05-14-2006, 10:27 PM
05-14-2006, 10:37 PM
Acceptance versus cure
By Sue Rubin
The argument dividing the autism community regarding the need to cure autism as opposed to accepting autistic people as a natural expression of diversity has been on my mind a lot lately. The possibility that I could be very autistic for the rest of my life always upsets me. Therefore, when people talk about a cure I actually love to hear it. To be realistic, I know I will never be cured. The cause of my autism is a genetic anomaly and can't be changed.
The rift in the autism community basically is between what we label high-functioning and low-functioning people. High-functioning people speak and low-functioning people don't. The people with Asperger's syndrome, also a type of autism, love to talk; however, their very narrow areas of interest give them away. These people are the ones who are offended by the idea of a cure. They could pass for normal although for them, sallying in a normal group is like an uptown elder at a rap concert. They listen only to people who please them and only speak to inform others about their interests. Social skills are difficult to master. I believe the idea that they should be cured is wrong. They are different, but basically are just a variation of the norm and should be accepted as such. Some even have exceptional abilities that should be celebrated and encouraged.
As a low-functioning autistic person who is still really awash in autism, I actually am aligned with the cure group, although I will not personally benefit if a cure is found. Low-functioning people are just trying to get through the day without hurting, tapping, flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really would be wonderful.
Since this is not going to happen, I am resigned to living my life as it is -- a constant struggle. When I have to mask autism in class it takes a tremendous amount of effort. When I see the other students sitting calmly or chatting or answering questions so easily, I'm really jealous. When I had to stop awful autistic behaviors like head-banging, it took a tremendous amount of effort over years. When I see people living normal lives, I am jealous. When I am really lost in autism and can't inhibit behaviors that annoy staff, I deflect anger from myself to them and create bad feelings. When I see how normal people interact with their friends I am jealous.
As a person who lives with autism daily and will not live a normal life, I find people who are high functioning and saying society should not look for a cure offensive. They have no idea what our lives are like. Killing autism lets me enjoy a life with great friends and allows me to go to college, but I must never let down my guard or autism will take over. I don't want any more children to live, as I must, in this constant state of war.
By Sue Rubin
The argument dividing the autism community regarding the need to cure autism as opposed to accepting autistic people as a natural expression of diversity has been on my mind a lot lately. The possibility that I could be very autistic for the rest of my life always upsets me. Therefore, when people talk about a cure I actually love to hear it. To be realistic, I know I will never be cured. The cause of my autism is a genetic anomaly and can't be changed.
The rift in the autism community basically is between what we label high-functioning and low-functioning people. High-functioning people speak and low-functioning people don't. The people with Asperger's syndrome, also a type of autism, love to talk; however, their very narrow areas of interest give them away. These people are the ones who are offended by the idea of a cure. They could pass for normal although for them, sallying in a normal group is like an uptown elder at a rap concert. They listen only to people who please them and only speak to inform others about their interests. Social skills are difficult to master. I believe the idea that they should be cured is wrong. They are different, but basically are just a variation of the norm and should be accepted as such. Some even have exceptional abilities that should be celebrated and encouraged.
As a low-functioning autistic person who is still really awash in autism, I actually am aligned with the cure group, although I will not personally benefit if a cure is found. Low-functioning people are just trying to get through the day without hurting, tapping, flailing, biting, screaming, etc. The thought of a gold pot of a potion with a cure really would be wonderful.
Since this is not going to happen, I am resigned to living my life as it is -- a constant struggle. When I have to mask autism in class it takes a tremendous amount of effort. When I see the other students sitting calmly or chatting or answering questions so easily, I'm really jealous. When I had to stop awful autistic behaviors like head-banging, it took a tremendous amount of effort over years. When I see people living normal lives, I am jealous. When I am really lost in autism and can't inhibit behaviors that annoy staff, I deflect anger from myself to them and create bad feelings. When I see how normal people interact with their friends I am jealous.
As a person who lives with autism daily and will not live a normal life, I find people who are high functioning and saying society should not look for a cure offensive. They have no idea what our lives are like. Killing autism lets me enjoy a life with great friends and allows me to go to college, but I must never let down my guard or autism will take over. I don't want any more children to live, as I must, in this constant state of war.
05-14-2006, 10:43 PM
She is showing her own ignorance of people classed as high functioning if she thinks we can all pass as normal.
And also if she thinks we can all sit in a classroom and other people think we are normal. That is NOT the case, just because some of us can accept our differences, and not want a cure, does not mean that its because we are so close to normal that we have some kind of camouflage.
As a person who lives with autism daily and will not live a normal life, I find people who are high functioning and saying society should not look for a cure offensive. They have no idea what our lives are like. Killing autism lets me enjoy a life with great friends and allows me to go to college, but I must never let down my guard or autism will take over.
She has great friends, I dont - should I claim she has no idea what 'our lives are like'?
I was prevented from continuing in college from bullying because I was different, high and low functioning are just 2 sides of the same coin.
And also if she thinks we can all sit in a classroom and other people think we are normal. That is NOT the case, just because some of us can accept our differences, and not want a cure, does not mean that its because we are so close to normal that we have some kind of camouflage.
As a person who lives with autism daily and will not live a normal life, I find people who are high functioning and saying society should not look for a cure offensive. They have no idea what our lives are like. Killing autism lets me enjoy a life with great friends and allows me to go to college, but I must never let down my guard or autism will take over.
She has great friends, I dont - should I claim she has no idea what 'our lives are like'?
I was prevented from continuing in college from bullying because I was different, high and low functioning are just 2 sides of the same coin.
05-14-2006, 10:49 PM
I must agree, I think it sounds like she has grass is greener syndrome when looking at the high functioning end of the spectrum.
05-14-2006, 11:20 PM
There's also the double edged sword action of a cure.
Say they invented a cure. Would the cure be made available:
A) Purely to low functioning Autistics who have specificlly requested the cure, or...
B) Administered at a young age to everyone with a possible diagnosis, so they grow up to be "normal upstanding citizens", and are never divided into high and low functioning.
A "cure" more likely would be eugenic in nature anyway, so you wouldn't be curing "low functioning", youˇ'd be curing high and low functining simultaneously (And in the process probably "cure" the next einstein)
Say they invented a cure. Would the cure be made available:
A) Purely to low functioning Autistics who have specificlly requested the cure, or...
B) Administered at a young age to everyone with a possible diagnosis, so they grow up to be "normal upstanding citizens", and are never divided into high and low functioning.
A "cure" more likely would be eugenic in nature anyway, so you wouldn't be curing "low functioning", youˇ'd be curing high and low functining simultaneously (And in the process probably "cure" the next einstein)
05-15-2006, 02:51 AM
Sue Rubin doesn't really understand what it's like to really deal with autism. She had all the help in the world from her parents while so many autistics like myself aren't so lucky. I don't think there is one aspect of that stupid little documentary that most autistics can relate to...it's just claptrap for the parents to enjoy.
05-15-2006, 03:29 AM
There must be millions of auties and aspies out there.
all have had very different life experiences. therefore it isn't suprising that some low functioning or high functioning will be anti-cure while others will be pro cure. i dont think any of us anywhere can say Hey look, i understand autism, you dont.
she is very mistaken about high functioning and low functioning though, esp since i think the term is quite arbitary. she has a very sterotypical view of AS as well.
all have had very different life experiences. therefore it isn't suprising that some low functioning or high functioning will be anti-cure while others will be pro cure. i dont think any of us anywhere can say Hey look, i understand autism, you dont.
she is very mistaken about high functioning and low functioning though, esp since i think the term is quite arbitary. she has a very sterotypical view of AS as well.
05-15-2006, 04:27 AM
I wonder if it would be on CNN if it was anti-cure.
05-15-2006, 02:47 PM
and to add, it's both our worlds....we all have to adjust in some way, but nethier should be forced to become completly the same as the other. i wouldn't expect my peers to act exactly the same as me, or vice versa. the key is to work in harmony so that we apprecate these diffrences.
05-16-2006, 01:43 AM
Amy Wrote:
As a person who lives with autism daily and will not live a normal life, I find people who are high functioning and saying society should not look for a cure offensive.
Yet she has no idea how much her claiming to understand my "high-functioning" life is offensive to me.
I feel much of those feelings when I see "normal" people behaving "normally" with their "normal" friends.
Social skills are difficult to master. Just because I can speak doesn't mean I've "mastered" anything.
:evil: :evil:
I wish someone could show her that she can wish for treatment without wishing for a cure.
05-16-2006, 07:56 AM
I assumed that low-functioning autistics were the lucky ones because they lacked self-awareness and didn't know the same feeling of isolation. Looks like I was wrong.
05-16-2006, 08:19 AM
Sue Wrote:
These people are the ones who are offended by the idea of a cure. They could pass for normal although for them, sallying in a normal group is like an uptown elder at a rap concert.
You call THAT music? You youngsters don't KNOW good music! (Hee hee) :lol:
BTW, how is the writer of the above "low-functioning"? She seems to have an excellent grasp of language and social contexts. (Perhaps she's an NT who's PRETENDING :shock: :shock: :shock: )
Alison
05-16-2006, 03:17 PM
Alison Wrote:
Sue Wrote:
These people are the ones who are offended by the idea of a cure. They could pass for normal although for them, sallying in a normal group is like an uptown elder at a rap concert.
You call THAT music? You youngsters don't KNOW good music! (Hee hee) :lol:
BTW, how is the writer of the above "low-functioning"? She seems to have an excellent grasp of language and social contexts. (Perhaps she's an NT who's PRETENDING :shock: :shock: :shock: )
Alison
She is non-verbal, she has an additional condition that is genetic (can't remember the name offhand).
She was not able to communicate until her mother introduced her to facilitated communication, which uses a board I think.