A lot of well-meaning autism advocates seem to be spending a good deal of time arguing amongst themselves about several important questions in the autism world...
and I truly respect some of these fine thinkers. They are champions of equality and justice in the neurodiversity world. I'm posting a few of their positions here (in overview terms for this short post) --
Who should speak for autistic individuals? Autism Speaks seems to think that we can't do that for ourselves and many of our brightest autie friends on the web are ranting over the audacity of an autism advocacy organization presuming to speak for autistics without even consulting with them or including them on their consulting boards of directors.
Then there's the Defeat Autism Now! folks who, I'm sure, really do mean well. But as an autistic person I'd much rather defeat unemployment for capable autistic folks like myself and my husband, than defeat the source of my uniqueness and gifting.
All of this kinda makes an aspie girl like me look into the mirror and think, "I have met the enemy, and the enemy is ME!". Seriously, why are we using warfare terminology in looking at neurological differences (which by the way, include many benefits) and behavioral preferences?
Another huge controversy is found in the premise of many autistic advocacy leaders who reject the idea of impairment, deficits, illness, or disease references regarding being autistic (or Asperger's).
They posit, "You can't diagnose someone for being black, hispanic or left-handed ". Thus, they view autism as just another genetic state of being, almost like a racial or gender orientation. Good point, but so far the primary source of identification and definition of autism has been coming out of the psychological crowd of professionals who have long held the keys to our kingdom. Let's face the truth here, they use a lexicon of medicalized terminology and orientation that is the current gold-standard of awareness, understanding and "ick", some of us hate this word...diagnosis.
How can we make the shift from this old "disease, cure, defeat-the-germ warfare" paradigm into a more humane and respectful understanding of neurodiversity?
Heady questions...all issues that I really do care about as a member of the autism spectrum.
Here's my problem though. I'm too darn busy trying to survive my daily life for any of these intellectual arguments to really hit me where I live. This week, the mortgage is about to go bust, and I need some bucks to fill the gas tank so I can keep working at my four, yep, you read it right, four part-time jobs.
So I'd like to challenge the autism community to consider this...which is really most important?
Quality of life or E-quality of life?
No matter how long we opine on these worthy and emotionally charged debates, until we as autistics start working together toward real change, we will defeat ourselves in mediocrity and in-fighting.
While we're out here sharing our erudite and complex theories of existential definition, who is working toward developing our economic base of survival and grassroots support? God, I hope it's not Autism Speaks. They might take over the spectrum world and get rid of the next generation of neurogifted specialists.
And just how many bucks out of Autism Speaks' well-funded coffers are being funneled into employment innovations for autistic adults? Does anybody have any data on those figures?
[insert silence]
Autistics need some champions who will develop opportunities, mentoring those who need just a little direction in order to succeed, and leading a whole population of fellow adults on the spectrum toward economic viability and inclusion. Let's talk entrepeneurship instead of factional divides.
That kind of empowerment might scare some folks who would prefer we just stay quietly under-employed and marginalized, while we argue with each other in cyberspace.
Bottom line, we gotta survive...does anybody else out there want to find meaningful, appropriately compensated employment to enhance their independence and life options?
Yeah, me too.
Now that's something worth talking about.
Friday, September 18, 2009
Monday, September 7, 2009
Parallel Play--Wash. Post Review and comment
Here is my comment posted on the Washington Post review of Parallel Play, a memoir written by Pulitzer Prize winning critic Tim Page. For those who don't know, he has disclosed his later life diagnosis as an aspie.
http://www.washingtonpost.com/wp-dyn/content/article/2009/09/04/AR2009090401753.html
[see bottom of post for pasted article by Suki Casanave if link is not viewable]
Here's the comment- thanks to Twitter friend- Fraser Hurrell http://twitter.com/brightmindLABS for the link and info on this piece.
I am a fan of Page's brilliant mind, pen and contributions to the world of classical music.
To understand Asperger's is to realize that the people in Page's life probably craved more attention to their presence in his life, just as you suggest his readers wish for more in his memoir.
Asperger's Syndrome includes a lack of 'other centeredness' that your review proves can be just as palpable in print as it might be in Page's real life.
Sadly (for both those who are autistic and those who are in relationships with an autistic) this is the isolation/separation that classically destroys the very intimacy that would remedy both parties' loneliness.
Perhaps it's not possible for the aspie to do better--the appreciation for those around himself (or herself) is often best described as "I appreciate you/love you for what you give me".
Page's book describes 'sustained contentment' from the love of his life-meanwhile those on the other side of that supine or 'all-about-me' relational style, are often bereaved with the loss of what could have been and most likely will never be.
How do I know? I am an aspie, married to an aspie.
MEMOIR
In Asperger's Grasp
Sunday, September 6, 2009
PARALLEL PLAY
Life as an Outsider
By Tim Page
Doubleday. 197 pp. $26
Tim Page's short memoir, "Parallel Play," might just as easily be called "The Mysterious and Disconcerting World of Tim Page -- and How He Survived to Tell the Story." A former classical music critic for The Post and a winner of the Pulitzer Prize for criticism, the author has spent his life aware that he is an eccentric -- an anxious and uncomfortable one, whose intellectual gifts have provided no relief from the aching loneliness that comes from living on what feels like the fringe. As a boy, he existed in a perpetual state of vague, and occasionally acute, disorientation. It turned out that Page has Asperger's syndrome, but he didn't find this out until he was 45, when he finally received a medical diagnosis and began to better understand his difficult life.
Awash in detail, Page's account reads like a verbal version of the minimalist music he discovered and loved as a teen. "As a listener . . . you settled in . . . as though you had boarded a train and thought nothing about where you'd been or where you were heading but merely surrendered yourself to jostle and speed and passing images." His book itself is a jostling trip. Lists of musical compositions, book titles and authors, as well as excruciating memories of teenage exploits, some of them horrific, are recounted in detail thanks to the author's astonishing recall of minutiae, one of the defining aspects of an Aspie (as Page frequently refers to his syndrome). In the midst of this nonstop journey, the wordsmithing is nimble and lyrical, well-tuned by a writer with a musician's ear.
But the reader craves more about the people in Page's life: his infrequently mentioned parents and siblings; the first woman he married, whom he calls his "best friend, a brilliant and intuitive woman . . . to whom I felt and feel enormous loyalty"; the children he fathered, who "fascinate" him but from whom he keeps a certain distance; the later love of his life (and his second wife), who for four years brought him "sustained contentment" and happiness and then left him. The mention of these deeply significant relationships is oddly -- painfully -- brief. While the author seems to have found his way to balance and a taste of happiness, the old ache, in the end, remains palpable.
-- Suki Casanave
http://www.washingtonpost.com/wp-dyn/content/article/2009/09/04/AR2009090401753.html
[see bottom of post for pasted article by Suki Casanave if link is not viewable]
Here's the comment- thanks to Twitter friend- Fraser Hurrell http://twitter.com/brightmindLABS for the link and info on this piece.
I am a fan of Page's brilliant mind, pen and contributions to the world of classical music.
To understand Asperger's is to realize that the people in Page's life probably craved more attention to their presence in his life, just as you suggest his readers wish for more in his memoir.
Asperger's Syndrome includes a lack of 'other centeredness' that your review proves can be just as palpable in print as it might be in Page's real life.
Sadly (for both those who are autistic and those who are in relationships with an autistic) this is the isolation/separation that classically destroys the very intimacy that would remedy both parties' loneliness.
Perhaps it's not possible for the aspie to do better--the appreciation for those around himself (or herself) is often best described as "I appreciate you/love you for what you give me".
Page's book describes 'sustained contentment' from the love of his life-meanwhile those on the other side of that supine or 'all-about-me' relational style, are often bereaved with the loss of what could have been and most likely will never be.
How do I know? I am an aspie, married to an aspie.
MEMOIR
In Asperger's Grasp
PARALLEL PLAY
Life as an Outsider
By Tim Page
Doubleday. 197 pp. $26
Tim Page's short memoir, "Parallel Play," might just as easily be called "The Mysterious and Disconcerting World of Tim Page -- and How He Survived to Tell the Story." A former classical music critic for The Post and a winner of the Pulitzer Prize for criticism, the author has spent his life aware that he is an eccentric -- an anxious and uncomfortable one, whose intellectual gifts have provided no relief from the aching loneliness that comes from living on what feels like the fringe. As a boy, he existed in a perpetual state of vague, and occasionally acute, disorientation. It turned out that Page has Asperger's syndrome, but he didn't find this out until he was 45, when he finally received a medical diagnosis and began to better understand his difficult life.
Awash in detail, Page's account reads like a verbal version of the minimalist music he discovered and loved as a teen. "As a listener . . . you settled in . . . as though you had boarded a train and thought nothing about where you'd been or where you were heading but merely surrendered yourself to jostle and speed and passing images." His book itself is a jostling trip. Lists of musical compositions, book titles and authors, as well as excruciating memories of teenage exploits, some of them horrific, are recounted in detail thanks to the author's astonishing recall of minutiae, one of the defining aspects of an Aspie (as Page frequently refers to his syndrome). In the midst of this nonstop journey, the wordsmithing is nimble and lyrical, well-tuned by a writer with a musician's ear.
But the reader craves more about the people in Page's life: his infrequently mentioned parents and siblings; the first woman he married, whom he calls his "best friend, a brilliant and intuitive woman . . . to whom I felt and feel enormous loyalty"; the children he fathered, who "fascinate" him but from whom he keeps a certain distance; the later love of his life (and his second wife), who for four years brought him "sustained contentment" and happiness and then left him. The mention of these deeply significant relationships is oddly -- painfully -- brief. While the author seems to have found his way to balance and a taste of happiness, the old ache, in the end, remains palpable.
-- Suki Casanave
Bad Blogger!
Mea culpa! Yes, if there were a 12-step recovery program for bad bloggers, I would attend the meetings.
Life became so 'real' for me that I required a lengthy hiatus--serious illness, an adult child who was a victim of a violent crime, financial chaos, 21 semester credit-hours at my university (oy! why did I do that?).
My apologies to those of you who aren't in my immediate sphere of life...you couldn't call or check up on me, and I left you without an explanation.
Sometimes, in stepping away from what we write, create or what sometimes overwhelms us, we gain a life-critical skill--Perspective.
I am back, less depressed, further researched and armed with big news and innovative strategies for coping.
Are you living maxed-out with your own autie stress, do you have a spouse or kids that you love but don't know how to live with? Tired of talking about the latest intervention, IEP, or cure? Is your idea of a good time out of the house when you meet in your case worker's office?
Then keep coming back- I promise we'lll hang in this thing together. I'm right here.
Life became so 'real' for me that I required a lengthy hiatus--serious illness, an adult child who was a victim of a violent crime, financial chaos, 21 semester credit-hours at my university (oy! why did I do that?).
My apologies to those of you who aren't in my immediate sphere of life...you couldn't call or check up on me, and I left you without an explanation.
Sometimes, in stepping away from what we write, create or what sometimes overwhelms us, we gain a life-critical skill--Perspective.
I am back, less depressed, further researched and armed with big news and innovative strategies for coping.
Are you living maxed-out with your own autie stress, do you have a spouse or kids that you love but don't know how to live with? Tired of talking about the latest intervention, IEP, or cure? Is your idea of a good time out of the house when you meet in your case worker's office?
Then keep coming back- I promise we'lll hang in this thing together. I'm right here.
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