Thursday, 19 May 2011
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AUTISM: It's Who I AM
I was reading something my friend posted on Plurk the other day, about scientists creating autistic mice. I had read about this in the paper, and wasn’t really convinced by the whole thing. However, I do find any and all research into autism worth at least listening to.
{It’s ok, I’m not going to get into an ethical debate about the rights and wrongs of creating autistic mice – or even how you diagnose a mouse with autism, when diagnosing a human seems to take forever and be completely hit and miss. Do the mice stim? – this post is not about the mice. Although I am sure they are very sweet mice.}
Anyway. The Plurk. Right.
So, I was reading this Plurk, and the responses to it, and something that one of my friend’s contacts said caught my eye. The conversation had kind of veered onto the ‘how to cure autism’ side of things, and she had responded to that.
This is what she put: “My brother sent me that link (to the mouse article). He’s fascinated, but does not want to be ‘cured’.”
“Protein found in brain cells may be key to Autism. Just the same, I don’t want to be cured. I’m happy the way I am.”~ Brian Lafferty
That one sentence was really powerful, and stopped me in my tracks as I was reading. Now, I have been aware before about the different schools of thought as far as autism is concerned. I know that where some advocate the education of others in autism awareness, others are pushing for a cure. There are those who think it’s ok to be autistic, and those who would sell their soul to be free of the condition.
Also, it should be remembered that autism is called a spectrum condition for a reason. There are degrees of autism, and many different manifestations that impact a person with the condition’s ability to function. If Chipmunk was lower functioning, or had some of the learning difficulties that may go along with autism, maybe I would look at things differently. It goes without saying, of course, that I can only speak for myself here. My opinion comes from being an adult with probable HF-ASD who has a son with diagnosed HF-ASD/Asperger’s. So my thoughts are my own, ok?
“Autism is not something I have. It is integral to who I am. Eliminate the autism, and you eliminate me. When you say you want a cure, you are saying I should be put to death. Think about it.“ ~ Parrish S. Knight
I’m not sure I would phrase it quite that strongly, but my reaction when I sat and thought about what a cure would mean – really mean – for Chipmunk and I was certainly along these lines.
To me, autism is an integral part of Chipmunk and I. It’s inextricably inked in with everything else that makes us who we are. It is responsible for our thinking, our logic, our perception of the world around us and the people in it. It’s part of our DNA. Maybe this isn’t always a good thing, but the fact remains that this is how it is.
If you take the autism away, what is left behind?
If someone were to offer me a magic pill today that would eradicate my autism, I would have to refuse it. I wouldn’t even think twice. Because it’s hard enough to know who I am now, with all the life experience I have already. How on earth would I be able to understand myself if you take away everything that I know? I may not be perfect now. I may find things difficult and scary and confusing. But at least I’m prepared for that. I know that things are going to be that way, so I compensate. I adjust my behaviour accordingly. If you take all of that away, what am I left with? More confusion than I had before. ‘Curing’ my autism may take away much of the associated stress and anxiety, but there is no guarantee that it won’t bring its own problems. I don’t know how to look at the world as a ‘normal’ person. I’m only just comfortable with being the me that I am now.
That said, I would happily give up the depression and OCD traits that can accompany autism – and do so merrily with me! The gut problems could take a hike, too. And I would give anything to release Chipmunk from the physical disabilities he suffers, as well as his hearing and vision difficulties. But the autism itself? I’m not so sure.
Would being ‘normal’ make my life easier? Of course it would. And Chipmunk’s? Heck yes! But then, does it matter if he relieves his tension by stimming? Surely flapping his hands a bit is a better way to relieve his tension than punching someone in the face.
Yes, fighting for every little thing is exhausting, and frustrating and demoralising. I’m not going to sit here and pretend that parenting a child on the spectrum is a bed of roses. It isn’t, frankly. But how much sweeter the reward when you finally get somewhere. When the people you are pushing against finally realise that what you are saying does make sense.
The little victories are everything, they are so worthwhile. When you are treading such a long road, you have to stop and smell the roses occasionally.
But I digress.
If he didn’t have autism, we would have no reason to fight, granted – but we wouldn’t have Chipmunk, either.
If Chipmunk had been born autism-free – or if there were a cure and we had taken it – I wonder what he would be like today? Would he be the gentle, placid boy that he is now – or would he be turning into a little thug like so many of the boys in his school?
He doesn’t tell lies, because it wouldn’t occur to him to.
He isn’t deceitful, because he wouldn’t know how to be.
He isn’t afraid to say “I love you” – just because.
Autism has given Chipmunk (and me!) a love of books – a precious gift that is to be treasured. He loves music, and language and humour.
He loves life.
If you eradicate autism, then you deprive the world of people like Temple Grandin, Mark Twain and probably Einstein, Darwin, Yeats, Mozart and Van Gogh as well – to name but a very few.
You deprive the world of Chipmunk.
Would the world be a better place then? Really?
It seems to me that without autism, there would be a lot less of the drive and creativity needed to create many of the things people love.
“For success in science and art, a dash of autism is essential.” ~ Hans Asperger
When people speak to me about my photography, they often tell me that they love my eye. Apparently, I look at things in a completely different – often obscure! – way. I take pictures of the things that others don’t see.
Would I have that gift without the autism? Who knows.
And if autism has influenced so much of who I am today, then by taking it away, how much of me are you going to take with it? In fact, will there be anything left of me at all?
I’m not willing to take the chance on finding out.
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Comments (2)
When our grandson, Chipmunk, was diagnosed with HF-ASD/Asperger's it was like the final piece of the jigsaw plopping into place. He is such a bright, intelligent, gorgeous little lad. I remember so well when aged 3 he could name nearly all cars on the road. He is, along with you, my daughter, one of the special and most precious joys of my life. When I thought about Chipmunk and the diagnoses I remember saying, I wouldn't want him any other way....it's part of WHO HE IS. No, his path through life may not always be easy but when he achieves something (usually something he found physically hard because of his other problems), there is such joy in that achievement.
"and probably Einstein"
Einstein was much more social than some people today give him credit for:
"More than one hundred biographies and monographs of Einstein have been published, yet not one of them mentions the name Paul Robeson, let alone Einstein’s friendship with him, or the name W. E. B. Du Bois, let alone Einstein’s support for him. Nor does one find in any of these works any reference to the Civil Rights Congress whose campaigns Einstein actively supported. Finally, nowhere in all the ocean of published Einsteinia – anthologies, bibliographies, biographies, summaries, articles, videotapes, calendars, posters and postcards – will one find even an islet of information about Einstein’s visits and ties to the people in Princeton’s African American community around the street called Witherspoon.
"One explanation for this historical amnesia is that Einstein’s biographers and others who shape our official memories, felt that some of his “controversial” friends, such as Robeson, and activities, such as co-chairing the antilynching campaign, might somehow tarnish Einstein as an American icon. That icon, sanctified by Time magazine when it dubbed Einstein the “Person of the Century,” is a myth, albeit a marvelous myth. In fact, as myths go, Einstein’s is hard to beat. The world’s most brilliant scientist is also a kindly, lovably bumbling, grandfather figure: Professor Genius combined with Dr. Feelgood! Opinion-molders, looking down from their ivory towers, may have concluded that such an appealing icon will help the great unwashed public feel good about science, about history, about America. Why spoil such a beautiful image with stories about racism, or for that matter with any of Einstein’s political activism? Politics, they argue, is ugly, making teeth grind and fists clench, so why splash politics over Einstein’s icon? Why drag a somber rain-cloud across a bright blue sky? Einstein might reply, with a wink, that without rain-clouds life would be very, very short. Or he might simply say that a bright blue sky is a fairy tale in today’s war-weary world.
Yet, despite Einstein’s clear intention to make his politics public – especially his anti-lynching and other antiracist activities – the history-molders have seemed embarrassed to do so. Or nervous. 'I had to think about my Board,' a museum curator (who doesn’t want his name used even today) said, explaining why he had omitted some of the scientist’s political statements from the major exhibition celebrating Einstein’s one hundredth birthday in 1979.
"When it came to how to handle Einstein’s ashes or his house on Mercer Street, everyone involved meticulously adhered to his wishes. But when it involved his ideas, and especially his concerns about what he called America’s 'worst disease,' the fact that Einstein wanted his views made as public as possible seems to have slipped past his historians.
"Readers may judge for themselves how much of this oversight is due to forgetting and how much may be due to other motives (including, perhaps, disagreement with Einstein’s point of view). It is not so much the motive for the omission, but the consequence that concerns us. Americans and the millions of Einstein’s fans around the world are left unaware that Einstein was an outspoken, passionate, committed anti-racist. 'It is certain – indeed painfully obvious – that racism has permeated US history both as idea and practice,' as the historian Herbert Aptheker states. 'Nevertheless,' he adds, 'It always has faced significant challenge.'
"Racism in America depends for its survival in large part on the smothering of anti-racist voices, especially when those voices come from popular and widely respected individuals – like Albert Einstein. This book, then. aspires to be part of a grand un-smothering..."
quoted from http://www.einsteinonrace.com/preface.htm