We attended a religious discourse yesterday that was very thought provoking in many ways, but one point made by the Swamiji stood out to me for various reasons.
He was talking about how we have a tendency to brush off how beneficial a daily spiritual practice can be (for those of us with interest in living a life of spirituality; I definitely don’t think everyone needs to agree). We tell ourselves stuff like “Oh, I live a clean life. I have no extreme vices, my heart is pure, and I don’t intentionally harm anyone. That’s surely almost as important if not more so than a daily practice.”
As you may imagine, Swamiji does not subscribe to this thinking. He went on to talk about how, since he travels so much around the world doing these talks, it’s difficult for him to remember individual attendees unless they spend some time talking to him, and acquainting him with their specific circumstances.
Like any other arena of life, regular practice builds something into a character trait, is the overarching message. I shan’t suddenly turn a space about autism into a religious preaching one, but aside from the many internal responses I had to his words, I did of course think about how they connect to autism, specifically to people’s interactions with autism.
As an analogy, I’ll talk about the babysitter whom we trust the most to look after A. Let’s call her Darla. She returned to working with A after a longish hiatus and, of course, in the interim, A had shifted and changed, and some of his teen traits have become more challenging. If Darla cannot work through a tough moment with A, other sitters surely cannot, so we know when she throws up her hands, that she has really tried everything. One frustrating evening, she had to exert all her physical energy and mental resources into getting him to leave the house, then to getting him to come back inside, all because she had to bring A along to pick R up from a lifeguard shift. A was furious at having been rousted from his comfort zone, and saw no reason to cooperate.
Lesser mortals would have quit. Or ghosted. Instead, Darla texted me before our next scheduled babysitting session, asking if she could take A out again the next time, so that she could prevent him from getting ‘stuck’ in mental ruts about going out with her, and they could have some low stakes practice.
We set it up like a military operation, and timed everything exactly so that A was ready to leave the house when we were. As soon as Darla arrived, we all tumbled out the door. R walked them to Darla’s car so that A would feel special, while my husband and I stood waving like fools from the driveway, as if we had nowhere in particular to be, and happened to be all dressed up in Indian finery just to see off our offspring.
Somehow it acted like a reset button, and erased the negative associations in A’s mind. He had a blast with Darla, wandering the aisles at Target, and taking selfies whenever his smile was especially beatific. When we got home, he was glad to see us, but he was also hugging Darla and smelling her arms, which he does when he wants to let women in his life know they are appreciated. I think he knows that many of us use nice smelling potions, and he likes to find the fleeting traces of their scents.
Autism behaviors can often be construed as inappropriate, like the above example of arm sniffing. Arguably, it is wrong to follow A’s logic and say “If I do not wish to be sniffed, I should use fragrance free products,” since that comes dangerously close to thoughts like “If I don’t want to be harassed by this boundary-free guy, I should dress differently.” But that is the conundrum of interacting with severely autistic guys. Their sensory panels are easily overloaded, and then a flurry of new rules and regulations can have little influence when we do nothing to examine how we are ourselves contributing to the overload.
So it is easy to see why the neurotypical world is not enamored at the idea of constructing a daily practice of interacting with severe autism. There is too much moral relativism, too many incidents that don’t have the finality and justice that people crave when something ‘off’ occurs. We are back to the ‘ungovernable’ amongst us, aren’t we? Yet those of us in close contact with severe autism do not get to erect easy barriers to anesthetize ourselves.
While I would never insist on people overriding their own discomfort to interact with people like A, and certainly would not wish for people to be in his life unless they actually like him, I also think it is important to refer back to what Swamiji said about how we excuse ourselves from doing arduous things that would build stronger character traits. So in essence: if severe autism is too difficult for you, then please don’t ask parents like me to smile and nod while you twist yourself into mental pretzel arguments and hope that your thoughts and prayers from a distance make any material difference to our daily circumstances. It’s the same as asking Swamiji to co-sign your spiritual inaction, isn’t it? It’s not our job. You are demanding approval and labor from us, but to what end? If the reasons for your distancing are not due to reluctance or aversion, then we already understand, but chances are you are also not extracting said approval and labor from us, so we are good.
My motive is not to finger wag. It is merely to say that when people distance themselves, it is usually a choice. It is a choice that I can understand. But we aren’t here to make you a better person. We are over here raising a child who is complicated and precious. The freedom you enjoy not to wade in is great, but your inaction has consequences for people like A, from social acceptance to special education funding to adult disability policymaking. A butterfly flaps its wings and…it all reverberates, but quietly, doesn’t it?