An Autism Diary

A day in the life of David Hartley

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.

Fence HoleBut 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.

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To read more from this
writer, please check out
her blog at Flappiness Is…
🙂
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For more from the blog event
Autism: The Bigger Picture
please visit here. Thanks for reading! : )
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10 Comments

  1. Andrew Daigle

    I am a 16 year old kid with Asperger’s syndrome. I find this essay to be intriguing and correctly shown. That last metaphor was apt. And, since I can understand most low functioning autistics, I’m going to speak up for them and what they see.

    • Thank-you 🙂 and behalf of my son, who is one of the low functioning, thank-you especially for being willing to be a voice. : )

  2. caffieneplease

    Thank you for sharing!

  3. Thank you for the post and I liked the bit about how different all the different perspectives make it.

  4. Anonymous

    My son is 16 with autism I related to this so much I’ve wanted the same things for my child but yet I got a totally unique individual with abilities and talents that are remarkable. I’ve been blessed to have given birth to this amazing person whom I love with all my heart as I do my other children.

  5. Anonymous

    V ery well said. Explains very well all the different perspectives people have of autism and where those perspectives come from. Thank you for being a voice…………

  6. Wow. I got goosebumps reading your analogy about different people getting small glimpses through holes in a tall fence on top of a hill.
    Thanks so much for writing this…it helps to read it. My son is three and we’re not really sure where he falls on the spectrum yet. His language is extremely delayed and garbled and yet he’s loving and affectionate and makes eye contact. He’s not a screamer, but a quiet stimmer. I suppose more time will tell but I feel like I’m ALWAYS looking for glimpses into the holes in the fence of what his future might (and might not) hold.

  7. Anonymous

    Thanks for your eloquence.

  8. Anonymous

    Very good post. Never let anyone define autism, because definitions become stereotypes. I can give you one example, but there are so many others. People think autistics don’t like to socialize. But is that really true? Or is it just one of those really complicated things about being autistic that is very difficult to explain? I don’t socialize much, and if people ask me why, I usually tell them it’s because I don’t want to. But that is the easiest answer I can give them, even though it is not completely true. When you grow up autistic, you intuitively know that most of the rest of the people are different than you are. You become aware of this at a very young age, and that awareness makes autistics grow up and develop with a totally different perspective on social life and society than NTs could ever have. There are fewer compatible friends for me in the world. However, I have had some really incredible friendships in my life, with both autistics and NTs. But in a social situation, I see so many things that NTs never notice, and they see all the things I don’t notice. I look for different things and I have been accused of being rude because I did not want to befriend people or I shied away from people, but I could tell intuitively that they didn’t understand me and they had no idea of how different I am from them, and I was not about to come right out and try to explain it. The best thing to do in that situation is to back out of the situation. If other friends ask about it, I always just say something like “I don’t think I have very much in common with him”, or “she doesn’t seem like my type”. And people think I’m rude, or they think I’m too shy, or that I won’t give people a chance. But they don’t understand, and I can’t explain it. The truth is, I would love to have more friends, but I am the only one who understands why so few people in the world could play that role in my life. I don’t want to be NT and I don’t want to learn how to relate to most NTs, but that doesn’t mean I don’t want any friends at all. There are lots of things like that about autism, that so many people do not understand, but they try to define it all anyway, and they think they understand what they don’t, and it locks autistics into stereotypes that cause people to treat us like we are all the same. Nobody should ever try to define autism, because it can not be defined or contained. And nobody should assume they understand all the reasons why autistics make the social choices they make. Even the autistic person might not be able to give you an accurate reason, but I think they usually do understand their reasons.

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