It’s been two-and-a-half years since I last did one of these ASD (Autism Spectrum Disorder) Book Reviews. Makes it look like I’ve lost interest in this book genre.
Well, that couldn’t be further from the truth. In fact, I’ve been swamped by the array of ASD books I just don’t know what to share next. Recently, the ASD books I’ve seen cover different genres of writing, but all share the common theme of ASD and disability.
But, as I once did with another book review earlier this year, I best come clean that I may not have read from cover to cover all the ASD books I’m about to review here and in upcoming posts.
Rest assured however that, just as I eventually did finish reading that book I audaciously reviewed (and I even bought my own copy of it) while barely halfway through reading it, I intend to finish the ASD books I recently borrowed in the near future too. I just can’t promise you I’ll scrutinize every syllable. Such is the reality of reading in this age of endless distractions. Unless it’s fiction (which one would be hard-pressed to skim and still think they can convince others they understood the story fully), non-fiction and creative non-fiction books do allow readers some “leeway” to grasp the major points, without reading every line on every page.
So, suffice it to say I’ll read enough so I won’t come across as a fake book reviewer. At least I hope I won’t come across so by the time this post ends!
Ready?
Then let’s resume my ASD Book Review series again, with a book written in my favorite genre: a memoir.
“I Have Been Buried Under Years of Dust.” A Memoir of Autism & Hope (2021) by Valerie Gilpeer & Emily Grodin
Synopsis
It’s hard to see a title like that on the cover of a book and not be drawn to pick it off the shelf, flip through the pages, and be bowled over by what’s inside. (Then again, I have a soft spot for memoirs since I’m still in the throes of writing one myself!)
This book is about Emily Grodin and her parents, and their autism journey. Emily’s a young lady from America in her late 20s, but when she was little, she was diagnosed with the kind of autism characterized by nonverbal communication. This book is about how, after seemingly countless years of screaming and meltdowns, she finally found her voice in her 20s.
And some of the first words that emerged from Emily became the title of this memoir. A title that basically summarises the years of frustration Emily went through, living in silence and being misunderstood.
Fatigue & Resignation
I don’t know what raising a nonverbal autistic child is like (my 12-year-old boy often talks non-stop). But I will never forget one thing.
On many mornings as I drove my son to his special school for students with mild to moderate ASD (Autism Spectrum Disorder), we would see one of his former classmates on the sidewalk headed for school. This boy (let’s call him D) was nonverbal.
D would be accompanied by either his mom or his dad as they walked silently towards the school gate. And I will always remember his dad’s eyes when he happened to look our way.
His eyes were almost bloodshot. They communicated utter fatigue and a sorrowful resignation that would tug at the heartstrings of any caregiver of kids with special needs, including mine. I understand that in a way parents of, what senior lecturer and researcher Dr Luke Beardon calls, the “predominant neurotype” (the neurotypical) kids, won’t.
Paradoxically, I also don’t understand. After all, my kid isn’t nonverbal. Though he certainly has his own set of challenges (which of course becomes mine too as I raise him).
Key Takeaways
For many parents new to special needs, this memoir by Emily and her mom helps shed much light on the realities of caring for nonverbal autistic kids. It’s a tough road and I appreciate how both the main caregiver Valerie (the mom) and her child Emily took turns on the pages to record their emotional roller-coaster journey toward Emily’s eventual breakout from the world of silence she’s lived in for much of her life.
Tuck in between details of their daily lives are many nuggets of helpful information on Emily’s special needs diagnosis and intervention methods. Both Valerie and Emily challenged the efficacy of different industry-wide intervention treatments like ABA or Applied Behavioural Analysis, and FC or Facilitated Communication. (I won’t go into details of these here as I’m no expert)
Ultimately, what I took away from everything I’ve read so far in this book are a couple of hard-won truths:
“Children need to know what’s expected of them.”
“…be open-minded when you meet someone on the autism spectrum…there is more to them than you can see.”
These seem simple enough on the surface; in reality, they are anything but!
Understanding Autism Is A Winding, Never-Ending Journey
“Children need to know what’s expected of them.”
In the past 12 years, I’ve lost count of how many times I’ve flown into a rage with my son for something he did or didn’t do. Like finishing his food or tidying up after play. But most of the time, he just didn’t realize that his concept of mealtime and “tidy” weren’t the same as mine. All that was needed was for me to spell out what I expected slowly, using words he understood. Even then, there’s no guarantee he’ll comply. But at least, the relationship between us needn’t end up in a puddle of tears (his and mine!).
“…be open-minded when you meet someone on the autism spectrum…there is more to them than you can see.”
In more recent times, I’ve also come to recognize that I’ve yet to truly understand my son. To see beyond his ASD; that he’s capable of being more than he currently shows. This is despite the fact I’ve been his primary caregiver these past five years when I became a SAHD (Stay-At-Home-Dad)
Throughout the book where it’s Emily’s voice (mom and daughter are co-authors), you can sense her frustration with people who treat her like she’s some useless, incompetent invalid. And while I’ll like to believe I’m most certainly not that callous with my son, can I say for sure I’m not at times capable of discriminating against my own flesh and blood?
Can I say for sure I don’t treat him at times like he’s not going to get anything done right?
Seek First To Understand
So much of what Emily went through growing up might never have had to happen. If only the adults around her, including her parents, could really listen and understand her.
Which again, is simple in theory, difficult in practice. Not for lack of trying, as all special needs caregivers strive to do.
Every.
Single.
Day.
It’s a long, winding and never-ending journey to listen and understand. It often takes 10 or 20 years, maybe a lifetime.
This memoir reminds us that we as parents and caregivers mustn’t give up on our special kids.
But it must always begin from a place of genuinely seeking to understand autism. And to trust and hope. The very themes that anchor this well-written memoir which I highly recommend.
Sounds like a book I have to read – my son is six and speaks very little (like a 2-y-old on good days). Thanks so much for sharing – and keep’em coming!