Causecast

by CLAIRE DALTON, Contributing Writer

When my brother and I were young, our mother stayed at home, leaving her job to raise us in the early years. By the time I, the youngest, was eight years old, she began to look for a job, a new career. She began to work at an early childhood program for children with many genetic and neurological disorders. In a year’s time, she found her calling working as a paraprofessional at my elementary school, where the need for support for children with emotional and behavioral disorders and autism was great.

Her duties were always varied. When she wasn’t assigned to a student in the classroom, she was needed in the playground and the lunchroom to monitor the general school population. For lessons, her time was often split between classrooms, with one or two students that she was intended to help. But as the years went on, her assignments got larger, and far more vague. In one classroom, she’d have two students with whom she was meant to work, but was asked to additionally help two or three others who were exhibiting signs of difficulty.

The other students’ reactions to the children with autism often involved confusion and fear. Because the children with autism didn’t understand the social cues, they interacted with their peers inappropriately, responding to situations aggressively, or with confusing behaviors that the other kids couldn’t predict or understand. For many young children, the erratic and inexplicable behaviors led them to limit their interactions with the autistic students, perpetuating many of the difficulties the children with autism experienced.

But this reaction of confusion and fear doesn’t end with these young children, nor does it stop at that. Despite the growing number of children with autism, many of these individuals and their families are misunderstood and treated unfairly by the general population. It’s not to say that this behavior is intentional, but as we’ve seen in history over and over again, when faced with something we don’t understand, we often respond with fear and discrimination. Especially as the rate of autism grows, it is imperative that we understand the lives of those who live with autism and their families.

You’re probably thinking, “C’mon, isn’t that a little melodramatic? ‘Unfair treatment’?” I don’t think so. A story comes to mind from May 2008 about the Race family. Carol and John Race had been attending the Church of St. Joseph’s in Bertha, Minnesota, since 1996 with their four children. One of those children, Adam, was severely autistic. At 13, he was a big guy, almost six feet tall, and occasionally his disability resulted in acting out during the church service. The Races had never had any complaints about Adam, until their priest, Daniel Walz came to visit them at their home one day to tell the Races that they were not adequately disciplining Adam, who he said was physically out of control and was putting the other parishioners in danger. Walz later sent a letter explicitly asking them to stop bringing Adam to church with them. Offended but determined, they turned the other cheek and continued to bring their son to mass. That’s when they were served with a restraining order.

WHAT? A restraining order?

Carol brought Adam to mass with her on Mother’s Day, despite the restraining order. She was issued a warning and told that if she tried to do so again, she would be arrested. The next Sunday, she found a Todd County Sheriff at the end of her driveway, warning her again that she would be arrested if she brought Adam to St. Joseph’s. That day, they drove to a new church, and have not since returned to St. Joseph’s.

I was living in Minnesota when this happened and was outraged to see the story unfold on the news. Having grown up in a household where autism was a topic in our daily lives, I was raised to have empathy for those living with autism. I was taught about the disability and saw it as just another life difficulty for some, and I greatly respected and admired my mom for working to help improve the lives of these children. Though I had realized that not everyone had the same opportunity to learn about autism as I did, I hadn’t imagined just how ignorant many people were about the disability.

For a long time, many blamed the behaviors of children with autism on bad parenting, citing that a lack of discipline was at the root of the inappropriate behaviors. Unfortunately, this sentiment is still alive and well in many communities. But even those who understand often see those with autism as something outside of us, something we don’t have to acknowledge or support. I realize that very few people would agree with Walz’s actions towards the Race family, but sometimes the disability is subtle, and it is in these cases that empathy can be hard to come by.

Autism is a spectrum disorder, meaning that those with autism are classified on a scale from low- to high-functioning and may be affected differently by the disorder. Among the high-functioning disabilities are Pervasive Developmental Disorder and Asperger’s. It’s highly likely that you’ve met someone with one of these disabilities, maybe worked with or been in class with them. For many living with PDD or Asperger’s, their disability is passed off as shyness, or just being “different.” Many times, they are often not given the kind of respect, understanding, and support that they deserve. We spend so much time discussing the lives of children with autism, potential “cures” and who to blame, that often times we don’t address the unique issues that autistic adults face. Many of us forget that the children we see every day struggling with autism eventually grow up and have an entirely new set of challenges.

For me, this came to light during a summer I spent at home with my parents. I was unemployed and stuck in a rut. One morning my mom came in to tell me that my cousin’s wife was working as a personal care attendant for a young adult, a girl with Asperger’s. Sarah (name has been changed) was only a year younger than I and was about to go back to college after taking a semester off. Early in the summer, Sarah had decided she wanted to spend time with a PCA closer to her age; I was intrigued by the idea of being a part of her and her family’s support and thought I’d feel better about my own life at the time if I could do something I considered to be “good.” I had no idea what my summer with Sarah would really mean to me.

I went through the appropriate steps to become a PCA and began working with Sarah about three times each week. We talked about everything two early 20-something girls talk about, from the stress of friendships as we become adults to which guy was the cutest on the shore. We went to dinner and to the mall, to church services, and learned how to paddle board together. One day we canoed to the middle of the lake and dared each other until we jumped into the lake in our clothes. We had a wonderful time together, and I began to see her as my friend instead of someone I was “helping.”

But sometimes Sarah would cancel. She’d call and say she had a hard day, or that she was tired, but what it really meant was that it was too much for her to have me there with her. It was these days that I was reminded that it was hard for Sarah to be my friend, that it took effort to hang out and feel any level of comfort with me. To the folks that Sarah and I met that summer, most thought nothing of our friendship. That was what made things so difficult for Sarah—she was just another college student, looking for a part-time job that summer and wanting to move out of her parents’ house; similarly, I suddenly found myself two weeks away from a move across the country. I spoke with Sarah’s mother and told her of my plans. We decided to talk a few days later about my last two weeks. I had offered to continue coming as often as I could before I left, but when I heard from Sarah’s mother, I learned that Sarah had decided it would be easier for her if she didn’t have to say goodbye.

That night, I struggled with the thought of leaving without seeing Sarah again. For me, she had become my friend, the girl I spent my time with those summer months. But for her, it meant she didn’t have to push those few weeks. She didn’t have to put herself out in the community, with people she didn’t quite know yet. It meant that she could spend the days with her family, the ones she didn’t have to try so hard around. Suddenly, it became so clear to me that my summer with Sarah wasn’t about “helping” her and her family; to think that was a complete lack of understanding and respect. It was about building a relationship with a girl who needed someone to grow with her at her pace, and think of her needs by understanding her perspective. I think its something we all need to remember.

When we meet adults living with autism, we need to remember to pay them the respect they deserve. More than that, we need to provide positive advocacy for this community. Too often we hear about the trials and the frustrations of living with and supporting autistic adults, when instead we ought to be focusing on inviting them into our lives and being their ally. Folks like Lindsay Nebeker and Dr. Temple Grandin, who themselves are on the autism spectrum, have been working towards providing positive support for autistic adults and the voices of this community are gaining volume. Currently there is a petition to help families with autistic children and autistic adults through in-home support, which states that the need to support this community supersedes the discussion of causation and research. This is one of the first major steps in recent years to support families living with autism instead of looking to place blame, and beyond considering supporting this petition, I encourage you all to consider what we can all do to support those living with autism in our own communities; I cannot express how much richer my life was once Sarah was a part of it.

Photo by Baston, flickr