Listen Up! Autism Speaks.
A post that I saw today on Facebook regarding misappropriation of funds by Autism Speaks intrigued me. It’s an accusation that I’ve seen more than once in the autism community. Some are so staunchly against the organization that they have set up online petitions to boycott it. My experience with Autism Speaks has been very different so I felt that I had to investigate.
When I searched misappropriation of funds and Autism speaks on www.google.com, I found a handful of articles. Several of them were online petitions not describing the reason that they were posted. I found an article regarding misappropriation of funds by a chapter of The Autism Society. I did find that people were unhappy with the amount of money that comes back to local families and organizations for direct services. I later found an article explaining this. The fact is that Autism Speaks does not claim to be raising funds for direct services. According to the Autism Speaks website, their mission is:
“At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.
Autism Speaks. It’s time to listen.”
Autism Speaks never claims to provide any type of services to any one individual, family or organization. In fact, they clearly state that they fund research, raise public awareness and attempt to bring the autism community together. The evidence of these efforts are plentiful. They have grants and fellowships available on their website, administer clinical programs such as a genetic resource exchange and clinical trials. They provide family services such as the 100 Day Kit, which guides families through what they should do during the first 100 days after diagnosis. Additionally, as evidenced by the passage of autism insurance reform in Michigan last week, as well as 29 other states, provide advocacy services.
I have seen their advocacy first hand in my efforts to assist in getting the autism insurance reform passed in Michigan. During our attempt in 2010 to get this legislation passed, Autism Speaks sent representatives to speak with legislators and provide information to them, such as actuarial studies from states that already had coverage. In the most recent (and successful) effort, Autism Speaks sent representatives to try to bring groups from across the state together in one effort. Additionally, Autism Speaks has done more than one can imagine to raise autism awareness, with their “Light It Up Blue” campaign and their partnership with Toys R’ Us in raising funds and awareness through their stores, as well assisting with the creation of a “special needs” toy catalog.
While many may not agree with the mission of Autism Speaks, I think that it’s a far reach to say that by meeting it that they are misappropriating funds. Everyone is entitled to their opinion, but I do ask that prior to forming an opinion, that you become educated about what it is that they intend to do and whether or not those goals are met.