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—raising a child whose disability is barely visible. 

Kathleen Somers – 1 April 2025

The Back Flap

Hindsight is 20/20 when it comes to raising a child on the spectrum. If only I had known then what I know now. Even if “then” didn’t extend any further back than last week, I would still be ahead of the game.

About the book

What is the book about?

My story begins with a pregnancy that never should have been. A routine ultrasound at 5 1/2 months revealed that our 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. 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’s high functioning.

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—raising a child whose disability is barely visible. Being on the high functioning end of the spectrum has done nothing but work against him 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 scenario that creates a unique set of problems whose answers aren’t always easily found.

Barely Visible is not a heroic tale of a champion parent. It’s a very candid memoir of my struggle with the gray space between my son appearing one way on the surface—yet being quite different 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 foresight 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? How do you prevent others from discriminating against your child once you do disclose their disability? And how on earth do you do any or all of that while your marriage is falling apart, and the rest of life is swirling around you?!

Barely Visible details my journey of coming to awareness of my son’s disability as well as learning how to manage the problems that accompany one which is so often difficult to pinpoint and define. It is an admission of guilt, for choosing to ignore my son’s diagnosis initially; an acceptance of defeat, for rarely knowing the right thing to do; and an acknowledgment of love—not only for my son, but also for myself.

When did you start writing the book?

Throughout my son’s childhood, I had been compiling bits and pieces. Maybe it was something unusual he had done, something funny he had said, or expressions of pure confusion about his behavior. It wasn’t until 2015, that I began making serious notes. I started writing in earnest in 2019, though it was off and on for many years as I wrote only when I had time. I finally decided to take a leave of absence from work during the summer of 2023 to finish it.

How long did it take you to write it?

In total, 9 years.

Where did you get the idea from?

Daily life! My/our journey was so difficult at times, unbelievably comical at others, that I couldn’t help but compile the details of raising my son into this memoir. Also, in 2007 when my son was diagnosed, the label of Asperger syndrome was in its infancy. No one seemed to know what it was. There were resources available, but they were all very clinical. There was nothing 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 him 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 thing we were—it would have made all the difference. I want to share my story with other parents not because I have any answers, but because I felt very alone throughout our journey. I didn’t know what to expect at any stage and I made every mistake you could possibly make along the way.

Were there any parts of the book where you struggled?

The stories are endless. The biggest struggle I had was determining which to include and which should be left out. Because the book spans 23 years, I needed to choose those stories that clearly illustrate my son’s limitations and challenges, how they impact him and everyone around him, as well as who he is as a person. Those stories were not necessarily the funniest or most interesting. Tying them all together and doing it in such a way that would keep the reader interested was a definite challenge.

What came easily?

The emotion. If I could write a book that does nothing more than describe how I feel, what I’m thinking, what I hope for, what I wish I could change—I would be in heaven. That all comes so easily. So much so, that I become overly wordy. I can’t stop finding different ways to describe what I’m experiencing emotionally.

Are your characters entirely fictitious or have you borrowed from real world people you know?

All the characters are 100% real, though names have been changed for the sake of privacy.

We all know how important it is for writers to read. Are there any particular authors that have influenced how you write and, if so, how have they influenced you?

One author whom I have the highest respect for is Joan Didion. Her ability to translate thoughts and emotion into words and have them paint uniquely colorful, revealing pictures is worthy of so much admiration. Her words pull you into the moments of her life in ways no one else seems to match and I have always felt that she existed on a plane beyond that of the average person. I once read a New York Times article that defined Didion as “the epitome of effortless cool.” It’s a sentiment that totally resonates with me.

Do you have a target reader?

At a very high level, my target reader is any parent. A portion of my story is simply the trials and tribulations of parenting in general. My primary target, though, is any parent of a child on the spectrum, and even more specifically, parents of kids that are high functioning.

Today, there are far more books available that have been written by parents than there were when I was raising my son, but most seem to be about parenting children that are not as high functioning as my son has always been. Being high functioning has been his biggest curse. Appearing normal enables him to disguise his shortcomings. He’s able to 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 a unique set of circumstances that creates a unique set of problems whose answers aren’t always easily found. And that is a situation I think any parent of a high functioning autistic can relate to.

About Writing

Do you have a writing process? If so can you please describe it?

Every writer has a process, though that doesn’t necessarily mean it’s a good one. For as organized and detail oriented as I am in all other areas of my life, I should have a defined process, but no. I only write when the ideas, emotions, and thoughts are flowing. And that happens in waves. Some days I can’t get them to stop, and I write furiously. Other days—for months, even years—there’s simply nothing there. No matter how hard I try, I can’t find the right words or manage to string two sentences together, so I don’t force it.

Fortunately, I’m an avid cyclist and if the words are going to come, they come most easily when I’m riding because my mind is free. I always carry my cell phone so I can dictate notes to myself whenever I come to a stop. I would say two-thirds of my book was conceived and written while out on my bike. I have a binder full of emails sent to myself from the road. Some are no longer than a single sentence or a half-baked thought I didn’t want to forget, but all of them pieced together managed to build the full story.

Do you outline? If so, do you do so extensively or just chapter headings and a couple of sentences?

I never formally outlined the contents of my book. Initially, I was unsure of how to structure it, and I explored several different ways of presenting it. Given that it spans 23 years, and the fact that I am a novice writer (i.e. not skilled in various story-telling techniques), I opted to structure it chronologically. My main goal in sharing this story is to connect with, and hopefully help, another parent that’s feeling lost or frustrated. I worried that if I tried to get too clever in how I presented it, the most important points would be missed. So, I started grouping the thousands of notes I was making by age range and where my son was in his development (e.g. elementary or middle school versus college). The content then organized and outlined itself from there.

Do you edit as you go or wait until you’ve finished?

Professionally speaking, I waited until my manuscript was complete before having it edited. But I am a perfectionist, so I was editing on my own as I went. Feeling that each section was as complete as I could make it, enabled me to focus more clearly on writing the parts that hadn’t yet been finished.

Did you hire a professional editor?

I did have professional editing help very early on in my writing, but my writing was not yet structured enough, and I quickly realized it made most sense to wait until the manuscript was complete. Once it was done, I reached out to different editors to get an idea of process and cost. Simultaneously, I submitted the manuscript to She Writes Press. When they gave me the green light, I held off on hiring an editor because I knew it would be part of their process.

Do you listen to music while you write? If yes, what gets the fingers tapping?

Never. While I do believe that I’m a good writer, writing does not come easily to me. I need to focus 100% and music is too much of a distraction.

About Publishing

Did you submit your work to Agents?

I did submit my work to a few agents, but my efforts were short lived. I had known for a long time before finishing my manuscript that I wanted She Write Press to publish my book. I have read quite a few of their books and loved them all, and I wanted to be part of that group. I also knew that I didn’t want to go the route of a traditional publisher for fear of losing control. I’m an artist and I have a hard time having people tell me what my art, my craft, should look like and to whom it should appeal. An indie publisher would allow me to maintain control while providing the support I needed with the two things I know nothing about—sales and distribution. As soon as my manuscript was done, I sent it off to SWP and they responded within a few short weeks with the green light. Once I got that response, I gave up on the idea of having an agent.

What made you decide to go Indie, whether self-publishing or with an indie publisher? Was it a particular event or a gradual process?

As I was getting close to finishing my manuscript, I began educating myself about the book publishing process, thinking that maybe I could self-publish. I read books about self-publishing and consumed everything I could find online. I quickly realized that I would be biting off more than I could chew. I am not a natural salesperson nor am I good at asking for help. I need someone who has both the knowledge and connections to carry me through that process.

Did you get your book cover professionally done or did you do it yourself?

I designed my own cover. I’m a graphic designer with experience in book design, so I knew from the start it was something I wanted to do. Initially, I had planned on using a self-portrait that my son had done when he was in high school. It’s very abstract and a bit crazy, which suits him. But after making a sample book using that image, I realized that while I understood it and it had meaning for me, that meaning wouldn’t necessarily translate to the reader. The thought of having a stock image of an unknown boy on the cover of a story which is so intensely personal didn’t sit right with me, though. So, I began looking through all the thousands of photos I have of my son. The one I chose ended up being the perfect solution. I used it primarily because it hides my son’s face. Coincidentally, it was taken on a trip to the beach that became the focus of one of the book’s key chapters. So it’s the best of both worlds—a truthful, revealing image that doesn’t give away my son’s identity.

Do you have a marketing plan for the book or are you just winging it?

Although I have hired someone to help with marketing, it’s not going as well as I would like—and that has nothing at all to do with the help. A big piece of book marketing is use of social media, and I have very mixed feelings about that. Personally, I don’t want to put myself out there in that way. I have never been active on any platform, and I prefer to remain anonymous. But I do understand the value of social media when you’re trying to sell a book. The only problem is, if you don’t have an existing base of followers, you’re not going to build one in 6, 9 or even 12 months’ time. So, with very little of an online presence, I guess you could say I’m just winging it!

Any advice that you would like to give to other newbies considering becoming Indie authors?

Get out your wallet! I had no idea just how expensive this process would be. In all seriousness though, if you’re not afraid to roll up your sleeves, dive in, learn and do a lot of the heavy lifting, the Indie process can be very rewarding. You have greater control, and in my experience with She Writes Press, I’ve become part of a cohort of authors, all of whom are there to encourage, support and offer their friendship. It has been a great experience.

About You

Where did you grow up?

The suburbs of Philadelphia

Where do you live now?

One street away from the street on which I grew up. I moved away for twenty-some years, only to eventually find myself right back where I started.

What would you like readers to know about you?

My mother tells everyone that I was coloring within the lines when I was two. I’m certain she exaggerates, but I never envisioned being anything other than an artist. I’m happiest when I’m taking photographs, creating digital art, writing, or making jewelry—expressing myself in whatever way my soul wants and needs on any given day.

I’m also an avid cyclist. My dream trip would be to ride across the country with a camera strapped to my back and a journal under my arm. What a story that would be!

What are you working on now?

I am in the very beginning stages of a novel that, like my memoir, centers around my son. While some aspects of the story have evolved from real life experiences, the story itself is totally fictitious. Hopefully it won’t take me as long to write a novel as it did to write my memoir!

End of Interview:

For more from Kathleen Somers, visit her website.

Get your copy of Barely Visible from Amazon US.