catapult magazine

Hidden

Autism and life around the edges

by Deborah Lewis

Autism is one of the few things in my life that I chose not to learn about by reading a book. When I fell in love with and married my husband Woody, he came with the gift of Blair, a then-teenager with autism. I resisted haunting the Autism Speaks website or reading firsthand accounts. Intuitively, I moved directly into my own firsthand account. I didn’t want to be an expert. I wanted to be an extra mom and a supportive wife. I wanted to get to know Blair first, and to know autism within that context.

Six years later, there are still a lot of things I don’t know. I have been surprised by how isolating it can be at times. We have Blair every other weekend but, as a clergyperson, on normal weeks I work half of the weekend and there are many “abnormal” weeks with retreats, service projects, mission trips, and other events that take up the other half of the weekend, too. Many of these aren’t conducive to having our whole family participate, the way many pastor’s families do. Worship is hard for Blair to sit through, and sitting with him in church keeps Woody working the whole time, unable to listen and participate himself. So they usually stay home, which means that this whole part of my family life is mostly hidden from the students I work with in campus ministry and the congregation members at our partner church next door. 

As with many families that include someone with special needs, what we do and when we do it tends to revolve around what he can or can’t do. Sitting still that long will be too hard. They won’t have any food he can eat there. That’s a long time for him to be on best behavior with no room of his own to retreat to. The difference between a Blair weekend and a non-Blair weekend is huge but also largely unseen by the community, or even by friends and family.   

This may not be what you think of when you consider standing with the marginalized. I spent four years living in Appalachia, working for low-income housing organizations, so I know what you probably think of when you picture those who are marginalized. Working and standing with the poor is indeed holy work. But when I think about people in the margins now, I also include those in our midst who are easily overlooked or discounted or not even included in the conversation about marginalization. Like Blair.

In my previous work I learned not to speak for poor and low-income people, but to instead lend my voice to the conversation, offering my own perspective based on real relationships with the people whose homes and lives I was invited into. I learned that I have responsibility to speak truth to power, especially when the powerful might hear me, but not the ones about whom I speak. I’m still learning what it means to speak up for someone who can’t speak, who is unable to help carry on the conversation. I’m cautious about this because it’s easier to write a story than to tell the truth, and it’s easier to speak than to keep listening until you know what must be said.

Blair does speak, but he offers limited opinions on the matter at hand. When he’s sick, he says, “Yuck,” and he might touch his head if that’s where it hurts. Last summer, preparing to go to his work assignment at a local CSA farm, he surprised everyone by coming up with a whole sentence, unasked:  “We like farming!” But this is rare, and it’s hard to string these into a considered statement on life with autism.

It takes time – unhurried and unscheduled – to get to know Blair, to learn to move at his speed in the world. That’s the part that makes me saddest about the hiddenness of this aspect of our lives – the lack of natural, repeated opportunities for the rest of the community to know him. Those with special needs are often marginalized, categorized by what they can’t do. But sometimes their families are, too. 

Church members still ask, “Where’s Woody today?” I know this comes from someone trying to say they miss seeing him. But when I hear it, I feel protective, frustrated, isolated, misunderstood, and underestimated. Where do I begin trying to describe our reality? How much is enough? I know parents of children with autism who have a hard time talking about other things. I know clergy who have a hard time keeping any parts of their personal lives private or unpublicized in their sermons. I don’t want to be in either of those cohorts.

So it’s a weird position to be in, speaking for Blair and for the family, writing this. I resist broadcasting the details of our lives, but I am realizing now that leaving things unsaid in the margins sometimes just leaves them there, unexamined or even unknown. I know that because my family life is out of sight in some ways, I may appear to be unencumbered to those who don’t know, or superwoman to those who do. I’m not either. I’m someone who moves in and out of the margins and tries to bring a few more folks along with me each time.