Growing Up With an Autistic Brother in the 1990s

"I wish I was you. You're normal."

(DBduo Photography/flickr)

Today approximately one in 88 children are identified as on the autism spectrum. But in 1990, autism was just a blip on the radar. You didn't hear about support groups, special training for educators, clinical studies. All that a small autistic child had was his family.

I was born the last of four children. My mother had two children from a previous marriage, so my only full brother is Michael, who is just 22 months older than me. The summer before I was born, my parents noticed that Michael was not developing at the same pace as most children. At 18 months, he was not talking, still using a bottle, and extraordinarily fussy. When he was two years old, his fussiness turned into outbursts. Unable to communicate what he was thinking, Michael threw temper tantrums and his behavior was extremely erratic. My mother, a registered nurse, knew that something had to be going on, but could not understand what all of these incidents meant.

Not only was my family clueless about what was causing Michael’s behavior, but there was nowhere to go to try and find answers. We lived in a town of 200 in rural southeastern Illinois, went to a consolidated public county school, and drove more than 30 miles just to reach the nearest Walmart. Cutting edge health research was at least a day’s drive away, and Michael could hardly sit in a car long enough to make it to school every day. At the age of three, Michael was diagnosed with autism after a nurse at a preschool screening said that he had “autistic-like tendencies.”

It feels like a miracle that my parents are still together. They always struggled over how best to discipline Michael. While my mother would try to be gentle and lenient, my father saw Michael’s misbehavior as orneriness and tried to enforce strict rules. The result was chaos between the three of them and I was stuck somewhere in the middle trying to figure out where I fit in. I felt pressured to be the son that kept the family together.

At a young age, I accepted that I had to play the role of Michael’s older brother. That meant I had to look out for him at school, make sure he knew where he was going, and be the one to calm him down when he had an outburst in class. I remember receiving intercom calls in 2nd grade asking me to go to Michael’s classroom, which was inevitably filled with teachers and aides frantically trying to calm him down while he threw things and yelled at the top of his lungs. But seeing me and knowing I was on his side seemed to calm him. When he had these fits, I would walk straight to him, grab his shoulders, and ask, “Michael, what’s wrong buddy?” This would usually be followed by a hug from Michael and five minutes of weeping while he eventually calmed down.

This routine became a normal part of life for me. At school, restaurants, malls, or vacations, when he would start to get frantic, I was the one to tell Michael everything was going to be fine.

Outside of our immediate family, relatives had a hard time accepting that they could not treat Michael the same way they treated me. Countless Christmas and Thanksgiving dinners were spent with someone trying to tell Michael what to do, which often led to passive aggressive arguments about the best way to raise an autistic child.

One of the hardest moments I’ve ever had with my brother came when I was 16. I had a car and a job and was finally able to be something of a normal teenager. I drove Michael to school in the morning, usually a quiet ride with the radio playing low. One morning, he looked at me and said, “I wish I was you.”

“What do you mean?” I asked.

“You’re not autistic,” he replied. “You can drive a car and play sports and get a job and make money. You’re normal, and I’ll never be able to be normal like you.” I had no clue how to respond to that. His self-awareness had finally caught up to him, and it left him with a pretty grim future.

At the age of 23, I married Nicole, the love of my life. I asked Michael to be a groomsman for the wedding, and he agreed. The day of the ceremony, I could tell something was up. I didn’t want to let it bother me, so I asked my good friend Ryan to watch out for him and keep him in good spirits. But at the end of the ceremony, Michael came running down the aisle screaming, “Congratulations, you beat me! Now I’m NEVER gonna get married!”

My instincts kicked in. I grabbed him and brought him in for a giant hug, allowing him to cry and calm down for a moment. I told him how much I loved him. I told him everything was going to be fine. Within an hour, Michael came up to me to apologize about the outburst and told me how happy he was for Nicole and me.

Today, Michael  lives in a group home with four other men, works five days a week at Coleman Tri-County Services in Shawneetown, Illinois, and has a lovely girlfriend named Marci. He helped pioneer the special education program in our public school. Earlier this year, we attended a concert together with 10,000 other people. When he was young, he could hardly be in a restaurant with 10 other guests. At the concert, he waited in line for the restroom and made his way through the crowded arena with no problem at all. When he meets new people, he immediately opens up the conversation and talks about a shared interest. He didn’t even start talking until the age of six. All in all, Michael has become a fantastic grown man, and one of my biggest heroes.

My mother works to raise autism awareness in our region and guarantee the well-being of students with special needs in public high schools. My father, who had the most difficult time of all of us accepting Michael’s autism, enjoys going to St. Louis Cardinals games and Tom Petty concerts with him. I stay in touch with Michael regularly. We talk about books, movies, and video games. Growing up with Michael was not easy, but he helped make me into the man I am today and I am thankful to have such an incredible brother in my life.