A World Apart

By Mahala Gaylord

An autistic wordworker lets one photographer into his life

Photography and story by Mahala Gaylord

The first day I visited Ben, he never looked me in the eye, never acknowledged that I was in his home or photographing him. I was not invisible, and he made space for me, but he seemed miles away. This distance is just one of several traits that reveal the struggles Ben and his adoptive family, the Lehrs, have endured for the past 30 years. Ben is autistic.

At age four, Ben was diagnosed with autism, the most common out of a group of developmental disorders called autism spectrum disorders. Autism is marked by impairments in social interaction and verbal and nonverbal communication, as well as a tendency toward repetitive actions and limited interests and activities.

Now, at age 34, Ben owns a woodworking company and lives in his own home in LaFayette, N.Y. In addition to woodworking, he takes pleasure in spending time with his family and finding solace in the water. He doesn’t communicate in sentences or paragraphs, nor does he typically maintain the stillness or concentration needed for an eye-to-eye conversation. But through motions and phrases, looks and touch, Ben does communicate.

I once visited Ben while he was having a bad day. He stalked from room to room, berating himself loudly, his voice echoing against the walls, stopping occasionally to rock back and forth. As I was photographing, he stopped rocking to look directly into the camera. I lowered the camera an inch, and Ben stared into my eyes for an instant before his thoughts pulled him back into another world.

“I don’t think that any of us knows what it means to have autism,” said Sue Lehr, Ben’s mother. “He knows better in the sense that he lives with it, but what does that mean? It’s just a sum of his experiences; as he said [while facilitating] -— ‘dealing with his dastardly, zany behaviors.’”

Misconceptions about autism often arise because the disorder affects each person who has it very differently. Many people with autism are highly sensitive to sound and touch, but Ben thrives in his woodworking shop full of power tools that vibrate and screech. “We said, ‘If you could do anything in the whole world, what do you really want to do?’” his mom explained. “He was facilitating, and he typed out, ‘work with power tools’ and ‘work with wood.’ And I just thought, Oh Jeez, how about painting? That’s a nice, safe activity. But he wanted to work with power tools.”

One time, I visited Ben at his parents’ home in Tully and we sat in the living room eating brownies. Ben seemed at peace. He touched his mother’s arm and then sat alone in the sunroom, eyes closed, listening to records.

Sue remembers that, years ago, when she used to have frequent business trips, Ben would always play “Leaving on a Jet Plane,” by John Denver before she left. The music served as a form of communication; the emotions of the song seemed to mimic the emotions Ben was feeling when his mother left.

Aside from listening to records, Ben finds a sense of serenity when playing in the water. In his home in LaFayette, he has both a hot tub and a pond behind his house to relax. He is in and out of the pond late into the fall and uses the hot tub year-round. “Water has always been important to him,” Sue said. “It’s just his way to totally veg out — [his way of saying] ‘I don’t want to deal with that world out there right now. Just leave me alone.’ And when he is in the hot tub, most of us do leave him alone.”

As much as Ben relishes his time alone, he has developed strong relationships with those around him. On that same day, Ben hugged me. It felt as if he was letting me in — into his experience, into his world.