Autism is a spectrum disorder, we all know that, but sometimes, even as a parent of a child on that spectrum, it is hard to understand those that live on the other end.
As the mother of Jack, a young man mainstreamed in school and hopefully destined for independence, I don’t have much more deep knowledge of what it is like to parent a more severely affected child than parents of neurotypical children.
In One of Us: A Family’s Life with Autism, Mark Osteen shares the story of his son, Cameron, a young man on the severe end of the spectrum. Reading the struggle of Cam and his parents, I was reminded of a comment someone left on a column here several months ago.
“There is autism, and then there is autism,” this commenter wrote. “Families affected by autism deal with struggles that families affected by autism do not. Families with autism have struggles of their own, no joke, it’s a tough road for everybody. But for families with autism, homework struggles and housecleaning come pretty far down the list, and we couldn’t possibly explain to the autism community how incredibly hard it is for those of us affected by autism.”
That comment gave me pause in much the same way Osteen’s book gave me pause and, in fact, took my breath away. Reading about Cam and his intense issues brought the reality of that end of the spectrum home in a very real way. My son Jack and Cam are affected by the same issues, but the intensity with which they are impacted is vastly different.
Osteen’s brutally honest memoir vividly describes life with a child who cannot express himself verbally and whose birth radically changed every aspect of his parents’ lives. Reading about Cam’s struggles with therapies, aggression, medications, various stims and, ultimately, his move to a residential home was illuminating, but almost uncomfortable to read at times because the anguish on the pages was so raw.
Osteen describes his family’s life as becoming autistic itself; Cam’s issues isolated them so far that they lived in a world almost solely filled with autism.
Osteen struggled with both the practical realities of raising a severely disabled child, but as a professor, his entire world view was called into question as well: “Was my whole philosophy of life—that hard work conquers all—a fantasy? And what about my other prized faith, the one I’d clung to tenaciously throughout my life, the belief that intelligence is the truest measure of human value?” Osteen writes. “Either [Cam] was worthless or my life had been based on a lie.”
Yet as Cam’s isolation within himself led to the family’s isolation from the rest of the world, typical life fell away and the Osteens’ marriage suffered, a powerful message emerged: Cam was a loved child and is now a loved young man. His presence in the Osteen home, while difficult, was welcomed and wanted.
To follow the Osteens’ journey is eye-opening and poignant. Osteen leaves us at the end with declarations of love and acceptance of his son: “To [my wife and I] Cam is just Cam, a person with a disability, but above all a person we love.
Much like our children are different but connected, my views on autism are different than Osteen’s, yet stem from common ground. As autism parents, we are bonded, and I see his point of view as extremely valuable. One of Us showed me a startling portrait of what life can be like for some families of children with autism.
I am grateful for that glimpse, and I am grateful that Osteen can speak for his child. As he writes, “Amidst all the noisy arguments about cures and causes, the best-sellers and blogs, the Camerons of the world are often forgotten. People like Cam don’t create websites, maintain blogs, give interviews on talk shows, form groups, or self-advocate. Instead they get ignored. That’s why I’ve written this book.” Just as I try to help my son develop his own voice, Mark Osteen is amplifying his son’s voice as much as he can.
I can never really know what it is like to live on Cam’s end of the spectrum, but One of Us is such a valuable narrative for those of us, both in neurotypical and autistic families, to see how another side lives.