awareness 2012

Diary of a Mom – 9 hours ago. ~ I wish I could really have captured how beautiful this looks. There are blue candles flickering in every window of our home tonight in honor of World Autism Awareness Day. As I’ve done my best to explain to my beautiful girl, the light serves as a reminder that people with autism need our help with some things so that they can do what we know they are capable of – which is ANYTHING. I have no doubt that even though it doesn’t appear to register yet, the message seeps in little by little – that she is loved, valued and above all, believed in. Like · · Share 199 people like this.View all 22 comments.

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I’ve tried to write this four times. I’ve scrapped everything and begun again each and every time. There’s just no way to capture it all in one post.

We live in a sound-byte world. We watch thirty-second news clips and skim bold font headlines online. But Autism Awareness doesn’t work like that.

Autism doesn’t fit into a headline. Sure, the numbers do. One in eighty-eight. One in fifty-four. The questions do. Why the Rise in Autism? Do Vaccines Cause Autism? But the people don’t. Not by a long shot.

A few weeks ago, I had the honor of having lunch with Eustacia Cutler, Temple Grandin’s mother. On that day she said, “Autism is a buzz word, but no one really knows what the buzz is about. Nor do they really want to dive deep enough to find out. In that moment of meltdown, they (the onlookers) lose what THEY think THEY are. And then they are forced to confront the shame of their own identity.”

And that’s the thing about autism. It’s messy. It’s sticky. It makes demands of all of us and what it demands are the things that are hardest for us to find within ourselves – flexibility, compassion, patience.

But above all It lays us bare in the village square. It forces each and every one of us to confront our own insecurities about fitting in and standing out and having the conviction to be who we are in a world that thrives on conformity. Autism holds up a mirror – giving us no choice but to see ourselves in stark relief. It asks us who we are – forcing us to question why we are so quick to judge and so slow to offer real support. And it makes us look at what we fear – at all the creative ways that we’ve convinced ourselves that it’s OK to tease, to judge, to shun what we don’t understand.

From the outside, autism is tough to grasp and even tougher to describe. To begin with, it is a spectrum disorder. And what does that mean really? Well, it means we have but one name for a condition so vast as to damn near encompass the entirety of the human experience. One word to describe people with needs so disparate as to sometimes – hell, often – be contradictory. One word to describe a spectrum so broad as to include, to paraphrase my friend John Robison, highly verbal, commercially successful geeks on one end and severely disabled, non-verbal people on the other.

So what do we do? How do we make people aware of something that we can barely describe ourselves?

We begin by being who we are. By being visible. By talking to our neighbors, our colleagues, our families, our friends. By using the word – demystifying it, taking away its power to build walls and imbuing it with the power to build communities.

By listening. By understanding that fear is real and change is far slower than we want it to be.

By offering the same compassion to those who would judge us as we ask from them in return. By measuring our words. By talking to – never at – each other.

By remembering that everyone’s experience is different. That pain is never a competitive sport. That no matter how we got here, we are in this together.

To our community, I would say the following. I wrote it just after my visit to the White House last year and I might just put it into every post I write this month.

The words we use matter. Each of us, as autistic people or those who love them, serve by default as ambassadors to the outside world. In so doing, each of us shares a responsibility to the other. I believe that in order to uphold that responsibility, we must do what we can to avoid sensationalism, to stay away from hyperbole. We must work to create an understanding that autism comes in myriad forms, so radically different that often one is barely comparable to another. That its manifestations can vary so widely as to make their shared title a ludicrous farce. I believe that no matter where we or our loved ones fall on the spectrum, we must always be cognizant of the fact that autism IS a spectrum. We ALL must think through the ramifications of our words from pole to pole before we speak for the spectrum in between. Words matter.


So here we are. On World Autism Awareness Day. The day for which I am so grateful, yet from which – year after year- I just want to hide.

(Ed note: The following is adapted from a previous Diary post, originally published April 2, 2010)

It’s a day of hope and promise and grandiose events. A day on which buildings across our nation and around the world are set ablaze in blue light. A day on which proclamations are written and read. A day on which even the United Nations recognizes our community and the epidemic proportions at which it is growing.

These are wonderful and meaningful events.

But a UN resolution won’t tell your child’s story to your aunt – the one who says you’re ‘just too lenient with that kid’ or that a week with her ‘would be enough to set him straight’.

Ringing the opening bell of the New York Stock Exchange won’t tell your son’s story to the kid down the street – the one who calls him names and sends him home in tears when he doesn’t understand the unwritten rules of the game.

The Empire State Building awash in blue won’t tell YOUR story to the man who won’t hire you for a job which you both know you are perfectly capable of doing because he doesn’t understand why you won’t look him in the eye during the interview.

Neither buildings nor events can’t tell stories.

But WE can.

As people with autism or those who love them, we can.

We can tell the aunt and the kid down the street and the prospective employer what we live.

We can tell them what it’s like to see the world in too bright Technicolor. We can tell them to think back to a time when they just got out of the ocean and their eyes were full of salt and they looked directly into the sun. We can tell them that’s what it can be like to walk into a classroom.

We can tell them what it’s like to hear the world in too loud, too chaotic Dolby digital sound with no volume control. We can ask if they’ve ever had a migraine. When they did, did they ever turn on their stereo and their television, both on full blast and then have three people shout at them from different directions? We can tell them that’s what it can be like to walk into a restaurant.

We can tell them what it’s like to sit in the middle of a roomful of people talking and to not be able to understand a single word they are saying. We can tell them to imagine what it would feel like to be a native English speaker who has a rudimentary knowledge of Spanish trying to follow an argument in heavily accented Castilian. We can tell them that’s what it can feel like to be at a birthday party.

We can tell them what it’s like to be completely overwhelmed by everything around them – to feel like they’re standing in the middle of the track at the Indy 500 and the cars are coming at them at full speed. We can tell them they too might lose their facility to calmly ask for help when they have no idea what’s happening next. We can tell them they’d likely panic and scream and curl into a ball. We can tell them that’s what it can feel like on a soccer field.

We can tell them what it’s like to taste and smell the world so vividly that they can’t tolerate it. We can remind them what it feels like when they have the flu and every smell sets off their salivary glands and their gag reflex. We can ask them, what if, when they feel like that, someone hands them a pot of curried meat? We can tell them that’s what it can be like to sit down for a meal.

We can tell them what it’s like to lack the language to express your most basic needs.

We can tell them what it’s like to be so sensitive to certain sounds that you live in fear of car alarms, sirens, coffee grinders, garbage disposals, horns and any of the places that you may have heard any of those sounds before.

We can tell them what it’s like to try desperately to interact with your peers, only to be rebuffed time and again because you can’t manage the most rudimentary conversation.

We can tell them what it’s like to be so oversensitive to touch that a hug can be torture.

We can tell them what it’s like to yearn for a friend. Just one.

We can tell them what it is like to live with autism.

I live our autism – Brooke’s autism.

And it may be very, very different from yours.

So you need to talk too.

As much as we might like to think that the time for awareness is past, it simply isn’t. Sadly, it might never be. Awareness of a word is not going to change anything. Awareness of lives will.

Awareness is not the goal. It never has been. But it is the foundation without which no other change can happen.

Fear is strong. It’s deeply entrenched. We won’t drive it away with a single post.

So please, use this day. Talk about it. Blog about it. Tweet about it. Write about it on Facebook. Use whatever tools YOU have in your arsenal to get the word out. And then continue to talk.

We CAN change the world.

One conversation at a time.

18 thoughts on “awareness 2012

  1. Oh Jess, your gift with words never, ever, ever ceases to amaze me. That’s one powerful piece. Sophisticated. Eloquent. The message so simple, yet so empowering. A call to arms in the name of our babies, their peers, our families…our world. Continuing to share our story here, as we always do.

  2. …and we will change the world–one conversation at a time. I only wish I could tell it as eloquently as you.

    Love you,
    Mom

  3. Powerful. Beautiful. We are talking. We are wearing blue. Getting blue hair… We will change the world, one person at at time…if that’s what it takes.
    xoxoxox

  4. “It forces each and every one of us to confront our own insecurities about fitting in and standing out and having the conviction to be who we are in a world that thrives on conformity.”

    This perfectly sums up some of the struggles I have had. I realized at one point that my problems with my son who has autism stemmed a lot from MY insecurities and MY need to conform and MY dreams for his future. Once I was able to let that go and focus on Danny, we have all been doing so much better.

    I love this post and I agree: we need to all keep telling our stories and doing what we can to help others understand.

  5. Pingback: Moving from awareness to acceptance « Maternal Instincts

  6. Because you say it so well I’m sharing your post on my facebook page along with my own personal message but I wanted to thank you for your ability to write and that you share it with us. Some of your experiences with autism have mirrored some of my own experiences. The feelings that you write about can often be found within my own heart. This diary that you keep has brought me an awareness that I am not alone.

  7. Well said, as always. I appreciate your generosity and candor in sharing so freely, more than I can say.

  8. Reblogged this on valerie r lawson and commented:
    I find myself at a loss for words on World Autism Awareness Day. Thank fully, another parent found all of the words I was looking for. After I read this post, I was so moved, I didn’t need to add anything else. This is life with autism.

  9. Pingback: World Autism Awareness Day 2012 « To Sleep, Or Not to Sleep…

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