From Autism Speaks’ “PSA,” “I am Autism.”
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 are 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, a birthday party, a public park without a struggle, without embarrassment, without pain. You have no cure for me. Your scientists don’t have the resources and I relish their desperation. Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism. I have no interest in right or wrong. 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?” And the truth is, I’m still winning. And you’re scared. And you should be. I am autism. You ignored me. That was a mistake.
And to autism, I say, I am a father, a mother, a grandparent, brother, a sister. We will spend every waking hour trying to weaken you. We don’t need sleep because we will not rest until you do. Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community. I am a parent riding towards you and you can push me off this horse time and time again but I will get up, climb back on, and ride on with the message. Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers and daughters and fathers and sons. We are the United Kingdom. The United States. China. Argentina. Russian. European Union. We are the United Nations. We are coming together in all climates. We call on all faiths. We search with technology and voodoo, prayer and herbs, kinetic studies, and a growing awareness you have never anticipated. We have had challenges, but we are the best when overcoming them. We speak the only language that matters—love for our children. Our capacity to love is greater than your capacity to overwhelm. Autism is naive. You are alone. We are a community of warriors. We have a voice. You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness. You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands? You have not been properly introduced to this community of parents and grandparents, and siblings and friends, and schoolteachers and therapists, pediatricians and scientists. Autism if you are not scared, you should be. When you came for my child, you forgot. You came for me. Autism, are you listening?
Their motto is “It’s time to listen.” As if this is what autism says. As if this is what you should hear when you hear the gleeful vocal stims of an autistic child or see my beautiful boyfriend flapping his hands with excitement. As if all that matters is the family. You noticed that, right? This so-called “PSA” doesn’t focus on the individuals. It tells you all about the torment and terror placed upon the families. And, quite deliberately, it avoids focusing on any of the positive aspects, of which there are many.
Autism Speaks would have you believe that Autism is a monster which they can represent in some thinly veiled scare tactic. “Give us your money, because we say that autism wants to destroy you.” “Give us your money, because we’re not willing to take care of the people we claim to serve.”
This PSA claims that the families are the ones that matter… but the organization dedicates a whopping 4% of their budget to helping and providing services for families.
They want to help people… but what they really want is a “cure.” However, this “cure” is a misnomer. It’s actually a preventative measure, one that they wish to use to prevent autism from existing.
They act as if autism and an individual can be separated, as if a person is still the same person without autism. As if that person ever was without autism. I ask you this: If you know someone on the spectrum, can you separate them from their “autistic traits”? Can you draw the line and say, “This is autism, and this is the person I love”? What does autism affect? Is it only meltdowns and struggles to communicate? Or is it more than that? Is my boyfriend’s literal sense of humor just coincidentally similar to the way that most autistic people think literally? Is my lovely Em’s knack for learning all there is to know about magic (and enthusiastically sharing it with me) simply asymptotic to the fact that many people on the spectrum tend to become obsessed with one particular topic? Can I take away “autism” and leave those parts behind?
And this cure… How sure are you that the person you say you love wants it, too? Have you asked? Or do you just assume that they want it because you do? And why do you want it? Do you have a good reason, or is this just “too hard” for you?
This organization disgusts me. Members of it have been quoted saying that they’ve considered killing their autistic children, but chose not to solely because of their “normal” kids. Contributors have indeed killed their children. The leaders, the ones in charge, who determine what is and is not important to the organization, are all neurotypical. If autism is speaking, and they’re claiming to listen, how is it possible to do that without any autistic representation?
How can you claim to care if you want to wipe out an integral part of a person?
How can you say you want to listen if you don’t acknowledge communication unless it is verbal and direct?
How can you try to represent an entire population if you don’t value their opinions?
To learn more, take it from them (as directly as possible), not me…
Diary of a Mom — Jess Wilson, mother of two, duaghter Brooke is hilarious, adorable, talented, brilliant, and autistic
Emma’s Hope Book — Ariane Zurcher, daughter Emma is a writer (often featured on the blog), insightful, witty, and autistic
AutisticHoya — an autistic adult, magnificently intelligent, college student, activist, author, speaker
Amy Sequenzia — nonspeaking adult, advocate/activist, epileptic, writer, poet, autistic
Others to look into…
- John Elder Robison
- M Kelter
- Roy Richard Grinker
- Carly Fleischmann
A quick but important note: While I frequently write about autism and attempt to be an advocate, my opinion will never matter as much as the opinions of those individuals who are on the autism spectrum. This is not an attempt to devalue my own opinion, but a necessary acknowledgment that I cannot claim to speak for a population of which I am not a member. My purpose is to remind the rest of the world that a person who does not use expressive verbal language is not without a voice. And that voice is infinitely more important in this battle than my own.
Purposeful Meandering 