Friday, July 25, 2014

Sounding the Real Alarm: Battling Autism Hate Speech


For this post, I am going to be talking about Autism Speaks’ new documentary Sounding the Alarm: Battling the Autism Epidemic, shown at Massachusetts General Hospital’s Lurie Center for Autism, but before I do, I want to explain something in response to a question some of you may very well ask.  Before you ask me, “have I seen Sounding the Alarm?  If you haven’t, how can you say it’s bad?” why don’t I ask you, “Have you ever read Adolph Hitler’s Mein Kampf?”  “Have you ever watched Keeping Up with the Kardashians?”  “Have you ever eaten a fried Snickers?”  If you can ask me how I can hate Sounding the Alarm if I’ve never seen it, is it not fair for me to ask how you can know that Mein Kampf is hateful, that Keeping Up with the Kardashians is idiotic, or that fried Snicker’s bars are disgusting?  Now, assuming you reading this are following along with me, I would like to tell why I am against Sounding the Alarm and to mention that I have heard respectable reviews about this movie from sources I trust very much the way you may have developed distaste for Keeping Up with the Kardashians.  Just like the average citizen makes their decision about new movies in theaters by reviews from critics, I make my decision about Sounding the Alarm by people I trust and who have seen the movie, though you’re free to watch it if you doubt me.  These sources include well-known writer and mother of a severely autistic child, Susan Senator and people from Charity Navigator’s most highly rated autism charities such as the Autism Women’s Network and the Autistic Self-Advocacy Network.  Now, if you can forgive me for the fact that I may be unfairly insinuating that you are in-line with the makers of this movie, you will see what I have wrong with it, and perhaps why I may have come off so harshly at you at the same time.

-In the beginning, there is a black screen showing statistics on the “rising rates of autism” accompanied to threatening music.
                -At no point in the film is there mention that the rising numbers of children being diagnosed are due to the increasing number of professionals able to diagnose autism.

-Throughout the film there is talk of the costs of autism.  One example includes Autism Speaks co-founder Bob Wright lamenting the fact that children (or rather) people don’t die of autism, despite the fact that his grandson is autistic.  There are also interviews with doctors talking about the millions of dollars autism costs and parents complaining about having to pay for “autism therapies” out of their pockets.
                -Nowhere in the film did they mention this: that many autistic people find ABA, the autism treatment most discussed in the film, to be degrading and dehumanizing.  It takes eight hours a day of ABA for it to show any effect, hindering children’s right to be a child, not an experiment.

-In part of the film, a young man with autism and Down syndrome was shown with his parents and care-givers explaining how he was unable to communicate.
                -He was communicating right in front of them and they weren’t listening.  Even though he wasn’t communicating with verbal speech, he was trying to communicate to them, and like many autistic people, he tries to learn to communicate with people around him failing to listen.

-At one point in the film, a man named Dan Spitz of Anthrax came on, calling parenting a child with autism “a living hell.”  He later complains about having to work to provide autism services for his child, and hugs his wife goodbye before he goes on tour.
                -The fact is, most parents have to work to provide for their families.  According to Autism Women’s Network contributor Lei Wiley-Mydske, “I know plenty of military families who have Autistic children who are separated for long periods of time that don’t blame it on Autism.  Once, my husband went to the Canary Islands to work for eight weeks because he has to work so that our family has money, but he didn’t blame the fact that our child was Autistic for our separation.  Maybe it was my Autism that caused it?  In any case, most people have jobs and have to work to make money and that is not the fault of Autism.”

-There is a scene at an autism walk where they address, a legitimate concern, that people in marginalized communities do not have access to resources. 
                -Autism Speaks fails to mention how only 4% of their money went into autism services in 2012, and 3% in 2013, on what happen to be their own tax return forms, which all charities are required by law to publish, yet Autism Speaks continued to bemoan the lack of services for autistic people.  Autism Speaks spends immeasurably more money on research and administrative costs, rather than on the people who need it the most.

-At one point in the film, a mother says she cannot trust her son to strangers because, “Most days I want to kill him.  And I love him.  How am I supposed to expect strangers to have the patience with him?”  This strikes a chord with Autism Speaks former video on autism where then-Autism Speaks executive Alison Tepper Singer claimed when she found out her daughter was autistic, she wanted to drive the car with her daughter in it off a bridge, and the only reason she didn’t was because her non-autistic daughter was waiting at home.

-There is much talk about research into the causes and cures for autism throughout the film.  The fact is I don’t need to be cured.  I am not a burden. I am not a living hell.  I am not a science experiment or someone who cannot communicate.  I am a college student, a writer, an artist, a friend-to autistics, neurotypicals, Downs people, dyslexics.  I am a flautist.  I am an employee, and I am several things that Sounding the Alarm doesn’t mention. This is not raising awareness.  It is scapegoating, fear-mongering, and comes from people who do, at best, the bare minimum of what’s expected of them.  If their rhetoric of autism being the equivalent of a tsumani or a burden is changing the lack of autism services, why are they still complaining about it?  Autism Speaks has lost key members now such as John Elder Robison, author of Don’t Look Me in the Eye, and noted blogger of A Diary of a Mom, who spent years trying to reform Autism Speaks, after Autism Speaks co-founder Suzanne Wright made a speech to George Washington University claiming, “If three million children in America one day went missing – what would we as a country do?  If three million children in America one morning fell gravely ill – what would we as a country do?  We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made.  We’d leave no stone unturned.  Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing.”  Followed by saying, “Maybe their child has been trying to bite them or themselves.  Maybe they can’t afford the trip to a doctor specializing in autism.  Maybe there is a waiting-list for ABA, speech and OT.  Maybe their insurance won’t pay.  Maybe they don’t have the money to pay a special lawyer to fight for school services.”  This speech sounds very Hitlerish to me.  If you were to hear Iranian leader’s “Death to America” speeches hosted by Duke University’s political science program, then you’d see how I feel about this movie.

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