A Silent World: Facing the Communication Barrier

My brother, Matthew, was diagnosed with autism at 19 months. Frankly, I never found it out of the ordinary to have a brother that sang the same song for hours or printed hundreds of pages of piano music a day – that was all I’d ever known. It wasn’t until I grew up, went to school, and heard about all of my friends’ siblings that I realized how much this had affected my life. When someone asked where my brother went to school, they wouldn’t recognize the name. Later on, when they asked if he had his license, I would have to explain that he didn’t and probably never would. I remember an adult once asked if he would be able to vote. That shocked me – he’s a person; why couldn’t he share his opinion?

Normally, I would sit there quietly and explain as little as possible. My worst fear was that people would talk about their lives in a different way because of my situation. However, I found it hard to listen to my friends go on and on about their siblings’ achievements. At school, it felt almost as if I were an only child.

I never found it embarrassing for Matthew to be around my friends, but it was awful when he would stim and they would widen their eyes and quickly turn away. Many didn’t even acknowledge him, and those that did always glanced at me out of the side of their eyes. As much as I hate to admit it, I think I could do a better job at acknowledging him myself. I’ve gone weeks without talking to him before. He’s non-speaking, but a few years ago he started a therapy called Rapid Prompting Method (RPM), which allowed him to express himself through a letterboard. It’s almost funny: I remember I used to play school with him and one of our “assignments” was to write an essay about the dangers of smoking. I tried to use a keyboard with him, but it failed miserably and basically wrote the whole thing for him. I felt so bad that I was putting him through something that clearly was not working that we never played school again. It’s ironic that the very thing that stopped this ritual opened him up to the world.

The first time that Matthew did RPM, we were skeptical. We went to this tiny office in Virginia, and an older lady ushered us in. We entered a blank office and she pulled out a packet about sea life. For the first time, someone spoke to him as if he could comprehend age appropriate content. His excruciatingly slow answers ended with a game of Tic Tac Toe, which Matthew won. The therapist said something about Matthew not seeming happy to win, prompting Matthew’s response of “why should I care; you let me win.” This was one of maybe two times that I have ever seen my dad cry. To the average person, that would seem like nothing, but for us, this was groundbreaking. We would have a chance to get to know Matthew for the first time in thirteen years. This was the start of Matthew’s transformation from a locked-in person to becoming open and sharing his insane intelligence. Before, as a middle schooler, he was given first grade math and reading assignments. Now, he is doing above grade level work -- he’s moved up to 12th grade math, is writing poetry, gives talks at national conferences and most importantly is totally engaged in our lives.

Through this communication method, we learned that he has synesthesia and perfect pitch. We also learned that his obsession with a specific child’s music group – one that we had been hating yet buying him albums from for years was literally an addiction that he despised. I have a totally different view of him and his friends now. For example, we realized that he listens to literally everything, something that we did not think was the case before RPM. He asks me about things that I’ve talked about days ago or mentions something about the news that happened last month. This was incredible because we never thought that he was taking those things in.

A striking memory that I have about RPM happened while my mom was holding the letter board. I was upset about something – I don’t remember what – and my brother told me that he loved me. He had never said that before without being prompted. I had to leave the room because I didn’t want him to see me cry.

All of these amazing moments have their respective difficulties. His love of music means that he never stops playing the piano, even after midnight. I’m also not able to do RPM yet with him. I don't know why I don’t practice more. I think it’s the fear that it won’t work and that we’ll never be able to talk to each other when eventually it’s just the two of us. However, the fact that I know such specific things about him, such as his sensitivity to people singing (especially Happy Birthday – he’ll run out of the room if you try to sing it), leads me to feel more confident about our future together. It’s annoying when he can’t control his body and takes my food or something like that, but it’s okay because I’m sure I annoy him, too.

I don’t think people realize how much of an impact a sibling has on your life. I’ve been exposed to some bad situations with Matthew, such as people becoming verbally abusive or just not getting it. Although I do wish that his life was easier for him and he had more opportunities to do what he loves, I don’t know what I would do without him exactly as he is. The lessons that he has taught me and the tolerance that I now have are things that make me a better person. His perseverance and determination to become an advocate inspire me constantly. As I sit here writing this, I can hear him with his teacher talking about agriculture and the economy. Years ago, I never could have imagined this would be a conversation that I would overhear. To many people, his accomplishments seem ordinary. I couldn’t go up to a friend at school and tell them that Matthew typed two sentences on the RPM board with me for my mom’s birthday card. No one would understand why that’s such a big deal except me. My brother and I don’t have a traditional sibling relationship. Yet, he’s my best friend, and I don’t know what I would do without him.

SophiaComment