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