Kathleen Somers is the author of the new memoir Barely Visible: Mothering a Son Through His Misunderstood Asperger Syndrome. She is a freelance graphic designer and copywriter, and she lives in Berwyn, Pennsylvania.
Q: Why did you decide to write this memoir?
A: My primary reason for wanting to write this memoir
is to raise awareness, not simply about autism—there’s already plenty of
that—but about the unique difficulties that accompany the varying degrees and
subtleties of it.
When my son Jack was formally diagnosed in 2007, he
was diagnosed with what was then called Asperger syndrome, but today is
considered high functioning autism. Because he is high functioning, he gives
off the appearance of being able to navigate the ups and downs of daily life.
And to a large degree, he can. He just recently earned
a college degree. He drives a car, has a job, and is even beginning to make his
way in the competitive world of modeling. He appears like every other young
adult starting their journey toward independence.
But we all know that appearances can be deceiving.
Jack appears one way on the surface, yet beneath it, he is a completely
different person that operates in ways that are foreign to most of us. In any
given moment, it’s difficult to pinpoint and define what makes him different,
or to make sense of a situation gone wrong.
Because Jack appears like everyone else, it’s hard to
believe that he’s not. His limitations 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 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 always easily found, and the impact of that
extends beyond just the world’s perception of Jack.
It also impacts his perception of himself. He carries
a label around with him that he struggles to accept because it implies that he
is less than or limited, and that, of course, is incredibly destructive to his
self-esteem and confidence.
My parenting journey with Jack from toddler to
adolescent to young man has been filled with struggles and questioning.
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?!
I have been walking a very fine line for the last 17
years because of it, trying to balance all the unknowns, and making every
mistake possible. I feel an obligation to share that with other parents that
are on the same path we’ve already traveled.
Yes, there are far more resources available to parents
today, but medical and educational resources aren’t always enough. There is
immense value in connecting with someone else who has been in your shoes,
feeling their support, and knowing that you are not alone.
My hope is that writing this book will help parents of
children with high functioning autism to understand not only their child but
also their own feelings and to maintain their sanity.
I’m hoping it will provide necessary perspective—that
high functioning autism isn’t necessarily better or easier. It comes with its
own set of challenges that can be just as difficult to surmount.
By sharing my mistakes, maybe a parent will be
empowered to get vocal about their child’s behavior, encouraged to swallow the
embarrassment and stop apologizing to the world, and recognize that a path
forward is possible.
Secondarily, I have never had interest in social
media, and finding ways to advocate and create change does not come easily to
me. Having written this book is my way of contributing to the conversation and
trying to make sense of it all.
Q: What do you see as some of the most common
perceptions and misconceptions about Asperger syndrome?
A: People with Asperger syndrome are often perceived
as being “odd” and a bit detached from reality. Because their interpretation of
the world is so literal, there response is as well.
The rest of us have learned the subtle dance of social
interaction which involves a bit of role playing and pretense. To the
neurotypical, having to don that mask every day is a given.
It’s the complete opposite for the person with
Asperger’s. Their inability to go along with the act is why others see them as
odd. In truth, the authenticity of the Aspie’s response to life and manner of
navigating it is far more worthy of admiration. It’s 100 percent authentic.
I think the biggest misconception is that people with
Asperger syndrome are hidden geniuses. That’s not true. Asperger syndrome is a
brain difference, meaning the way in which information is processed is
different than the neurotypical way.
That manner of processing has its biggest impact on
social interaction and communication and isn’t any indication of intelligence.
People with Asperger’s exhibit a range of intelligence, from average IQ to
highly intelligent.
Aspies often focus intensely on one particular
interest because it provides routine and a sense of comfort, helping to reduce
anxiety. Because they get hyper-focused, they often come off as having deep
knowledge or expertise in that particular area, leading others to believe that
they are more intelligent.
Q: The writer Diana Kupershmit called the book a “moving, beautifully rendered account of a mother’s journey accepting her son’s
disability, and the ultimate triumph of the heart, where love wins and letting
go begins.” What do you think of that description?
A: I love Diana’s choice of words, and I think her
description is spot on. Every parent knows that, at some point, we need to let
our children go. We need to allow them the freedom to fail, so they can learn,
grow and hopefully succeed on their own.
When your child is disabled though, the idea of
letting them go is unthinkable. You’ve devoted your entire self to their
protection and the thought of forcing them to face this unforgiving world on
their own is unacceptable. It brings on an overwhelming sense that you’re
abandoning them.
But allowing Jack the opportunity to make the most of
his abilities is essential to his development. As painful as it is, I need to
step back and allow him to figure the world out on his own, try his hand at
different things, make mistakes, and yes, fall hard.
I also need to stop being the buffer between him and
the rest of the world. He will never develop an understanding of how to react
to various situations and interact properly with others if I’m always stepping
in to mitigate situations gone wrong.
Not only am I letting go of him but I’m also letting
go of my years of embarrassment, my explaining away of every bad behavior, and
my constant need to apologize to the world. I’ve stopped beating myself up for
all the mistakes I’ve made—every parent makes them—and I’ve learned to love not
just Jack, but myself in the process.
Q: What impact did it have on you to write the book,
and what do you hope readers take away from it?
A: The idea of writing this book about my only child
and our discovery of his disability was daunting. I remember thinking that I
was writing aimlessly with no forward path. I often questioned why I was doing
it and whether I was wasting my time.
I’m not an authority; I’m anything but. I’ve made
every mistake possible and I’m still making them.
But every time I’ve reflected on all that Jack has
experienced, all that we’ve been through as a family, and the uniquely
incredible person he has become, I’ve realized that telling our story wasn’t
something I needed to do for myself, but for all those other families dealing
with similar circumstances who don’t know what to expect or how to handle it.
The book was not written in any linear fashion.
Nothing about Jack’s growth and development has ever been linear. Just when I’m
able to connect all the dots and finally make sense of a given moment in time,
he does something to remind me that there are still loose ends and unresolved
issues from some earlier chapter of his life.
I had made countless strings of notes along the way, a
piece here, a thought there. Each note I made seemed to make perfect sense at
the time, but when I would return to them later, they all appeared as senseless
as Jack’s behavior.
Needing to organize them in some logical fashion forced
me to articulate Jack in his entirety. It forced me to chew, swallow, and
digest all of life with Jack, and that was downright nauseating at times. But
it was necessary.
I have spent years working on this book, not
continuously, but if I wasn’t writing, it was still top of mind. That means
I’ve spent years living in the past, trying to conjure up memories, and I
question if that’s been harmful.
By living in the past, has my perspective on Jack as a
young adult been skewed? Have I put too much emphasis on “what was” when “what
is” is now different? His disability remains—it won’t ever disappear—but the
way in which he handles things has changed.
Or has that past perspective been helpful? Delving
deeply into Jack’s childhood, dissecting all his responses, and questioning why
he behaved the ways he did may have enabled me to see the adult Jack more
clearly and better guide him.
It may seem cliché, but I hope the takeaway is that we
are ALL human—parents and children, neurodivergents and neurotypicals alike.
No matter how much you love your child, it’s okay to
not like them at times, regardless of their disability. It’s okay to want to
run and hide and hope it all just disappears. Sometimes it’s necessary to give
in to the pressure so you can start fresh and regain the strength to go another
day. And for god’s sake, have a sense of humor about it all. It helps!
Q: What are you working on now?
A: I always have several novel ideas in the works, but
I have struggled to fully commit to any of them. Self-doubt always gets in the
way, and there are so many amazing books out there bringing such clever ideas
to life, that it’s intimidating. I’m a perfectionist, so of course I want to
write something that stands out, and I won’t except anything less from myself.
The old adage, “write what you know,” though, has been
helpful in getting me further with one idea than any other. What I know best is
life with my son, so I’ve decided to focus on a story that has evolved from
experiences with him, but is, of course, completely fictional.
I am still in the very early stages. At this point it
is nothing more than a developing outline and a growing pile of notes. I’m
hoping I’ll have more time to bring it to life once my memoir is released and
life begins to settle down a bit.
Q: Anything else we should know?
A: People believe that Asperger syndrome is an
obsolete diagnosis. Yes, it’s true that in 2013, with the publication of the
American Psychiatric Association’s Diagnostic and Statistical Manual of Mental
Disorders, use of the term was abandoned, and the symptoms are now included
within autism spectrum disorder.
But the severity and presentation of autistic symptoms
can vary widely from person to person. A young adult like Jack, who has a
college degree, a job, and drives a car, is significantly different than the
child who is non-verbal and requires life-long assistance.
Yet he is not quite the same as a neurotypical
24-year-old. He interprets and responds to the world differently, many times in
ways that are difficult to understand and embrace.
A term like Asperger syndrome is still needed—a phrase
to define the gray space between being visibly autistic and being completely
neurotypical—one that creates a degree of separation from autism spectrum
disorder. In a perfect world though, the lines would be blurred completely, and
labels would disappear altogether.
--Interview with Deborah Kalb
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