Autism Speaks does not represent the voices of autistic people

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Photo courtesy of MCT

If you decide to donate money for Autism Awareness Month this April, be mindful of where your money is going. There are many viable autism charities — the Dan Marino Foundation, Autism Self-Advocay Network and Aspies for Freedom — but I beg you not to donate to one organization: Autism Speaks.

Autism Speaks is a wolf in sheep’s clothing. Their website states the organization has “grown into the nation’s largest autism science and advocacy organization, dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.” But take a closer look at how the organization handles its business and you will not want to give it any support.

1. Shady finance

In 2008, alone, the organization raked in a total of $65 million. While that’s impressive for a nonprofit charity, one must question where all that money goes; less than $2 million went to helping people, according to the Better Business Bureau. The organization spent more than that on office supplies alone, according to Autism Speaks’ website. It also paid its executive science officer upward of $700,000 and a combined $1 million to four executive vice presidents. It actually lost upward of $85,000 at one fundraiser, according to the bureau.

2. Family ties

The organization’s name is misleading — currently, Autism Speaks has no members on its executive board who are on the autism spectrum in any way, shape or form. The organization was not founded by parents of children with autism, but by grandparents of children with autism.

“Their whole name and organization is incredibly condescending and parentalistic towards people with autism. They are neuro-typical and to claim that they speak for us is a bit offensive, frankly,” said CSUN philosophy professor Jacob Hale, who was diagnosed with Asperger’s syndrome as an adult.

3. Misleading message

Autism Speaks has a history of demonizing autism and autistics themselves, and in the past, the organization has funded research not only seeking a “cure” for autism, but seeking out genes in utero that might show if a child has autism before he or she is born. This sets up quite a slippery slope toward eugenics.

In its most famous video, “Autism Every Day,” a  mother said she contemplated murdering her autistic daughter and killing herself by driving off of the George Washington Bridge because she was unhappy with how the public schools did not give special attention to autistic children. She ultimately decided not to drive off the bridge because she thought of her second, non-autistic child. This promotes fear and pity that demonizes children with autism instead of inspiring people to help them.

Another video by Autism Speaks titled, “I am Autism,” shows pictures of autistic children and a somewhat ominous voice over the words, “I am Autism…I know where you live…I live there too … I work faster than pediatric AIDS, cancer and diabetes combined … And if you are happily married, I will make sure that your marriage fails.”
Ari Ne’eman, former president of the Autism Self-Advocay Network (ASAN) and the only member serving on the President Obama’s National Disability Council with an Autism Spectrum Disorder, said in response for ASAN to the video that autistic people do not want to be portrayed as burdens or objects of pity and fear.

Consistent with the organization’s constant victim-blaming, according to Autism Speaks, if the parents of an autistic child divorce, it is the child’s fault. In truth, my parents raising me strengthened their marriage, me being both a pride and joy and a handful at the same time. Being smart but socially awkward inspired them to want to teach me and also to protect each other more.  My parents’ marriage ended when my dad died of cancer, not because of my autism.

4. Faulty science

Autism Speaks continued to pursue research of the connection between vaccines and autism long after research proved vaccines don’t cause autism. Two of its own board members, Alison Singer and Eric London, resigned in protest in 2009 after Autism Speaks continued to commit funding to research linking vaccination and autism. London, who was on Autism Speaks Scientific Affairs Committee, said that the organization was “adversely impacting” true autism research by continuing to pursue arguments connecting the two, that are “misleading and disingenuous.” Singer said vaccines save lives and don’t cause autism.

5. Hurting, not helping

Autism Speaks does not come from a social justice or advocacy/activism perspective and as such, their primary focus is finding a “cure” for autism, when money would be better spent advocating for disability rights and helping people on the spectrum to adjust and thrive.

“You can advocate for the rights of people with autism and help them adjust to the needs of society. The two are not diametrically opposed,” said Hale. “They should be focusing on the way social institutions demonize non-typical behavior and advocate that non-neurotypical behavior is not dangerous and because of that it’s hard for me to support them.”

Before giving to Autism Speaks, think of the countless other autism organizations that are struggling, but truly represent and speak for the needs of people on the Autism spectrum. The ugly truth is that Autism Speaks, but does not listen.

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  • Christopher Coyne

    It seems to be okay; but I just started dealing with Autism head on about a year ago.  I have had many questions about autism and yet to hyave even one of them answered.

  • EnoughFish

    Autism Speaks silences Autistics.

  • mary tormey

    Autism Speaks is well known for offending and censoring Autistic people, but fewer people know about their ties to the pharmaceutical industry. Ortho-Mcneil-Janssen is becoming well known for an illegal marketing campaign that defrauded governments out of billions of dollars, It certainly is suspicious how Autism Speaks has removed mention of the 12 years of work Peter Bell put in at Ortho-Mcneil-Janssen before he started working at Cure Autism now which later merged with Autism Speaks. 

  • Chris Brown

    Having read their various messages, I can affirm most clearly and coherently that Autism Speaks does not speak for me.
    I’m on the autistic spectrum and I can speak for myself.  I may also be better-placed than some to speak for those on the spectrum who find that more difficult, but you’d be surprised at how many of us can communicate effectively an’ we be asked and listened to.

  • Brandon Steward

    Please please give direct references for your sources.  On Autism Speaks website they give their 2010 Annual Report (which
    also shows numbers for 2009).  Why would you only refer to their 2008 numbers (which I could not find on their website) when they are not the most up-to-date.  Autism Speaks has spent $13.6 million in 2010 and $13.4 million in 2009 for Salaries.  Under Grants and Awards, they spent $16.3 million in 2010 and $11.7 million in 2009.  I’d think those numbers would be more relevant in 2012.  For a non-profit agency, is this atypical?  Showing that kind of information and research would certainly help me deciding where to donate.

    Also, Autism Speaks funds faulty science?  Please please give a source!  You can go to their website and “explore studies they are funding”.  A lot of those studies seem vague and I have no idea what the actual study/research is about.  Which ones are trying to find a link between autism and vaccines?  You should be able to point directly at the study, when it was funded, how much money was given and for how long.

    Autism Speaks is a very large and vocal organization.  If you’re going to argue for or against the organization, then give your sources, give your references and show your evidence otherwise I’m just going to write-off this article and ignore it.  Don’t do bad research, don’t do under-research, and don’t be vague in your writing.  Doing so is a disservice to your readers and an insult to journalism. This is an opinion piece and you’ve given me no reason to read any others you have written.

    • Michelangelo_L

      In their defense, you don’t usually include sources or citations in newspaper writings due to space constraints. Although it would be interesting to see online newspaper begin to include bibliographies. 

    • EnoughFish

      Can you stop trying to trip people up on technicalities? You are trying to use salasriesa and grants, both of which vary little from the reality of how the money is spent overall, in order to discard an argument.

      It is like you don’t care at all for the actual people and what they go through. That is disturbing in of itself. I am sure you were going to ignore it the moment you came on here because you would make such inane arguments in defence of Autism Speaks. Your attempt to use this obvious manipulation by trying to speak for the readers is a disservice to Humanity. How crass.

      Autism Speaks DOESNT speak for me. It funds faulty science. Don’t like that truth? Then stop ignoring what’s in front of your face, unless of course you’re doing this sockpuppetry for money than out of desperation.