Sunday, December 22, 2013

To Whom It May Concern: Open Letter to Sponsors of Autism Speaks

To Whom it May Concern,

I am contacting you today to express my concern over your continued support to an organization that actively hurts me, my son, and my autistic friends. 

I know by now you are fully aware of the efforts to bring attention to the harm caused by Autism Speaks to autistic people and their families. You have been notified by many autistic people, parents of autistic children and professionals who work with autistic people of how damaging this charity is,but still give support to an organization that the very people it is suppose to help actively condemn. 

Ask yourself this :Why would autistic people be so against an autism charity?

To begin, the language Autism speaks uses to represent us is dehumanizing at best. We have been called lost, kidnapped, missing, diseased, sick, ill, and epidemics. We have been blamed for divorces, suicide/homicide attempts, and making other people (parents mostly) miserable. If you replaced the word autism in the messages Autism Speaks sends out with your choice of gender, sexual orientation, race, or creed, it would be considered hate speech and/or discrimination. 

To date, Autism Speaks has no autistic people in leadership roles. Autistic people have tried to work with Autism Speaks and have brought the lack of inclusion of autistic people to their attention many many times. Our words are ignored, we have been given lip service and used a tokens instead of being involved in decision making. "Nothing about us without us' has been the long standing motto for the disability community, but somehow Autism speaks seems to think they are excluded from this.

More funding goes towards research for cause and cure than towards actually helping autistic people. Autism Speaks actively claims we are a growing epidemic, which is totally not true. If you understood the history of autism, you would understand that the criteria and diagnostic processes have changed dramatically over the years, so logically it is NOT a growing epidemic. We have just gotten better at recognizing and diagnosing it. Autistic people have always been around, we didn't just appear out of no where, some of us even breed and have autistic children of our own. (gasp!)

We (autistic people) need REAL CONCRETE help and support. Autism Speaks does not offer that to us. Autism Speaks actively promotes the need to eradicate us over actually supporting us. Their inflated statistics look good at a glance, but when you dig down further you find that only 4% of what they raise actually goes back into the community, and is often "help" that is very hard to access. 

We don't need a cure, what we need is support. We need to be involved in making the decisions about what supports work for us. We deserve not to have ourselves, our children and the ones we love talked about as some diseased epidemic that people are afraid of. We need acceptance, not "awareness". We need to be included in all efforts of advocacy for autism.

I understand that by supporting Autism Speaks you believe you are helping autistic people and their families. I would like to believe that you think you are doing a good thing, but I want to make you aware that what you are supporting is damaging to a community of people and not real help.There are organizations out there that are ran by or actively include autistic people that you could be supporting, instead of supporting Autism Speaks.

I am hoping you will reconsider and cease your support to Autism Speaks and consider one of the organizations listed above or another local organization. By doing so you will directly help autistic people, as you had intended with your sponsorship of Autism Speaks. 

Thank you 
Image Description: Blue and Green square divided diagonally and framed in green. Text Reads: "When Autistic people consistently tell you that something is wrong with an autism org. LISTEN” Sharon da Vanport

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