A brief note: I’m not someone who believes religion is inherently evil and damaging. However, it’s inarguable that religious institutions and self-serving people in them have done evil, damaging things to individuals, communities, and nations in the name of their religions throughout much of human history. If you don’t agree that there’s a difference between religions as philosophies, and the human-run institutions that gather temporal power in their names, you’re probably not going to get much out of this post.
I understand why people flock to Autism Speaks. Really, I do. Yes, as an autistic person and mother to one, I am furious, shocked, outraged, and exhausted by the hate speech this group produces, while still monopolizing the loyalty of millions of people and the attention of the media. But when people ask me how anyone who knows someone autistic could possibly support this organization, I’m forced to admit that it makes perfect sense. Religious institutions have been abusing the faithful for centuries with many of the same tactics.
It starts with a crisis. Autism is not a disease, nor is it a death sentence, but the current public opinion tells parents whose child is diagnosed with autism that they should be devastated. Give up the dreams you have for your child, they’re told. They will never give you those perfect moments that every parent imagines for nine months or longer. They won’t go to kindergarten, or play sports, or go to college, or marry. You may never hear them say “I love you.”* You didn’t get the child you expected; you’re the victim of a cruel bait-and-switch. Autism Speaks validates this fear and betrayal; autism is a thief that abducts children and leaves dolls and monsters in their place.
In the face of this decree, parents look for absolution. They confess to a parade of doctors that they ate linguine with white wine sauce or took an antidepressant during pregnancy, or broke down and asked for pain relief during labor, or followed the recommended vaccination schedule during the first years of their child’s life. Autism Speaks tells parents that they don’t deserve guilt or blame for their child’s condition; autism is cruel and whimsical like a natural disaster.
The only acceptable response to denial and despair is to follow the proscribed path to salvation, and parents are promised that, if they do enough, they can pull their child back from the brink of hopelessness and save their families. Given the choice, what could possibly be too radical a course? To save a child, is there ever too much money, too many doctors, too many hours of therapy? The community of the suffering lifts up parents who pursue the most extreme efforts of self-sacrifice and dedication, and the stories of these saints are shared like talismans of paradise. Autism Speaks leverages the language of battle; autism is an enemy that can only be defeated by militant means.
And someday, the war will be over. Someday, parents’ sacrifice will be unnecessary, but only if we raise more money, hand out more blue lightbulbs, and find a “cure”. A cure would bring back the changelings, the lost children we misplaced through our carelessness. Of course, there’s one thing that’s even better than a cure: a test. If we had a test, surely no compassionate person would inflict this pain on innocent children and those who love them.** Autism Speaks offers hope of redemption and salvation; autism can be escaped and wiped out.
Except that none of this is true. The lie is that autism is a disease, or a thief, or a disaster, or a war, or a thing that can or should be exterminated. If you believe any of those, then you must accept that you believe the same thing of autistic people themselves.
And if you can’t believe that anyone is a disaster or a war or a thing that should be exterminated, then you must reject Autism Speaks. Their rhetoric makes precisely these claims about autism, and they use up the public’s attention span on the subject of autism to raise money that almost never actually helps a single autistic person or their family with what they need right now.
The most important thing about abusive religious institutions AND Autism Speaks is that they cannot tolerate sunlight, and they cannot function without a silent object of devotion. When autistic people’s voices are heard, the lies and hate speech wither in the full force of the logic, empathy, power, and beauty of their real lived experiences.
Because autistic people and their families are fully alive, no matter what Autism Speaks says. And life is messy, chaotic, expensive, and exhausting. It’s also hilarious, and meaningful, and transcendent.
Whether or not you believe there’s something that comes after this life as we’re living it, surely it can’t be won by silencing and abusing others on the way.
* – It hasn’t been that long since the same things were said to parents of LGBT or Down’s Syndrome children. In some places, they still are.
** – This is not a new concept. Most people know it under another name: eugenics.