The author’s son, Isaiah, prepares to eat breakfast during his morning routine. Photo provided by Julie Taiwo Quarles
by Julie Taiwo Quarles
Julie Taiwo Quarles is a Los Angeles-based playwright and English professor. Her plays explore her Nigerian-American identity, and her research centers Black performance and representation. Her three music men, her husband and sons, are her entire world.
April is Autism Awareness Month, a time dedicated to spreading awareness about and advocacy for the neurological and developmental condition. In the author’s world, she and her husband employ research-backed strategies, special toys, a restricted diet and the love and care of a doting grandmother to provide their son with a supportive environment.
3:00 a.m.
On a recent Wednesday morning in January, I embarked on my typical weekday routine as mom to a six-year-old Black boy with autism.
I awoke around 3:00 a.m. while my husband, Ike, a project manager who works 13-hour days, enjoyed his final moments of sleep. I prepared a hot pot of coffee and turned on my favorite live YouTube bookstore café video: a fireplace and colorful bookshelf visual with smooth jazz accompaniment. I then proceeded to tidy the house obsessively, a ritual I have acquired as a coping mechanism: I picked up books and toys from the living room floor, straightened up pillows across the couch, cleared off the cups and toys from the table, and washed a sink of dirty dishes. I work as an English professor, so I did some grading and lesson planning given that this is the time of day I can find the most quiet and stillness.
6:30 a.m.
As Ike prepared for work, I began the complex school-day dance with our special son, Isaiah, who was diagnosed with autism spectrum disorder (ASD) around the age of two. I woke him up with our good morning song, tickled and kissed him, and then went to the closet to select his clothes and start ironing. I reminded him that he had school; that he would see his teacher and favorite aide, Ms. Z; and that he was going to have a lot of fun – all to the tune of shared songs.
Research from the University of Ohio’s College of Arts and Sciences reveals that music can enhance social skills and reorganize the brain for people on the autism spectrum. For our big emotions boy, singing is foundational to navigating the ins and outs of daily life.
In the jargon of speech language pathology, Isaiah is a “gestalt language processor.” This means that he acquires language through a gestalt, which the Washington Autism Alliance calls “a multi-word ‘chunk’” (i.e. a song lyric) “that a speaker hears, stores and uses as a whole, before having knowledge/awareness of its internal structure.”
Songs fill our home to encourage both social development and language formation. Some highlights include “Brush Your Teeth Sing-Along” from Caitie’s Classroom for tooth-brushing, her “Let’s Count to 100” during our hair-sponging routine and Sesame Street’s “Let’s Go Driving” to get us out the door. Our boy is a gifted singer and has an impressive ability to memorize these meaningful lyrics almost immediately.
As Isaiah observed me ironing, he suddenly asked to visit his Saturday social skills group. I reminded him that it was Wednesday, so he would have regular school.
Our soundtrack paused.
“No school! No school today!” he shouted, suddenly on edge as he jumped up from bed and headed toward me and the scalding-hot iron. “No school today, Mommy!” he pleaded.
Ike quickly entered the room and rushed toward us, grabbing the iron from me while reminding Isaiah that it was hot. I encouraged Isaiah toward the bed amidst resistance.
“No iron! No iron is hot! No school! No teachers today! No today is Wednesday!” he shouted.
Ezekiel, our 2-year-old son, arrived and climbed into the bed.
Upon Isaiah’s favorite small person’s arrival, he calmed. He returned to the bed to kiss his brother on the head as Ike handed me the iron.
“When you feel so mad that you wanna roar…” Isaiah sang, reciting one of his favorite songs from Daniel Tiger’s Neighborhood.
The rest of us joined him: “Take a deep breath!” We breathed in and out. “And count to four!”
We counted, and then Ike returned to his routine.
Newly at ease, I completed my task beside the boys’ songs and laughter, and then unplugged and locked the hot iron and starch spray securely in the closet, grateful for one of the many locks throughout our home installed to prevent tragedy.
At this point, we have come to expect the unexpected, so we overprepare.
Ike and I are both in our early 40s, and Isaiah is our first child. With no prior experience either as parents generally or in care of a special needs child specifically, we have been learning as we go. Research and exploration have been crucial.
I starch and iron Isaiah’s clothes every morning before school, an agreement between Ike and me. We want him to be crisp, clean and the best-groomed kid in kindergarten. Isaiah may have neurological and developmental challenges, but his peers and the school staff should certainly recognize that he is loved and well-cared-for. “The nines at all times” is our vibe, and the message is, Don’t mess with our son.
A detailed haircare routine solidifies this statement, and in the months since the start of this first school year for our family, countless people have acknowledged our intentions: he looks good, smells good and his clothes are pristine, we’ve been told.
Our response: We know that the presentation of our son is noteworthy. Thank you for accommodating our special Black boy. Please continue to do so.
This meticulous attention to the details of Isaiah’s presentation is rooted in our deep awareness as parents of a Black autistic son and the social pressures and obstacles he faces, particularly within a diverse space centering predominantly non-autistic peers, on a daily basis.
A non-autistic Black boy in a diverse space is already stigmatized, but add autism to the mix, and the possibilities for danger and mistreatment become more complex.
Research from Dr. Amber Davis, Dr. Marjorie Solomon and Harolyn Belcher for Autism in Adulthood explores the experiences of young Black adults from both the autistic and non-autistic contexts. They share that for those at the intersection of race and disability, their disability often results in even more frequent social prejudices than racism.
Our mission as parents of a Black autistic son is two-fold: we want to both empower our child in his endeavors to defy the many obstacles he faces and also encourage a culture of disability understanding and advocacy in the world that he inhabits. If it takes Cantu cream and squeaky-clean Jordan 1 sneakers to achieve these goals at this stage, then that’s the sacrifice we’re willing to make. We work hard to secure such resources.
Davis, Solomon and Belcher also acknowledge that diagnosis, access to care and the extent of care provided for Black autistic youth have historically faltered in comparison to supports given to white children on the spectrum.
This observation affirms our experience insisting that our medical insurance evaluate Isaiah for autism after years of sharing what we now understand are common symptoms: speech challenges, obsessive behaviors and food resistance – with no recommendation for ASD evaluation or support.
The observation is exemplified by the hurdles we encountered during our first attempt at elementary school enrollment, when the special education team and administration consistently ignored our requests for communication and support until we got a lawyer involved, which led us to move to a new district.
The observation correlates with our traumatic experience in an emergency room in which the report described Isaiah as “agitated” instead of acknowledging his autistic behaviors.
The observation inspires our persistence to advocate for our son when he cannot yet do so for himself, when as a Black boy with autism, he is most often considered uncooperative before autistic and agitated before disabled.
7:00 a.m.
Once I finished preparing Isaiah’s clothes, the boys and I sang our goodbye song to Daddy and gave him half a dozen kisses at the door.
Our experience has been that such affection accompanies autism throughout the day, a delight that we encourage wholeheartedly. To know Isaiah’s hugs and kisses is to know his unique love.
We headed to the kitchen, where I turned the TV from café vibes to Daniel Tiger and handed Isaiah his stim (self-stimulating behaviors) toys as I prepared the only breakfast meal he has accepted in four years, likely due to the common autism trait of ARFID (avoidant/restrictive food intake disorder): cinnamon-raisin toast, immediately buttered for appropriate sensory needs, cut into small squares and arranged in a Mickey Mouse bowl. I handed him the only cup he is willing to sip from without outrage – a light blue, spill-proof Contigo.
Our soundtrack continued, as I let him ease into his meal between roams around the room, giggles with brother and stims galore.
I got myself and Ezekiel fully ready first – the easy part – and then returned to Isaiah.
7:30 a.m.
I struggled to get him back into his chair amidst shouts of “No hair!” and “No school today!”, combed, creamed and sponged his curls to song and then gave him a moment to take a break.
8:00 a.m.
I guided Isaiah down the hallway toward the bathroom, where he used the toilet, washed his hands and then brushed his teeth with support and musical accompaniment.
I let him take a break, and then got him dressed. I handed him his new favorite Mario and Luigi stuffies, that day’s planned stim toys encouraged as part of his IEP (independent educational program).
8:20 a.m.
His grandmother arrived to join us for a morning assembly where Isaiah was due to receive an achievement award.
Grandma hugged and kissed the boys and then quickly whispered to me that at pickup the prior day, the teacher had asked for less distracting stim toys from now on. I looked at my son, Mario in his left hand and Luigi in his right, and took a deep breath. The ceremony was scheduled for 9:00 a.m. and the school was 10 minutes away.
8:40 a.m.
After an extra 20 minutes of tear-filled Mario Bros. removal, song-and-cuddle-filled meltdown recovery and eventual toy replacement, we finally made it out of the house.
We went to the assembly, where the school’s lovely aides supported me to keep Isaiah situated. He received his award with deep excitement and applause, refused to go to class without me afterwards and returned home with us instead around 9:30 a.m.
10:00 a.m.
I then got ready for my hour-long commute to work and left the boys in the care of their loving grandmother, my exit accompanied by our favorite goodbye song.
That morning was long, emotion-filled and overwhelming for all of us.
Typical, in other words.
It was also filled with laughter, love, hugs, kisses and a beautiful Black boy’s infectious joy – all to the tune of an endless soundtrack narrating emotions and daily tasks. Music is his art, and if we stick to guidance, perhaps a long career in orchestra conductorship lies ahead. His success is certain because as parents of a Black autistic son, we will not allow another outcome, despite existing in a world that encourages otherwise.
For any readers with an interest in accessing local resources, check out The Arc of Virginia. Since joining their local resource center a couple of years ago, the Quarles have received access to social groups, arts and therapies as well as childcare support for Isaiah. It has also been life-changing as a means of connecting with local special needs families and advocates.