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A Battle That Can’t Be Won: Autism Cure v. Neurodiversity
October 1, 2012 by Tim Villegas at Thinkinclusive.us
I did something I slightly regret. I joined in the fight for a battle that can’t be won.
This is the battle between those who advocate for a “cure” for autism and those who are offended by the term’s very existence.
To be honest…I have spent enough energy “debating” this on Twitter (not such a good forum for real discussion) so I thought I would put some thoughts out in the blogosphere. I am not autistic, nor do I have a disability. I am what people in the neurodiversity community call “neurotypical” (NT ). But I am a stakeholder. I have been a teacher for students with severe disabilities for close to a decade…which included time working exclusively with students with autism (most of which were non-verbal). I also have close relatives who have autism and other intellectual disabilities.
That being said…I am not sure what I can really say that will make that much of a difference in this debate between parents and organizations who desire a “cure” for autism and self-advocates who feel an assault on their dignity as human beings.
Lynne Soraya (author of Aperger’s Diary at Psychology Today) shared an article called “Getting To The Root Of It” with me that she said she wrote a few years ago that addresses this issue. She has kindly given me permission to quote from it. I appreciate the spirit in which this article is written…even when there are issues or people I disagree with, understanding is more important to me than agreement.
When we talk of a cure for autism, what are we talking about? And, are we all defining it the same way? From what I have read, I suspect not.
"Personally, I’ve given a lot of thought to the question of a cure… If I could wave a magic wand, and be “normal” – would I want to be? Some days, yes, some days no. I do see compensating ability in how I am, and it’s all I’ve ever known. Do I watch groups of friends, easily and comfortably conversing in a crowded restaurant, and feel lonely? Sometimes. Maybe a bit jealous? Yes.
Inherently, I tend to believe that my condition is a bit of a trade off…that I have had to give up some of the things I miss in order to have the things that I do well. Perhaps that’s just compensating, or rationalizing – I don’t know. If there was some cure that would take away my disabilities, while leaving what I consider the “benefits” of my Asperger’s intact – would I take it? Probably."
This I believe is where advocates for a cure and self-advocates who do not want to cured (or discarded) have a miscommunication problem. What IS the definition of cure? I believe that when we really listen to each other…we might not be too far off.
" Some time ago, I watched a documentary called “Behind the Glass Door: Hannah’s Story.” Watching it, it was clear that the family’s and filmmaker’s viewpoint was focused on a cure. Marketed, in part, as a religious movie (although I didn’t realize that when I picked it up), I was surprised that it also went down a road that many neurodiversity advocates find egregious. In it, the mother of the profiled child openly discussed her moments of despair in which she struggled not to kill her daughter. Somewhat shocking fare for a Christian film.
Watching it, though, I began to notice something. What the parents, and professionals in the film called a cure, was not what I called a cure. What they called a “cured” child, was a child that had, through treatments and other interventions, had improved enough that they could function in the world. I cannot argue with that. After all, someone (many someones) did that for me, or I wouldn’t be where I am today.
When I read the blogs of some who oppose neurodiversity – comments I read seem to indicate that the belief is that no cure means no assistance, no training, no treatment. That neurodiversity means that children who can’t talk, smear feces and face institutionalization should be cut adrift. I may be totally missing it, but I just don’t think that that is what advocates of neurodiversity are saying. When I read about neurodiversity, two major issues seem to be at the crux…acceptance, understanding, and tolerance of autistic people; and the intrinsic value of autistic people as a member of society, regardless of the level of functioning.
Can those two things coexist with pursuing treatments to better an autistic person’s life? I think so."
This…I believe is where we sometimes miss the forest for the trees (so sorry about the archaic idiom). Advocates on both sides are so dedicated to making and winning the argument…we fail to build consensus and understanding. For me…I tend to lean toward self-advocates who detest the language of “curing” autism. This does not mean though that I am not sympathetic to parents who advocate for treatment for their children (especially those kids with severe autism). In my perspective…anything that is going to help children with disabilities get prepared for integrated life with their family and community is my goal.
Here is the final paragraph of Lynne’s piece.
"With no cure forthcoming in the near future, I came to realize that the only way for me to get on with my life was to focus on what I have, make the most of it, and cultivate hope. In the end that’s what changed my life – and, in a way, was its own cure."
Either side of the argument you are on…”cultivating hope” is the best choice. Vitriol and name-calling don’t get us anywhere in politics…it will not get us anywhere in the autism community either.
- See more at: http://www.thinkinclusive.us/a-battle-that-cant-be-won-autism-cure-v-neurodiversity/#sthash.cELElmQq.dpuf
October 1, 2012 by Tim Villegas at Thinkinclusive.us
I did something I slightly regret. I joined in the fight for a battle that can’t be won.
This is the battle between those who advocate for a “cure” for autism and those who are offended by the term’s very existence.
To be honest…I have spent enough energy “debating” this on Twitter (not such a good forum for real discussion) so I thought I would put some thoughts out in the blogosphere. I am not autistic, nor do I have a disability. I am what people in the neurodiversity community call “neurotypical” (NT ). But I am a stakeholder. I have been a teacher for students with severe disabilities for close to a decade…which included time working exclusively with students with autism (most of which were non-verbal). I also have close relatives who have autism and other intellectual disabilities.
That being said…I am not sure what I can really say that will make that much of a difference in this debate between parents and organizations who desire a “cure” for autism and self-advocates who feel an assault on their dignity as human beings.
Lynne Soraya (author of Aperger’s Diary at Psychology Today) shared an article called “Getting To The Root Of It” with me that she said she wrote a few years ago that addresses this issue. She has kindly given me permission to quote from it. I appreciate the spirit in which this article is written…even when there are issues or people I disagree with, understanding is more important to me than agreement.
When we talk of a cure for autism, what are we talking about? And, are we all defining it the same way? From what I have read, I suspect not.
"Personally, I’ve given a lot of thought to the question of a cure… If I could wave a magic wand, and be “normal” – would I want to be? Some days, yes, some days no. I do see compensating ability in how I am, and it’s all I’ve ever known. Do I watch groups of friends, easily and comfortably conversing in a crowded restaurant, and feel lonely? Sometimes. Maybe a bit jealous? Yes.
Inherently, I tend to believe that my condition is a bit of a trade off…that I have had to give up some of the things I miss in order to have the things that I do well. Perhaps that’s just compensating, or rationalizing – I don’t know. If there was some cure that would take away my disabilities, while leaving what I consider the “benefits” of my Asperger’s intact – would I take it? Probably."
This I believe is where advocates for a cure and self-advocates who do not want to cured (or discarded) have a miscommunication problem. What IS the definition of cure? I believe that when we really listen to each other…we might not be too far off.
" Some time ago, I watched a documentary called “Behind the Glass Door: Hannah’s Story.” Watching it, it was clear that the family’s and filmmaker’s viewpoint was focused on a cure. Marketed, in part, as a religious movie (although I didn’t realize that when I picked it up), I was surprised that it also went down a road that many neurodiversity advocates find egregious. In it, the mother of the profiled child openly discussed her moments of despair in which she struggled not to kill her daughter. Somewhat shocking fare for a Christian film.
Watching it, though, I began to notice something. What the parents, and professionals in the film called a cure, was not what I called a cure. What they called a “cured” child, was a child that had, through treatments and other interventions, had improved enough that they could function in the world. I cannot argue with that. After all, someone (many someones) did that for me, or I wouldn’t be where I am today.
When I read the blogs of some who oppose neurodiversity – comments I read seem to indicate that the belief is that no cure means no assistance, no training, no treatment. That neurodiversity means that children who can’t talk, smear feces and face institutionalization should be cut adrift. I may be totally missing it, but I just don’t think that that is what advocates of neurodiversity are saying. When I read about neurodiversity, two major issues seem to be at the crux…acceptance, understanding, and tolerance of autistic people; and the intrinsic value of autistic people as a member of society, regardless of the level of functioning.
Can those two things coexist with pursuing treatments to better an autistic person’s life? I think so."
This…I believe is where we sometimes miss the forest for the trees (so sorry about the archaic idiom). Advocates on both sides are so dedicated to making and winning the argument…we fail to build consensus and understanding. For me…I tend to lean toward self-advocates who detest the language of “curing” autism. This does not mean though that I am not sympathetic to parents who advocate for treatment for their children (especially those kids with severe autism). In my perspective…anything that is going to help children with disabilities get prepared for integrated life with their family and community is my goal.
Here is the final paragraph of Lynne’s piece.
"With no cure forthcoming in the near future, I came to realize that the only way for me to get on with my life was to focus on what I have, make the most of it, and cultivate hope. In the end that’s what changed my life – and, in a way, was its own cure."
Either side of the argument you are on…”cultivating hope” is the best choice. Vitriol and name-calling don’t get us anywhere in politics…it will not get us anywhere in the autism community either.
- See more at: http://www.thinkinclusive.us/a-battle-that-cant-be-won-autism-cure-v-neurodiversity/#sthash.cELElmQq.dpuf