The Day I Gave Up on Autism Speaks
I spent the first few months after Charlie’s diagnosis in a state of agonized paralysis. The only moments of the day I enjoyed were the ones after I woke up, just before I remembered that Charlie had autism and that this was really happening to our lives. Some days I wished I was dead. Some days I wished he was dead. Some days I wished the world would just spontaneously catch fire and we could escape all the pain we had and what we knew was to come throughout his life.
In his book NeuroTribes, Steve Silberman describes a questionnaire drafted in 1920 by the director of a group home for children with (what would eventually be defined as) autism. The questionnaire was sent to the children’s parents. The first question read “Would you give your consent in every circumstance to a painless shortening of your child’s life, after an expert had determined him incurably imbecilic?” The responses shocked even its author. He was asking hypothetically. The parents were upset it wasn’t being asked pragmatically. One mother responded that if the institution could actually do the deed, why bother her with permission? Just take the child’s life and be done with it.
This dark moment of autism history aside, the notion of a parent consenting to the extermination of their child because of their condition speaks as much to their state of agony and hysteria as it does to the ugliness of consenting to actual murder. Parents faced with this conundrum often fall into the same mindset, they want a cure or nothing. There’s no third option.
When your child turns two, a doctor, a speech therapist, or some other learned professional hints that your child may have autism. You wait three months to see a neurologist, who then provides a formal diagnosis. At that point nothing happens. The medical community has no apparatus that springs into action to assist you or your child. You spend the next few months wandering in a fog; angry, desperate, hopeless, and following what few leads are available to you in pursuit of treatment your insurance likely will not cover. Even those diagnosed with terminal diseases are offered hospice. With autism, you child’s incurable condition is treated with a flyer called “10 Myths About Autism”.
Autism Speaks provides an invaluable service at this critical moment. Every autism parent has heard of it. Every autism parent has recommended it. Out of the fog comes its powder blue beacon of hope. Stories from parents just like you, articles with helpful tips, how-to guides on finding resources. It’s like a base camp for your new shitty life as an autism parent.
I myself purchased a bag of blue “Autism Speaks: It’s time to listen” bracelets as well as a bunch of blue light bulbs so I could “Light it Up Blue” on Autism Awareness Day. I purchased all that crap and then sat back in my big living room chair, luxuriating in cold comfort because I believed in what Autism Speaks is selling: the latter of a binary choice between falling to pieces and hoping for a cure. I still had trouble falling asleep. Still had trouble staying asleep. I still felt angry all the time. I still felt scared.
Then came the day when Donald Trump made the infamous “disabled reporter” attack. Never in my life had I seen a public official perform what was essentially the blackface version of mimicking somebody with a disability. It was impossible to not see my son in that reporter. There are groups like the NAACP, the Anti-Defamation League, and NOW, who are typically reached for comment after such public acts of ignorance. They release powerful statements in response to open bigotry. Surely, this was the moment for Autism Speaks to say something on behalf of our children. To take the lead. They said nothing. The did nothing. It was as if nothing had happened, despite how deep their community felt outrage. Even today, a search within the Autism Speaks website for “Donald Trump” reveals a few articles regarding a Celebrity Apprentice fundraiser and nothing more.
“Okay,” I thought. “They don’t want to get political”. And I can understand that. Even though it might be construed as a conflict of interest that they take donations from numerous pro-Trump companies such as Home Depot, I can understand the want to retain bipartisan purity for the sake of the cause. But then I saw the Bad Santa 2 trailer. The film, featuring an autistic teen, had a trailer which featured numerous disgusting disparagement's of the autism community. At one point in the trailer a character actually looks at the teen with autism and says, “If this ain’t fetal alcohol syndrome I don’t know what is.”
(If you want irony, btw, seek out the Bad Santa cast and crew’s social media accounts. For a group of bigots they sure do ooze sanctimony against Trump)
I emailed Autism Speaks and messaged them on Facebook, pleading for them to issue a response to the film and the trailer. It’s not like commenting on a film studio is going to sway anyone away from the cause who isn’t working in Hollywood. It’s not like any other advocacy group wouldn’t do the same thing if a film were being advertised highlighting its open ignorance. To this day, the only “Bad Santa” you can find mention of on the Autism Speaks website is a mall Santa in Australia who taunted a boy with Asperger’s. Mock a child with autism in a mall in Australia and autism “speaks”, mock all children with autism in a national ad campaign and autism cowers in a corner.
The kind of cutesy advocacy that Autism Speaks promotes with its blue spangled garbage has as much of an impact in creating a better tomorrow for our children as wearing a world’s greatest grandpa hat assures one’s place in the annals of great grandpa history. It’s a passive, rudderless form of support that does nothing to educate the public about neurodiversity, or promote acceptance. Worse, it keeps one in a perpetual state of helpless grief because it doesn’t provide any other options. A kind of stagnant hope for something that may or may not come.
I don’t think that Autism Speaks is without value. It provides a starting point. It has some helpful links. When you’re fumbling around during those first few weeks post-diagnosis it helps to have a place to get your bearings. But Autism Speaks’ monopoly over the autism community is dangerous if it refuses to do anything but collect money in exchange for telling parents their journey will be magical and that every child is different and that we’re getting closer than we ever have been before at figuring this whole autism thing out.
I’ve found a lot of peace in abandoning my passive wait for a cure and instead embracing who my son is and focusing on proactively trying to remove the crap that will impact his ability to be equal with his peers. Blue light bulbs are a great way to let your neighbors know you love somebody with autism. But the promotion of neurodiversity and defeat of anti-autism bigotry is a great way to get your neighbors to love somebody with autism too.
Hope for me now has less to do with changing my son and more to do with fighting to make the world he’ll grow into more compatible for him and children like him. That starts with eliminating nasty stereotypes, calling out bullies, and fighting to ensure that politicians and film studios are as terrified of stepping on the ASD community’s toes as they would be to step on anyone else’s.
I gave up on Autism Speaks and I sleep much better at night. I spend more time experiencing and appreciating my son for who he is, and cherishing his not-so-typical existence. I have an awesome child and an awesome life. I don’t care as much about curing him as I do curing other’s ignorance surrounding him. For me, autism has done enough speaking. Autism is ready to start fighting back.