Should There Ever be a Cure for Autism, Don't EVER Talk to me About Choice
Original Post: June 18, 2006
A while ago, I was talking with a person about the possibility of a cure for autism. This person mentioned that it was understood I had a very anti-cure position, but that a cure should be available for those who wanted it.
Not to bash the person who said this to me, but I honestly think that most people who think this way can no longer afford to be so naive. After all, a certain man named Dr. Bauxbaum is developing a prenatal test for autism. He tells us he's creating the test for seeking early intervention. Yet I haven't seen that he has contributed any way to POSITIVE awareness about autism (instead of just reiterating stereotypical traits). Without the follow-up, even if he did not want autistics to die, Dr. Bauxbaum would still be an accessory to one of the largest eugenics movements in history should a pre-natal test for autism follow through. After all, we can use a controlled nuclear reaction to power 100,000 homes. Or we can use the same reaction to build a bomb that destroys that many homes and many more lives. We have to follow-up and ensure that what we create is used responsibly.
SUPPOSE a cure for autism is found. And let us suppose that it is a cure that can be reasonably safely performed on a person. It'd have to be some kind of re-wiring surgery, since autism has to do with neurological wiring. And let us assume that such a procedure can turn an autistic person into a neurologically typical person, COMPLETELY indistinguishable from his/her peers (like Lovaas' dream). And people were offered a choice. Would this be a genuine choice? No more than I can cast spells and make pigs fly.
A cure for autism will give society even more reason to keep the autistic man (or woman for that matter) down. It will only lead to more discrimination against those who even feel the slightest bit of self-acceptance about their condition. Here is why I feel that the possibility for choice in getting the cure is fundamentally flawed:
1) Consent- Autism is a condition that first occurs in childhood and can evolve into a life-long difference. Normally, autism is diagnosed at around age 3 (although many places can do it earlier). Children of such young age are unable to give INFORMED consent on their own about medical conditions. Pediatricians know this, and HAVE to rely on parents as the child's best experts. Do you think parents are going to allow their child to go on an alternative developmental pathway that entails more difficulty? Do you think most parents can shake off the negativity most of what autism marketing has placed in their shoulders? Many parents would probably administer the cure in a heartbeat. How can it be a decision made and confirmed by the person most affected by it, the autistic him/herself?
2) Educational Support- If a cure for autism comes along, do you think schools would need special education services to accomodate different learning needs if a simple procedure can mainstream an autistic kid? With a cure, autism would by definition be pathologized. So many people, especially in the Canadian Autism Societies, have made assumptions that autistics can't learn and will be doomed unless they get drastic alteration. You've probably heard of a case where a young Aspie boy named Charles Rankowski was banned from a school playground simply on the grounds that he was autistic. They school district felt troubled by him and had him followed by a psychologist when he returned. If any other child misbehaved on the playground, they would be banned for just a few days and be able to return later. Even if Charles Rankowski did something typically wrong on the playground, he shouldn't have been singled out and profiled like a ticking time bomb. We've seen such discriminatory acts before. So what's not to prevent the following? What is to prevent schools from adopting more discriminatory measures based on a pathologized autism? Schools already require children be vaccinated for certain infectious agents that are commonly spread. Why not require that children be cure of autism before they go into kindergarten? They're "weirdness" can SERIOUSLY endanger the lives of other children and encourage them to become weird, sociopathic maniacs. And let's eliminate home-schooling as an alternative. Any autistic person not showing a diploma from a registered high school that required them to be cured as a pre-requisite can consider anything they can speak as INVALID and WRONG, even if it is the plain obvious truth. The HS diploma will probably also be the only way to enter college, thus eliminating any alternative path to higher education. Thus, autistics cannot speak about themselves on anything, since nothing they tell counts as the truth because they are un-(standard educated). Oh I'm sorry, uncured autisitics are presumed NOT to speak! Although autism is not contagious, bigotry sure is.
3) The Job Scene- There will be no reason to enact legislation to prevent employment discrimination against neurological minorities. Don't follow a strict set of "typical" behaviors or are a social expert? Don't get the job I offer. You have to memorize every little social detail and double standard that does not makes sense before you enter most jobs. Oh, if you're in the job I offer, you bring it upon yourself when you fellow workers harass you. Just go get the cure or just stop acting so WEIRD! And if you don't stop coming to me about this, YOU'RE FIRED!
4) The Extermination- Autistic citizens will either be forgotten in institutions by their parents or when they grow up for forced to become normal. Or possibly those who refuse to surrender their individuality will not be considered educated and may not be able to get a job. Autistics already have a higher risk of depression, from society's hatred. Maybe others will kill non-conforming autistics even more as a threat, much like the lynchings of African-Americans in the early days after slavery was abolished. In childhood, in institutions, or just out of pure malice in the middle of the street. Many autistic persons may kill themselves to end the life that most people would label a "travesty". Law enforcement will only pay lip service; criminals will get off with a slap on the wrist. Maybe a pre-natal test will be developed too and the extermination will extend to the womb. If either in personality or in flesh and blood, autistic will die because a cure has come along.
What is mostly seen as a victory in public health can also be seen as humanity treating part of itself as less than human. The next time you think about this issue, DON'T YOU DARE TELL ME IF THERE IS SUCH A THING AS CHOICE WHEN IT COMES TO THE AUTISTIC GENOCIDE.
A while ago, I was talking with a person about the possibility of a cure for autism. This person mentioned that it was understood I had a very anti-cure position, but that a cure should be available for those who wanted it.
Not to bash the person who said this to me, but I honestly think that most people who think this way can no longer afford to be so naive. After all, a certain man named Dr. Bauxbaum is developing a prenatal test for autism. He tells us he's creating the test for seeking early intervention. Yet I haven't seen that he has contributed any way to POSITIVE awareness about autism (instead of just reiterating stereotypical traits). Without the follow-up, even if he did not want autistics to die, Dr. Bauxbaum would still be an accessory to one of the largest eugenics movements in history should a pre-natal test for autism follow through. After all, we can use a controlled nuclear reaction to power 100,000 homes. Or we can use the same reaction to build a bomb that destroys that many homes and many more lives. We have to follow-up and ensure that what we create is used responsibly.
SUPPOSE a cure for autism is found. And let us suppose that it is a cure that can be reasonably safely performed on a person. It'd have to be some kind of re-wiring surgery, since autism has to do with neurological wiring. And let us assume that such a procedure can turn an autistic person into a neurologically typical person, COMPLETELY indistinguishable from his/her peers (like Lovaas' dream). And people were offered a choice. Would this be a genuine choice? No more than I can cast spells and make pigs fly.
A cure for autism will give society even more reason to keep the autistic man (or woman for that matter) down. It will only lead to more discrimination against those who even feel the slightest bit of self-acceptance about their condition. Here is why I feel that the possibility for choice in getting the cure is fundamentally flawed:
1) Consent- Autism is a condition that first occurs in childhood and can evolve into a life-long difference. Normally, autism is diagnosed at around age 3 (although many places can do it earlier). Children of such young age are unable to give INFORMED consent on their own about medical conditions. Pediatricians know this, and HAVE to rely on parents as the child's best experts. Do you think parents are going to allow their child to go on an alternative developmental pathway that entails more difficulty? Do you think most parents can shake off the negativity most of what autism marketing has placed in their shoulders? Many parents would probably administer the cure in a heartbeat. How can it be a decision made and confirmed by the person most affected by it, the autistic him/herself?
2) Educational Support- If a cure for autism comes along, do you think schools would need special education services to accomodate different learning needs if a simple procedure can mainstream an autistic kid? With a cure, autism would by definition be pathologized. So many people, especially in the Canadian Autism Societies, have made assumptions that autistics can't learn and will be doomed unless they get drastic alteration. You've probably heard of a case where a young Aspie boy named Charles Rankowski was banned from a school playground simply on the grounds that he was autistic. They school district felt troubled by him and had him followed by a psychologist when he returned. If any other child misbehaved on the playground, they would be banned for just a few days and be able to return later. Even if Charles Rankowski did something typically wrong on the playground, he shouldn't have been singled out and profiled like a ticking time bomb. We've seen such discriminatory acts before. So what's not to prevent the following? What is to prevent schools from adopting more discriminatory measures based on a pathologized autism? Schools already require children be vaccinated for certain infectious agents that are commonly spread. Why not require that children be cure of autism before they go into kindergarten? They're "weirdness" can SERIOUSLY endanger the lives of other children and encourage them to become weird, sociopathic maniacs. And let's eliminate home-schooling as an alternative. Any autistic person not showing a diploma from a registered high school that required them to be cured as a pre-requisite can consider anything they can speak as INVALID and WRONG, even if it is the plain obvious truth. The HS diploma will probably also be the only way to enter college, thus eliminating any alternative path to higher education. Thus, autistics cannot speak about themselves on anything, since nothing they tell counts as the truth because they are un-(standard educated). Oh I'm sorry, uncured autisitics are presumed NOT to speak! Although autism is not contagious, bigotry sure is.
3) The Job Scene- There will be no reason to enact legislation to prevent employment discrimination against neurological minorities. Don't follow a strict set of "typical" behaviors or are a social expert? Don't get the job I offer. You have to memorize every little social detail and double standard that does not makes sense before you enter most jobs. Oh, if you're in the job I offer, you bring it upon yourself when you fellow workers harass you. Just go get the cure or just stop acting so WEIRD! And if you don't stop coming to me about this, YOU'RE FIRED!
4) The Extermination- Autistic citizens will either be forgotten in institutions by their parents or when they grow up for forced to become normal. Or possibly those who refuse to surrender their individuality will not be considered educated and may not be able to get a job. Autistics already have a higher risk of depression, from society's hatred. Maybe others will kill non-conforming autistics even more as a threat, much like the lynchings of African-Americans in the early days after slavery was abolished. In childhood, in institutions, or just out of pure malice in the middle of the street. Many autistic persons may kill themselves to end the life that most people would label a "travesty". Law enforcement will only pay lip service; criminals will get off with a slap on the wrist. Maybe a pre-natal test will be developed too and the extermination will extend to the womb. If either in personality or in flesh and blood, autistic will die because a cure has come along.
What is mostly seen as a victory in public health can also be seen as humanity treating part of itself as less than human. The next time you think about this issue, DON'T YOU DARE TELL ME IF THERE IS SUCH A THING AS CHOICE WHEN IT COMES TO THE AUTISTIC GENOCIDE.
posted by MeridiusMD899 at
10:12 AM
8 Comments:
It looks like CAN can't spell "spina bifida," either.
By
Camille, at 8:14 PM
great blog - applies to all not just this bit, have read it right through,
thanks
By
dinah, at 12:39 AM
"You've probably heard of a case where a young Aspie boy named Charles Rankowski was banned from a school playground simply on the grounds that he was autistic."
I don't want to seem arsey, but the lad's name is Jan. Charles is, I think, his dad's name.
"They school district felt troubled by him and had him followed by a psychologist when he returned."
This, as a psychologist myself, is something that I find disturbing and, quite possible, ethically wrong. In effect, and assessment was being conducted on the boy without his consent or that of his parents.
"If any other child misbehaved on the playground, they would be banned for just a few days and be able to return later."
Maybe not even that...
"Even if Charles Rankowski did something typically wrong on the playground, he shouldn't have been singled out and profiled like a ticking time bomb."
This sort of case I have actually been called in to review in my home town of Kotka, Finland. Young boy, Aspie, being bullied by his peers but ening up being singled out as the behavioural problem kid. The school was adamant that it knew how to deal with Asperger syndrome children and that it didn't need outside consultation - not from me ( was not called in until later in the case), but rather from a reasonable consultancy organisation in Jyväskylä - to know what to do with this lad.
The school had him in social isolation for an incredibly long period of time. When the Jyväskylä group had him there for an assessment visit, he was found not to be a risk; but what had been happenign was that other kids had been provoking certain behaviours in the lad, and the school was reacting to those rather than to the bullying problem. Turned out that the school just did not want the lad there.
Just another form of racism, really.
David N. Andrews BA-status, PgCertSpEd (pending; being subsumed into MEd degree to be awarded 12/2006, after submission of thesis)
Applied Educational Psychologist,
Kotka, Finland
By
Anonymous, at 7:08 AM
What will happen, if they can find autism in the womb, is what happens when parents find out if they have a spina bifida kid, down syndrome or other difficult to raise children.
And no, if I had known in the womb if my son was autistic, I dont' know what I'd have done to be honest.
And yes, if their is a cure now, I'd have my son take it. Not to make him mainstream, because really no one can be that stereotype. Were all weird, idiosyncratic and have psychological and emotional baggage. I'd have him take it, so he wouldn't have to struggle so much. So hopefully by being able to communicate and negate the other problems he has, he can have a better life. Would that cure take away his gifts, probably not.
Nor is what causes autism known. It is strongly suspected that thimerosol plays a big role. Would stopping that, or curing that take away the unique personalities of the kids with autism, I don't think so. But maybe they won't have to worry about freaking out about the echo of public restrooms due to the echo's. They won't have to worry about meeting people in the eyes, my gods they could potty train, instead of taking years. You won't have parents having nervous breakdowns, or worse hurting children due to the strain of being a parent to a asd can be. You wont' have people going broke.
Yeah, if a cure could be found, I'd be dancing in the streets and begging a way to have it put on my child. I think any responsible parent would. Then again, any parent of a spina bifida kid would do the same, or a parapalegic, blind or deaf one.
You are not the disability, but the disability is part of you. Please understand, that parents would only want a way to get past that.
And of course parents would have a choice if you were under 18, that's one of the responsibilities of parents. It is a huge weight on their shoulders.
By
Anonymous, at 1:32 PM
This post has been removed by the author.
By
Scott, at 1:11 PM
I appreciate your perspective and respect your position. Unfortunately it is subjective at best... that is to say relative to you and your individual neurobiological makeup and/or experience. One person or group, Autistic or otherwise, could never unilaterally speak for the burgeoning sea of souls diagnosed with an Autistic Spectrum Disorder... not to mention those who have been directly and indirectly affected by it.
I've heard the "Don't cure Autistics it is who they are" speech before. In my experience it comes predominately from higher functioning Aspies and not those who are clearly "suffering" with what has been labeled "Autism". My boy's diagnosis has run the gambit... first severe mental retardation, then ADD, then PDD-NOS, then Autism, then "Autistic Spectrum Disorder... a rainbow term that seems to serve no other purpose than to group the majority of the aforementioned DX's under an even larger umbrella.
There are two sides to every coin... other experiences and perspectives. Most seeking a cure are not heartless genocidal monsters... We're parents and caregivers who have sat up night after night with an inconsolable child screaming from night terrors, pain, or God knows what, because the child can't tell you! Siblings who have been neglected in far too many respects by frantic, haggard, broke parents desperately seeking some solace for their suffering child and yes, forgive us, ourselves and our households too. People, property, and families that have been emotionally and physically destroyed by the violent, seemingly unprovoked outbursts and tantrums of many labeled "Autistic" And lets not forget the lesser, "socially ostracizing" behaviors like arm flapping, disrobing, masturbation, and other self-stimulatory behavior... not that most of us who have been loving an "Autistm" diagnosed family member even give much of a hoot what others think anymore... after all, the most steadfast and loyal friends (and sometimes even spouses) have abandoned us long ago.
Now that may all seem like bitterness to you, but friend you'd need to walk ten thousand miles in our shoes before you could begin to fathom the TRUE GRIT it takes to love, care, and FIGHT FOR a proper treatment and or cure for a loved one like this rather than tossing them into an institution and/or dousing them with drugs designed to mask and subdue.
Maybe you've never suffered or struggled with, for lack of a better word, demons like this. Whatever your state one thing is irrefutable. We will never be able to soundly debate whether Autism is an ability or a disability... something to be cured or embraced until it is better understood and properly diagnosed.
By
Scott, at 1:14 PM
you idiots dont know a thing what is like to have aspergers syndrome there is more than one type for example i have highly functioning autism. heres some information for all you jackasses information i looked up trying to find a cure i hate being the human target of a random person. if you look at the autism birth rate of the years 1990-1999 you would notice that the amount of children being born with autism was at the highest in history higher than the 60's,70's, and 80's combined the reason why this happened because of a preservative in most shots in the years 1990-1999 you know what the fucking chemical was it was mercury thats right mercury the deadly chemical that can cause someone to appear as if they were high for the rest of their life you idiots know who made the stupid preservative an idea the fucking goverment they tried hiding the information for all these years until 2003 the informaion was released to the public thats why it happened sure autism can be caused by family trees and etc. but still this one sitiuation caused the most and also do you people even know the hardships i have had to go through in my life so far no you dont and if i did it would be a book with more than 10000 pages i am only 15 fucking years old and i wanted to find a cure because at all the schools i went to i was picked on beaten up spay on you name it heck they even gave me a fucking broken leg now i am being home schooled and my only friends are my family and people over the internet becayse heck they dont knor anything about me there on the internet and my only other friends is my dog and and also i have only had 5 real friends in my life and now i only have 3 you know what happened to the other 2 as soon as they found out i had autism they stopped talking to me and started being mean to me heck they even told me to just go and die you think thats fun huh is it sometimes i think i should commit suicide heck i almost did commit suicide twice and sorry for the grammar i dont feel like using it anymore and if you want to really know more about this stuff then do what i did i have been trying to find a cure heck even my father got a divorce with my mother because of my autism you know how i know that he told me as he was leaving so you people need to think do you think that you should live if you treat others the way people STILL treat me
By
the outcast, at 9:24 PM
Sidebar, for a moment.
Please don't margenalize HFAs and AS'by calling us the lucky ones and saying it's all very well for us because we're OK. I get enough of that from my own mother (my elder brother and I are on 'opposite ends' of the Spectrum). I have just recently had a 'regression/lost skills' beginning almost 3 years ago. I'm no longer capable of faking being NT, it takes far too much energy. The expectations on us to suceed and the assumption that our lives are easier demeans us. It's not a competition! We are what we are, we are all different and it angers me and makes me feel less than my brother. This assumption is also why adult-diagnosed HFAs and AS' cant get services in MA. It is disrespectful to assume that you know more about a person or group w/in a group's disability.
By
Mooncalf, at 4:48 PM
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