I immediately felt a kinship with these first-time authors that extended beyond our shared passion (writing); religion (Judaism); residence (Los Angeles’s San Fernando Valley); and even two mutual Facebook friends. The connection is Autism spectrum disorder. My younger brother Sean has high-functioning autism, and with an Individualized Education Program (IEP) and my mother’s help, he, like Grodin, managed to graduate from high school, although in Sean’s case, it was just barely. Today, nearly two decades later, Sean even holds a job, drives, is personally responsible for his hygiene, makes or buys his own food, and keeps up with the news. But he was late to meet all of his developmental milestones, never had friends, and still doesn’t make eye contact or know how to read a room, though he does read the paper. And while he’s lived independently with the financial help of my parents in the past, he presently resides with my mom and her fiancé. (Not a judgment: Until a few years ago, my newly immigrated husband — a Canadian transplant — and I also lived with my mother, and we’re both neurotypical adults with master’s degrees.) Still, having Sean as my brother made me want to learn more about his condition, and I was instantly drawn into this powerful story that has already been endorsed by autism advocate Temple Grandin.
I learned that although it presents itself in a myriad of ways and across a broad spectrum, “autism is a motor/movement disorder that affects the timing and quality of movements, including those involved with communication”; that it is characterized by “neurological and sensory challenges”; and that it often includes “impairment to speech, social interaction, and eye contact […] problems with social, emotional, and communication skills […] [and] a different way of learning, paying attention, or reacting to things.”
I remember how, as a kid, my brother struggled to duplicate a push-up in his karate classes, no matter how many times his famed martial arts instructor Billy Blanks modeled one. After that, Mom signed him up for one-on-one lessons with our elementary school PE teacher, Coach Star. I’m not sure how much his push-ups have improved since then, but — to be fair — no one in my family is a natural mover. For example, in my one season in American Youth Soccer Organization (AYSO) playing for the Shooting Stars, I scored a single goal, only it was for the other team. Furthermore, I was always picked last in PE, yet Mom never gifted me private lessons with Coach Star. Either something bigger was going on with Sean, or my mother felt that athleticism — or something akin to it — was more important for her male child. I’ve come a long way since my AYSO days and now teach the movement modality Pilates for a living, but I still find myself with errant bruises from walking into the bed or my at-home Reformer. I’ve worked really hard at mastering coordination, often by faking it (perhaps I could have benefited from some PE coaching too!), and to this day, nothing makes me prouder than when people mistakenly believe I have a background in ballet.
While Sean found tasks requiring gross motor skills to be difficult — possibly exacerbated by our family’s unathletic genes — he likewise struggled to pay attention, which Gilpeer lists as another common characteristic for those with autism. It’s worth noting, however, that Sean simultaneously suffered from attention deficit/hyperactivity disorder (ADHD). One thing that could always hold his attention though: screens. He was fixated on video games, computers, and phones, and — despite having little hands with curled pinky fingers — he somehow mustered up the fine motor coordination to work deftly with all three, even if, as a baby, he’d struggled to individually pick up Cheerios when eating in his high chair. (His preferred method of manipulation was to draw them forward collectively in a swiping motion.) I learned from the book that with autism, there is interestingly “often comorbidity with medical illnesses like […] ADHD […] [and] nearly all medical conditions.” Sadly, Sean had a host of them from a congenital heart defect called patent ductus arteriosus (PDA) to microcephaly (a small head) to an equally tiny bladder, which left him wetting the bed into his late teens. My mom thinks it was the attention piece, and not a lack of intelligence, that was responsible for Sean’s challenges in school.
Grodin, meanwhile, is understandably hindered — in school and in life — by her lack of language. Her parents, both attorneys, sense that she’s bright and absorbing all that they expose her to — books, the arts, music, and even travel — but they have no tangible proof of this retention until one day, through facilitated communication (FC), their daughter is able to type out her thoughts and show them firsthand. Grodin puts it succinctly: “I am autistic, not brain-dead.” And she more than proves this by scoring a 97 percent on her English proficiency placement exam at Santa Monica College — known as “SMC” to us locals — to the mutual astonishment of administrators and her parents.
Grodin’s breakthrough happens in August 2016 when, at 25 years old and after every possible therapy, she finally learns to “express [herself] by typing on a keyboard […] with the assistance [of] a [trained] communication partner […] who could offer stability and make up for these movement and timing-based shortcomings” of hers — shortcomings that mom Valerie calls “Emily’s limitations” — a word that comes up repeatedly in the book. I used to hear that word a lot, too.
“Melissa, remember that Sean is limited,” my grandmother, a retired social worker, would whisper at the dinner table when Sean was out of earshot to excuse whatever behavior I was complaining about — tapping and pacing among them. In the very next breath, she’d remind me how exceptional he was: he could program the VCR — and later, the DVR; fix and build computers (he won a $300 cash prize on award night in high school); recommend the best phone for your personal needs and price point (he knew every model number and corresponding feature); and blather on, ad nauseum, about technology or cars, caring little about his audience’s interest. In the second grade, he’d even started a custom stationary business. But would he ever attend a school dance, date, or have a family? (Again, no judgment. I'm childless by choice.)
These same questions plague the Gilpeer-Grodins. By their own admission, the “burden” of raising a child with autism is “a very lonely battle” and can at times feel utterly “hopeless.” Gilpeer writes, “A lot of parents of special needs kids […] end up divorcing — the majority, in fact — because it puts such a strain on the relationship.” (My own mom and dad, I’m assured, divorced for reasons unrelated to rearing Sean.) Yet, all they want as a family is for their “beloved daughter […] [to] ‘be able to fully reveal herself.’” And through FC, she does just that — “share[s] her life […] in a meaningful and intimate way” so that her parents may “finally know what [their] daughter [is] genuinely thinking and who she [is]”: an appreciative person, as it so happens, with “deep” thoughts, capable of metaphorical language beyond what they ever imagined possible. Amazingly, the book’s title — “I have been buried under years of dust” — is something Grodin puts in her own words to describe her previously nonverbal life.
When I came to this part in the narrative, I was equal parts goose-pimpled and crying, and both were common experiences for me over the course of my read. My husband repeatedly looked over at a visibly emotional me — book in one hand, tissue in the other — and assumed I’d lost it. In truth, I found myself alternating among nodding — thinking, yes, I so relate — and rubbing the chills off of my arms when something heartbreaking happened and dabbing my eyes with a Kleenex in the uplifting moments. Gilpeer’s writing is clear and easy to read (the lawyer in her), while Grodin’s — which is always italicized to differentiate between the two — is lyrical and poetic.
I am beautiful now that a window in my mind has opened […] Maybe just being able to control myself enough to contribute something, maybe that’s enough […] to find beauty in myself […] to find peace in my own experience.
I was stunned by Grodin’s eloquence, along with her wisdom that far exceeds her 29 years. As she and her mother tell it, and as I’ve seen in my own brother’s case, so many autistic individuals are “incredibly intelligent […] extraordinary […] people.” They just need a bit more time. Gilpeer says that “she [her daughter Emily] has always done things at her own pace, when she was ready,” and my mother echoes the same about Sean. My brother hit all of his milestones eventually — they just happened later than my own. While I, who walked on my first birthday (just like Grodin) and spoke at 18 months, was fully conversational and potty-trained by two, Sean walked at a year and a half but was still wearing diapers and had no words when my mother went to enroll him in preschool at two years and nine months. Evidently, he made noises and pointed to make his intentions clear. While I wore shoes with laces in grade school, Sean wore Velcro ones, as they required less dexterity. I got my learner’s permit at 15; Sean learned to drive at 18. I went away to college, and Sean never enrolled at all, although he did move out of state for several years in his 20s. Even now, knowing he’d have support, the idea of school creates too much anxiety for him to consider it. What’s more, my “little” brother, in his mid-30s, hasn’t ever had a girlfriend, while I’m four years married. But that’s not to say that he’ll never form a romantic partnership. As history has taught my family, Sean, like Grodin, eventually celebrates the same life events as most others — just not “on the timeline [we]’d initially anticipated.”
Despite the fact that Sean learned to communicate well before the age of 25 when the narrator does (he certainly required a healthy dose of speech therapy and one-on-one help though — apparently a common occurrence for those on the spectrum), he still shares an exhaustive list of tendencies similar to Grodin’s, and that was helpful for me: to have a context for what I’d always perceived as his oddities. We’re only 18 months apart, so when he was a kid, I was too. I knew he was different, but the why often eluded me — was it simply because he was a boy? Like Grodin, my younger sibling self-soothed by stimming, engaging in “self-stimulatory activit[ies],” only Grodin’s were more severe — flapping her fingers and rocking — while Sean’s included the aforementioned tapping and pacing, in addition to hair twirling; he sometimes pulled his hair out too, especially during stressful times. When he was seven, and adjusting to new ADHD medication, Sean created a giant bald spot on the top of his head that my mom had to cover with makeup. Now, he covers it with a hat, but his balding is a result of age and genetics, although he sometimes pulls his beard hair out instead. Also like Grodin, he was often “ostracized” in school — I remember coming to his rescue on more than one occasion. Even though I was often horrible to my brother at home, I would not allow anyone to mess with him on the yard. (I will say that the hot pink, hand-me-down sweats he once donned did him zero favors.) Then again, neither Sean nor Grodin wanted to “play with the others.” Instead, they both “almost always [went] along.” Like Grodin, Sean is agreeable by nature but “not an initiator.” This passive attitude of his came in handy whenever I wanted to borrow him to be my co-conspirator in a game of make-believe, which he never agreed to happily. Still, he’d acquiesce. I could make him do almost anything. It was usually my parents who had to intervene, acting as Sean’s voice, even though, in theory, he had his own.
Similar to Grodin, my brother found “the unfamiliar […] textures” of food unappealing. I distinctly remember that he wouldn’t let tomatoes so much as touch anything else on his plate — even if they were still whole — and that he largely ate plain foods like hamburgers with just ketchup (made of the very tomatoes he dreaded) or cereal with whole milk, which he drank for the calories. He was a very skinny kid. “I would never eat anything but cake and pasta if I could get away with it,” Grodin says. And I think a younger Sean would agree. Now, he’s come to be much more culinarily adventurous and no longer has to bulk up with high-fat dairy products. I’m sure that living with my mom, a retired caterer, has helped a bit.
Perhaps what struck me most is that Sean and Grodin both “hold information” photographically, “in a way that [they] can sometimes see it before [them].” Gilpeer writes that “Emily could almost recount the professor’s lectures verbatim; her memory and attentiveness were that sharp.” My brother’s gift, meanwhile, is with numbers — he can remember the exact price of every new electronic gadget that’s printed in the newspaper. When he worked at Staples, he knew which printer took which ink, and Staples sold a lot of different printers. The other employees would consult him, instead of the giant three-ring binder, whenever they had a question. Sean’s computer-brain was faster than flipping through so many sheet-protected pages. It’s interesting to me that both my brother and I are concerned with precision even though only one of us is on the spectrum. While Sean’s special ability is his precision with numbers (as a child, he once misplaced a Post-it on which he’d written a stranger’s phone number, and he was able to accurately recall it — area code and all — hours later), mine is a precision of language and now, thanks to Pilates, also a precision of movement. Importantly, seeing these parallels has helped me to be more sensitive to Sean’s disorder.
As tempting and healing as it’s been to better understand Sean’s behaviors through Grodin’s, I want to be careful with the comparisons because “it’s a worse crime than stereotyping to think of us [those with autism] as all being similar […] [to] stuff us all into the same box.” This sentence gutted me. Here I’d been thoughtlessly going along, reading Grodin’s words and ticking off items on an imaginary checklist in my head — my brother does this, and yes, that too — but I wasn’t fully appreciating her words for what they were: uniquely her own. This was her stage — her chance to divulge her truth, not Sean’s. And yet, don’t we read to find our own stories in others’? The power of great writing, fiction or nonfiction, is its ability to both pull us out of our own lives and take us deeper inside. Each good book provides an opportunity to see our own world, different as it may be from the narrator’s, reflected back at us. Here too, as much as this is Grodin’s and Gilpeer’s story to tell — and they tell it richly, with nuance and grace — I found that it was also my brother’s story and even my own. While the authors write their way through their own experience with autism, they likewise gift readers — whether we are neurotypical or neurodivergent — with something universal to which we can all relate: hopeful and heartfelt threads about family, resiliency, and the human experience. This is not just a disability narrative but an important memoir that heals as much as it educates. I Have Been Buried Under Years of Dust transcends labels and transforms us.
Melissa Greenwood has an MFA in creative nonfiction writing (CNF) from Antioch University Los Angeles. She has been published in Brevity, Lunch Ticket, Annotation Nation, The Los Angeles Review, Meow Meow Pow Pow, the Pup Pup Blog, The Manifest-Station, Poke, and forthcoming in Neuro Logical and Pink Plastic House.