Oct 04, 2012 0 Share

Effects of Leaving Normal

Illustration of children holding hands in silhouette; same image three times.

The title of the Washington Post article grabbed my attention immediately: “Autism Can Have Large Effects, Good and Bad, on a Disabled Child's Siblings” written by Ranit Mishori, a family physician and Georgetown University School of Medicine faculty member. I was intrigued, yet after my disheartening recent experience of reading “The Normal One,” I was hesitant to dive into another piece about siblings and special needs. However, reading Mishori’s essay was a reassuring experience for me. Her younger brother, Dror, has autism, and her article displays candor, courage, and a reasonably balanced perspective on both the positive and negative effects of being a “special sibling.” For her emphasis on the fact that siblings and families are resilient, I want to say: Thank you

As the article notes, having a sibling on the autism spectrum does pose difficulties. For example, I could relate easily to an incident Mishori described in which her younger brother bit her on the face. My first memory of interacting with Willie when we were kids is of him biting my hand during a battle over TV shows. We were fighting because each of us wanted to watch a different show, and right in the midst of our battle he bit my hand. More appalled at his behavior than physically hurt, I howled for our mother. Even at 4 years old, I remember noticing how my 2-year-old brother looked: guilty at having “crossed the line” but also a bit pleased with himself for his ingenuity. Yet while one could chalk that particular incident up to typical sibling rivalry, the story of how my brother bit my leg during one of his meltdowns cannot be categorized in the same way. That time, we were both young adults … and the bite really hurt. My physical and emotional wounds from that incident took a long time to heal. 

And when Mishori details some of what siblings of children with autism are “up against,” I can call to mind memories and examples to match every item on the list. When Willie and I were younger, his having autism didn't seem like such a big deal to me—at worst, I'd be annoyed when Mom, Dad, and I would have to hunt for Willie after one of his runaway episodes. But when Willie started having meltdowns in his teens, the challenges of being his sister increased dramatically. To paraphrase Mishori’s list: I have “missed out” on typical family outings, felt afraid to invite friends over to our home, known the pain of unpredictable, aggressive episodes and felt the need to minimize any problems of my own and “step up” as the responsible one. Furthermore, I have known the frustration of having Willie's issues be the focal point of family life. 

On the other hand, however, I concur with the siblings quoted in the feature who say that being a brother or sister to an individual with special needs or autism has increased their levels of compassion, sensitivity, and maturity. Thanks to being Willie's older sister, I possessed an immediate advantage at my first job at L'Arche Greater Washington, DC. When I served as a direct-care worker at L'Arche, I found myself giving thanks for all my brother had taught me: How to pay attention to seemingly-minor environmental irritations and thereby avoid potential meltdowns; how to follow a routine and also incorporate necessary deviations; how to respond with a calm presence and demeanor in the face of another person's anger. When I worked as a full-time caregiver at L'Arche, I found it natural to remember snacks and lunch bags, check the gas gauge the night before, and start my routines right on time. The list goes on and on; I knew how to offer support in difficult situations not in spite of my brother, but because of him. And I knew better than to judge based on first impressions; in fact, some of the people I found the most intimidating at first became my closest friends. Moreover, in living the lessons my brother taught me, I gained a greater acceptance of him as he is, not as I might wish he would be.