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.