Autism Speaks cofounder Suzanne Wright's recent blog post dehumanizes autistic children and labels their parents as victims. Autism Speaks raises nearly $60 million a year in the name of autism but only 4% goes toward direct services. They are widely disliked by autistic adults and many family members for their complete failure to include autistics in their organization. They use horrific negative stereotypes of autistic children to market their charity. I am an autistic adult and my daughter and my brother are autistic too. I'd like for my daughter to have the opportunity to talk with a major supporter of Autism Speaks, Doug Sanders, President of Sprout Markets, who has a grocery store here in my neighborhood. My daughter is a talented artist, passionate, and she's better at public speaking than I am. If he got to know an autistic young adult, I thnk he'd be pretty impressed, and he just might rethink his views.
Letter I am sending to Doug Sanders, President of Sprouts and major supporter of Autism Speaks.
November 14, 2013
President, Sprouts Market
11811 N. Tatum Blvd., Suite 2400
Phoenix, AZ 85028
Dear Mr. Sanders,
My name is Cinder McDonald. I live walking distance from your store in Tempe and as a gluten intolerant individual, I shop there often. I have a 21-year-old daughter, Kyla, and a 41-year-old brother, Craig, who are on the autism spectrum like your son. You and I are alike in that the cause of autism is near and dear to our hearts. I fear, though, that we may have very different views on how to be the change we want to see happen for our loved ones with autism.
I see the Autism Speaks signs and logo every time I visit your store. I've visited the local Autism Walk where Sprouts gave away boxes and boxes of swag to participants. I understand that Sprouts has raised over $3 million dollars for Autism Speaks thus far. What you need to know is that not one of those dollars came from my family, my friends, or any of the many dozens of individuals with autism or their families that I personally know in the Phoenix area
There have been many more reasons to dislike Autism Speaks than to like them. I can quote statistics, easily verified, about how little of the money goes towards direct services for people with autism. I can talk about how their executives are paid some of the highest salaries in the nonprofit world, yet have done nothing to address one of the most serious issues in the autism world, that of the alarming stories of parent/caregiver murders of autistic children and adults in their care. I can talk about how they are, in the words of advocate John Elder Robinson, “the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target." He was their token, the only autistic individual to have any sort of role in all of their entire organization. He announced his resignation on November 13th, saying “Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice.”
What I want to talk to you about instead is what Suzanne Wright said in her call to action on November 11th.* I'd really like to know what your family thinks about the things Suzanne said about individuals with autism and their families. She says that families with autistic children are "not living", but simply existing "in despair". Is that true in your house? How about this:
“Each day across this country, those three million moms, dads and other care-takers I mentioned wake to the sounds of their son or daughter bounding through the house. That is - if they aren’t already awake. Truth be told, many of them barely sleep—or when they do – they somehow sleep with one ear towards their child’s room—always waiting. Wondering what they will get into next. Will they try to escape? Hurt themselves? Strip off their clothes? Climb the furniture? Raid the refrigerator? Sometimes – the silence is worse.”
When my daughter read this, she said, “I'm not a monster. I wish they'd stop thinking of me that way.” Suzanne Wright's vision of a family of an autistic child is a horror story. But then, it's the fear that brings in the big dollars, isn't it? My daughter was 16 when she first became aware of the Autism Speaks commercials playing in constant rotation on TV. Until that point, I hadn't made up my mind on Autism Speaks and she had no idea of who they were. She alternated between crying and rage. She kept asking why these people thought she was bad. I didn't have an answer to give her that day.
Mr. Sanders, my daughter wants to meet with you to ask you why you give money to Autism Speaks. Because there is more to autism than fear and despair.
Suzanne Wright’s blog
Since writing this letter, The Arc and Psychology Today have also issued statements about Autism Speaks