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Author Topic: Health: Autism neurotypical talk?  (Read 7026 times)

Gaudior

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Re: Autism neurotypical talk?
« Reply #15 on: January 13, 2016, 07:23:11 am »
Quote
The 'cult of autism' that you are complaining about is being spearheaded by Autism Speaks. It is very important that you understand that Autism Speaks is nearly universally reviled by actual autistic people. Autism Speaks pointedly tramples over the needs and experiences of actual autistic people in favor of promoting their own agenda: to somehow cure autism (as if it was a disease) and wipe that neurotype from the face of the earth. Does this sound like an ethical and worthwhile cause? I sure as hell don't think so.

 
This is very important. Several friends of mine who are autistic absolutely despise Autism Speaks. Sadly, a lot of people support the organization without really knowing much about them, thinking that it is an organization that supports and helps them.
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Re: Autism neurotypical talk?
« Reply #16 on: January 13, 2016, 11:31:51 pm »
Quote from: Gaudior;185096


 
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Elding

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Re: Autism neurotypical talk?
« Reply #17 on: January 14, 2016, 07:39:08 pm »
Quote from: Gaudior;185096
This is very important. Several friends of mine who are autistic absolutely despise Autism Speaks. Sadly, a lot of people support the organization without really knowing much about them, thinking that it is an organization that supports and helps them.

While I agree that Autism Speaks is a sad and offensive waste of space, it is not because they are trying to find a cure for Autism. Some people want that cure. However, they have released horrible and completely un-true commercials like "" which portrays autistic people like the villain from a horror movie waiting to happen. Not to mention that Autism Speaks have zero autistic members of their board, and once funded a now-removed video in which a mother spoke of wanting to commit murder-suicide with her Autistic daughter, apparently right in front of her daughter. AS speaks of Autism in a tone of fatality, terror, tragedy and the approaching apocalypse.

Trying to find a cure is sadly the only thing they're doing right. They are, unfortunately, a rather tasteless crowd that only spews oil on the flames.
« Last Edit: January 14, 2016, 07:40:47 pm by Elding »
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Re: Autism neurotypical talk?
« Reply #18 on: January 15, 2016, 05:16:43 am »
Quote from: Elding;185165
While I agree that Autism Speaks is a sad and offensive waste of space, it is not because they are trying to find a cure for Autism. Some people want that cure. However, they have released horrible and completely un-true commercials like "" which portrays autistic people like the villain from a horror movie waiting to happen. Not to mention that Autism Speaks have zero autistic members of their board, and once funded a now-removed video in which a mother spoke of wanting to commit murder-suicide with her Autistic daughter, apparently right in front of her daughter. AS speaks of Autism in a tone of fatality, terror, tragedy and the approaching apocalypse.

Trying to find a cure is sadly the only thing they're doing right. They are, unfortunately, a rather tasteless crowd that only spews oil on the flames.

The only reason I can find to not-as-much support looking for a cure but accept looking for a cure is because I understand the nature of medical discoveries: in the process of looking for a cure that they are unlikely to find, a completely different thing will be discovered that will possibly be of benefit to others or will open an entirely new branch of medical science.

I cannot support the search for a cure for autism because it is a neurotype and not a disease. As such, I find it extremely unethical. Further, looking at the contributions to society made by people with the autistic neurotype, I believe it would be detrimental to society as a whole to wipe that neurotype from the face of the earth.

To me, searching for a cure is basically saying "you think wrong and as such cannot/should not be allowed to exist". Fuck that.

Seriously.  

Fuck. That.
« Last Edit: January 15, 2016, 05:17:58 am by Allaya »
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Elding

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Re: Autism neurotypical talk?
« Reply #19 on: January 15, 2016, 02:06:43 pm »
Quote from: Allaya;185188
The only reason I can find to not-as-much support looking for a cure but accept looking for a cure is because I understand the nature of medical discoveries: in the process of looking for a cure that they are unlikely to find, a completely different thing will be discovered that will possibly be of benefit to others or will open an entirely new branch of medical science.

I cannot support the search for a cure for autism because it is a neurotype and not a disease. As such, I find it extremely unethical. Further, looking at the contributions to society made by people with the autistic neurotype, I believe it would be detrimental to society as a whole to wipe that neurotype from the face of the earth.

To me, searching for a cure is basically saying "you think wrong and as such cannot/should not be allowed to exist". Fuck that.

Seriously.  

Fuck. That.

Right. I really don't think you understand what Autism can look like.

I once knew a boy who was gravely autistic. He was partially blind, could not run, could not speak, had difficulties walking without assistance. Most of the time, he spent wearing a helmet because he compulsively hit himself in the head. He had to be restrained for his own safety when that happened. He had to wear a diaper, and spent much of his time confined to a wheel chair. He had celiacs, too, a disease often associated with severe autism.
This was an incredibly bright child, able to fully understand how limited he was, and what his life was going to look like for the rest of his years, a fear he often expressed in his writing. Do you not understand what a total nightmare he must have been living? He might never be able to live an independent life without a 24/7 aid. Autism is not limited to simply stuttering or being a little bad at socializing, it can be truly crippling and a true disability.

Besides, what about those of us who already self-medicate? Should we stop, just because it is a "neurotype and not a disease"? I have to follow a diet in order to be able to function in the world and do my job so I can get paid and live. When I am on it, I can function, and I feel a lot better when I'm able to take care of myself. When I can run in the woods again, without the near-constant fear of falling twisting my ankle or something. I'm actually pretty close to "normal" now, and even though I'm far from neurotypical, that doesn't matter to me. But not everyone is so lucky - the diet that works for me doesn't work for everyone. I seriously suggest that you stop getting offended on the behalf of those of us who might very much appreciate a cure. Autism can be a lot more than just a different way to think (although for some people - perhaps even most people - yes it is a different way to think and little else, but I'm not talking about them right now. They are not the ones who truly need the cure). And it's not like anyone is going to shove it down our throats - if someone who is autistic doesn't want to take the medicine once/if it becomes available, that's great, but why should that impact those of us who think otherwise?

I understand where you are coming from. I really do - and I and many other autistic people out there very much appreciate the fight that is being carried on when it comes to autism and rights. But to say that it is not a disease is simply not true. At least, it is not the full picture. I'm very hopeful about the search for a cure and I very much hopes it will eventually become available.
« Last Edit: January 15, 2016, 02:13:19 pm by Elding »
Out in the woods, and I\'m not alone, but the sun\'s quickly going down!
There! In the trees! Something stalking me! Stop walking around!
\'K, just be cool, don\'t be such a fool! There is nothing at all to fear...
... other than the trees and the night and a beam of light, and the breathing in my ear...
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Sefiru

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Re: Autism neurotypical talk?
« Reply #20 on: January 15, 2016, 06:34:20 pm »
Quote from: Elding;185231

I understand where you are coming from. I really do - and I and many other autistic people out there very much appreciate the fight that is being carried on when it comes to autism and rights. But to say that it is not a disease is simply not true. At least, it is not the full picture. I'm very hopeful about the search for a cure and I very much hopes it will eventually become available.

 
Speaking as an outsider to both groups, I see a parallel here to the debate among Deaf people concerning cochlear implants. On the one hand, some people want to change society's perception of a trait so that it is not considered a defect, while others want to "cure" the trait. Would you say this is a fair comparison?

(Left-handedness is also a trait that has gone through this debate. The current cultural attitude is acceptance, but that is rather recent.)

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Re: Autism neurotypical talk?
« Reply #21 on: January 15, 2016, 08:24:04 pm »
Quote from: Sefiru;185259
Speaking as an outsider to both groups, I see a parallel here to the debate among Deaf people concerning cochlear implants. On the one hand, some people want to change society's perception of a trait so that it is not considered a defect, while others want to "cure" the trait. Would you say this is a fair comparison?

(Left-handedness is also a trait that has gone through this debate. The current cultural attitude is acceptance, but that is rather recent.)

... what. I had no clue about this hearing aid business. My drama senses are tingling...

To answer your question, yes and no. It is mostly a fair comparison I would say, with the exception that Autism is a lot slippier, because many people consider autism to be part of a persons character and personality. I can see why, and mostly (though not fully) agree with that. So, to say that you want to "cure" someones autism, you basically say that you want to change who they are as a person, or it can at the very least be taken that way.

Left-handedness is a little different.. not only is it not a disorder in the sense that it is harmful or a risk to the person, the 'old methods' of 'curing' it were really harmful to lefties, being quite traumatic with a long range of ill health effects. Hopefully, if such a cure came out to "cure" autism, it would get shoved right back up the backside of the lab it came from.
« Last Edit: January 15, 2016, 08:27:04 pm by Elding »
Out in the woods, and I\'m not alone, but the sun\'s quickly going down!
There! In the trees! Something stalking me! Stop walking around!
\'K, just be cool, don\'t be such a fool! There is nothing at all to fear...
... other than the trees and the night and a beam of light, and the breathing in my ear...
[/I]

PrincessKLS

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Re: Autism neurotypical talk?
« Reply #22 on: January 16, 2016, 10:31:06 pm »
Quote from: Elding;185231
Right. I really don't think you understand what Autism can look like.

I once knew a boy who was gravely autistic. He was partially blind, could not run, could not speak, had difficulties walking without assistance. Most of the time, he spent wearing a helmet because he compulsively hit himself in the head. He had to be restrained for his own safety when that happened. He had to wear a diaper, and spent much of his time confined to a wheel chair. He had celiacs, too, a disease often associated with severe autism.
This was an incredibly bright child, able to fully understand how limited he was, and what his life was going to look like for the rest of his years, a fear he often expressed in his writing. Do you not understand what a total nightmare he must have been living? He might never be able to live an independent life without a 24/7 aid. Autism is not limited to simply stuttering or being a little bad at socializing, it can be truly crippling and a true disability.

Besides, what about those of us who already self-medicate? Should we stop, just because it is a "neurotype and not a disease"? I have to follow a diet in order to be able to function in the world and do my job so I can get paid and live. When I am on it, I can function, and I feel a lot better when I'm able to take care of myself. When I can run in the woods again, without the near-constant fear of falling twisting my ankle or something. I'm actually pretty close to "normal" now, and even though I'm far from neurotypical, that doesn't matter to me. But not everyone is so lucky - the diet that works for me doesn't work for everyone. I seriously suggest that you stop getting offended on the behalf of those of us who might very much appreciate a cure. Autism can be a lot more than just a different way to think (although for some people - perhaps even most people - yes it is a different way to think and little else, but I'm not talking about them right now. They are not the ones who truly need the cure). And it's not like anyone is going to shove it down our throats - if someone who is autistic doesn't want to take the medicine once/if it becomes available, that's great, but why should that impact those of us who think otherwise?

I understand where you are coming from. I really do - and I and many other autistic people out there very much appreciate the fight that is being carried on when it comes to autism and rights. But to say that it is not a disease is simply not true. At least, it is not the full picture. I'm very hopeful about the search for a cure and I very much hopes it will eventually become available.

 
I know a grown man who's a family friend (gets taken care of by one of my uncles). He's an autistic savant but he's socialization skills are at the point of little boy. So I know when it comes to autism, people usually have the higher functioning ones or the AS (Aspbergers) ones to speak up for the whole community. So yes, I know how "bad" autism could get. But most of my frustration is when I try to talk to higher functioning autistics or people on the AS spectrum. I've had a couple of experiences where they get mean or don't understand that something they said has really hurt your feelings.
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Re: Autism neurotypical talk?
« Reply #23 on: January 17, 2016, 12:01:26 am »
Quote from: PrincessKLS;185298
I know a grown man who's a family friend (gets taken care of by one of my uncles). He's an autistic savant but he's socialization skills are at the point of little boy. So I know when it comes to autism, people usually have the higher functioning ones or the AS (Aspbergers) ones to speak up for the whole community. So yes, I know how "bad" autism could get. But most of my frustration is when I try to talk to higher functioning autistics or people on the AS spectrum. I've had a couple of experiences where they get mean or don't understand that something they said has really hurt your feelings.

 
Indeed. As a relatively high-functioning aspie, I'm really glad I was taught the humble pie of meeting people who were worse off than me.

Well, that's just Autism I'm afraid. Don't be afraid to speak up when that stuff happens - most aspies, as you wrote, simply don't realize that what they're saying is hurtful. If you say it is and explain why, chances are they'll be grateful for teaching them something useful. It's hard to find people who can give good critiques on socially acceptable behavior, most people just get pissed for obvious reasons.
Out in the woods, and I\'m not alone, but the sun\'s quickly going down!
There! In the trees! Something stalking me! Stop walking around!
\'K, just be cool, don\'t be such a fool! There is nothing at all to fear...
... other than the trees and the night and a beam of light, and the breathing in my ear...
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Allaya

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Re: Autism neurotypical talk?
« Reply #24 on: January 19, 2016, 09:07:38 am »
Quote from: Elding;185231
Right. I really don't think you understand what Autism can look like.


It is INCREDIBLY presumptuous on your part to assume this of me. :stop:
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Elding

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Re: Autism neurotypical talk?
« Reply #25 on: January 19, 2016, 09:19:21 pm »
Quote from: Allaya;185423
It is INCREDIBLY presumptuous on your part to assume this of me. :stop:

Quote from: Allaya;185188
The only reason I can find to not-as-much support looking for a cure but accept looking for a cure is because I understand the nature of medical discoveries: in the process of looking for a cure that they are unlikely to find, a completely different thing will be discovered that will possibly be of benefit to others or will open an entirely new branch of medical science.

I cannot support the search for a cure for autism because it is a neurotype and not a disease. As such, I find it extremely unethical. Further, looking at the contributions to society made by people with the autistic neurotype, I believe it would be detrimental to society as a whole to wipe that neurotype from the face of the earth.

To me, searching for a cure is basically saying "you think wrong and as such cannot/should not be allowed to exist". Fuck that.

Seriously.  

Fuck. That.

(Bolded emphasis is mine.)
 
Dude.

Lets do a thought exercise in something we autistic people are taught by psychologists, a little something called "out of box thinking". This means imagining that you are someone else.

Imagine that you're me, at age 14. That you spent half your childhood walking on crutches because your feet hurts as if you constantly walked on needle points if you tried to go without them. You really want to play soccer, you can feel every muscle begin to atrophy because you're not moving as you should and you're starting to get a terrible back pain, but heey that's just too bad. Or for that matter, imagine that you're that unfortunate ten-year-old boy who cannot wipe his own butt, or even walk across the room without someone holding onto him. A brightly shining mind who wants so much, but is trapped in a near-vegetable body, for the rest of his life - which one can assume to be cut rather short, because his body simply is not healthy and he will be at risk for a great many physical illnesses, including heart disease, chaotic blood pressure, deadly allergies, and sleep disorders.

Can you imagine this vividly? The physical pain? The sorrow? The fear of dying young? The humiliation of having dreams and knowing that you can never follow them? Great. You're halfway there. Now imagine, that someone said that finding a cure to that pain, that sorrow, that suffering... was unethical.

Are you following me here? This (in addition to the bolded parts of YOUR COMMENT ABOVE) is why I assumed you have no fucking clue what Autism can be like. Because if you truly know, then saying that it is "unethical" to find a cure (even so boldly as finishing the sentence with a "Fuck. That."), is one. Hell. Of an asshat thing to say.

You need to explain yourself better. I don't want to think of you as someone who would knowingly say such a terrible thing, and I don't think it was your intention to come off as a jerk. But I cannot read your mind. I can only read what you have written. And so far you've written a very dark post about not wanting to find a cure for suffering people, and then you expressed yourself very rudely when I tried to illustrate why there might be more to this issue than you seem to think.

Why, in your mind, is it such a terrible, "unethical" thing to help someone have a normal childhood, a healthy, functioning body, or live life without constant physical pain or the fear that you will hurt yourself? THIS is why I doubted that you have any clue at all. And if you stand by your point even after I have written all this, I am genuinely curious about your line of thought, and I ask you to enlighten me how it would have been unethical to help me walk without crutches when I was 14.
« Last Edit: January 19, 2016, 09:23:57 pm by Elding »
Out in the woods, and I\'m not alone, but the sun\'s quickly going down!
There! In the trees! Something stalking me! Stop walking around!
\'K, just be cool, don\'t be such a fool! There is nothing at all to fear...
... other than the trees and the night and a beam of light, and the breathing in my ear...
[/I]

Allaya

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Re: Autism neurotypical talk?
« Reply #26 on: January 20, 2016, 03:22:16 pm »
Quote from: Elding;185445
Lets do a thought exercise in something we autistic people are taught by psychologists, a little something called "out of box thinking". This means imagining that you are someone else.


I am going to acknowledge that I am in a position of privilege due to speaking English, the language with which this discussion is taking place, at an ILR level 5 native proficiency.

I know that it is not true of all Swedish people, but I have run into an extraordinarily high number of them who are markedly overconfident in their English language ability, even among those rated at (a minimum) ILR Level 3 professional working proficiency.

One notable instance would be the fellow who nearly destroyed a brokered ceasefire in Africa a few years ago due to a complete inability to grasp that specific words in English mean specific things and the words used by a native speaker are not arbitrarily chosen.

Or, as the common refrain on this forum goes: Words Mean Things.

I am not saying this to shame you, make you feel bad, or humiliate you. It is simply that you appear to be completely missing a great deal of what I am saying by ignoring or being unaware of the implications behind the specific word choices that I have made.

Adding to this, I am wondering if you are conflating my use of the word cure with the Swedish (and Norwegian) word behandling[/I], since I am going to assume that (like most bilinguals) you think in Swedish even when you’re writing in English.

Here’s the thing. Behandling is an imprecise translation in that it can mean a cure OR a treatment. By the level of vehemence in your responses to me, I am going to hazard a guess that perhaps you’re under the assumption that I am opposed to behandling in the sense of a treatment. I would like, for the record, to point out that I specifically used the word cure (with all the baggage it brings with it in the context of Autism Culture in the Anglosphere). Because Words Mean Things.

You say you cannot read my mind. How about starting with reading my words a bit more carefully.

Anyways. Moving on.

The first point that I would like to make is that the statements that you have most vociferously objected to are statements of my personal ethics and convictions. They are not statements of how I believe others should think. Being a disabled person doesn’t make it okay for me to tell other disabled people how to live their lives or form their opinions.

The qualifiers were right there in the statements of mine which you held up to be examples of why I clearly have no idea what I’m talking about…which brings me to the next point.

You don’t know me. You don’t know the nature of my disabilities. And yet you repeatedly have been patronizing, condescending, belittling, and have tried  to personally discredit me in just about every response you’ve made to me. Please stop pretending that you know my situation. It says more about you and the strength of your arguments than I think you realize.

Also note that I have not at any time speculated about the nature of your disabilities. It’s not my business to comment on them and I don’t understand why you feel it is your business to speculate and comment on mine (specifically, that you don’t think I have any…which is incorrect).

As for this discussion, if you want to attack my stated opinions you are more than welcome to do so. This is a debate and discussion forum, after all. Maybe leave out the ad hominems, appeals to emotion, and strawmen in the future. Logical fallacies do no one any favors.
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People cannot be reasoned out of an opinion that they have not reasoned themselves into. — Fisher Ames (adapted)

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Re: Autism neurotypical talk?
« Reply #27 on: January 20, 2016, 04:05:51 pm »
Quote from: Sefiru;185259
Speaking as an outsider to both groups, I see a parallel here to the debate among Deaf people concerning cochlear implants. On the one hand, some people want to change society's perception of a trait so that it is not considered a defect, while others want to "cure" the trait. Would you say this is a fair comparison?


There is actually a very good reason for that!

The reason there are very strong similarities between Deaf Culture and Autism Culture is primarily the fact that Deaf Culture (as well as Blind Culture) has consciously been used as a template by many in the online and offline autistic community, in part because it is a well-established and vibrant role-model culture/community.

Heh.  I also remember the discussions with an old coworker of mine regarding cochlear implants. He wasn't too interested in them until he got the everliving crap beat out of him by the cops because he wasn't obeying commands.

Kinda hard to obey a command to drop to the floor when you're deaf and have your back to the door. Icing on the cake was getting booked for resisting arrest after they jumped him from behind with no warning. He didn't know the cops were there until he was already in cuffs...and he was the one who called them for help in the first place.

Makes me regret that my ASL is so rusty...but it's not like it would be much use in Norway anyways.
Service is the rent we pay for the privilege of living on this earth.  — Shirley Chisholm
No doubt the truth can be unpleasant, but I am not sure that unpleasantness is the same as the truth.  — Roger Ebert
It is difficult to get a person to understand something when their livelihood depends upon them not understanding it. — Upton Sinclair (adapted)
People cannot be reasoned out of an opinion that they have not reasoned themselves into. — Fisher Ames (adapted)

PrincessKLS

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Re: Autism neurotypical talk?
« Reply #28 on: January 22, 2016, 01:23:39 am »
Quote from: Allaya;185464
I am going to acknowledge that I am in a position of privilege due to speaking English, the language with which this discussion is taking place, at an ILR level 5 native proficiency.

I know that it is not true of all Swedish people, but I have run into an extraordinarily high number of them who are markedly overconfident in their English language ability, even among those rated at (a minimum) ILR Level 3 professional working proficiency.

Wait, so what are ILR levels and how many are there?
« Last Edit: January 22, 2016, 01:59:36 am by SunflowerP »
PrincessKLS

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Re: Autism neurotypical talk?
« Reply #29 on: January 22, 2016, 06:00:03 am »
Quote from: PrincessKLS;185582
Wait, so what are ILR levels and how many are there?

 
https://en.wikipedia.org/wiki/ILR_scale

Sometimes, like in that post of mine, I forget that my exposure to language proficiency testing is atypical for most people.
Service is the rent we pay for the privilege of living on this earth.  — Shirley Chisholm
No doubt the truth can be unpleasant, but I am not sure that unpleasantness is the same as the truth.  — Roger Ebert
It is difficult to get a person to understand something when their livelihood depends upon them not understanding it. — Upton Sinclair (adapted)
People cannot be reasoned out of an opinion that they have not reasoned themselves into. — Fisher Ames (adapted)

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