Opinion

Opinion | Susan Ackerman

The many walls of silence around autism

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Autism is a spectrum disorder. My son, my family, and I live somewhere in the lower quarter of that spectrum, blissfully apart from the devastation of self-injurious behaviors but firmly entrenched in a nonverbal world where pictures are used solely to communicate wants. Of course, “wants” are mostly food, breaks, videos, and the bathroom. My son and I function in a concrete world. After 21 years, I continue to believe that my boy lives in a more complex world in his own mind, but we have not found a way to bridge the communication divide. It is possible that only one of us even thinks this is a loss. Who is to know?

I watch my son. I know his preferences. I know his rituals and routines, like how he likes to perfectly weight a sock for flapping and how he repetitively fills his mouth with saliva and looks to me to say “swallow” and how he insists my zipper be zipped to the top. But I may not know my son at all.

I do not know what he understands from our shared world, or what he thinks about and is unable to convey. Humans are programmed with a drive to communicate, interact, and share. I know my son has interest in human contact, but it is less clear how much he values sharing. It is possible that shared attention holds no importance to him, but it is also possible that he does not recognize that my attention is even separate from his and that he needs to bring me into his sphere. How, really, can I know? I respect my son too much to guess. So, with no other options, I accept. I love. I stroke a cheek or tickle. We laugh, or, like other young people, he ducks away.

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Most people do not understand this world of autism. When women hear that my son cannot speak, they tend to respond with: “It must be so hard to never hear ‘I love you.’ ” Really? Would I waste three words on declarations of love?

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Occasionally, my son talks in my dreams. Even in sleep, I am aware that these moments are precious, and I strain to listen closely and remember every detail. I am never waiting to hear about love, or about myself at all. I simply want to hear my son’s thoughts about his world. If I am going to have only one moment, I want my son to give me a tiny bit of understanding that I can use every day to improve and share his world. Because for humans, understanding and the sharing of thoughts is a fundamental need. I love my son deeply, with a fierce protective instinct that mothers save for their most vulnerable children. After 21 years, I have constructed firewalls in my brain to guard against sorrow. I do not look to change my son or his behavior. Except . . . I wish I could see the workings of his mind, even just once, to carry us through a lifetime.

I settle for the briefest glimpses. I take ridiculous delight in tiny events. A few years ago, when we were on a drive and ran out of snacks, my daughter and I repeatedly showed my son the empty containers. He responded by using his iPad for food requests over and over. I patiently repeated: “The food is gone” over and over, in an exchange that all parents of children with autism understand. And then, using his iPad, my son changed his message and announced: “I want a vending machine.” My boy had processed the problem and come up with a solution! The message was clear: If we don’t have food, Mom, let’s buy some. This was a request, sure, but it was also a plan. It was a communication highlight of 2014, and I treasure it still.

So, I struggle when people tell me that I should celebrate the benefits of autism. I understand that the experience of the high end of the spectrum — and even the middle of the spectrum — is different from my experience. I like getting to know kids with autism and learning about their interests and strengths. I respect those very verbal young people who resent the term “disabled.” But, in the end, I chafe at the new political correctness that suggests that I should feel defensive for wanting a cure for autism rather than a celebration of it. I resent when people at the high end of the spectrum want to speak for everyone with autism. I object that, in the modern autism community, my desire to eliminate autism is viewed as a personal denigration of my son and one more reason to find me wanting and not fully evolved. I refuse to be shamed into silence.

My world is silent enough.

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So, here is what I want.

I want a world in which people are kind and accepting of difference.

I want to love and enjoy my son and celebrate each small connection and accomplishment.

I want families to have access to affordable resources for their loved ones across the lifespan.

I want more autism research so that we can improve treatments and find a way to prevent autism in the future.

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And I want more of those tiny moments when I get the tiniest glimmer of my son’s brain at work.

Susan Ackerman is a registered nurse.