Autism Speaks hurts Autistic people. It hurts families and children. It hurts communities.
I am an Autistic adult but also the parent of an Autistic child. I know the realities of autism. What I don’t know are things like “grief” and “sorrow” and “despair”. I have never felt that way about myself or about my amazing Autistic child.
When my child was diagnosed, I was told to go to the Autism Speaks website. I was HORRIFIED by what I read. My wonderful, beautiful child was a burden. He was going to ruin my marriage. He was going to make me grieve for the “normal” child that I was supposed to have. I watched videos of children in crisis, at their most vulnerable, put on full display for the public. Humiliated by their parents and Autism Speaks to raise money. I saw a mother saying she thought about killing her child in front of that child as if she was not even there. I saw nothing of Autistic adults, as if we didn’t exist either. I was devastated, but not by autism. I was devastated by the lies that Autism Speaks was telling the world about my son. About me.
People have said to me “Oh, I’m so sorry!” upon learning that my child is Autistic. I am seen as an anomaly for loving and accepting my child exactly as he is. I don’t want to fix him, or make him “indistinguishable from his peers”, or to be pitied for the privilege of raising him. All that many people know of autism is the hate, the fear, the despair that is peddled by Autism Speaks. What they know is a lie because our lives are full, wonderful and valuable. We are Autistic and we are not broken. Autism Speaks wants the world to see us as damaged. Every day, we fight for acceptance. Every day, Autism Speaks makes our fight harder.
Autism Speaks claims to speak for us, without us. They claim to speak for our Autistic children while painting them as monsters. I can not stand idly by while this happens. I will boycott Autism Speaks until they make genuine, meaningful change that includes our voices, our reality, and an immediate stop to their campaign of hate against Autistic people. I do this for myself, for my son and for my community.