Individuals on the spectrum shouldn’t have to fight to survive and function each day. I’ve heard individuals on the spectrum often speak about the exhaustion of managing their schedules each day because they are trying to live in a world that isn’t always aware of and sensitive to their needs. Jodie Van de Wetering, an autistic writer from Australia, explained this to me once, saying,
“It is over and above what a neurotypical person would need, and it is disheartening sometimes that I need three timers, a whiteboard and endless reminders and checklists to achieve what other people seem to be able to do with nothing more than a slim diary. But it’s not about doing what other people do, or looking sleek and elegant. It’s about getting the job done, and this is what I need to do that.”
This reminded me of how my son fought for survival after being born 3 months early and the subsequent obstacles he has faced with a diagnosis of cerebral palsy and autism. This week I wanted to share a personal essay I wrote almost 4 years ago about how my son had been putting up a daily fight to survive and then develop after his extreme premature birth. He hadn’t yet been diagnosed with autism, but the specialists were already swarming with predictions about his future. Writing this was one of the first steps to understanding the variety of different ways autistic people experience the world and beginning to work towards supporting their needs and advocating for autism acceptance.
He’s Going to Make It
He sits on the floor with his legs tucked underneath him. A squeal escapes an indefatigable grin as he watches his younger cousin jump on his Christmas present: a mini-trampoline. At nearly three, he doesn’t know how to jump. He can’t even stand without using the bar attached to the trampoline for support. But he’s thrilled watching his cousin use the present. He signs for “more jumping” and giggles from the ground each time her feet fly above his head. When it’s his turn, he crawls on the tough mesh and uses the bar to pull himself to stand. When we tell him to jump, he jerks his legs and shakes his head, slightly bending at the waist and then straightening up again, with the same delight on his face that effervesced from the ground.
This doesn’t seem like the same boy the nurses described as having an “attitude.” When he was hospitalized, I attributed his fussy spells to a new nurse’s inexperience with making him comfortable. A PICU nurse once told us that he hated her. He was six months old at the time. How can an infant hate a caregiver? I thought.
I learned that he preferred to sit upright or lay on his belly because he could breathe better. Or that reading to him and rubbing his temples relaxed him enough to reduce his oxygen needs. Time with him revealed these idiosyncrasies. He often fought blood draws, trach changes, or any transitions, but I saw this as a positive trait.
“These preemies are fighters,” one NICU nurse told me. “They have to be.”
My husband first noticed my son’s determination when he was a couple days old and his little body stretched out on John’s chest in what he called “the touchdown Jesus position.”
“He’s going to be a football player,” he beamed.
Another day he reached out a hand towards his dad with his thumb and pointer touching.
“It’s the three-point sign! He’s going to be a basketball player.” We’d heard the doctors’ projections of chronic lung disease, but our son seemed to be telling everyone that he wasn’t listening.
Two years later, he races his walker around the basketball court outside and practices shooting in his Nerf hoop in his room.
Kids have the innate curiosity to try everything, even if adults never expect them to succeed. His curiosity let to an excited determination to meet infant and toddler milestones of smiling and laughing, rolling and crawling. Although developing in the dust of his toddler cousins, he hasn’t been frustrated.
His cognitive strength filled the gaps left by fine and gross motor skills. When he showed interest in identifying countries and bodies of water on a world map at twenty-four months, I knew there would be many milestones I would miss if I only paid attention to the pediatrician’s charts. I have to smile when he points out Sri Lanka, or the Caspian Sea, while his older cousin, when shown the letter ‘B’ says, “car!”
Today the three therapists that analyze his behavior weekly find new developmental concerns with each piece of perceived progress. Why does he prefer to play alone instead of engaging with other two or three-year-olds? Could his desire to read cereal boxes or take a toy to the table when he eats be a sign he will be antisocial in school? Is his fascination with numbers and letters and his above average reading ability a sign of hyperlexia, a symptom of autism?
I mentally note each concern and while I don’t wish to feed denial, I observe my nieces and nephews and think that any two-year-old that had three therapists analyzing his/her every move would have a list of quirks to address.
What I see is a preference to play alone when his cousins’ behavior is erratic and aggressive, reading boxes at the table a craving to practice his reading skills, and his “hyperlexia” an early sign he will grow to be a genius and future leader of the world.
Every bit of progress my son has made has shown his playfully obstinate desire to grow in his own way, even since birth. On his second day of life, when his outlook appeared grim, my husband and I weary with depressing prognoses, we stood with his nurse and watched her complete an assessment. A white and blue plastic sea concealed most of his face save a pink nose. He had barely moved since birth, so we were delighted to see one of his tiny arms jerk up in the air when the nurse put a thermometer underneath it. The dime-sized hand rested on a wide tube that channeled pressurized air through his nose. We watched as each of his fingers peeled away from the tube, leaving only one remaining.
His middle finger.
I laughed for the first time since his birth.
I imagined the finger as a symbol of his resistance. If he grew to be as feisty as the gesture suggested, I knew he would make it. I knew he would make it out of the hospital, take his turn on a trampoline, and develop a unique identity regardless of the barriers.