Autism Speaks - Friend or Foe?

 Editorials

The presentation of the controversial, "I Am Autism," has placed both parents of persons with Autism and people with disabilities in a rather difficult position. What had been an organization that professes ongoing support for persons with autism has apparently presented the very people they claim to support in a highly-negative light. As someone who is interested in disability issues, I decided to look a little further into the Autism Speaks organization and their presentation of, "I Am Autism."

The presentation of the controversial, ‘I Am Autism,’ has placed both parents of persons with Autism and people with disabilities in a rather difficult position. What had been an organization that professes ongoing support for persons with autism has apparently presented the very people they claim to support in a highly-negative light. As someone who is interested in disability issues, I decided to look a little further into the Autism Speaks organization and their presentation of, ‘I Am Autism.’

Elizabeth Emken is the Vice President of Government Relations for Autism Speaks, according to their web site. She joined Autism Speaks in March of 2007 and manages the relationship between Autism Speaks and the federal government, state governments and additional agencies. Elizabeth has been a leader of community advocacy for the, ‘Combating Autism Act of 2006, on behalf of Cure Autism Now, Autism Speaks, and seventeen additional autism organizations. The Combating Autism Act of 2006 passed in December of 2006, authorizing nearly a billion dollars over a five year period of time to, ‘combat,’ autism through research, early detection, screening, and early intervention. Federal legislative priorities include initiatives relative to services and treatment, tax benefits, as well as *global* autism assistance.

In other words – not only is Autism Speaks federally-funded; Elizabeth is as well. Elizabeth has been quite the advocate for Autism Speaks; she launched a multi-state campaign to secure insurance coverage for autism-related services as well. She graduated from UCLA in 1984 with a degree in Economics and Political Science. She is married to Craig Swartz, who is a strategist for Microsoft. Together they have two daughters and a son, Alex, who has autism.

Mark Roithmayr is the the President of Autism Speaks. Over a twenty-month period he assisted in the merging of ACRE, NAAR, and Cure Autism Now into what is currently Autism Speaks. Autism Speaks itself is the largest autism-related non-profit health care agency in America; they raised over $69 million dollars for autism research, awareness, advocacy and family services. Mark Roithmayr worked for the March of Dimes Birth Defect Foundation for twenty years prior to becoming the President of Autism Speaks. At the March of Dimes, Mark helped to raise $220 million dollars. Mark is living in White Plains, New York with his wife Christine and their two children.

Autism is certainly nothing new where discussions among members of the federal government are concerned. I will not attempt to present information from an administration that is no longer in office, but what about the Obama administration? Even as Mr. Obama was running against Hillary Clinton, the subject of Autism was prominent enough to gain national attention.

Senator Obama, in Response to the A-CHAMP Autism Issues Questionnaire, stated:

Do you believe that the Combating Autism Act provides enough money to find the cause, or causes, of autism and effective treatments?

“I supported the Combating Autism Act of 2006. It was a good start. As President I will make sure that money appropriated by Congress for autism spectrum disorders reaches the organizations and people that they were intended for. Research is important but it is only one of the steps we need to take. Americans with ASD should be supported throughout the lifespan. Early diagnosis and early intervention has been proven to lessen the amount and intensity of services Americans with ASD need as they grow older. We must appropriate the funds needed to support all Americans with disabilities.”

As President, I have not heard Mr. Obama mention People with Disabilities in *any* capacity whatsoever in any single one of his endless speeches related to health care reform – not once. Instead, the Obama administration is preparing to cut services from Medicare Advantage and Medicare itself to the tune of $500 (B)illion dollars. Instead of continuing his former support of the Community Choice Act (CCA), President Obama has ignored both People with Disabilities and the CCA in relation to health care reform. You can read more about the responses from former Senator Obama as he ran for office in relation to Autism here:
OBAMA AND CLINTON ON AUTISM, VACCINES, RESEARCH

My point with this information is that we now have a federally-funded, disability organization – Autism Speaks, that has presented the world with a media production that was most likely truly intended to focus on Autism the disability, not People *with* Autism. What we have is an Autism Speaks that has been irresponsible, despite a glorious leadership with past efforts that are commendable. What we have is a disability organization with federal backing that is now coming across as, ‘anti-disability,’ through the errant efforts of leadership that has placed Autism and Persons with Autism in a highly-negative context.

Autism Speaks has done a number of things through, ‘I Am Autism,’ that speak extremely poorly for the organization. The presentation of the, ‘I Am Autism,’ production makes President Obama look even worse in the eyes of people with disabilities than he already does. ‘I Am Autism,’ speaks so badly of the current leadership at Autism Speaks that I have to wonder how long the likes of Mark Roithmayr and Elizabeth Emken can remain in their current positions. The organization of Autism Speaks as a whole will most likely experience a reduction in donations from the public at large due to this horrendous production. The very award-winning film makers who were involved in creating, ‘I Am Autism,’ now have a dark cloud hanging over their heads, despite what I am sure were honorable intentions.

What exactly is the message that, ‘I Am Autism,’ presents to everyone who encounters it in relation to Autism? Here are some of the statements made in this production:

“I am autism. I have no interest in right or wrong. I will plot to rob you of your children and your dreams….And if you’re happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.”

“I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined.”

“And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.”

“I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain.”

“I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams.”

“I will make sure that every day you wake up, you will cry, wondering ‘who will take care of my child after I die?’ And the truth is, I am still winning, and you are scared, and you should be.”

From this depiction of Autism and People with Autism, the organization, ‘Autism Speaks,’ would have people believe that People with Autism are plague-carriers. Autism Speaks likens People with Autism to family-destroying, misery-creating, hope-crushing, woe-enhancing, sleep-depriving, marriage-killing monsters. Autism Speaks presents People with Autism as being an instant ride to bankruptcy.

Not since reading about Nazi Germany have I seen such an outright negative portrayal of People with Disabilities. The fact that Autism Speaks is *supposed* to be supportive of People with Autism makes me absolutely shudder with disgust. I am not alone where this dismay at an organization that declares itself to be promoters of Autism and People with Autism yet presents such a hateful and destructive message is concerned:

Emily (Parent):
http://daisymayfattypants.blogspot.com/2009/09/what-if-someone-did-this-with-say-downs.html

“This is horrific. I cannot believe that these people thought it was OK to demonize a developmental disorder in this way, behaving as though autism were something separate from the people who have it, like a wart or a blight or a boil that should be burned off or lanced and drained before it infects someone else or destroys your marriage, rather than what it really is, a differential neural construct that is just as much a part of the people who have it as their eye color. Is there any other developmental difference or genetic disorder that could be vilified in this way with an assumption of impunity? Dyslexia? Schizophrenia? Tourette's? Depression? Chromosomal disorders? Doubt it.”

Even more terrifying is the fact that Autism Speaks has International ties. As Autism Speaks Co-Founder recently stated at the Clinton Global Initiative Meeting Panel, ‘From CEO to NGO,’ “It's an honor to be given the opportunity to talk about the global autism crisis and the urgent need for international collaborative action before this very influential audience. Autism is a disorder that knows no geographic boundaries, and it demands a global response that is commensurate with the enormous scope of the challenges we are facing.” The Autism Speaks web site itself states, “In addition, the NCBDDD runs campaigns aimed at improving awareness of developmental disabilities among parents and physicians, and promotes state efforts to ensure early developmental screening. Compared to the cuts suffered by many programs in this year's appropriations bills, the NCBDDD's autism programs fared well, receiving an increase of $427,000 over last year's funding level, for a total of $15.3 million.” http://www.autismspeaks.org/government_affairs/legislation.php

Autism Speaks, through the presentation of, ‘I Am Autism,’ has changed their entire demeanor towards People with Autism, their family members and friends. Instead of placing value on people with autism, Autism Speaks has presented them as some kind of horrifying monsters, loose in society and bent on destruction. Autism Speaks wields immense amounts of money and power, with the ability to sway massive numbers of people in societies across the planet in relation to Autism. They are not using these abilities to the benefit of People with Autism.

By Thomas C. Weiss - Sep 28, 2009 6:41:03 AM

Link to "Autism Speaks - Friend or Foe?" - http://www.disabled-world.com/editorials/autism-speaks.php