Dear Autism Speaks-
Why do you claim to speak for my brother when his goals are not your goals? My brother is autistic and he loves himself. He has never expressed any sort of sentiment about wanting to change. In fact, he is quite happy the way that he is. He loves video games, movies, and anything to do with water. He has great friends, wonderful teachers, and an accepting community that provides him with opportunities. He does not want a cure. He is not sick. He wants to continue living as himself.
Why do you claim to speak for my family when you insist that my brother is a burden on us? My brother is autistic and we love him for who he is. He is our son and our brother and we are insulted that you paint him in such a light when the only burden we can see is the uninclusive way society functions. We are not stressed because my brother exists. We are stressed because society does not want him to.
Why do you claim to help the folks who are not as fortunate as my brother and my family are? Many autistic people do not have loving families, supportive communities, good teachers, and opportunity. We do not hear about them. Is erasing their existences your idea of helping? Or perhaps it is providing only 3% of your budget to “family services”?
Why do you claim to speak for autistic people when your entire board is allistic? You treat autistic people like puzzles- giant mysteries- when autistic people have been trying to explain autism to you for years. You are not listening, so you have no authority to speak. All of the autistic people who have tried to help you have abandoned you.
Autism Speaks, you insist that autistic people need to change in order to fit in in the world, but that is a lie. It is the world that needs to change so that autistic people can exist and be themselves. Every difficulty my family has encountered stems from society being cruel and unaccepting, not from my brother being autistic. Sure, I worry about my brother, but it’s not because of who he is. I worry about my brother because the world doesn’t treat autistic people as fully human. My parent’s are not burdened because my brother is not capable of having a future. They are burdened because society does not offer him one. I did not lay awake at night in high school because I was nervous my brother wouldn’t fit in. I laid awake at night because I knew many of the kids were ignorant and terrible and all at the fault of their own. My brother is not frustrated because his autism limits him. He is frustrated because he cannot express himself in ways that are deemed acceptable by an uneducated public.
And while society does a great job making sure ensuring the happiness of autistic people is incredibly difficult, you are busy increasing the stigma. You create short films with scary music insisting that autistic people tear apart families. You give voice to unintelligent caretakers who speak about hating their children while those same children are in earshot and capable of hearing and understanding. You use inaccurate terminology that autistic people have asked you time and time again to not use. You claim to give autistic people a voice when, in fact, you are just stealing the voices they already had so you can twist them and misconstrue them to fit your fear-mongering, money-making narratives.
Autism is not a disease. It is a way of being, and autistic people have been telling us what we can do to make that existence easier. They do not want a cure, so why are we ignoring them and funnelling millions of dollars into research for one? They do not want us to support Autism Speaks, so why are we ignoring them and continuing to support an organization that marginalizes them? Stop donating to them, stop buying their puzzle-piece stickers, stop using them as your philanthropy. I urge every single person who might come across this letter to read what autistic people have written and to listen to what autistic people have said. Allistic people have a duty to listen to those voices and to make the world more inclusive. To expect autistic people to change for our convenience is selfish, and it is a slippery slope. Autistic people will always exist and they have a right to be here and to live their lives with the same convenience that allistic people can.
And my brother? He is asking for much of the same, but he is ignored and forgotten by both allistic-run groups and autism advocacy groups who pride themselves on creating tools that are still not accessible to those who have an incredibly difficult time accessing anything. While Autism Speaks actively use folks like my brother to further stigmatization against autistic people, the fact that those who are supposed to be advocating for him leave him behind passively creates the same stigma. My brother has many autistic traits, but he exists too. His voice deserves to be heard. When anyone, especially Autism Speaks, claims to speak for him, they are taking the voice that he already has away. You are making him voiceless. You are creating his burden.