabled, but how disabled is dependent on more details.

If you view me from the lens of sensory sensitivities... Well I eventually found someone one here who described more severe sensitivities than mine. That person is SuperTrouper. In this lens my disability is not only clearly present, but also clearly something that wouldn't put me as high functioning. The ability to either be able to function in one's place of living or outside of it seems required for high functioning to me.

If you look at all of me, sure it averages out to high functioning. There's not a better 'level' because I do function far better than those who are giving other labels. However, saying "high functioning" doesn't give an accurate picture for me. "autistic traits that impair day to day life without being visibly autism to someone without knowledge of the autistic spectrum with severe hypersensitivies" gives a far better description.

Simply using "functioning levels" as if they were generally applicable is oversimplifying reality to a problematic degree.

I read what you wrote. I can't assume you have disabilities while you won't say what they are. Sensory sensitivities aren't the same as not being able to do things.



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01 Dec 2011, 11:11 pm

Now, everybody knows why Autism Speaks strikes a sore chord with me. A lot of successful and intelligent people wear diapers.


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01 Dec 2011, 11:57 pm

dobrolvr wrote:
I was looking online at something the other day, and came across a whole slew of information regarding the Autism Awareness Puzzle Piece and how some people don't like it because they hold the stance of neurodiversity. What's your opinion? Is the puzzle piece symbol wrong? Should it, or should it not be worn?


I like the puzzle piece it does a great job of representing many things. Like maybe we might be a puzzle to NTs, but thier world can be a puzzle for us too. To me the puzzle represents the obvious disconnect. It has so many possible different meanings which makes it awesome. Like the ying yang symbol one person might see that as good vs evil, while others might see it as harmony, universal contentment, man and women, or even bipolar disorder. The fact that we can interpret it in different ways makes it great. I find the puzzle piece is an excellent memorable icon. I felt like I was putting a puzzle together during the diagnostic process trying to figure out who I was and how I fit into the world with a disability I didn't know I had till age 20.



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02 Dec 2011, 12:24 am

Angel_ryan wrote:
dobrolvr wrote:
I was looking online at something the other day, and came across a whole slew of information regarding the Autism Awareness Puzzle Piece and how some people don't like it because they hold the stance of neurodiversity. What's your opinion? Is the puzzle piece symbol wrong? Should it, or should it not be worn?


I like the puzzle piece it does a great job of representing many things. Like maybe we might be a puzzle to NTs, but thier world can be a puzzle for us too. To me the puzzle represents the obvious disconnect. It has so many possible different meanings which makes it awesome. Like the ying yang symbol one person might see that as good vs evil, while others might see it as harmony, universal contentment, man and women, or even bipolar disorder. The fact that we can interpret it in different ways makes it great. I find the puzzle piece is an excellent memorable icon. I felt like I was putting a puzzle together during the diagnostic process trying to figure out who I was and how I fit into the world with a disability I didn't know I had till age 20.


Thanks for sharing your point of view. :) I'm currently 20 and awaiting formal diagnosis, so I definitely know what you mean.



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02 Dec 2011, 12:36 am

dalurker wrote:
I read what you wrote. I can't assume you have disabilities while you won't say what they are. Sensory sensitivities aren't the same as not being able to do things.


And I said, they make me completely non-functional. I can't give you a list of things that they prevent me from doing because it would require going through every last thing I do.

Easier is to say what I can do. I can sometimes walk in this state, sometimes I can't walk but I can crawl, I can curl up into a little ball (sometimes), I can cry (usually), I can vomit, I can sometimes force words out of my mouth (but have huge difficulty with it).

Even before I was diagnosed as autistic my sensory sensitivities were considered a disability. My hypersensitivities that are associated with my autism, trigger migraine with aura.

As for things that don't have to do with the migraines, I have told you things I can't do that had nothing to do with sensory sensitivities. I also don't need you to know about my disability. It's not actually relevant to the discussion.

What is relevant.

-People sometimes don't like the puzzle piece because its so strong associated with Autism Speaks
-People sometimes don't like Autism Speaks because they're focused on removing autism rather than supporting those with autism.
-People who don't want autism removed (from society completely) does include people who are disabled.
-People who don't want autism removed do so for reasons other than not wanting others to be competing with them.
-I personally am someone who doesn't want autism removed from society, doesn't want my own autism removed, and am disabled.
-My reasons have nothing to do with people competing with me.
-My reasons have nothing to do with not letting others have more opportunities.
-Not wanting autism removed completely does not mean not letting others be cured if a cure is available and they choose to get it.



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02 Dec 2011, 10:54 am

Well said tuttle!

As for the puzzle piece, when some well meaning person tries to hand me one, I smile and decline.

The puzzle piece is a symbol of the neural majority's incomplete, confused understanding of me, and those like me.
It is NOT my perspective on myself. I am not a puzzle to myself. Projecting this confusion on me is a failure to correct for the difference in perspective,
which is just another way of saying, it is engendered by a theory of mind deficit on the part of the giver.

At the turn of the last century, Freud described women and women's sexuality as "the dark continent", (that was a Victorian reference to the then "unknowable Africa").
If Freud said it today, he'd be laughed out of the "expert" category. He was locating the center, and sum total of knowledge about women in himself, and other (male) professionals.

For a variety of reasons, at present, when it comes to autism,we have the same situation of disconnect between source and expert.

I don't want a puzzle piece magnet in kindergarten primary colors on my fridge. I don't need it to remind me a half dozen times a day, that the society around me finds me non-standard and confusing.
If I'm ever in danger of forgetting, I can go to the grocery store, and try to chat with strangers in the check-out line. Why would I want a reminder in my home, that the very people who insist that I can't possibly understand them, (and assume that to be a defect in me), see me as an unknowable puzzle?

They are 99% of the population; and conflate their perspective with truth. Like fish who can't see the water in which they swim.

I have earned my perspective. I would not trade it for any piece of the world, much less that witless puzzle piece.



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02 Dec 2011, 11:26 am

Tuttle said : My name is Tuttle and I am Autistic.
Does anyone else feel a gush of warmth reading that line? It feels like a tight hug.
On the subject of cure, I can too say that it is part of my identity. It's that little autistic girl who struggled and learned so much, who survived school and bullying, who cried because nobody liked
her, who learned one by one the muscles you have to use to walk exactly like everybody else, who was so giving and sensitive....
If I were to be cured and become magically NT, what would I do with this little girl? would I be ashamed of her? Would she never be spoken of again? All that suffering for nothing?
All those skills aquired and lessons learnt for nothing?
I don't want to be cured, I have to make that little girl proud, not embarassed of having existed, for nothing.
About the symbol, I agree with all that plantwhisperer said. I am not a puzzle and I am not lost, and I don't want to be associated with the childish symbol of something incomplete. I feel complete, and autistic.



Sweetleaf
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02 Dec 2011, 11:35 am

dalurker wrote:
I read what you wrote. I can't assume you have disabilities while you won't say what they are. Sensory sensitivities aren't the same as not being able to do things.


Well I have to jump in now........Sensory sensativities can be disabaling. For instance I am sensative to noise so if I am in a place with a lot of loud noise I cannot focus on anything because its too much for my brain to handle. I also am sensative to light so what might be a normal amount of light for some can be painful for me because its too bright. Florecent lights are especially horrible for this.


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