By Julie Schwartz
Having and losing a son with an Autism Spectrum Disorder (ASD) taught me that perspective is everything; a priceless point of view for which I paid dearly. It made our family who we are and impacted our entire lives.
Having Joel formed us. Within the context of our “normal” familial roles, he called on my husband Larry, Joel’s brother Jonathan, and me to become creative problem solvers, advocates, interpreters, teachers, supporters, defenders, explainers, and listeners.
Losing Joel molded us. His loss tormented us with a tragedy outside the natural order of things and challenged us to figure out how to live full lives in his honour, rather than lesser lives in deference to his death.
If fate is what happens to you, and destiny is what you make of your fate, we feel Joel’s and our struggle has made us better for our efforts…far from perfect, but better versions of ourselves. We wrestled long and hard with grief and mourning until we were finally able to see a tiny light; that point at which you are granted the privilege to begin to transition from grieving to remembering.
I have learned that Joel’s life and his loss are bound up in a knapsack that I can never put down, but that I can carry any number of different ways.
I wrote Since Joel several years after he died—perhaps in an effort to inscribe him on my heart. The process was humbling, exhausting, painful, and inspiring. In a way, I think it offered me an outlet for thinking about him all the time, and maybe even to get to know him better.
Like many people who have encountered ASD, I remain fascinated, exasperated, and confused by it. If you Google the term “Autism Spectrum Disorder,” you are likely to remain confounded. Most ironic is that, while it is classified as a “communication disorder,” there is little language that captures what it is. While common characteristics/symptoms are described—obsessive interests, perseveration, repetitive behaviours, concrete/literal thinking, inability to interpret social nuances, failure to maintain eye contact—ASD is interchangeably referred to as a disorder, delay, disability, and/or a condition. That it is described in the Diagnostic and Statistical Manual of Mental Disorders by the American Psychiatric Association also seems to suggest that it is a disease at the end of a diagnosis.
Whatever we call the constellation of characteristics ASD presents, and however we label it in our search for understanding, it is crucial that we be mindful that in the midst of all our questions and confusion are the unique and very human beings who inhabit ASD. People who deserve respect, consideration, dignity, and community inclusion.
Photos of Joel and his family courtesy of Julie Schwartz.
Now a dual citizen, Julie Schwartz was born in the City of Brotherly Love. There she met a Canadian, and forty years ago moved to Toronto and learned to spell her married name with a "zed". Julie earned a Masters and Bachelor of Arts from the University of Pennsylvania. Retired from her career in consumer research, Julie actively pursues outdoor adventures, continuing education and volunteer opportunities.