Tuesday, April 29, 2014

Towards Real Autism Awareness: a 2014 Autism Acceptance Month Post

For the past nine or so years, a lot of questions and a lot of fascination have been surrounding the world of autism.  Over one hundred million dollars has been raised by various organizations to research causes, treatments, preventions, and cures for autism.  Meanwhile, while all this money has gone to various organizations such as Autism Speaks and the National Autism Association, very little of this money has gone to services that would make a difference in the here and now, when people with autism most truly need it.  The fact is that the overwhelming majority of autistic people have been underemployed (or unemployed), without access to education after college, and many of them not yet living on their own despite being even six or more years over age, and these statistics have not been challenged by the various monies raised to create an understanding of autism.  That’s because you have two different ideas about autism.  One is the medical model, which sees autism as a condition to be treated, prevented, and cured like cancer or AIDS.  Even though autism does not kill or cause you to live in perpetual pain or agony like these conditions, you still have people who want to treat it like that. 
Another model you have for autism is a social one.  This model deals with autism as a difference rather than a medical condition.  More recently, this model has been taken up by psychologists, sociologists, anthropologists, and political scientists at various prominent universities throughout the world.  It hearkens autistic people’s struggles in employment and education to the struggles of women and ethnic minorities across the world, stemming from our government and other governments where autistic people have relatively low status, seeing that the fact that modern day public schools and health care divisions, while very effective if you are an able-bodied neurotypical people, is not so effective if you have conditions such as Asperger syndrome, Pervasive Developmental Disorder, and such.  Of all the money that organizations such as Autism Speaks has raised, charity monitor’s and the organization’s own tax return sheets that all charities are federally mandated to publish, show Autism Speaks’ has given only three to four percent of any money it is given to services for autistic people.  It’s 2012 report verifies that statistic (its 2013 report is not yet available).  Autistic activist Amy Sequinza was once quoted as saying, “Autism Speaks’ latest media budget was shown to be $10 million.  With that money they could have provided 14,226 speaking tablets to non-verbal autistic children.”  The bulk of that money has been spent on medical research that for the average under/unemployed and undereducated person with Asperger syndrome, hasn’t changed our standard of living or our levels of happiness and acceptance.  For the problem is that so much investment in things that will theoretically help the autism community in the future, rather than what is shown to help them now, is a perpetual problem of the medical model autism community.  This model was once applied to the homosexual community, and now that it is no longer used on them, it cannot be denied that they have made significant (albeit unfinished) progress. 
Like the LGBT, autistics are not diseased, but different, and by different, I mean that they are not the same as neurotypicals and allistic (having other intellectual/developmental disabilities-AD/HD, bipolar disorder) people who the world does not revolve around.  Have any of you ever seen the Silicon Valley in California?  Do you think it is like that because all the hard-working citizens there are miss prom queen USA?  Do you think this world would function better with constantly static television sets, no knowledge of the theory of gravity, a world without the U.S. Declaration of Independence or Louisiana Purchase?  Maybe you think it’s odd that (some) autistic people will flap their arms and rock their bodies, but in truth, there are many variations of this behavior, which is called stimming, and in many autistics it is too subtle for many to even notice.  And why not ask yourself why you bit your lips or fingernails, or play with your hair or your earrings?  Is it perhaps because you are nervous or uncomfortable around people?  Why does that make you do those things may be what you should ask. 
One could argue that the Cure Autism Movement and the Autism Rights Movement believe in essentially the same thing: a better life for autistics.  Yet in truth, I see two crucial differences that cannot be bridged.  One is the fact that the Cure Autism Movement would only push for bringing universal equality of life towards autistic people on a condition that has not yet been met, that being a cure for autism.  Meanwhile, the Autism Rights Movement believes in universal equality for autistics based on educational and behavorial accommodations that there are already people qualified to facilitate.  I myself was lucky enough to have those accommodations when I was younger (something my mom’s father had provided as they were not free to the public like public schools that seem to be willing to only adapt to neurotypical and allistic learning styles), and for this I believe that I am able to function as effectively and easily as any person who does not share my condition, and with the knowledge that is available to this world now, I believe the same could be true for the over seven million Americans who are autistic today.  And for me to live a fully integrated lifestyle and success, I don’t have to have something about me, whether it’s part of my brain or otherwise, be changed first.  It’s not enough for people to just have mechanically material equality.  They also have to have integrity and live on their own terms, not objective by other people.  So for parents and advocates of autistic children, I have to ask, do you want your children to be equal assuming that a cure for autism will come out of all this money being donated to public charities, or with the knowledge and information that has already been given to the scientific and education community on the development and functioning of autistic people that can be utilized as soon as the world decides that is what is going to be done. 

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