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.
