My parents told me my brother didn’t speak until he was four years old, right around the time I was born. His first word was actually an entire phase. My mom said she nearly drove the car off the road when he uttered “Big valley down there,” from the back seat of the car. April is Autism Awareness month. In honor of that, I’m sharing my experience with autism. My big brother, Colin, is autistic.
Trying to describe my brother is like trying to describe a puzzle and how all the pieces fit. Because autism is a neurological disorder, people with it experience life differently. My brother has trouble processing information. He lacks social skills and is uneasy with social situations. He engages in repetitive behavior. Change is VERY hard. He has trouble with empathy. Understanding social cues, like how to take turns talking, is difficult. Textures (such as food) have a big effect on him. All of his senses are heightened (he covers his ears every Fourth of July during fireworks). He’s not good with eye contact or touch (hugs are rare).
Conversely, these same things have made life interesting and good at the same time. One Thanksgiving, as we were deciding who would say grace, Colin shouted, “Grace” and began eating. He knows everything (and I mean everything) about pipes/drains and cars (classic and current). He can tell you the date and time of an event or conversation that happened 30 years ago. His compulsion for cleaning is a good thing! He’s honest in the same way kids are honest; it’s pure. His likes and dislikes are very well known – there is no complicated gray area. He really enjoys putt putt golf and bocce ball. Ironically, he’s very good at puzzles.
When we were children, I didn’t know my brother was different. Kids say and do weird things, so he didn’t seem atypical. It wasn’t until I was on the cusp of my tween years (and he was a young teenager) that I realized some of his behavior wasn’t like mine or other kids. Looking back, it wasn’t until I noticed kids whispering and making fun of him that I really became aware of it. The things he said and did were no longer “normal.” It was obvious that he was unlike others and I became embarrassed when he rocked back and forth while sitting or when he talked out loud to himself. I was so worried about what people would think of my brother. I was worried they would make fun of him. I was worried they would make fun of me. I kept my core group of friends small. Keeping a protective bubble helped me cope.
Colin wasn’t diagnosed until he was almost twenty years old (I was sixteen), so I never had something concrete to say about his actions. There were no formal terms to describe his quirks. Explaining something I couldn’t explain was hard. My usual phrases were, “he’s different,” or “he has special needs.” Back in the 1980’s and even 1990’s, autism was not in the limelight like it is now. It was non-existent in the media and hard to identify in the medical world. That’s why his diagnosis came so late. No one could figure it out, and my parents had him to every doctor imaginable.
When Colin was finally diagnosed with autism (Asperger’s Syndrome, actually), a whole new world opened up to us. We had information. We had terms. We had answers. We had KNOWLEDGE. Everything he said and did over the years made sense. The most important thing that came from all of this was knowing we weren’t alone. He wasn’t the only person living with a neurological disorder and we weren’t the only family struggling to deal with it. In the years following, we went to conferences and met other people with autism. We even met and heard Temple Grandon speak. I finally learned to let go a little bit. I didn’t care as much about what people thought, because now I could give his behavior a name and explain it. I could educate people instead of being afraid of them.
There are people in this world who are natural and patient with people with disabilities. I am not one of those people; and it took me a long time to realize that. I always thought because my brother had special needs I should instinctively know how to interact with him. I thought it made me a bad person when I became frustrated or didn’t know how to deal with him. Now that I have two children of my own, I try to imagine what life must have been like for my parents when their first child didn’t speak until he was four. There has been a lot of worry over the years, especially for the future and what it holds for him. When my brother was young, resources were almost nonexistent, and now (thankfully), they are plentiful. Except, they are plentiful for children with autism, not adults. Yes, there are services out there. Yes, my parents utilize every single one. However, until the one out of every 68 children diagnosed with autism get older, they won’t be as abundant.
Biologically speaking, I am the younger sister, but I’ve always been the big sister. Having a sibling with autism has shaped my life in so many ways and it’s only recently I’m figuring out how. Nowadays, when we have rough moments, I’m learning to take a step back and realize that if it’s hard for me, it’s a million times harder for my brother. I’ve learned (perhaps more than anything) life isn’t easy, autism or not. As cheesy as this may sound, life is like a puzzle. Autistic people are just bigger, more complicated puzzles. One day, there will be answers. We’ll know why and how to prevent it. Until then, recent studies point to autism beginning during pregnancy. This is HUGE news and incredible progress for all those affected by this disorder. If you want to know more about autism, please visit Autism Speaks, or talk to your family physician.