On Wednesday, April 2 2014, I joined in with celebrating World Autism Awareness Day. The tagline of the day was “Light it up blue!” and so I did. I updated Facebook with a blue cover photo and profile pic, all promoting autism awareness. I also dressed in blue, celebrating the many people in my life impacted by autism, including my son.
Figuring out what to wear was a bit of a challenge. I discovered at the last minute that I do not have much blue in my professional wardrobe, but one royal blue cardigan peeked out among a rack of long sleeves. Putting it on, I recalled something else I own that went perfectly with that royal blue sweater, a magnificent fascinator filled with feathers, tulle and a bow, all framed in a malleable brim. I bought it for a trip to the Kentucky Derby that never happened. Just the perfect thing to add a bit of whimsy to a day of celebration for friends whose lives could use to be celebrated publicly much more often. Upon arrival at the office, I clipped on the fascinator at the oh-so-perfect, jaunty angle (no small task that!), snapped a selfie, posted it and tagged my many friends whose lives are touched by ASD.
Originally, I meant to remove my hat after the selfie. I felt a bit self-conscious in the office. I thought, “If I wear this hat, I’m going to get funny looks and have to explain it all day long.” Then again, isn’t that what an AWARENESS day is for? Creating awareness? If I just wore blue, I reasoned no one would think that was out of the ordinary. But sporting a headful of feathers and tulle? That’s a whole other matter!
What started as my grand social experiment in creating awareness became something else entirely by the end of the day. At first, it was kind of novel. I encountered the anticipated funny looks and immediately explained to each person why I was wearing a hat. By the time I had done it, five times, ten times, the novelty faded. It got to the point that I skipped over a few opportunities for explanation and just walked on by, accepting the funny looks and occasional humorous comment. By noon I found myself almost hiding in my office, knowing that another trip down the hall would be another encounter. It grew old getting odd stares. I debated removing my hat. It would have been so easy to just take it off and be “normal.”
I wonder how often people with autism wish they could simply take it off. Wouldn’t it be nice not to get the quizzical looks for behavior that isn’t what others expect? Even just for a while? As a parent of a son with Asperger’s, I’ve felt those stares weighing on me and on my son, especially when he was younger. That repeated question from those who don’t understand, “Why can’t he just (fill in the blank – behave, be quiet, eat what everyone else is eating, etc.)? Well, the answer is he can’t, at least not on that day. It’s not a choice. Asperger’s, like other special needs, is not something that can be taken off. My hiding in the office and avoiding the break room reminded me of times when my son was young and I longed to take him to the playground, but knew that was not a place where he met with much success. I would gaze out my dining room window toward the playground. If there were other children and parents there, and it had been a challenging day, I knew we just couldn’t go that day.
In the parent support group that I lead, we’ve all experienced times when we get tired of receiving “the look” and choose to withdraw. It’s easier to be alone, or so we tell ourselves. It is really isn’t. We are made for community. It reminds me of the story in the Gospel of John. Jesus was walking through Samaritan territory and he stopped at a well in the middle of the day while it was hot and no one else was around. Soon a woman came, one who chose to isolate herself from stares and whispers, coming to the well in the hot afternoon sun when others were at home. It was easier for her to be alone, too. But it really wasn’t. And Jesus knew it. By the end of her conversation with Jesus, she was restored to community. So eager was she to get back to her people, that she left her water jug by the well and ran all the way back to her village, inviting others to come and see Jesus for themselves. That is what Christ does for us. He restores us and calls us out of isolation and into community. Yes, even us with lives touched by special needs.
This reminds me of the amazing story of a church that embraced Max and Emily Colson. Emily posted a blog that went viral sharing her experience of a cruel movie audience that heckled, jeered and mocked, driving Emily and her son Max out of the theater due to Max’s autism. Their church stood beside them and rented out an entire theater so that 500 people could attend Movie with Max. Their church celebrated autism awareness, not with a splash of blue, but by embracing and including.
Our need for inclusion and understanding is part of the fabric of our beings of which we are wonderfully woven by God. Living into inclusion involves creating awareness in whatever way we can, whether at a movie theater with 500 of our closest friends, or wearing a silly hat to the office. When we stay engaged, even when it is hard, it is one more chance to shine the light of Christ for the ones in our lives who put the “awesome” in autism.