Dear Dad,
In a few years I will probably have to go on a search for Michael. He will get lost somewhere. I recently told him about the time that I got lost at the state fair and you had to find me. Michael is eight now, I was 11 then. The older he gets, the more I remember things that happened when I was his age. The similarities strike me sometimes. I wouldn’t be surprised if you have an account of searching for me at the state fair written in a journal stashed away somewhere. I would like to compare notes so that I can have a clue about where to look when it is my turn.
Mom took Suzanne and me to the fair that year. She generously allowed us to take along our friends, Ronnie and Barb. After we walked around a bit and got something to eat, Mom told Ronnie and me that we could go off on our own. She told us to meet her and the girls at the bottom of The Ramp to the stadium so we could all go to a concert together. I shouldn’t have listened to Ronnie. I thought that the bigger ramp I saw was the one Mom was talking about, but Ronnie insisted that the one he selected was the right one.
We waited and waited until after dark. We went to look for Mom and the girls, and stopped to look at stuff along the way. I went to use the restroom. When I came back out, Ronnie was nowhere to be seen. That was when he went to find a payphone to call home. I think I remembered that you told me if I got lost to stay where I was. I decided to wait until someone came to rescue me. I don’t know why I didn’t get the same idea that Ronnie did, and call home. I think you asked me about that when you came to pick me up at the fairgrounds police station. I now understand why you were baffled that I just sat in one place until after midnight.
I was so literal-minded and legalistic in my thinking that I wanted to follow the instruction to remain in place. I didn’t stop to think that you gave me those instructions when I was six. I think I wanted to be rescued. I wanted to be found. I was scared to ask anyone for help. When no one came for me, I assumed I had been abandoned. I thought I would be on my own after that. I imagined myself as Oliver Twist, and someone like Fagin would take me under his wing and teach me how to pick pockets.
I saw you driving through the fairgrounds after the fair had closed for the night, but you didn’t see me. I was thrilled because I knew you were looking for me. Not much later, a police officer approached me and took me to the State Fair Police Station. I was amazed that he knew my name. While I was waiting for my rescue, I remembered reading in Ripley’s Believe It Or Not that the Minnesota State Fair had its own police department, jail and even its own court. I thought it was so cool to see this come to life. I noticed the officer’s insignia that read “Minnesota State Fair Police.” I took an interest in the old photographs and other memorabilia on the walls of the police station. I thought if I had to go to jail, it was so cool that the jail would be at the state fair. You arrived about 15 minutes later and we had a long ride home. We got home a little after one o’clock in the morning. Mom and Ronnie were sheepish and apologetic to me the next day. Suzanne and Barb thought I was an idiot.
If you do have your version of this story written in a journal or diary, I may ask you to provide it to a psychiatrist one day. I may also want to ask if you can remember things about raising me that are like things about raising Michael. For example, it took months to teach him how to put on his socks. I worked at it every morning and didn’t think he would ever learn. He didn’t seem interested in learning it. Then, one day, he put on his socks like he’d been doing it for years.
I want to get a diagnosis for myself. I thought about seeking an Asperger’s diagnosis for myself a few years ago, but thought better of it. My temptation then was to use such a diagnosis to get a disability check. From what I observed though, getting a disability check can be more work than work. Besides, I didn’t want that to be the example that I provide to my son. I now want to get a diagnosis so that I can contribute to autism research.
Michael got his diagnosis of Autism Spectrum Disorder when he was three. Since then, I have learned about autism and wondered if I would have received the same diagnosis if I had been tested when I was a kid. The online quizzes I have taken have indicated that I am not on the autism spectrum. I think they would have if they had been around when I was young. The last quiz I took reminded me that an online quiz is not a substitute for a professional diagnosis.
I learned how to adapt in my 53 years. I learned how to make eye contact by looking at the space between a person’s eyes when talking to them. I learned how to make small talk and how to get along with people by reading Ann Landers and Miss Manners in the newspaper. I had help from many people. I am grateful that I had high school English teachers who encouraged me to try out for the debate team and school plays. Those experiences taught me to interact with people and to confront fear. I managed to make a few close friends, but two of them have died. I have gotten better at organization, but still have much to learn. I am often surprised by the fact that I am a supervisor at my job. I am even more surprised to find myself going home to a wife and son at my own house.
I think some of our family stories could help those investigating the genetic components of autism. One that comes to mind is the time when I was in second grade and you asked me one evening why I was late for school the day before. I told you how I had stopped to watch a squirrel run along a power line and tried to figure out what he was saying to me when he looked at me and chattered at me. You were unsuccessful at suppressing a laugh before you scolded me. I figured you had done something similar when you were a kid.
I recently convinced Rose that Michael was not being a smart-aleck when he asked, over and over, “Are you angry?” I think one of his therapists suggested that he ask that. I had to work at learning how to read people’s emotions. I remember both you and Mom getting exasperated and asking if I could not tell when people were upset. I admire my son for working at learning this more directly than I did.
When Michael was undergoing testing for ASD, I had to interpret for the clinicians once. They showed him an array of pictures and told him to answer questions by pointing to the appropriate picture. The woman asked him, “Michael, what do you use to watch cartoons and videos?” Michael did not point to any of the pictures until I said “What do you use to watch DVDs, Michael?” He pointed to the picture of a TV. I was able to clarify in that situation because I happened to know that we did not refer to them as “cartoons” or “videos” at our house, but as “DVDs.”
The incident makes me think that I might be a useful guy to have around for clinicians studying children on the spectrum. I could help them tell the difference between what’s autistic and what’s idiosyncratic of a child’s family. I think I could talk to the children in such a way as to get them to participate in activities the clinicians want to observe. People have told me that I have a lot of patience with Michael. It’s just because I remind myself that he is listening even when it seems like he is not. When I used to drop Michael off at preschool there was a nonverbal little boy who often grabbed me by the finger and would lead me to something in the room, like the train set. I never knew what he was trying to communicate, but his mother was tickled that the boy was trying to communicate something to somebody.
Maybe I can be the guy at a clinic or classroom that teaches the kids to put on their socks and look both ways before they cross the street. I have accomplished both of these things. I enjoyed being a guest reader in Michael’s classroom. Maybe I could be the guy that reads the same books over and over to the kids. If I don’t work with autistic kids, I hope that I can provide data that will help people on the spectrum adapt to adult life if I undergo lengthy interviews, cognitive tests and physical examinations. I want to donate my brain to science, but I want to do it while I am still alive.
Perhaps the best thing I could do for Michael and other young people on the spectrum would be to share my mistakes with them. I have plenty to share. If they can put them to good use by learning what to avoid, I will have done my duty.
When I see Michael get frustrated, I remember how I first started to get the idea when I was seven years old that I had a burden or disadvantage that I could not name. I did well at schoolwork, but all the other kids thought of me as stupid. I missed things going on around me. I understand my son’s frustration. I want to be able to help him overcome it by articulating what I did to overcome it. I think I have done some of this, but I think science has much to learn about autism. I have a lot to learn about communication, too. I think there are many adults who grew up before their parents ever heard about Asperger’s Syndrome or Autism Spectrum Disorder who could contribute data to the body of knowledge about the phenomenon.
When I get the call that Michael is missing, I think I will have some clues as to where to look. If he is not in the last place anyone saw him, I will have to rack my brains to remember conversations with him. He may be acting out some drama that he saw on TV or read in a book, like I imagined myself as Oliver Twist or Huckleberry Finn. Besides the time at the fair, there were other times in my life that I ran into you in unlikely places and your timing was good. You have told me stories about how it was the same with you and your dad. I hope this talent is genetic.
