Guest Blog Post for The Autism Dad

By Alan Winnikoff
Author of the novel “Not Sleeping”

I’ve often heard autism parents quote a particular statistic– 70% of special needs couples break up. I’ve never been able to verify this – it might be more urban legend than reality. After all, on the flip side, I know plenty of special needs couples who are hanging together, finding a way to make their relationship work, keeping their connection going, in spite of the pressures.

Still, it’s no secret that raising an autistic child puts tremendous strain on a marriage. if this 70% number did turn out to be accurate, would it really be all that surprising?

We are genetically programmed – it’s in our DNA – to push ourselves to exhaustion during the first months and years of our child’s life. We are totally immersed in attending to our baby’s every need. But we also know that, as our child grows up, that little person will eventually become less dependent. A neuro-typical child by nature craves autonomy, even at an early age. It doesn’t make parenting any easier, of course. The road ahead is still enormously long and difficult. But it does shift things. Our lives change when we can start sleeping longer hours, when we no longer need to take our kid to the bathroom or dress them or bathe them.

It’s normal to look forward to the day when we can stop changing diapers. But with a severely autistic child, that day may never arrive. Having a neuro-diverse child can feel like raising a perpetual toddler. The minute by minute, detailed care never ends.

Pushing on like this, year after year, is unnatural. It’s not how we’re programmed. We are stretched to the limit. When you are living this kind of life, it’s hard not to neglect your spouse. The connection severs. The marriage cracks. Time for each other, to say nothing of romance, is often an afterthought. And, sometimes, someone in the marriage decides they can’t take it anymore.

My new novel “Not Sleeping,” explores a special needs marriage that collapses under the weight of this reality. What happens when one of the spouses simply decides the pressure is too much, too relentless, the sacrifices too great?

It’s easy 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 by themselves. The person doing the leaving, however, may view it differently. They may rationalize their decision as nothing less than a matter of survival. We only have one life, after all.

It was my goal in writing “Not Sleeping” to avoid passing judgment on my characters. I have tried to show their lives from all sides. At times they rise to meet the moment. Other times, they appear deeply flawed. I have also tried to show that, while a neuro-diverse child impacts your life in countless ways, it doesn’t define all that you are. You still go on living your life. You are still you. You still seek romance. You still have dreams.

I wanted to tell a story that is relatable and recognizable. I hope special needs parents will see something of themselves in the book. We have moments of incredible strength and determination. We also have moments of doubt and weakness and regrets. We are no different than anyone else. We are human.