Reflecting Light: Wishes for World Autism Awareness Day

It was just another visit to the Home Depot in the weeks before World Autism Awareness Day. Since we’re renovating our house, my husband visits the store on a near-daily basis.

autism

We were laughing about paint colors (“‘Manhattan Mist’?! That’s just … toxic!”) when I saw them. The blue light bulbs.

I didn’t have to read the signs. I’ve volunteered with Autism Speaks, and written for their blog as well. I knew what the bulbs were for: Light It Up Blue for Autism Awareness.

When I saw that display, I had this sliding sensation in the pit of my stomach; it was as though I could feel time move. It seemed just moments ago that I was a child, fighting with my younger brother Willie over the TV remote, and learning what ‘autism’ meant.

How surreal that autism awareness isn’t a small cause, that autism isn’t a rare diagnosis anymore.

When I was young, I was thrilled to meet one fellow sibling of an individual on the spectrum, one person who could relate. And now, here I was, standing before autism awareness light bulbs in Home Depot.

How quickly things have changed, I thought. A few years ago, we would never have seen something like this. And what will we see in years to come?

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Last year, on World Autism Awareness Day, I wrote about hoping against hope. I wrote about the painful sides of Willie’s autism, the outbursts and aggression. I wrote about how hard it can be, to know so little about the workings of his mind.

What does lighting it up blue mean for me now? It means that I hold on to the specific ways that Willie himself brings light. Because even as we advocate for autism awareness in general, it’s vital that that work is grounded in relationships with people in particular.

It’s easy to get lost in concepts; it’s not so easy to commit to loving and supporting one person.

A concept, after all, will never steal the remote control and then bite your hand when you try to change the channel.

But then again, a concept won’t ever love you back.

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autism sibling

Arms-length, 2012, courtesy of AutismAfter16.com. Used with permission.

Though you may not have met him, my wish on World Autism Awareness Day (Tuesday, April 2, 2013) is that you would be able to glimpse the Willie I know.

I wish I could show you how brilliant he is; he does the best impressions. Once, after a family Lord of the Rings viewing, he stood in front of us, widened his stance, and said, with great intensity and authority: “Leave all that can be spared. We travel light. Let’s hunt some orc.” We held our stomachs and laughed until we cried.

I wish I could show you a brother who counts down the days until my birthday, who sings with gusto and accompanies our parents on the piano when they call to sing to me.

I wish that you would know what a miracle is: your formerly out-of-control sibling playing, ‘Happy Birthday.’

I wish I could show you the sight of his smile as I snap an arms-length photo … oh wait, I can do that.

I can give you the blue of Willie’s eyes, reflecting light.

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What are some of your wishes for autism awareness? Join the conversation in the comments!

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Forget Christmas Presents – Let’s Talk About ‘A Gift Disguised as a Dilemma’

Note: there’s a giveaway AND a special announcement at the close of this post — so be sure to read to the end!

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Recently, I watched the documentary film, Loving Lampposts: Living Autistic as research for a feature piece I was writing for Autism After 16, wherein I interviewed director Todd Drezner. Within minutes, his film had me captivated. The documentary explores the nature of autism, asking the tough questions: what causes autism? Is there a ‘cure’? How do we best support individuals with autism, and how can we learn more about their inner worlds? Drezner includes scientific research and interviews with professionals, but what stands out most about the film are the personal stories, the interviews with parents and adults on the autism spectrum.

Specifically, I remember an interview with Sharisa Joy Kochmeister, a woman with autism who was perceived as having a very low IQ…until she had the opportunity to utilize assistive technology to communicate. Nowadays, she’s an honors college grad who’s self-publishing a magazine, as well as teaching, speaking, and advocating for adults on the spectrum.

In Drezner’s words, “[Filming Sharisa] was very eye-opening because the difference between outside appearances and what’s happening inside her is so great. Seeing such a ‘low functioning’ person who was actually so brilliant really brought home that some of the ways we think about autism are not fully accurate.”

For example, when asked about her perception of the nature of autism, Sharisa typed a reply into her computer. Her gaze was focused, determined. In the pause between her typing and the sound of the automated voice, I felt a chill run down my spine, and my breath caught as the computer intoned her words: “Autism is a gift disguised as a dilemma.”

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That bold statement reminds me of my friend Miguel*, someone who has taught me about beautiful gifts hidden within terrible dilemmas. Though Miguel has a high level of medical need, he’s one of the strongest people I know. And one particular experience illumined that strength for me.

I was sharing time the hospital with Miguel, something that, unfortunately, happens on a semi-regular basis. Usually, sharing time at the hospital means translating his Spanish into English for nurses, helping him to do stretches so he doesn’t get bed sores, and allowing him to steal all your pens and place them in his mochila, the small, black carrying case he loves. On this day, however, sharing time meant something more.

The short, fact-based version: Miguel needed a central line put in.

The real version: Miguel’s doctors told me he needed a central line. I helped them to contact his guardian, and she gave consent. When I learned that she can’t be there, I suddenly realized: I’m going to be the one to help him get through this very painful procedure. True, I knew some Spanish, and I’d cared for Miguel for several years, but neither of these things seemed like enough to get us through what was about to happen. Miguel had had central lines before, but, in the words of his guardian, “It’s awful. We do everything we can to avoid it.”

She was right. It was awful. Within moments, Miguel knew what was coming, and he started making small, scared sounds. I stayed close, touching his hands, his forehead, whispering every reassurance and endearment I could think of. I kept saying, “Por favor, amor…no te movas.” (Please, love, don’t move), because even small movements on his part would dramatically increase the pain he was feeling.

The doctors were nervous; they didn’t know Miguel, and they were afraid he might not allow them to put the line in. For my part, I was afraid of the same thing. Miguel needed the line, but I wasn’t sure he understood that to the extent that he would allow them to insert it, and inflict a great deal of pain in the process. I wasn’t sure if he’d be able to endure it. And, deep down, I wasn’t sure I would be able to endure it. I saw blood on his pillow, and terror in his eyes. Part of me wanted to flee.

But a better part stayed me. A better part knew that, while I might not be the ideal candidate to help him through this, I was the one who was there, and I had to step up. I had to trust in our relationship, to trust that, despite my faltering words, my love for him would not falter. My stomach shuddered as Miguel cried out, but still, they were getting the line in. I kept saying, “Mirame.” (Look at me.) Look at me, Miguel. I kept steady eye contact with him, knowing that all I could offer was my willingness to go through this pain with him. To not leave him alone and in agony.

And as I looked at him — this man who the world considers profoundly disabled — his gaze fixed on mine. Strange as it may sound, we had each other’s full, focused attention, even as the procedure continued. As our eyes locked, I felt something I can hardly describe, a sensation of reality opening up in a new way. It was akin to the shiver that moved through me later on, when I heard Sharisa speak those profound words about autism. It was the experience of seeing someone the world perceives as weak, and realizing that their incredible strength was what truly defined them. (Ah, the strange benefits of being wrong!)

As I looked at Miguel, I could see that, though he felt the excruciating pain of what was happening to his body, he’d arrived at a place of surrender. He had, in some profound way, accepted his frailty, the pain, everything. (I use ‘acceptance’ in the most powerful sense; acceptance in the sense of being fully, fiercely, gracefully present to what is.) When he looked at me, I saw no blame, no recrimination.

Instead, I saw love. He knew that I loved him, and I could see that he’d made a choice to trust me, even in his agony. This man, who the world considers profoundly disabled, taught me about real love that day.

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Have you ever experienced a ‘gift disguised as a dilemma’? Tell me in the comments!

All commenters will be entered to win a free copy of the Loving Lampposts: Living Autistic DVD.

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Thank you to those of you who purchased Love’s Subversive Stance! I deeply appreciate your generosity.

*Names have been changed.

Yours ever,

Caroline