Monday, March 12, 2012

A Well-Known Autism Charity isn't all it May Seem

Many 'charity' organizations have a shameful history of acting like corporations, paying more to their executives than to the causes they speak on behalf of and end up being out in the world to promote themselves, rather than the people they talk about.  And when they spend more money on themselves, rather than on the issues, it drains communities of being able to solve these issues they are involved in and cause good real charities to go underfunded and fall apart.  
When I was sixteen, I had the fun of going to Camp Determination during the summer of 2006, funded by the Autism Asperger Resource Center, where me and several other friends, also with autism, got to swim, make crafts, practice archery, and go horseback riding.  When the fall of that same year begin, I heard the AARC closed down because they did not have the funds they needed to stay afloat.  It was around that time that the organization Autism Speaks began with their advertising and public fundraisers.
As many people will undoubtedly be thinking, "What is wrong with Autism Speaks?  They have raised so much money and gotten so large in only seven years of being around."  I have heard this rhetoric a thousand times and hope this article will make people think more clearly about the organization if they currently do not know what is wrong with it.
The group was founded in 2005 by Bob and Suzanne Wright, grandparents of a child with autism.  It's goal is "to find a treatment, prevention, and a cure for autism."  Bob Wright is a former General Electric CEO and a former NBC executive.  Despite his and his wife's claim that Autism Speaks champions on behalf of parents "suffering with autism," Suzanne Wright specifically told her daughter Katie, the mother of an autistic child and the one who suggested they start an autism organization, that she was not allowed to speak for the organization in any capacity.  This incident ended up being on the front page of the New York Times.
The truth is Autism Speaks has been criticized and condemned by over sixty disability organizations around the world.  These organizations, which include the Bazelon Center for Mental Health Law, the Autistic Self-Advocacy Network, Mothers from Hell, the Statewide Parent Advocacy Network of New Jersey, and the Elementary Inclusive Education Program at Teacher's College, Columbia University are organizations made up of autistic people, their parents, families, teachers, social workers and caregivers, the very people who would have an interest in autism.  An anonymous social worker at the Wise Mind Therapies in Kansas City once said that Autism Speaks looks more like a corporation rather than a charity.
Many people associate Autism Speaks with a desire to help those afflicted by autism. On their IRS Tax return, which all charities are required by law to fill out and publish, Autism Speaks showed that they spent 17 million dollars on executive salaries while they spent only 60 thousand dollars on services for people with autism.  And of the 68 million dollars they spent in that year, two-thirds of it went to biomedical and genetic research on autistic people.  When the organization first started, co-founder Suzanne Wright, a grandparent of an autistic child, claimed the organizations mission was "to eradicate autism for the sake of future generations."  On their website, Autism Speaks has a page devoted to honoring the efforts of James Watson, chancellor of the Cold Springs Harbor Laboratory, to find genes susceptible to autism.  Watson resigned from his position after making grossly racist remarks.  He has also had long advocated getting rid of disability which he claims is "getting rid of stupidity."  Meanwhile, all the money Autism Speaks has spent on finding a 'cure' and executive salaries could have gone to people with autism and their loved ones.  Despite this hypocrisy, Autism Speaks has the nerve to portray autism as costing families and societies as costing millions of dollars every years.
Charities that do more for themselves often rely more on sensationalism rather than honest raising of awareness about the issues they are about.  In a video Autism Everyday former Autism Speaks executive Alison Tepper Singer claimed that when she found out her daughter was autistic, she wanted to 'drive the car carrying her daughter into the Hudson River,' but she didn't do it because 'her non-autistic daughter was waiting for her at home.'  Mrs. Singer made these remarks on The Oprah Winfrey Show in from the of the daughter she professed to wanting to murder.  Mrs. Singer also claimed that if you have an autistic child, you are twice as likely to get divorced.  Apparently, it is an autistic child's fault if his or her parents cannot resolve their issues together.  As if that were not enough, after Mrs. Singer made her notorious statement, two Autism Speaks board members came onto Oprah's stage and claimed that after having found out their children had autism, they frequently wished their children would drown in the plastic pools they played in.  Mrs. Singer resigned from Autism Speaks but only after she disagreed with their long-held conviction that vaccines are the cause of autism, which has led to thousands of children across the world dying because their parents did not give them vaccinations.
Autistic Self-Advocacy Network protests Autism Speaks a Ohio State campus

The organizations adds have also compared having an autistic child to being struck by lightning or being in a fatal car wreck.  In the video I am Autism another Autism Speaks video produced by filmmaker Alfonso Cuaron, who has a son with autism, the narration said, "I am autism!  I work faster than AIDS, cancer and diabetes combined!" (emphasis added)  This video was unfortunately showed at the United Nations 2006 Autism Conference to first ladies from around the world.  To Autism Speaks apparently, dying of cancer is a much more preferable fate then having autism.
Autism Speaks has long used the element of fear in order to convince people that what they say about autism is true.  They have a history of claiming that autism is rising at a rate 'never seen before,' in order to spread fear of this condition, a view at odds with modern psychology, psychiatry and sociology, which sees autism as having appeared to be larger because of changes made to the DSM in 1994.  Studies have recently shown that there are as many adults with autism as children.  Unfortunately, the notion Autism Speaks claims to be true would lead people to believe that there are more children with autism than adults, which could mean that adults wit autism will not get the services they need because so few people know they exist.
Unfortunately charities in it for themselves have another dark characteristic, which is they seem to be made up almost entirely of people who are the least affected by the issue they revolve around.  Currently Autism Speaks is not made up of any autistic members, whether in their board or general membership.  If Autism Speaks were a charity organization of those most affected, they would include largely autistic people, but also their parents, relatives, spouses and children, as well as social workers, teachers and caretaker.  Yet Autism Speaks seems to only have parents and only parents with their persuasion on autism serve on the board of Autism Speaks.  Ari Ne'eman, head of the Autistic Self-Advocacy network claims, "Autism Speaks talks about us without us."
As with other pseudo-charity organizations, Autism Speaks wants to protect their image at all costs.  In 2008, an autistic teenager started a website called Neurotypicality Speaks parodying the policy of Autism Speaks of having only non-autistic members on their board.  After she set up the website, thirty Autism Speaks lawyers wrote to her threatening to sue her, an autistic teenager, for $90,000 for copyright infringement if she did not shut down the website.  As the website was a parody, the threat was legally absurd and as far as most people with autism are concerned, the girl was merely expressing her opinion, making her within her right to free speech.  The girl did shut down the website, but only because Autism Speaks was better suited to influencing the courts with their vast sums of money, not because they had a superior legal case.  Autism Speaks, like a corporation, used it's money and power to influence the minds of America's legal system.  A few months later, Autism Speaks threatened to sue a website called Zazzle for copyright infringement because they had a line of shirts which said, "Autism Speaks can go away.  I can speak for myself." 
Like a corporation type charity, Autism Speaks spends more money on themselves, use sensationalism, rather than honest facts to promote their views, exclude people who are most affected by the issues they talk about, and work harder to protect their image than the welfare of the people they talk about.  To me, we should judge charities not by what celebrities endorse them or how many, but whether they go out of their way to help those afflicted by what they talk about.  Instead of judging them by how much money they raise, they should be judged by how they make that money and how they use it.  I hope people learn about the reasons why Autism Speaks is not worth supporting because I believe in a world of dignity, rights, access and opportunity for people like myself who live with an autism spectrum disorder.  There are much more worthy autism organizations such as the Autistic Self-Advocacy Network, the Autism National Committee and GRASP.  Hopefully people will learn to stop investing their money in organizations like Autism Speaks so that these organizations will not go the same way as the AARC and societies will get closer to having the awareness and support for people with autism to thrive without having to change their abilities.

If you would like to do more for autism you may help two boys who were physically abused by a teacher in order to remove his autism at and

1 comment:

  1. Great work Ben keep it up! Your sangha misses you and we are sending you metta!