April is Autism Awareness Month. My son has ASD with great impairment.
I don't get on the soap box very often, but an old friend on FB turned her FB blue in support of Autism Awareness and linked to an Autism Speaks post. I don't post call outs or things like that on other people's walls. It's rude and just not classy, so I posted a very similar response to what I'm posting here. Autism Speaks is the only medical non-profit who has the people they say they are advocating for stand up and say, "They don't represent me."
My first exposure to Autism Speaks was really within a few months of my son's diagnosis. Even before they started taking over so many of the smaller autism charities they were one of the first web sites to pop up when you searched. I was exploring their website and there were videos of parents of autistic kids talking about their experiences. I didn't even make it through the first one because, while the Vice President of the group was sitting next to her child, she described how her child made her want to kill herself and that she had fantasized about driving into a bridge with her daughter in the car. While I would never discount someone feeling that frustrated, I am shocked that she would say that in front of her child. Kenny was almost completely non-verbal at the time, but I don't doubt that he listened to me and understood what I was saying a lot more of the time than when he reacted appropriately to what I said. This is just the first thing I saw that shows me that the attitude within the organization is condescending and disrespectful to the people they claim to be representing and trying to help.
Most of the money they raise goes to research to eradicate the occurrence of autism. A paltry amount of money raised goes to community services. They do not invest in new ways to help existing people with autism spectrum disorders cope, develop, or fit into society. There is an ever growing population of young adults who are aging out of the public school system and there are almost no supports for them, yet Autism Speaks has the goal of eradicating autism.
John Elder Robinson worked with Autism Speaks for a long time trying to change the way they spoke of Autism Spectrum Disorders and for some reason, he couldn't seem to convince neurologically normal people that the way they spoke of the condition was disrespectful to people with autism. This is the piece he wrote when he stepped down from their board in 2013.