Autism and Community
Community. It is a word I’ve used a lot in the last two years. I’ve written about the autism community. In spite of the divides and differences, it is a place I’ve considered my virtual home for the last year. But apart from an all too brief day in May to meet my friend Alysia, my community has been distinctly virtual. I’ve felt the loneliness of being the only family like ours, and loneliness might just be the opposite of community.
Loneliness is what compelled me to write my first blog post. It wasn’t that I didn’t have friends, it was that I struggled to communicate my experiences. Spectrummy apples don’t fall far from spectrummy trees. Many of my friends did read, and began to understand our version of autism. They became part of my community too, just as the other parents of children on the spectrum, and adults with autism who read and commented, and shared their stories were my community.
I didn’t feel lonely any more.
And then we moved. Not just a little move, but to another continent, far away from my community. I wasn’t just cut off from my friends and family, everyone I’d ever known, but no Internet connection meant I was absent from my virtual family too.
But not without community.
In the State Department, each officer and their family are assigned a sponsor to meet them at the airport, buy some essential groceries, and answer questions about life in the new post. Our sponsor also had a foreign-born spouse, and two children aged 2 and 4. They were kind enough to take us along with them to some of their favourite places. They also threw a party to welcome us to the rest of the consulate community on our first weekend.
We were welcomed. Several times I felt compelled to explain or apologize for Pudding’s behavior- after all, strangers and the intense social experience of a party was overwhelming, particularly for a child with Asperger’s who had just moved to a new country. But every time, I was told there was no need. We were all accepted there. And just like any community, the consulate is full of different kinds of people, our own particular brand of diversity just as acceptable as any other kind.
A few days after the party we went out to an elaborately family-friendly garden centre with some of the other consulate families. After spending the morning at a huge playground, we went for lunch at a restaurant where Pudding made her own pizza. The sensory experience was just what my little seeker was craving, and she was in heaven pressing out the dough, rolling it out, smearing the sauce, and sprinkling on the other ingredients.
Then the chef took it away to cook, and the trouble began. Pudding had been enjoying herself, and saw no reason why her creation was taken away. We carried her back to our table kicking and screaming. I held her thrashing body as Spectrummy Daddy helped ease her into the comfort of her weighted vest.
I began to explain to her that she would have the pizza to eat soon, but as always during a meltdown, I was unclear as to how much she heard, or understood. As I gestured over to the brick oven where we could see her pizza, I noticed a table of three women with a baby and toddler. Staring. Talking to each other and staring at us. We were the car crash from which they couldn’t avert their eyes.
I hate those eyes and the challenge they represent for Pudding, and for my parenting skills. I don’t discipline during a meltdown, and I know that is what is expected by those who don’t understand. Sometimes I’m understanding of their lack of understanding. After all, I was once blissfully ignorant too. But sometimes I don’t have that composure, and in the company of my new community, we were in the midst of our greatest challenge.
As Spectrummy Daddy explained to our new friends about a meltdown, and why Pudding needed to wear her weighted vest, I glared back at the table of witnesses. Though they quickly averted their eyes, they whispered to one another, and looked back. In anger I mentioned my frustration about the stares to the rest of the table.
One of the other mothers gently touched me on the arm, and told me to turn around to face the rest of the group. “You’re with us now, we don’t care what they think.”
Community. Instant and accepting community. I smiled, and did exactly as she suggested. Pudding calmed down a few minutes later, just in time to devour her creation. By the time I turned around again, the table was empty, no more eyes upon us. We went on to enjoy the kiddie rides. Though there were some emotional moments, I no longer felt tense about anybody’s judgment.
I’ve mused since then about how different it would be for families like us if we had a sponsor from the beginning. One who met us at diagnosis when we were so overwhelmed and disoriented that we we felt jet-lagged. Someone to pick up the therapeutic supports we needed and helped us to shop for services. Then held our hands for those first few days, weeks, and months as we navigated a whole new landscape. How different things would be.
We’re in this together. We may be diverse and divided as a community, but you need never feel lonely again. You’re with us now.