Poll 19: non-autistic people defining autism

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Answer
Poll ended at 17 Feb 2012, 7:50 am
Option A 38%  38%  [ 6 ]
Option B 0%  0%  [ 0 ]
Option C 56%  56%  [ 9 ]
Option D 6%  6%  [ 1 ]
Option E 0%  0%  [ 0 ]
Option F 0%  0%  [ 0 ]
Option G 0%  0%  [ 0 ]
Option H 0%  0%  [ 0 ]
Total votes : 16

arnoldism
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19 Dec 2011, 7:50 am

Should non-autistic people be allowed to officially define autism?

Can a non-autistic person truly understand what autism is? Are a lot of them just writing about the subject when they know nothing real about it? Should this be allowed? What do they learn when they study autism? Or do they just presume?


Option A
I am autistic and I think that official definitions of autism should come from an amalgamation (preferably also segregated to a certain extent into different opinions on what autism is to show people that there are different opinions and that autism cannot be strictly defined in only one way, there is no rigid definition which is the correct one) of many definitions from autistic people with views across the entire spectrum of opinion on the subject, carefully put together by the same; autistic people with views across the entire spectrum of opinion


Option B
I am autistic and I think that official definitions of autism should come from non-autistic people who have studied autism and autistic people


Option C
I am autistic and I think that official definitions of autism should come from a combination of both of the above, preferably in this scenario it should be a requirement to label the definitions as from non-autistic people, autistic people or a combination of both so that people's open-mindedness about the definition can have more context


Option D
I am autistic and I have a different opinion to all of the above and have written it below


Option E
I am not autistic and I think that official definitions of autism should come from an amalgamation (preferably also segregated to a certain extent into different opinions on what autism is to show people that there are different opinions and that autism cannot be strictly defined in only one way, there is no rigid definition which is the correct one) of many definitions from autistic people with views across the entire spectrum of opinion on the subject, carefully put together by the same; autistic people with views across the entire spectrum of opinion


Option F
I am not autistic and I think that official definitions of autism should come from non-autistic people who have studied autism and autistic people


Option G
I am not autistic and I think that official definitions of autism should come from a combination of both of the above, preferably in this scenario it should be a requirement to label the definitions as from non-autistic people, autistic people or a combination of both so that people's open-mindedness about the definition can have more context


Option H
I am not autistic and I have a different opinion to all of the above and have written it below



Ganondox
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19 Dec 2011, 3:18 pm

All I can say is is Autism defined by a series of traits or by the people diagnosed with it?


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bucephalus
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19 Dec 2011, 5:39 pm

As option D requires a post as an answer. I don't think it makes the blindest bit of difference whether the person defining autism is autistic or not. It is what it is. Whatever that is


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TheChamelion
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19 Dec 2011, 6:04 pm

arnoldism wrote:
Should non-autistic people be allowed to officially define autism?

Can a non-autistic person truly understand what autism is? Are a lot of them just writing about the subject when they know nothing real about it? Should this be allowed? What do they learn when they study autism? Or do they just presume?


Option A
I am autistic and I think that official definitions of autism should come from an amalgamation (preferably also segregated to a certain extent into different opinions on what autism is to show people that there are different opinions and that autism cannot be strictly defined in only one way, there is no rigid definition which is the correct one) of many definitions from autistic people with views across the entire spectrum of opinion on the subject, carefully put together by the same; autistic people with views across the entire spectrum of opinion


Option B
I am autistic and I think that official definitions of autism should come from non-autistic people who have studied autism and autistic people


Option C
I am autistic and I think that official definitions of autism should come from a combination of both of the above, preferably in this scenario it should be a requirement to label the definitions as from non-autistic people, autistic people or a combination of both so that people's open-mindedness about the definition can have more context


Option D
I am autistic and I have a different opinion to all of the above and have written it below


Option E
I am not autistic and I think that official definitions of autism should come from an amalgamation (preferably also segregated to a certain extent into different opinions on what autism is to show people that there are different opinions and that autism cannot be strictly defined in only one way, there is no rigid definition which is the correct one) of many definitions from autistic people with views across the entire spectrum of opinion on the subject, carefully put together by the same; autistic people with views across the entire spectrum of opinion


Option F
I am not autistic and I think that official definitions of autism should come from non-autistic people who have studied autism and autistic people


Option G
I am not autistic and I think that official definitions of autism should come from a combination of both of the above, preferably in this scenario it should be a requirement to label the definitions as from non-autistic people, autistic people or a combination of both so that people's open-mindedness about the definition can have more context


Option H
I am not autistic and I have a different opinion to all of the above and have written it below


I think it should be autistic people who define autism. I wouldn't be able to define NTs well because I can never understand them completely so I think the same should be said with autism.


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MindWithoutWalls
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19 Dec 2011, 6:10 pm

Clarity and full understanding would be best. Therefore, I chose "C". Because professionals have ways of approaching and categorizing things that helped autism to be a known thing to diagnose people with in the first place, their input has merit. Because there are things they can't see for themselves, that they would only know if we tell them, their opinions would be biased and their understanding would suffer without the input of autistic people. More information, which can then be examined and evaluated by all who are capable of doing so - both autistic and NT - is best.

Nobody would expect, let's say, phantom pain after amputation to be fully understood if doctors never asked patients who had it what kind of pain they felt and where it was located. Many people with autism are capable of communicating in some fashion, even if it's best done by typing. Not being heard is not only limiting what can be known, it's causing unnecessary distress to those who could communicate but who go unheard in spite of it. I believe not letting autistics participate in any capacity in defining or describing autism is very damaging and lets a lot of stupidity prevail.


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CockneyRebel
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19 Dec 2011, 7:21 pm

Autism should be defined by autistics and nobody else. The wrong people have been defining it for far too long. I've grown not to trust the experts.


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Ganondox
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19 Dec 2011, 8:51 pm

The problem with saying that only Autists can define autism is that then the definition would be self referential: Who declares who autistic so they can make the definition? A person with blond hair could say that Autism means having blond hair, and they would be correct as by their definition of Autism they are autistic, and by this logic it would mean they have the right to define it.


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TheChamelion
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19 Dec 2011, 9:06 pm

Ganondox wrote:
The problem with saying that only Autists can define autism is that then the definition would be self referential: Who declares who autistic so they can make the definition? A person with blond hair could say that Autism means having blond hair, and they would be correct as by their definition of Autism they are autistic, and by this logic it would mean they have the right to define it.


Because someone would come along one day and get a special interest in psychology, and then may look into how they are so different from NTs. Then they may find others like themselves and because we know how we feel we can then define what is. And obviously the definition would indeed be self referential, however it would be made up of people who are alike and if you're not alike then obviously you wouldn't be part of making the definition..

Having NTs define autism is like us defining them, it will likely end up incorrect... (Not to mention it would be impossible to define it beyond the genetics without having an autistic person explain it, and that would make it a collaboration)

Autistic people defining it, combined with what NTs noticed would probably be the best way to define it.




(Also having an NT define autism would be like NTs making help forums for Autistics, I've always hated them! I understand they are meaning well but they don't know what I'm thinking so why are they giving me advice? (I'm also not saying advice from an NT is not good, It's just that when they try and explain something they don't really know about it just doesn't really work...))


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MindWithoutWalls
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19 Dec 2011, 9:42 pm

I definitely think the best way to determine if a "treatment" is effective or actually abuse is to ask someone who grew up having to endure it!


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btbnnyr
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19 Dec 2011, 9:51 pm

Non-autistic people can only define autism as a set of puzzling behaviors for which they lack the internal contexts of embodied simulation. This definition is what we currently have, and it sucks @$$.



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19 Dec 2011, 10:04 pm

I voted for "C," though even that isn't perfect. One problem with ASD people defining it is the tendency for people to assume that their particular set of traits are the essential or critical ones. I.e "all autistics are good at writing computer code," or "all autistics have a higher than normal IQ," and so on. I think it would take some wisdom to do that well.

OTOH, having only NT's making up the theories willy-nilly is no better.

Ultimately, it's all a big mess, but maybe some balance and cross-fertilization could occur.

Oh, and the point about people experiencing treatments that they found horrible is a good one.