So you want to donate your money/time/resources to Autism Speaks

To whom it may concern:

It seems as though you are concerned about the plight of autistic people, particularly in the United States.  With a rate of 1 in every 88 children being diagnosed, and a similar percentage of adults diagnosed with autism, this is a very important cause to be concerned about.  However, I recently discovered that you have lent your support to Autism Speaks.  You may think that Autism Speaks is a very good cause, because helping autistic people and their families is an excellent goal, right?

Unfortunately, Autism Speaks, though they are the most vocal charity for autism here in theUnited States, is not a charity that has the needs of autistic people as their goal.  According to Autism Speaks’ own financial records, they contributed only 4% of their yearly earnings in 2010 to family services. The rest went toward marketing, their board members’ income (many of whose salaries reached the $400K mark), awareness campaigns based on the tragedy model of understanding autism, and research into finding a cure.

Autism Speaks does not have a single member of their board who is an autistic person themselves.  A common slogan in the autism community is “Nothing About Us Without Us”, and that should be the defining goal of every autism organization.  Unfortunately, Autism Speaks does not feel the same way.  While they do have several young autistic people involved in a few minor capacities, overall, they have been very anti-autistic in their dealings with autistic teenagers and adults.

Autism Speaks’ ad campaigns have been inordinately focused on the idea that autism is a tragic “disease”, which is factually incorrect at the outset, as it’s not a disease, but a disorder that affects the way a person’s brain functions.  Every single one of their ad campaigns have focused on the negative side of autism, that it’s an “epidemic” and is something that should be cured (an idea that many autistic people vehemently disagree with for a number of reasons).  A very specific ad campaign that you should investigate is a video called “Autism Everyday”, in which Alison Tepper Singer, a mother of an autistic child, contemplated murder/suicide of her autistic daughter, on camera, in front of said autistic daughter.  Another very controversial video was entitled “I am Autism”, now removed from the internet (link takes you to a video of the script) and featured children and adult autistics with very negative portrayals of their lives, with words like “I am autism and I will destroy your marriage”, among others.

I’m certain that this information is disheartening, and you’re wondering by now what you can do in order to change the conversation regarding autism.  The first step is to pull any and all support from Autism Speaks.  This is a very profitable charity and the most well-known one for autism, particularly in theUnited States.  The second step is to investigate fully all future charities you invest in.  The majority of autistic people recommend the Autistic Self Advocacy Network (autisticadvocacy.org), because it is run by autistics for autistics.  There are several other worthy charities, such as the Dan Marino Foundation and the Doug Flutie, Jr. Foundation for Autism. The focus of these charities seems to be on helping autistic people who already exist, rather than working to find a cure so no more autistic people can be born.

Thank you for your time.

Sincerely,

A concerned autistic person

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9 thoughts on “So you want to donate your money/time/resources to Autism Speaks

  1. I realize this is a blog, but I find your writing to be very biased. The fact that you weren’t diagnosed until the age of 30 means and can write eloquently tells me your autism is mild. You did not live with what these parents endure each and every day. Your comment about the mother saying she contemplated murder-suicide is out of context. She was commenting on the dismal conditions of schools for children with autism and was heartbroken at the thought of leaving her daughter there.

    As far as Autism Speaks goes, you are entitled to your opinion, of course, but your thinking is very skewed. Autism Speaks has been instrumental in getting legislation passed so parents can get insurance coverage to treat their children–not to ensure autistic people don’t exist, but to improve their quality of life.

    I have children on both ends of the spectrum and can tell you my Aspie son has not had to endure any of the associated health conditions that so frequently accompany autism–epilepsy, severe enterocolitis, autoimmune disorders, severe allergy, etc. that my youngest son endures. Most of us parents have had the experience of seeing our severely autistic children developing normally and then regress and suffer from painful conditions, as well as the inability to express even their basic needs

    Some people with Asperger’s like to call themselves autistic and quote “Nothing About Us Without Us”, as if they are the definitive voice of autism. The children in the video you provided the link to do not have Asperger’s, will not get married, will not have children, and will likely not ever hold anything other than a menial job–and this is if they’re lucky. Many of them will never be out of diapers. I do not write this to demean autistic people, but this is the autism we parents are fighting to prevent, ameliorate or cure–not brilliance, social awkwardness and quirkiness.

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    1. Congratulations! Your words received a post o their own. I felt the comments weren’t the right place to respond. I hope you read what I’ve written and really think about it.

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    2. Janet you are making *a lot* of assumptions about the author of this article. There’s no possible way you could know the “severity” of her autism, nor what her life has been like. You are also making *a lot* of assumptions about Autistic people/children in your assumption that their lives are somehow doomed. That video that is referenced is unbelievable in its portrayal of Autism and displays more than anything for me that while Autism Speaks seems to have much sympathy for parents of Autistic children, they have almost no regard whatsoever for the children themselves, or the Autistic adults that they all become.

      I am certain you must have heard of Carly Fleischman, and she is a superb example of a highly intelligent and charismatic young lady who really put her parents through the ringer as a child. She absolutely was the “hard” kind of Autism in regards to child-rearing. But I do not feel her parents believe that her life is/was worthless or that she wrecked their marriage and their lives. And while many would have viewed her childhood as the “ugly” and harsh kind of Autism, look at her today, now that she has acquired the assistance she needs to effectively communicate, and you will find that she too displays much of the “brilliance” and “quirkiness” and “social awkwardness” (due to motor issues and severe OCD) that are so easily written off as the only defining attributes of those diagnosed with Aspergers.

      We have MUCH to gain from what Autistic adults have to share with us, no matter where they fall on the spectrum. Many people vastly underestimate their Autistic children when they are not handed an Asperger’s diagnosis. Just ask Carly Fleischman, or Tito Mukhopadhyay, or Dov Shestack, or Amy Sequenzia. They were wildly misunderstood and underestimated for much of their lives. Shame on anyone who dared to write them off.

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    3. The fact that you can write eloquently tells me your autism is mild.
      Said to Amy Sequenzia, who is moderately Autistic and non-speaking. In fact, writing eloquently is essential for her to communicate. You were saying?

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  2. I actually just managed to find a copy of “I am autism” on vimeo and re-watched it because I couldn’t remember what it was like.

    That was, uh, a bad idea. I’m scared now. =(

    I like this post, though. =)

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  3. What I would really love to understand is this. How can a Board member of Autism Speaks, who himself has a special needs child, have anything at all to say when the company he works for- FedEx- does not even offer any Autism services or therapies-other than Mental health services for a diagnosis only and then only medication as a treatment option to the employees. As the company he works for is self funded and does not have to comply with any state mandated Autism treatment. They will not cover treatment for ” Anything deemed as educational in nature”. They just direct you to Idea laws and how to go about getting the schools to get your child therapies. Of course the schools only give certain children who are not making “academic gains” these services. Which leaves many academically inclined children on the spectrum at a loss of much needed social interaction help. : (
    But, you got love that Nascar Autism Speaks car they sponser every year and the free kit 100 days of Autism kit you can pick up a a FedEx office…

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  4. But you gotta love that Nascar Autism Speaks car they sponsor every year […]
    Really? Guess I’ll stick to eating Red Hots rather than holding out for Hot Tamales (NASCAR logo on the box in some kind of licensing deal. From UK, so please forgive lack of detailed info. Too tired to google).

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