Searching for Clarity in a Puzzling Gray Space

By Kathleen Somers

For as long as I can remember, I’ve loved to write and had often fantasized about writing a book, though I never expected that I would one day do it. I have a drawer full of binders with children’s stories I had started over the years, bits and pieces of potential novels, strings of ideas that I was never quite able to knit together. The words themselves come easily. Crafting colorful scenes and interesting characters that no one else yet knows elicits the same level of joy as setting off on my bike on a sunny afternoon with no clock telling me when to return. Getting from point A to point B though, being able to construct a tale that picks the reader up and carries them off to a destination that will render them speechless, is another story (no pun intended). That’s a skill I have always lacked. The idea of anything being open-ended is daunting and stirs panic.

It wasn’t until I had a child—and found I was following a path I hadn’t willingly chosen—that a storyline presented itself. Without my knowing, as we faced one obstacle after another in raising our son, the points between A and B were plotting themselves. At some point, I began taking note of each one and eventually there were enough, all representing tough decisions made or painful lessons learned, that I could look back and see where we had been. I recognized that the parenting path we were on was far bumpier than most experience, and I knew then that the map I was creating would be of value to another parent that was on the same challenging journey. 

My story begins with a pregnancy that never should have been. A routine ultrasound at 5 1/2 months revealed that my first child had a profound disability that would result in severe retardation and possibly death, and my husband and I were faced with the incredibly difficult decision of terminating the pregnancy. Months later, after becoming pregnant a second time, I was elated—yet haunted by the fear that lightning would strike twice. What if we discovered that our second child was disabled as well? 

When my son Jack was born, by all accounts he was a happy, healthy baby. It wasn’t until he was two that we began to question if he was different in some way. In 2007, at the age of six, he was formally diagnosed with Asperger syndrome, a term that’s no longer used as the symptoms have been rolled into autism spectrum disorder. In short, he is high functioning. 

At the time of his diagnosis, knowledge of Asperger syndrome was still in its infancy. There were resources available, but they were clinical—and there were almost no books out there written by parents. Nothing saying it like it is. None of the therapists whose help we enlisted seemed to have any understanding of what was going on with Jack or how to help him. It was frustrating. It led to us just leaving him be, burying our heads in the sand—and what a mistake that was. If we had been able to step inside someone else’s world, someone that was experiencing the same challenges, it would have made all the difference.

Today, there are countless books available written by parents of autistic children, but most are about children functioning at a much lower level than Jack. I’ve realized that there is a need to create awareness of the fact that being on the high functioning end of the spectrum is not necessarily a blessing. If anything, it’s a curse. It has done nothing but work against Jack since day one. It enables him to disguise his shortcomings and fly just low enough below the radar to squeak by without being detected, and he misses out on the opportunities he deserves because of it.

He’s trapped halfway between assisted and accomplished. No one offers him the assistance he needs because no one can see that he needs it, and no one understands why he can’t accomplish more because they can’t see that he’s trapped in place by something he can’t control. It’s an unfair gray space that creates a unique set of problems whose answers aren’t easily found. 

In any given moment, it’s tough to pinpoint what makes Jack different, or to make sense of a situation gone wrong. Because he appears like everyone else, it’s hard to believe that he’s not. His limitations, issues, oddities—whatever you want to call them—can all be felt.

It’s the tension at a restaurant table when his food is not what he expected, envisioned, or ordered, and he refuses to eat it. It’s the irritability he experiences when the car is too hot or the sun too strong. It’s the embarrassment I feel when he comes off as being rude or disruptive. It can be heard in the endless strings of babble that pour from his mouth, or the complete lack of expression in every awkward “thank you,” because that’s the only social rule that ever stuck.

But rarely can it be seen. Jack is an attractive, well-proportioned young man. He’s six-foot-two with blue eyes, straight teeth, and a heart-melting stray dimple on his left cheek. He dresses like other kids, drives a car and has a college degree. On the surface, you don’t see anything out of the ordinary. He looks like every other young adult and wants to be seen as such, yet a label has been attached to him which immediately implies he is less than or limited in some way.

In raising my son, I wish I had sought out more resources and better educated myself about Asperger syndrome. I wish I had possessed the mental and emotional strength to tell the world that he is on the spectrum. I never wanted him to be labeled, and in turn, discounted from sports or ostracized by kids at school, yet all those things happened anyway.

If I had taken ownership of his disability right from the start, he likely would have grown up accepting it too and it would be as natural to him as the fact that he loves baseball. He would have had the freedom to be himself without needing to hide behind explanations or apologies. He deserves to be seen in his entirety, as does every other child, neurodiverse or not, and I feel I have an obligation to my son to share the challenges we faced as he grew from toddler to adolescent and now young man, so the world can manage its expectations, be more understanding of his behavior, and be more receptive to learning what makes him and others like him tick.

Hindsight is twenty-twenty when it comes to parenting, especially when you’re parenting a child with autism. If only I had known then a fraction of what I know now. Even if “then” didn’t extend any further back than last week, I would still be ahead of the game. If only I knew last week what I know today, yesterday’s upset might have been preventable.

And if only I knew 24 years ago what I know today, I would have done almost everything differently. There still would have been tremendous hurdles, but I may have been able to minimize their negative impact. I could have promoted understanding—and prevented judgment and discrimination. My hope is that having finally connected the points between A and B (especially those that took us off on dark, intimidating detours) and sharing our story will provide other parents with the perspective I’ve gained from having made every mistake you could possibly make. 

I firmly believe that the experience of carrying my first baby, loving her fiercely and having no choice but to give her up, was a means of prepping me for the challenge I was truly meant to have in this life—raising a child whose disability is barely visible. Trust me when I say, it has taught me more than any other life experience possibly could, and I feel that’s a story worth sharing.

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Kathleen Somers, a debut author, holds a Bachelor of Fine Arts from Temple University’s Tyler School of Art, and works as a freelance graphic designer and copywriter. She is a passionate observer of humanity who believes in the power of connection that comes from each of us sharing our individual stories, and the importance of authenticity when doing it. Having spent 24 years guiding her son through a disability most can’t see has not made her an authority on the topic. It’s having been the student to all that he has taught her that has brought her closer than anything ever will. When Kathleen isn’t busy with her career as a creative, she is out on her bike finding new roads to explore, or spending time with her son, opening his eyes to everything the world has to offer, both big and small. She lives with her family in the suburbs of Philadelphia.

Barely Visible: Mothering a Son Through His Misunderstood Autism

For any parent who has ever struggled with a child’s difficult or peculiar behavior, this candid and compelling memoir about raising a child on the spectrum offers reassurance that you are not alone—and a path forward is possible.

Although Asperger syndrome is considered a form of autism, few people are aware of its existence and even fewer can recognize it. Barely Visible is not a series of helpful hints and best practices, or a heroic tale of a champion parent. It is a relatable story of one mother’s struggle with the gray space between her son appearing normal on the surface and being not quite normal beneath it.

Walking that fine line between when to say something and when to bite your tongue, hoping your child can handle life on his own, requires tremendous discernment and energy. How do you convince others to “cut your child some slack” when the kid they see looks like every other kid they know? How do you explain away behavior that, at face value, looks like the result of bad parenting? And how do you prevent others from discriminating against your child once you do disclose their disability?

Chronicling a journey spanning twenty-three years, Barely Visible is a mother’s admission of guilt for choosing to ignore her son’s diagnosis initially; acceptance of defeat, for rarely knowing the right thing to do; and an acknowledgment of love—not only for her son, but for herself.

Tags: featured, women writers

Category: On Writing