My brother Joe had thick glasses. He couldn’t close his lips all the way without great effort. He chirped. He snapped his fingers all the time. He liked to pull people’s hair. He never seemed to follow a conversation for very long. He didn’t touch you when he hugged you. But he was a fun playmate, and that was all that mattered to me when I was a little girl.
We grew up in the 70s. I had two older brothers. Joe was the oldest of us all, four years older than me. Steve was smack in the middle, a very able, athletic, and adventurous guy with no interest in playing with his less-capable brother and his whiny little sister. He was often hopping the wall behind our house and running off with his friends. Joe and I played together all the time. We went on long bike rides and played make-believe in the various parks around town. We often played with all the toy airplanes in his room, and I never once thought it odd that a lot of our games were lining the planes up from biggest to smallest and moving them one by one in long lines. I liked the funny way he snapped his fingers because it reminded me of that cool snap that Pinky Tuscadero did on Happy Days that all the kids in the neighborhood tried and failed to imitate.
Then I began to grow up. I hit puberty and suddenly became aware of the taunting that happened in the neighborhood when we would pass by. I stopped wanting to play pretend games, and wondered why my teen brother still enjoyed them. Playing with his toys became boring and monotonous, and I couldn’t figure out why he liked doing that all the time. His chirps and snaps became annoying and embarrassing when we were around. Why couldn’t he stop? Why couldn’t he close his mouth when he chewed? Why did he always change the subject twenty times when we were talking?
When Joe went into middle school, my parents switched him to a campus way across town that was supposed to have a better special education department. Due to the fact that it was a year-round school, they moved me to a new school too, a year-round elementary school. Now, instead of walking 5 blocks to school, I had to take a bus. Joe and I waited at the same bus stop each morning, and he got teased by the same mean boys every day when we’d be waiting there. I tried to ignore it, but it got hard and I wanted to be away from him. I considered it lucky that he and I didn’t go to the same school like Steve and he. Steve actually only went to middle school with Joe one year and then my parents let him switch back to the school all his friends attended.
Through all of this, I didn’t know that my brother was Autistic. I can’t blame my parents for not telling me. They didn’t know either. No one knew, actually. That diagnosis didn’t become an official special education category until 1991, a full decade after this point in our lives.
I recently asked my mother and Joe about what they were going through during those early years. My mother said that they knew from the start that Joe had some issues. He couldn’t breastfeed or latch onto a bottle as a baby because of his lip, and she had to spoon-feed him. He had trouble with hyperactivity and was sent home from daycare programs for being disruptive. She told me that when he was six “Autism” was mentioned by a doctor, but there wasn’t much known about it yet. In fact, it was believed that Autism was caused by “refrigerator moms”, women who didn’t love their children enough. That was definitely not my mom. Ultimately, Joe was declared “brain damaged” and “slow”. He was in a private school in his early education years, held back a couple times, and switched to public school when we moved away from the San Fernando Valley down to Irvine, California. Joe had weekly therapy sessions for behavior and speech.
I don’t remember this. I have a vague memory of him going to a camp with horses and being kind of jealous about it. That was apparently the private school for special needs kids (funded by the government) that he went to through 3rd grade. I remember that we drank pineapple juice instead of orange juice and ate natural peanut butter instead of the good tasty kind because the sugar was bad for his hyperactivity. We weren’t allowed to have Trix or Fruit Loops cereals because of the artificial coloring. I remember thinking that we shouldn’t all have to be punished for him not being able to control himself.
Clearly, some of my thoughts were unfair. It’s hard, though, being a sibling of a person with special needs. When you’re a child, your world is very small, and all you see is what is right in front of you. All Steve and I saw was that we were getting a raw deal because of things Joe needed. Steve and I had different ways of handling it. For me, once I became a tween and young teenager, I chose to ignore it. I dove into my own issues with friends and school. I stopped hanging out with Joe or playing with him. I don’t remember how deliberate this was, but I do know I didn’t take Joe’s feelings into consideration at all.
At long last I was entering high school. For the first time all three of us would be in the same school at the same time. I figured I wouldn’t see them much. I was in Drama and figured they wouldn’t be in my sphere often. This was true of Steve. I don’t think I ever once crossed paths with him at school. Joe, however, was very present. He was part of the Drama department, volunteering to help out backstage for the plays. And to my great surprise, all the kids in the performing arts crowd really liked him. They liked his enthusiasm and enjoyed having him around. I discovered that he was well-liked by the football and basketball players too, because no one at my high school had more school spirit than him, and he was everyone’s fan. If there was bullying going on, he was unaware of it and I didn’t witness any. My brother was cool, and I was happy to stand beside him and claim him.
I asked Joe the other day how that happened. Why wasn’t he the object of ridicule? With all his ticks and odd behaviors, shouldn’t he have had a hard time fitting in? Joe told me that his bus to middle school went past the high school every day. He would daydream about having a high school experience like in the movies. He wanted to be in clubs and go to football games. It was all mind-over-matter, and he was determined to have a great experience. He had a great homeroom teacher, too, who helped him navigate all of it.
I tell people all the time that my brother is the happiest person I know. Sure, he has troubles, but he always has that optimistic outlook about life that I envy.
Due to my brother being in special education, my mom wound up becoming a teaching assistant in special education preschool. When I graduated from college, I subbed in her program and then eventually got a job at a private school for special education elementary school children. For the past 11 ½ years I have been a teacher at an early intervention center that has inclusive classrooms of special needs and typically developing children. Between the two of us, we have gained quite a bit of knowledge and education about special needs, including Autism. Joe has never officially been diagnosed with Autism by a doctor, but we are certain that he is on the spectrum. He is high functioning with a terrific memory for facts and is able to work. I asked him how he felt about us coming to that conclusion. Joe said that he felt it made sense and he didn’t have a problem with it. I think he feels comfortable knowing where he fits in the world.
When my daughter was little, she would play make-believe games about dragons, knights, princesses and evil kings with him until she too got to be about twelve and grew out of it. Joe was pretty sad to lose that opportunity to be a kid again. He was like Robin Williams in Hook, having that brief time to be Peter Pan once more. This time around, though, I was able to explain Joe’s differences to my daughter, and she was sensitive to him in a way I never was. Even as she grew into her teens, she made time to visit with him and talk about their on-going magical world game or their favorite characters in the TV show Once Upon a Time. I am proud of the special bond that they share.
And you know what? He still clicks and snaps, but it doesn’t bother me one little bit.
I hope you have enjoyed this nostalgic look back into life with an Autistic brother in the 19070s and 80s. I have written a children’s novel titled No One Needed to Know based loosely on my experiences growing up as a sibling of Autism. It is targeted toward 8-12 year old readers. You can learn more about it at www.dgdriver.com/no-one-needed-to-know.html. I will be back with more blog posts about siblings of special needs. Please comment below if there is a topic in that theme that you’d like me to explore.
No One Needed to Know can be purchased at Amazon: https://www.amazon.com/dp/069282913X
Facts about the history of Autism are from: