Living Side by Side With Autism

My brother Spencer, seventeen, has autism. He speaks in mostly echolalia, a mixture of street names, animals, military terms, video games and Sesame Street characters. While he can communicate with his family and peers, both because of some therapy and his family and peers learning to interpret what he says, he has very limited spontaneous speech and it’s generally limited to asking about his next meal or expressing a complaint. He frequently self-stems which has escalated from the typical arm-flapping to intense waving of his arms and head banging. Due to his height, we’re waiting for him to punch someone out one of these days, a real possibility, because in typical autistic fashion, Spencer doesn’t truly understand cause and effect.

Getting Spencer diagnosed was difficult, although it was obvious to most of us that Spencer was a different than normal children (my aunt, a child development major described him as being “quirky” and “not as mature as other two year olds”). Doctors attributed Spencer’s “quirkiness” to my mom not being able to handle his behavioral problems, despite me being the poster child for a well-behaved youth. After he was diagnosed it didn’t get any easier. Today, autism is the most frequently diagnosed disorder and yet it has significantly less funding than lesser known diseases or disorders. Spencer’s quirkiness has made him an amazing child and teenager. By age three he had taught himself to read and he can now annihilate anyone at Scrabble. He can name the artist, album and release year of vast amounts of Eighties songs and he can work out simple tunes on the piano without sheet music.

Spencer and I are fourteen months apart and I have no memory of being an only child or not having an autistic brother. With time, I’ve learned to accept that things will be different for me. With age, I’ve come to accept that my parents are going to have to pay more attention to Spencer than to me but I’ve realized that they don’t love me any less. Having Spencer as a brother has forced me to grow up fast and become more of an adult than I would normally be for someone my age. I know there are things that I missed out on because Spencer’s attention span isn’t what it could be. Some situations have been harder for me because Spencer’s communication skills are on par with a two-year-old. Despite the downside of having an autistic brother, I wouldn’t change it.

I can’t honestly say that I’ve never resented Spencer’s diagnosis. Because he looks like an average teenager, in the heat of the moment it’s hard not to get upset with him for doing something wrong, like ripping the posters off my walls or cutting my Barbie’s hair off. He doesn’t know any better. But, once the anger and hurt subsides, I remember once again what Spencer has taught me. Because of Spencer I have developed the utmost patience for anything, except perhaps lines at movie theatre bathrooms. Spencer has taught me to be kind to everyone, no matter the circumstances. I’m sure he’s taught me a multitude of other things that are so ingrained in me I take them for granted. However, seeing him make strides every single day brings me the most joy. A key factor to autism is the inability and not wanting to socialize, in the past few months though Spencer has taken up telling his own version of knock-knock jokes (Knock-knock. Who’s there? Construction. Construction who? Construction worker.)Every day Spencer can manage to bring a smile to my face without even trying.

Conversely, siblings of children with autism aren’t always like this. Besides Spencer, I have three young half siblings: Hanna, who’s ten and in fifth grade, Caleb who’s almost nine and in third grade, and Emily who will also be nine at the end of April and is in second grade. Unlike me, there has never been a time in their lives when they have not had a brother with autism. However, Spencer and I both visit our dad in Santa Cruz on the weekends, over the summer and during most holidays, so Hanna, Caleb and Emily do get a taste of what life is like without a brother who has special needs.

When interviewed, each responded differently. Emily was very much like me; it’s hard to step outside of yourself and view how Spencer affects you. Hanna played the part of a typical pre-teen and remained blasé about the whole thing. Caleb answered truthfully and expressed his resentment towards Spencer. I won’t pretend that it didn’t hurt me.

His feelings may have something to do with the fact that he and Spencer are the only boys in the family besides Caleb’s dad, Tim (who has cerebral palsy), and it’s more difficult for him to identify with an older brother who does not present a “normal” role model or even sibling relationship. Caleb has explained that he wants a “normal” brother who will play with him, perhaps because he sees me playing Barbies with Hanna and Emily. But, if Spencer were an average teenager I have a hard time believing that he would sit and play Legos or Transformers with Caleb. Football, perhaps, although it’s hard to fairly play sports with someone who is almost ten years your junior. But this is not of importance to an almost nine year old in a family of almost all girls.

It isn’t uncommon for children to feel left out or unloved when it comes to having an autistic family member (Harris). People with autism require much care and supervision and a child without special needs may think that this means their parents don’t love them, since children justifiably equate attention with love.

Having an autistic family member isn’t just hard on the siblings, it’s hard on the parents too. “Autism is such a different special need; he looks normal, so there’s no explanation for his behavior,” our mother, Sandra, explained how she was perceived to be the bad one if Spencer was throwing a fit in the mall. If a child has Down Syndrome you can see it in their facial structures. Besides the far off look in a child’s eyes, there is no hint to autism. “I learned a lot from Spencer. I think I was a better parent for the younger three because I knew the importance of sticking to a schedule and transitioning between activities. All the skills I learned for Spencer could be applied to the little ones.”

Linda Paul (our step mom) came into my and Spencer’s life about six years ago, which put her in a unique situation. “I appreciated what a sweet kid he was and how he liked to hug, but it was also hard because he would only let you get close up to a point and then he would be done. The over stimulation thing was also a trip. I remember taking you guys to FAO Schwartz at Union Square thinking how much he would enjoy being in a giant toy store when in fact it was too loud; too many people and he started crying. You had to be so flexible because at a moments notice Spencer would pretty much dictate how long you could stay and it didn't matter what you or I wanted to do, we had to leave because he had enough.” Being part of a family with a child who has autism teaches you to make numerous sacrifices because if Spencer isn’t happy, no one is going to be happy.

Lessons learned by living with an autistic family member can have both its advantages and its disadvantages. “Assuming you are working with a certain amount of commonsense and prudent safety measures you can create an environment in which your non-disabled child can be relatively safe, but still have an appropriate amount of independence to explore their environment with moderate direct supervision,” said our father, Stephen. On the other hand, “There is no real predictability or behavior range (for a special needs child). Regardless of the “reasonable” precautions you take, there is always a chance something will happen. Choose one out of the many with Spencer: got lost; shaved his eyebrows; turned all the burners on to cook pancakes and left the burners on full blast. When he’s awake I am awake, always listening for the thing that doesn’t sound right.”

“As for his future, well, who’s to say? But short of a miracle, we know his future will be limited in a variety of ways: college, marriage, kids, etc. So in a very real way the cycle of life is broken,” our dad said. It’s a dismal outlook, but it’s true. However, focusing on what he can achieve is key and seeing that he wants to do normal things like getting a job is a wonderful thing. For Spencer’s future our mom sees what has been set out for him since he entered the system, “he’s been asking for a job, he’ll probably go to AG next year.” Arroyo Grande High School is the location of the class for the special education students ages 18 to 23. I volunteered in the class last year and the class goes onto job sites such as Trader Joes and the school cafeteria. At these job sites the students learn skills that can help them function in a work environment.

Having an autistic child in the family changes more than just the family dynamics. I asked each of my siblings whether or not they would want Spencer to be a “normal” teenager. Emily’s answer was a resounding “no.” “I wouldn’t have as nice of a brother (if Spencer didn’t have autism); I already have a mean one ( that’s Caleb).” Hanna thought long and hard before answering, “I don’t know. I don’t know what it’s like to have a normal teenage brother, I don’t know if I’d like it.” Which is what it all boils down to; as siblings we don’t always like having an autistic brother. It makes things hard. But Spencer is Spencer and I think even Caleb would have to agree that having Spencer in our family makes our family our family.

AN: Hope you enjoy and please review, I'd greatly appreciate it and I'll return the favor.