108. The Vigil

“The Vigil”

R and I were laughing over how weird our town can be, and also how that can be kind of a relief to us as an autism family. Fleeting, surface interactions are the norm, and that has never become not-weird for me, coming as I do from a nosy Asian culture. But I’ve learned to see the sweetness in people’s ambivalent overtures, to value the privacy that the veils of suburban American introversion afford me. What’s not to love about being able to sit on the porch with my batik fan, a library book on my lap, a whatsapp chat making me laugh, and knowing that my solitary interlude will be unbroken till A’s bus arrives.

Our tenuous relationship to our town is underscored by the foreignness of autism, though, and we never allow ourselves to forget that. Vigilantism can pop up anytime. The same community that finds inclusion tedious, that doesn’t invite my kid to a birthday party, that farms my son’s education out of district, thus exacerbating his lack of peer friendships in town, that crosses the street to avoid his vocal sounds, that stares and often laughs when he screams and drops to the ground in distress—this is the same community that can misread a parenting scenario and decide we are placing our child in danger.

A couple years ago, a cop car drove by our house and stopped outside every day for two weeks. Always at school dismissal time. A loves to sit outside after school, and perhaps some passerby didn’t see me, and feared that I had left a special needs child all alone, and thought hey, better safe than sorry. Since we don’t leave him unattended in the great outdoors, the cop eventually stopped driving by. I don’t know that that’s what happened, but the effect is what matters, isn’t it? It becomes incumbent on us to enact a performative counter vigilance, of over the top parenting saintliness, so that unknown observers will leave us to our already eternal watch.

We’ve taught ourselves to be very cautious in public. If A runs out into the street, we grab him from behind around the waist, never an arm, so that no one misinterprets. Imagine having to marry elopement panic with performative paranoia. That is the life of an autism parent in a town where people rarely come forward to be friends. And if we weigh that against people who might interfere in our decisions with their unsought advice, we end up choosing the relief of aloneness. Sometimes the porch parent texts the other: “Are you almost home? I need the loo.” The lack of response from the other is our only clue that they must be driving, intent on getting back to offer relief to the person who has been sitting out there for a long time, sometimes without having eaten lunch. We make it happen for each other. Vigilantism is a feel good thing, but it is not remotely anything like actual allyship.

We were returning from the beach recently, and A was howling with transition distress after a bracing swim, which is really a regular day for us, but when we walked into the travel stop where we were going to fuel him up, people began pointing and whispering. He bawled lustily while my husband rushed off to get food, and someone at the next table asked me, “Excuse me, is he alright?” My heart. It was beating like a drum. I pasted on a smile and explained that he is a child with autism, he was overwhelmed after a swim, and would be fine after eating. Everyone continued to watch us closely, though, and when he did begin to giggle happily, I allowed myself to tune them out, and hugged my boy, wiped his face, and said to his sparkling eyes, “You’re so emotional! I love you!” He signed “I love you” back.

There used to be a special needs family nearby, but they’ve moved away now, more’s the pity. Anyway, the dad once saw R sauntering home from basketball coaching, and he said, “Hi A!” R was amused by the identity confusion and didn’t correct it, even, naughty fellow, making sure to add a skip to his step, pretending to be A.

The next thing I knew, someone was pounding furiously on our front door. It was neighbor dad, worried that A had maybe escaped the house and that we didn’t know. When we sorted it out and he realized it was actually R he had spotted, he and I both laughed in relief. But I teared up while I thanked him for stopping to check with me first, rather than call the police. It meant so much to me that he took the time to calm his own apprehensions and do that. And he most likely did because he knows the wariness of other people’s good intentions that we live with; he and his wife live with it too.

This piece took a lot of courage for me to write. I take a risk when I shed light on community reactions. But I think it is worth doing because every day that I go out in the world with my child, I risk everything anyway. The more you seek to know about autism, the safer we will be. From the nebulous dangers of the world. From you.


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