The Cure Question
I've just come from WrongPlanet, and from yet another inevitable discussion--the repetitively posed, "Do you want a cure?" question.
Most people on WP say no. Some say yes. The ironic thing is that it's a question we'll almost certainly never have to answer in real life.
Autism is such a complex disorder that a cure would only be available once we become capable of physically modifying the microstructure and biochemistry of the human brain to the extent of changing any configuration to any other (at which point we will have bigger ethical problems to worry about than just curing autism). What is most likely to happen, with today's autism "cure" research, is that we will find a prenatal test which allows people to abort autistic fetuses (along with the inevitable false-positive non-autistic fetuses), and we will find medications which may make the lives of autistic people easier (or possibly just make the lives of their caretakers easier). A cure for currently existing autistic people simply won't happen--once we find that prenatal test, the research money will go somewhere else.
So the autism cure question is theoretical, but it's increasingly becoming symbolic. It's really not the prospect of a cure that's being discussed when people talk about it; the real question is something more along the lines of, "Should we accept or even treasure having autism; or should we fight autism and accept only the person we would be without it?" It's a question that is fundamental to our identities as autistic people.
No wonder at least one in fifty topics is some variation of, "So, do you want to be cured?"
To answer the question with "No" is to identify with the neurodiversity movement, or at the very least to declare that you think being autistic means there is nothing wrong with you. If you also consider yourself disabled, a "No" can mean that you believe that there is also nothing wrong with being disabled, and that you probably also agree with the disability rights movement. In most cases, it's a statement that you consider autism part of your identity. In some cases, of course, it can just mean that you're sick of people putting you down for having autism, and are feeling angry and defiant and would like them to take their prejudice and stuff it someplace uncomfortable. It can mean that you don't consider autism a disability in the first place, or even consider yourself superior, and don't want to get rid of what you think of as an advantage.
"Yes, I want a cure" can come from many sources. It can be someone who simply believes that autism is like an illness which doesn't affect their personality; they see it as a group of deficits that can be removed without changing them. It can come from someone who believes that disability is inherently negative and autism is a disability, and therefore should be cured. It can be a consequence of poor self-esteem and the desire to get rid of an unacceptable self. It can come from someone who has been very badly mistreated for being autistic, knows that non-autistic people are not generally mistreated this way, and sees removing the autism as a solution to the problem. It can come from someone who has encountered a lot of obstacles due to their autism, and believes that the best solution would be to remove the autism.
But I think your answer to the question matters less than the impact of the question itself on society's acceptance of disability, and of how it handles autism in particular. That society as a whole tends to focus on a cure for autism, rather than acceptance of and integration with autistic people, says a lot about how society sees autism. When the concept of autism is matched with the concept of cure, it is put into the same category as cancer, diabetes, and AIDS--something that's foreign to the person; something that society can't accept. With something like cancer, that makes sense--we don't want people in our society to have cancer; we think of their real selves as the people they are when their heads aren't muddled from treatments, and we encourage them to fight the cancer so that they can go back to their normal lives. That outlook makes sense, for the most part.
But if you look at autism the way you look at cancer, you create a lot of problems. Suddenly you're divorcing the "real person" from the way they think and behave, even though those thoughts and behaviors come from their own brains--brains that are neither injured nor chemically altered from their usual state.
Imagine if people saw developmentally delayed folks that way. Little Johnny's inability to read at the age of nine is a "symptom", and he needs "intensive treatment" to be "cured". His failure to dress himself until the age of six is a "behavior" that needs to be handled. His struggle with the multiplication tables in high school is something that's thought of as detachable from his "true self"--the person Johnny would be without his "illness". If he could only be cured, Johnny could become a doctor or a lawyer. While he's "sick", Johnny will never be truly happy.
It hasn't been long since we learned that instead of trying to turn Johnny into a typical boy, it made a great deal more sense to teach him what he could learn and hire him for a job he could do. Turns out we've been underestimating the people we used to brand with their IQs and push into boxes labeled with what we thought they couldn't do. Turns out there's nothing stopping them from living their lives and having as good a chance at happiness as any other human being out there. Maybe that's even scary for some people because it means they have to throw out the idea that intelligence makes you superior.
But we still haven't got that point with autism. Autism is similar--there are things we can't do, things we learn more slowly, things we have to be shown how to do. There are unexpected skills, too, sometimes even in the fascinating form of savant skills (actually, half of savants are autistic; the other half are developmentally delayed). Autistic people learn differently and usually require small adjustments at school and work. Just like developmentally delayed people (and yes, I'm aware there's overlap), most autistic people can work, and the lives of those that can't aren't any less meaningful. A life with autism can be a happy, useful, fulfilling life, in no way inferior to a typical one.
I firmly believe that acceptance is possible; but standing in the way of that acceptance is the "cure mentality"--the idea that the best thing for an autistic person is to be cured of autism.
If people assume that the best possible thing for an autistic person is a cure, then they will see autistic people the way they see people with an illness--people are better off without the illness; the illness is something extra, something that isn't part of them; the goal of their lives should be to get rid of the illness so they can live a normal life again. Living your life, pursuing your goals, while also happening to be autistic seems odd to anyone who's bought into the cure mentality. "Get well," they say, "and then you can do what you were meant to do." No wonder they think autism is a dead-end life!
That there isn't a cure doesn't do anything to change the effect of focusing on one. If a cure is the goal, then there won't be very much effort to let autistic people live good lives as autistic people. There won't be much effort to educate them, or to accommodate them in the workplace, or to include them in the community. There'll just be a search for a cure; and autistic people will be presumed to be waiting around until the cure comes and they can live lives as normal people.
On the other hand, if a cure is not the goal, then you have to deal with the reality of autistic people living in this world as autistic people--not just as people who are sick and waiting for a cure. You have to deal with educating autistic children; you have to deal with the services autistic adults need; you have to deal with teaching non-autistics to live and work side-by-side with the autistic members of their communities. If you aren't focusing on a cure, then your goal becomes the acceptance of diversity.
To focus on a cure when there is no cure is a very good way of saying, "We don't want autistic people in our community; we don't want to have to deal with the hassle; we don't want to have to deal with people who are different. We just want them cured so that they will be like us."
Most people on WP say no. Some say yes. The ironic thing is that it's a question we'll almost certainly never have to answer in real life.
Autism is such a complex disorder that a cure would only be available once we become capable of physically modifying the microstructure and biochemistry of the human brain to the extent of changing any configuration to any other (at which point we will have bigger ethical problems to worry about than just curing autism). What is most likely to happen, with today's autism "cure" research, is that we will find a prenatal test which allows people to abort autistic fetuses (along with the inevitable false-positive non-autistic fetuses), and we will find medications which may make the lives of autistic people easier (or possibly just make the lives of their caretakers easier). A cure for currently existing autistic people simply won't happen--once we find that prenatal test, the research money will go somewhere else.
So the autism cure question is theoretical, but it's increasingly becoming symbolic. It's really not the prospect of a cure that's being discussed when people talk about it; the real question is something more along the lines of, "Should we accept or even treasure having autism; or should we fight autism and accept only the person we would be without it?" It's a question that is fundamental to our identities as autistic people.
No wonder at least one in fifty topics is some variation of, "So, do you want to be cured?"
To answer the question with "No" is to identify with the neurodiversity movement, or at the very least to declare that you think being autistic means there is nothing wrong with you. If you also consider yourself disabled, a "No" can mean that you believe that there is also nothing wrong with being disabled, and that you probably also agree with the disability rights movement. In most cases, it's a statement that you consider autism part of your identity. In some cases, of course, it can just mean that you're sick of people putting you down for having autism, and are feeling angry and defiant and would like them to take their prejudice and stuff it someplace uncomfortable. It can mean that you don't consider autism a disability in the first place, or even consider yourself superior, and don't want to get rid of what you think of as an advantage.
"Yes, I want a cure" can come from many sources. It can be someone who simply believes that autism is like an illness which doesn't affect their personality; they see it as a group of deficits that can be removed without changing them. It can come from someone who believes that disability is inherently negative and autism is a disability, and therefore should be cured. It can be a consequence of poor self-esteem and the desire to get rid of an unacceptable self. It can come from someone who has been very badly mistreated for being autistic, knows that non-autistic people are not generally mistreated this way, and sees removing the autism as a solution to the problem. It can come from someone who has encountered a lot of obstacles due to their autism, and believes that the best solution would be to remove the autism.
But I think your answer to the question matters less than the impact of the question itself on society's acceptance of disability, and of how it handles autism in particular. That society as a whole tends to focus on a cure for autism, rather than acceptance of and integration with autistic people, says a lot about how society sees autism. When the concept of autism is matched with the concept of cure, it is put into the same category as cancer, diabetes, and AIDS--something that's foreign to the person; something that society can't accept. With something like cancer, that makes sense--we don't want people in our society to have cancer; we think of their real selves as the people they are when their heads aren't muddled from treatments, and we encourage them to fight the cancer so that they can go back to their normal lives. That outlook makes sense, for the most part.
But if you look at autism the way you look at cancer, you create a lot of problems. Suddenly you're divorcing the "real person" from the way they think and behave, even though those thoughts and behaviors come from their own brains--brains that are neither injured nor chemically altered from their usual state.
Imagine if people saw developmentally delayed folks that way. Little Johnny's inability to read at the age of nine is a "symptom", and he needs "intensive treatment" to be "cured". His failure to dress himself until the age of six is a "behavior" that needs to be handled. His struggle with the multiplication tables in high school is something that's thought of as detachable from his "true self"--the person Johnny would be without his "illness". If he could only be cured, Johnny could become a doctor or a lawyer. While he's "sick", Johnny will never be truly happy.
It hasn't been long since we learned that instead of trying to turn Johnny into a typical boy, it made a great deal more sense to teach him what he could learn and hire him for a job he could do. Turns out we've been underestimating the people we used to brand with their IQs and push into boxes labeled with what we thought they couldn't do. Turns out there's nothing stopping them from living their lives and having as good a chance at happiness as any other human being out there. Maybe that's even scary for some people because it means they have to throw out the idea that intelligence makes you superior.
But we still haven't got that point with autism. Autism is similar--there are things we can't do, things we learn more slowly, things we have to be shown how to do. There are unexpected skills, too, sometimes even in the fascinating form of savant skills (actually, half of savants are autistic; the other half are developmentally delayed). Autistic people learn differently and usually require small adjustments at school and work. Just like developmentally delayed people (and yes, I'm aware there's overlap), most autistic people can work, and the lives of those that can't aren't any less meaningful. A life with autism can be a happy, useful, fulfilling life, in no way inferior to a typical one.
I firmly believe that acceptance is possible; but standing in the way of that acceptance is the "cure mentality"--the idea that the best thing for an autistic person is to be cured of autism.
If people assume that the best possible thing for an autistic person is a cure, then they will see autistic people the way they see people with an illness--people are better off without the illness; the illness is something extra, something that isn't part of them; the goal of their lives should be to get rid of the illness so they can live a normal life again. Living your life, pursuing your goals, while also happening to be autistic seems odd to anyone who's bought into the cure mentality. "Get well," they say, "and then you can do what you were meant to do." No wonder they think autism is a dead-end life!
That there isn't a cure doesn't do anything to change the effect of focusing on one. If a cure is the goal, then there won't be very much effort to let autistic people live good lives as autistic people. There won't be much effort to educate them, or to accommodate them in the workplace, or to include them in the community. There'll just be a search for a cure; and autistic people will be presumed to be waiting around until the cure comes and they can live lives as normal people.
On the other hand, if a cure is not the goal, then you have to deal with the reality of autistic people living in this world as autistic people--not just as people who are sick and waiting for a cure. You have to deal with educating autistic children; you have to deal with the services autistic adults need; you have to deal with teaching non-autistics to live and work side-by-side with the autistic members of their communities. If you aren't focusing on a cure, then your goal becomes the acceptance of diversity.
To focus on a cure when there is no cure is a very good way of saying, "We don't want autistic people in our community; we don't want to have to deal with the hassle; we don't want to have to deal with people who are different. We just want them cured so that they will be like us."