Four days earlier, Autism Speaks had released a short film, Autism Every Day. The documentary, full of unmanageable children and hopeless mothers, portrayed devastating images of families living with autism. Alison Tepper Singer, one of the mothers interviewed (and the executive vice president of Autism Speaks at the time) said the following:
“I remember that was a very scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jodie in the car and driving off the George Washington Bridge. ... It’s only because of Lauren, because I have another child that I probably didn’t do it.”She was speaking, by the way, in front of her autistic daughter. (6:10 minute mark)
Ali Elmezayen, on the other hand, wasn't desperate; just greedy. So, after purchasing six million dollars worth of life insurance, he rolled down his car window, drove his two autistic sons and his domestic partner off a Los Angeles pier, and then swam to safety himself. The boys didn't survive. A third son, not autistic, was away at camp. That was in July, 2019.
According to the Autism Self Advocacy Network (ASAN), 600 people with disabilities have been murdered by their parents or caregivers in the past five years. The problem is pressing enough that ASAN has published an anti-filicide toolkit.
Murder of the disabled is unspeakable and unfortunately, it is timeless. But in the case of autistics, special credit for encouraging filicide goes to the one organization that was supposed to advocate for them: Autism Speaks.
Yes, that Autism Speaks, the one with the puzzle pieces and the happy-go-lucky fundraising walks and the "Light it Up Blue" campaign every April.
Autism Speaks has ingrained American society with the stereotypical image of the autistic child: unresponsive, screaming, unmanageable, and not even really there.
AS was formed in 2005 by Suzanne and Bob Wright (Bob Wright was an executive at NBC) after their grandson was diagnosed with autism. After an infusion of $25 million by Bernie Marcus -- the founder of Home Depot -- AS quickly became the organization purportedly advocating for the autism community.
Dollars that had previously gone to local organizations for family services were quickly siphoned off by AS and diverted to research, lobbying, and "education."
Autism Speaks wasn't interested in providing services. Its mission was to find the cause of autism and eradicate it. Among its highest priorities was research exploring the link between vaccines and autism.
From the beginning, AS used fear to vilify what it saw as the scourge and tragedy of autism. The image we have of autism today is a direct result of this very effective campaign.
AS's message was clear and consistent: Your child is gone now. And the burden of caring for what remains of them will inevitably lead to divorce, poverty, and constant shame.
Consider this excerpt from AS's very dark 2009 video, "I am Autism." The mood is grim: The foreboding sound of a haunting wind. A relentless parade of lost-looking autistic kids. And, from a menacing narrator:
I am autism. I’m visible in your children, but if I can help it, I am invisible to you until it’s too late. I know where you live. And guess what? I live there too. I hover around all of you. I know no color barrier, no religion, no morality, no currency. I speak your language fluently. And with every voice I take away, I acquire yet another language.
I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined.
And if you’re happily married, I will make sure that your marriage fails.Your money will fall into my hands, and I will bankrupt you for my own self-gain. I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain. ....
I am autism.... I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?In 2013, AS issued a "call to action" written by Suzanne Wright:
If three million children in America one day went missing -- what would we as a country do? .... These families are not living. They are existing. Breathing -- yes. Sleeping -- maybe. Working -- most definitely -- 24/7. This is autism. Life is lived moment-to-moment. In anticipation of the child's next move. In despair. In fear of the future. This is autism.Following Wright's statement (later removed from the website), the sole autistic in AS's leadership resigned in disgust.
Autism Speaks has significantly cleaned up its act, and has actually done some good, but only under heavy pressure from the autistic community. The organization has yet to take responsibility for its dark history. And while AS finally conceded that there is no link between autism and vaccines, its priority is still research, lobbying, and education. A whopping 2% of its budget goes toward direct services for families. Far more goes for bloated executive salaries.
AS buoyantly notes that it took the word "cure" out of its mission statement in 2016, and indeed autistics had been pressing for this because they don't see autism as a defect to be cured. However, AS doesn't acknowledge this perspective. They only say that they've stopped looking for a cure because they don't think they'll find one.
Meanwhile, AS has never allowed more than token representation by autistics on its board. There have never been more than 2 autistics on a board of 28, and currently there's just one. Imagine if the Ms. Foundation had only one woman on its board!
It's also troubling that some of the original board members still serve, and Suzanne Wright continues to be glorified as a hero on the website. So it's no wonder that autistic self advocates continue to condemn the organization.
All in all, Autism Speaks has a long way to go before I light it up blue in April.
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