The Autist and Me

As promised, an essay written circa 1996 about my older brother and me:

I am an artist and my brother is an autist: Only one letter difference; two letters apart in the alphabet. If you speak with a New York accent, we are the same.


Jack Dad and Mike

When I was born, my big brother Michael was there already. He was around the house for the first 10 years of my life, until 1962 when my parents took him to Willowbrook. While he was home, he would scream at the top of his lungs when provoked (and sometimes when he wasn’t); he could not or would not talk; he would hit himself on the head and bite his hand so hard that he developed calluses and he would run around the neighborhood with no clothes on. Michael did not acknowledge my presence except as something between him and the food on my plate. But Mom said he would occasionally try to hit me with a hammer, so he must have known I was there.

Mike and me

I don’t always remember things correctly. For instance, childhood was not a happy time, but I see myself looking happy in the old photographs. There is a clip from a home movie where I am playing ring-around-the-rosie with my older and younger brother. We were falling down laughing. Maybe that’s why I always carry a camera and take pictures. A photograph is proof that something really happened, a way of not forgetting. I’m always drawn to the past in the hopes of finding something I missed.  Remember being more critical and angry than what showed up on film. I used to drag out the old photos to ask Mom about them to try to understand when she knew that Mike was not normal. I would say, “but he’s looking right at the camera here,” and she would say that it would only happen for a split second. She did not like the old pictures. I realized that photographs do not always tell the truth.


For a long time I did not go to see my brother. He was in the back of my mid, though, an imperattentive left eyefect memory. But on his 40th birthday I went with the rest of my family to visit him and celebrate the occasion. I noticed one photograph in particular from the snapshots I took. One of his eyes, each of which seem to operate independently of the other, was looking dead-on at me:  to my core.  misaligned right eyeWith magnifying glass, a scissors and the bathroom mirror, I made him look at me with both eyes.


I made the truth that I so often thought should be. I also mirrored his other half-face, with the eye looking at an impossible angle. In doing that, I felt as inhuman as that made-up image looked. There, in black and white was the monster I hadn’t imagined as being that bad.

monstrous looking photo

From that moment, I visited him at his group home, at parties and at his day program, making the trek loaded to the gills with all my camera paraphernalia. The very first time I came into his classroom, he looked at me from the other side of the room and started to cry. The teacher said that had never happened before with anyone else. That was the first time I really knew that he saw me as different from anyone else. I kept going back to take his picture. It wasn’t fun. It was more like holding my hand on a burning stove. I should have been doing something to help him instead of hiding behind my camera-taking roll after roll of film. At the beginning I stuck the camera in his face, perhaps to get a better angle, probably more to get a reaction from him. After a while, I was going to his parties along with him and his friends instead of to observe him. After about 5 years of taking his photograph, Michael stuck out his hand to take my camera. I didn’t dodge it as I normally would normally have done. He seemed interested in it. I showed him, with my hand on his, how to snap a picture and he didn’t squirm away. He and I took a self-portrait that day.

Jack & Mike

2 thoughts on “The Autist and Me

  1. I was a photographer in my former life. It started as a hobby that got so expensive I had to justify it by doing portraits and weddings. I rather enjoyed the weddings. Happy people, exciting times. I’ve taken many photos of my disabled sister, but most of the best photos of Barbara have been taken by other people. I always admired school photographers who did the special ed classes and did such a good job capturing the personalities of the kids — and in just a minute each! I had a hard time capturing images of “special” kids. I think I wanted to make them look “normal,” handsome, pretty, glossing over their disabilities; instead of trying to capture who they really were.
    You capture your brother as he is. If I took a photo of Barbara which magnified the strabismus, or an unattractive grimace, or made the large mole on her face too obvious, I would destroy it.
    But of course, I still have all my negatives and slides.

    • Thank you Anne. I don’t really know how my brother is. I spent a long time trying to capture something that would give me a clue. Advice that I received from some photojournalists was to spend as much time with him as possible, to get to know him. My role was as an observer and a brother. I think I got to know his routine more than I got to know him. But I felt closer to him through the process.

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