The Autism Life Through the Eyes of A Parent
By Alan Winnikoff
When I take my son to programs for autistic kids, I often hear other parents quoting a particular statistic: 70% of special needs couples break up. Unfortunately, I’ve never been able to verify this. It might be nothing more than an urban legend. After all, plenty of special needs couples hang together despite the tremendous strain raising an autistic child puts on a marriage.
Understandably, we are quick to characterize walking away from a special needs marriage as an act of supreme selfishness. After all, when one parent exits, the other is left to carry on. And yet, it’s not hard to see how one spouse might decide the pressure is too much, the sacrifices too great. The person doing the leaving may rationalize their decision as nothing less than a matter of survival. We only have one life, after all.
It’s in every parent’s DNA to push to exhaustion during the first months and years of their child’s life. They do it with the understanding that that little person will eventually become less dependent. Parents’ lives change when they can start sleeping longer hours when they no longer need to take their child to the bathroom or dress them or bathe them. With a severely autistic child, however, that day may never arrive. It can feel like raising a perpetual toddler.
Pushing on like this year after year is not how parents are programmed. As a result, it can be challenging for these couples to find time for each other. And, sometimes, the marriage cracks.
As a fiction writer, I felt I could lend my voice to parents of neurodiverse kids, parents who are likely feeling overwhelmed and isolated by this relentless pressure. We go through so much that neurotypical parents never see. It can feel like such a lonely journey. I wanted to bring to light the challenges we face from the inside.
My new novel, Not Sleeping, explores a special needs marriage that collapses under the weight of managing this problematic dynamic. The story is not a polemic about autism. Instead, it’s about a separated couple doing their best to live their lives. Because, while a neurodiverse child impacts a parent’s life in countless ways, it doesn’t define all that we are. Our lives don’t stop. We still have careers and romances. We still have dreams.
Hopefully, Not Sleeping will help ASD parents see that they are not alone – others are going through very similar experiences. And I also hope that the book will help neurotypical parents understand us a little better.
I tried hard to avoid passing judgment on my characters. At times they rise to meet the moment. Other times, they appear deeply flawed. Parents of neuro-diverse children have moments of incredible strength and determination. They also have doubt and weakness, and regrets. They are no different than anyone else, they are human.
Alan Winnikoff is the founding partner of a New York City public relations firm. He lives in the Hudson Valley with his wife, two sons, and their autism service dog, Cedar. Not Sleeping is his second novel.
For more information: https://www.crowsnestbooks.com/product/not-sleeping/