What Autism Means to Me – Guest post by Flappiness Is
When I was asked to write about what autism means to me, I jumped right in. I had a metaphor ready, and I set my fingers to the keyboard. But everything I typed in my first draft was no good. So, I tried to look at it from another perspective. Then another. Before I knew it, this simple question gave me a serious case of writer’s block. It seemed that no matter what I wrote, someone would take issue with it. Somebody would angrily declare, “That’s not what autism is to me!”
And he’d be right. Autism can be described. But it refuses to be defined. That’s because autism will never mean the same thing to two people. Especially if those people are coming from different perspectives. Parents vs. teachers. Grandparents vs. parents. Science vs. conspiracy theorists. Parents of “low-functioning” children vs. “high functioning” self-advocates. The media. Public perception.
It’s a lot of cooks in the kitchen. Their problem is that they can’t all agree on what they’re cooking. They all want different things. They all approach autism from their own subjective experiences. They observe autism from their respective places and report back to the world – which constructs its concept of autism from these reports. And that is problematic.
To the public, autism is an unknown. By now, almost everyone knows somebody affected by autism. Yet they may know only one such person. Since autism is such a very wide spectrum, their perceptions are flavored by whom they know and what they see on TV.
To the media, autism is a hot-button issue. It sells newspapers and generates tweets. And it makes for great TV programming. Talking heads debate vaccines. TV anchors attempt to make connections to violence. Autistic savants always manage to solve the crime, discover the hidden code, or crack us up with their wit and peculiarities.
To family and friends, autism can seem tragic. They see our struggles to get therapy, engage our children, and continue to meet the needs of our families and jobs. Some have opinions to share, based on doctor’s office magazines and morning news shows. Some of them get it. They love our children unconditionally and understand their individuality. But some shy away. They make pitying faces. And some drive us crazy seeking “the cause” of autism, rather than focus on the joys they can have with our kids.
To my son, autism is all he knows. He doesn’t look at the world through my neurotypical eyes and see anything wrong. At least not yet. He sees and hears things that dazzle and delight him. He loves what he loves. And, right now, he doesn’t think he is missing out on anything. It is possible he will never view himself as wanting. It is possible that he will always feel left wanting. I don’t know.
To self-advocates, autism is all they’ve ever known as well. Only they have the ability to advocate for themselves and to seek and enjoy many of the same opportunities that neurotypicals do. They may do things differently, but they do them. They are an active part of our communities. And, like NTs, they value their own interests, realities, and perspectives. They hear talk of “curing autism”. Yet they don’t necessarily see themselves as a dread malady from which the world needs to be delivered. They see the contributions of people like themselves to humanity, and they don’t want to be erased anymore than we do.
But I am the parent of an autistic child. I have known life without autism. I have known the joys of conversation, romantic love, parenthood, traveling the world, writing, faith, and more. So, when I see autism in its most severe forms, I see an absence of those things. I see it stealing something precious from my child. Sometimes, that makes me angry. Sometimes that hurts. I see other little boys starting sports, Scouts, karate lessons, and every other rite of childhood. Then I see my son yelling, stimming, and flapping, oblivious to what he is missing. I can’t help but grieve sometimes. I can’t help but wish he had the same ability to access our world as every other child. I’m his mother. And I want every happiness for him, not just the ones of which he is aware.
To me, the truth of autism sits on a hill, behind a circular fence. We all surround the fence, attempting to catch a glimpse so that we can understand. But the fence is tall, and there are too many of us to each be able to see. But every now and then, there are holes in the fence that those in close proximity can look through. Those with a view are self-advocates, the severely affected, parents, teachers, scientists, conspiracy theorists, the media, TV, etc. Behind them are thousands of people shouting out, “What do you see?” Each of them attempts to yell back over their shoulder exactly what they see. But the holes are small and provide only a partial view. And everyone with a view is, of course, looking at it from a different vantage point. So the thousands get distorted views and partial truths. And, unfortunately, the most severely affected may have no language with which to communicate their perspective. Their voices do not carry, and we will never hear what they can see.
When I try to define autism, I can’t. Instead, I hear this cacophony of experiences and perspectives. And I realize that there is no way to define its meaning. Autism is people. And people cannot be defined. Described, loved, feared, praised – yes. But not defined. For there are no meanings to human beings. They simply are. Autism doesn’t mean anything to me. It’s just in my life like any other random thing. The only meaning it has it the one I assign it. Since the same will be true for my child, I must be careful to resist the temptation to define him as well. Otherwise, he might learn to accept the definitions of others.
And history teaches us no good has ever come of that.
So instead I’ll say what my son adds to my life. Hugs, kisses, smiles, laughter, messes, tantrums, endless appointments, IEPs, good days, sad days, worried days, flapping, courage, hope, faith – and love. A love that no dictionary will ever be able to define. For dictionaries are finite, and love is more.
To read more from this
writer, please check out
her blog at Flappiness Is…
For more from the blog event
Autism: The Bigger Picture
please visit here. Thanks for reading! : )