Saturday, 09 January 2010
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The Hypothetical Cure Question....
"If I could snap my fingers and become non autistic, I would not - because then I wouldn't be me. Autism is part of who I am." And that is how I see C. Autism is part of who he is.
Therefore I have never given any thought to the hypothetical question of ’curing’ C of being himself. Autism is his way of being. So I feel it is not my choice to make. It is not about me.
Jim Sinclair says it very well in his article Don’t mourn for us.
I was thinking of giving up blogging as C is doing well. Or maybe just doing the odd post if I had something to say. So when I saw this post - as C and I were talked about in some of the comments I felt it warranted a reply. So I gave it some thought.
And this is what I ‘honestly’ think...
I see Autism more of a difference than a disability. But I do see C disabled by society by attitude and prejudice, exclusion, lack of resources and at times the wrong support, Etc.So if I were to give C a magic pill – a brain altering drug. Would he become ‘normal’?? Or would he still be 1 of thousands of NT people who self harm? Or would he be an NT who goes to heavy metal concerts and head bangs?! Would he still have gastro problems? Still thrive on little sleep? Would he still prefer to be a nudist? Would he still have a foot fetish?! Would he still get excited standing on platforms in his anorak watching trains? Would he loose his passions and excitement of the things most of us don’t even notice?
These are all normal traits that C already has. OK so maybe a bit more extreme!
There are many tangents/debates around all this. Low and high functioning. What about other comorbid conditions. Children who have tragically died from various therapies or restraints. Or murdered maybe from fear or lack of support? Disability is normal. Parental genetic testing? Prevention. Eradication.So what do we really mean by cure? To make someone conform? To be socially acceptable? Assimilated into the collective?!
Why can’t society accept everyone is different?The journey to acceptance is different for everyone as we each have our own issues to deal with I have seen some parents get stuck at different stages (especially anger). And as a society we take even longer as we have seen with differences of ethnicity, gender etc. Diversity is overlooked within groups and produce stereotypes that can reinforce prejudice and discrimination. And so it goes on.
Yes life has been very difficult at times for C and so in turn for me. But there is also much joy.
From the first day C started head banging (he even does this when happy) i have looked for ways to give him other means to communicate. He had early intervention. Went to the best schools i could find and has been under a Challenging Behaviour specialist team. I continue to look for ways to help C communicate without hurting himself. And make sure there are people around him who understand him and want to support and help him to. And C continues to show progress at his own pace. Acceptance doesn't mean doing nothing.
We all struggle at times. No one is truly independent. C does have a quality of life even with severe challenging behaviour. Which is what I have tried to show through by blog rather than ‘blowing roses’.Education is the key. Not only for our children to help them reach their potential but to society as a whole in raising awareness as one of the biggest problems that I see is the way many people view autism.
It’s such a shame that this hypothetical question divides our community.----------------------------
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About the Author
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- From: esteeklar
- Name: Estee
- Location: Canada
- About Me: I am the Founder of The Autism Acceptance Project and writer of the original Joy of Autism blog, grad student of Critical Disability Studies and single mom to a wonderful autistic son named Adam.
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Comments (8)
The post by Jim Sinclair was very powerful. I've read all books by and on Temple Grandin - she's a very interesting woman - but these are two very high-functioning individuals, what about those who are not? Those who will never say, "this is part of who I am", because they can't?
If there is no problem then why attach a diagnose to your child. Diagnosing something generally means that there is at best an uncomfortable issue or at worst a disabling condition that is in need of a remedy. Autism is not a sociological condition it is a neurological malady. Also when you ask a high functioning autistic individual if they would change you may want to keep in mind that one of the symptoms of autism is a resistance to change.
http://www.autisable.com/711057532/the-forgotten-side-of-autism/
http://www.autisable.com/717096196/hating-autism/
@SavonDuJour@xanga - Very good point!!! Temple Grandin is one of my favorite authors because she speaks so eloquently about the symptoms associated with hyper sensitivity which she herself describes as painful reaction to sounds and being very uncomfortable in certain types of fabrics. I believe she also addressed anxiety and the issue of seizure which I would find hard to accept for my child or anyone elses child to suffer through.
"And C continues to show progress at his own pace. Acceptance doesn't mean doing nothing."
See? This is the point that the pro-cure community seems to forget. I have accepted my autism as a part of who I am. I have accepted it in my sons. I'm not sure if I'd cure them if I could.... I'll wait until the option is actually available before making that decision if it should come to pass while they are still minors and/or incapable of deciding for themselves. I have a problem with making that decision on their behalf but as parents we often make choices for our kids because we'd do it better than they would, right?
But from the pro-neurodiversity side of the coin, most of the parents whose children have autism and those who have autism themselves, aren't saying they don't want to improve their life. Not at all. They're just asking for middle ground. Accept me as who I am, accommodate my needs while I work on strengthening my weaknesses, and I'll be just fine.
And for those that want/need a cure, I say go for it! Why does Jonathon's want for a cure mean that I have to have one if I do not so desire? Will having a cure option available actually mean that the government will start forcing these cures on us? I don't think so. Will they start a good ad campaign to try and make us? Oh certainly.. but the government nor any other agency will be able to force us into a cure. So those that don't want one, won't have to have one and those who do will be able to have one should one ever be discovered. From the science done to this date, we're a long ways from then. So why divide ourselves NOW? Now when we need to be together in a community sense to get more things done for the benefit of all of us, such as legislation like the Autism Treatment Acceleration Act? Or what have you.
And if a mom says she doesn't want a cure for her son, why question that statement? Take her at her word for criminey sake! That's to address those comments left in the other post this article pointed to.
@SavonDuJour@xanga - You make a very valid point and I'm afraid I don't have a very satisfactory answer on that except that the person's parents (if still alive) or guardians will probably end up making that decision for them, such as many decisions are done that way now. A child who is unable to say that they do not like mashed potatoes may find himself being fed mashed potatoes because he cannot say he doesn't like them and the mom doesn't know he doesn't like them. I realize being 'cured" of something is quite more serious than whether or not someone likes mashed potatoes but the basics are the same. The parent is making the choice for that child.
I wonder this... say a person with LFA is "cured." He comes out of the "cocoon" and flies like a butterfly (how's that for a metaphor! ha!) and he is now "just fine." What if he wants to be uncured? What if he says he preferred it before the other way? Or what if a parent decided not to cure her LFA son, and by some miracle his wishes were known to be cured (I realized that's impossible), and the mother still chooses not to because he's really unable to decide that? It's tricky and I feel for those with LFA who cannot express their own desires or even know that there is this debate going on!
I interviewed Jon on my Special Needs Kids Examiner column and he was a joy to talk with. A very intelligent man! I'm also working on interviewing an autistic savant woman who does not want to be cured to provide insights into that camp. The different is, it is difficult for this woman to write her answers down in a way that I or Jon can do and so it takes longer for her to do those things. We've been working on this for well over a month and she is also a very highly intelligent person. But I would say the impact on her life that Autism has would be just as challenging if not more so than Jons, so I felt it was equal and fair to present as two sides of the coin.
I have rambled and forgot the original intent of mentioning the above but will leave it just in case I remember later...
Well I guess if you'd all like to step up and agree to be the ones to wipe their butts when they poop in their adult sized diapers. If you agree to make sure that they are not taken advantage of by merchants or worse still sexual predators. If you agree not to retaliate when they kick your ass out of frustration because they can't convey to you that they have an abscessed tooth or are in excrutiating pain from some other illness. If you agree to make sure they have health care and a source of income. If you make sure they have decent housing and don't burn down that house when they play with the stove top because they do not understand the concept of combustibility. Better still, how about you agree to take them into your home when their parents pass on and offer your acceptance for who they are.
Get real people and stop the poetic BS, butterflies and rainbows. Visit a school or institution with severely disabled individuals, talk to an ALS patient before they lose the ability to speak what they think about their condition. I wonder if Temple Grandin would tell you she would prefer to live in her adult years as she did in her childhood without speech.
This topic is exhausting and I can see why you don't hear nearly as often from a parent of a low functioning child as you do from the HFA parents. It's simply because the parents of the Low Functioning Child is Too Dam Busy to comment much less write their own blog.
I do not have a child with autism but autism has been my passion for many years. I think all the negativity between the HFA & LFA, Autism & Aspergers, savants and those who are cognitively delayed etc is creating such negative energy that is so destructive. This time and energy we are using to argue about who is right about ASD, what it is and what to do about it is not helping the cause, treatment or cure if that is what you want. I'm not sure this is a productive way for us to create autism awareness; it can be confusing enough by times for those who are aware. Imagine the general public we are trying to inform, whose support we are seeking – what are they thinking?
Autism Spectrum Disorder is a very appropriate designation. This disorder includes a very wide spectrum of amazing individuals who display to varying degrees, intensities and disabilities some very personal characteristics: cognitive abilities, behavior, social skills, ability to communicate ( process language and speech or other means of exchange), physical abilities (fine & gross motor), dietary issues, sensory integration disfunctions and more I'm sure.
With the prevelance of the disorder now being at least 1 in 150 children on the spectrum, that means that 1 in 150 parents plus untold numbers of extended family, friends, therapists, teachers and assistants are caring about and for those with ASD. This is an incredibly large group of people that need to come to work together as a powerful force to be reckoned with to get the services those with ASD need to live happy and productive lives.
Can we all not just agree that ASD expresses itself differently in each and every individual who has the diagnosis.? Therefore their needs have to be individually defined and provided for. Can we unite as a positive and powerful group directing our energies to getting on with the business of finding a cause (environmental & genetic) and a cure?
Hopefully we all want what is best for the one we love, that we can agree on – it’s a start! Let’s work together recognizing the many individual needs there are that we must support to make this world a better place for the ones we love who have ASD. Do we not want them all to be accepted for who they are and living happy and productive lives. Personally I believe we can do this!
@jeannicol - I agree with everything you have said. This is why I do not understand why parents who desire a remedy for severe and disabling symptoms are attacked for seeking relief for the ones they love Generally it is not from people who want true acceptance and help for their children but usually comes from those who actually have such a problem with autism that they go so far as to change the name of the condition. I had never even heard of neuro diversity until I was personally attacked by someone who critisizes, apparently on a regular basis people who desire remedies.
This was how I was introduced to the concept of "neurodiversity":
I merely "tweeted" I can not wait to see Daniel in his new and perfect body in the arms of Jesus. In my faith I believe that we are resurrected after Christ's second coming to be in heaven in perfect new bodies. Simply I will no longer have migraines or arthritus, my brother will no longer be diabetic and Danny will no longer have to struggle to communicate, suffer from anxiety, overstimulation, etc, etc. Next thing I know my statement is re-tweeted and condemned as hate speech. I am accused of hating my child and believing that God values autistic children less than others. It was the most hurtful and unbelievably disgusting thing I had ever experienced from within the autism community.
For the record my children are the loves of my life. I love Daniel no more or no less than my son Brian who by all accounts and evaluation is a typically developing individual. Do I wish Daniel was cured. Hell Yes!!! In my mind a cure does not change who he is as my son, it does not have to be the end of his talented self, his funny self, his lovely and beautiful self just as muscular dystrophy or cancer would not change who he is if God forbid in the future he was diagnosed with either of these illnesses.
I would never have heard of neurodiversity or HFA vs LFA as a debate had I not been personally attacked for a simple and what I believed to be an innocuous statement proclaimed on a social networking site. So who is picking on whom?