Living Side by Side With Autism

My brother, Spencer, and I are fourteen months apart. My parents first started noticing that Spencer was different when he was about a year old. When talking about my autistic brother, this question often comes up: what it is it like to have an autistic brother? My answer, I have no idea what it is like. 1

I guess now would be as good of a time as any to explain what autism is, or at least try to. Autism has many different layers to the disorder, so it is hard to define all ranges of autism in one paragraph, but I’ll do my best. Dictionary.com's definition of it was the most 'dumbed down' definition I could find. "A pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment." The word autism comes from the Greek word “autos” for self. Autism is sometimes described as having a severe lack of interest in other people and only caring about what affects them. 2

Autism has many different symptoms and not every person who is autistic has all the symptoms. 3

People with autism will sometimes do what is commonly referred to as 'stemming' or self -stimulation, this can be done with arm flapping, jumping up and down or repeating the same few sounds over and over again. Certain sounds, lights or textures can be too much for someone with autism to handle; my brother refuses to wear jeans for what we can only assume to be this reason. As long as I can remember, my brother has worn sweat pants or jersey shorts, even though both my parents have bought him tons of jeans. They will sit on the bottom of the shelf and collect dust. 4

Generally infants will respond to their name and face the person who called out to them; this wasn't the case for my brother. My mother initially thought he was deaf and had hearing tests done on him, but they came out perfectly fine. My brother had perfect hearing, but when someone called out his name it was as if he couldn't hear them. Infants with autism will not respond to their name, even if they do have perfect hearing. 5

Children with autism will often play with toys in an unconventional way. Growing up my brother and I both had tons of Hot Wheels and yards and yards of tracks. We even had the special doohickey that attaches the track to a table so the little cars can get speed going down and run the track until they hit the door. But that's not how my brother played with them; instead he would line all the cars up on top of the couch next to the wall. 6

People with autism are also obsessed with numbers and patterns as a toddler my brother loved license plates. Walking through a parking lot was a long procedure of him checking every plate and reading the numbers. Even now my brother loves reading other peoples grocery lists on the computer at the store. 7

One of Spencer's autistic traits is echolalia. Echolalia is when a person repeats or echoes something they have heard before. This is the way my brother speaks for the most part. A mumble jumble of military terms and Public Broadcasting commercials. Although his echolalia can get annoying after sixteen years we have figured out what some of it means. If he talks about Kids Park (a public drop-in day care in the Bay Area) or a baby panda diaper changer he is generally upset or over stimulated. If he is humming while eating, it means he enjoys a meal. When we have Chinese food he is practically singing. 8

Children with autism are often delayed when it comes to typical toddler developments. "Little milestones that others would take for granted were such great celebrations for Spencer because no one ever thought they would happen. Things like; toilet training, tying shoes and spontaneous speech were such obstacles one thought he would never overcome." Although it was all delayed, he was toilet trained at five, tied his shoes all by himself at nine and the first unprompted sentence I heard from him was when was thirteen, he has overcome all the expectations all the doctors set for him.9

Over the years, he has learned to communicate to an extent. He will answer the question 'how are you' but the only answer you will probably get is a monotone "I'm fine," an answer he has learned is acceptable over the years. He can generally answer the 'what do you want' question, if he actually wants something. 10

One thing that can help with his speech is by having a specialized tutor come in and work with him on a day-to-day basis, although he has a tutor now it was very difficult to get him a tutor when the information would have been readily accepted. “It was difficult to receive funding,” my mom said, “Some local families have even had to hire lawyers before the center would distribute funds.” 11

Many people think that a person who is mentally disabled is in a sense, stupid. This is never the case. When I was about five and Spencer was four, my mom and I were playing cards and Spencer was sitting behind us saying "shhhh" as if to quiet us down. At first we thought he just wanted us to stop being so loud. People with autism can have sensitive hearing, but it was weird of him to actually tell us what he was feeling. 12

According to my mom, "We turned around and he had the block letters on the floor and had the 's' and the 'h' next to each other. He was reading the blocks out, after that we spelled out other words for him and he read them. When we spelled out the words 'ice cream' he read them and ran to the kitchen talking about ice cream." Teaching yourself to read is not uncommon for autistic children. It's a way to communicate with the world.13

One of the hardest traits for my family to deal with is Spencer’s lack of realization about cause and affect: play with fire, you’ll get burned. When Spencer was younger he would leave the house with out telling anyone. Now in a small town like Arroyo Grande that’s too big of a deal, there aren’t a lot of places he could go, but my Dad lives in the Bay Area and he has taken off up there a few times. The first time was in Fremont and he managed to get across town and cross a huge and busy intersection, the police found him on a bridge looking down below. 14

The second time I remember a little more clearly, we were in Hayward at the time and my cousin Kelsey and I had just gotten scooters. We left them outside and before we knew it Spencer was gone on the scooter. My aunt and my cousin and I got into a car and began driving around town looking for him. I can remember being worried about my brother, but not scared. The police found him two miles down the road. We now have bells on all the doors at home so we can hear whenever any door opens or closes. 15

Spencer took up a lot of my parent’s attention while growing up, which I think may be one of the hardest parts about having an autistic brother. Even though I had a younger brother who I was close to in age I pretty much grew up as an only child. An only child that had to share a room and deal with her younger brother cutting all her Barbie's hair off and ripping Ken's head off. By the time I was eight all my Ken dolls had 'hearing aids' due to the wire my mom had rigged through their ears to keep their heads on. Once again with the unconventional way of playing with toys. 16

My brother, although I can't talk to him about upcoming movies or school gossip, I can learn so much from him. And I have learned a lot from him; patience, understanding, acceptance and tolerance. Growing up with an autistic brother has been hard, but I don’t know anything else. And no matter how hard things get, I wouldn’t want my brother any other way.17