More a “Coach” Than a Dad: Being the Father of an Autistic Child
As a parent of an autistic child, Jay’s father devotes himself into taking care of Jay as a “coach”, at the same time breaking the gender stereotype of caring as a man. Let’s see how Jay’s family strives for living despite Jay’s autism and the father’s atypical role in caring.
Currently a grade-eleven student at National Chiayi Special School in south-central Taiwan, Jay Tsai was diagnosed with severe autism when he was three years old. During that time, Jay’s father decided to quit his job as a worksite director to take care of Jay and manage his education.
With this decision, Jay’s father also started learning more about autism, and picked up writing as a method to express his feelings and share his experiences caring for Jay. As a result, people gradually started to learn more about his life with Jay and he would also regularly give public speeches.
Being a “Coach” for an Autistic Child
Jay’s father took on heavy responsibility for taking care of him, becoming a strict “personal coach” for Jay.
“In the beginning, this caused some serious conflicts within my family. However, I knew that if this training started to bear results, they would stop commenting. But, I knew I had to be ready for a lot of their criticism along the way. ”
Jay’s mother had tried to take care of Jay the best she could. While she knew that she was supposed to correct Jay whenever his stereotypic behavior occurs or he started throwing a fit and hurting himself, she always ended up letting Jay off the hook because it hurt her too much to see him suffer.
On the contrary, Jay’s father considers himself to have a rigid personality. With this personality, he knew he would make a better coach for Jay than the mother.
“Waiting” as a Task for the Coach
And as Jay’s coach, the most frequent activity he found himself doing was “waiting”.
When Jay was a child, he had to go to the hospital for speech therapy on a weekly basis. In the mere 30 minutes of each session, the therapist was so eager to see his progress that he always asked Jay to “make the sort of progress he was supposed to make” with a strict and even threatening tone.
The standard speech therapy put a lot of pressure on Jay. However, Jay’s father wouldn’t like to blame the therapists since he knew the requirement to see progress in patients is inevitable in medical and educational system, which allowed no one to spend enough time with children with special needs individually.
Jay’s father hopes that grown-ups would spend more time being with autistic children, and wait more patiently for progress.
“When you give them time, you are also giving yourself time,” he says.
Father as Mother, Mother as Father
Speaking light-heartedly subsequently, Jay’s father recalled a time he took Jay to a park near their house. There, he noticed most of the kids are with their mothers. It was then that he realized how much he stood out as a male caregiver.
This is when the gossip began. People started whispering about the “interesting pair” Jay and his father made. At the same time, Jay’s father found it difficult to mingle with the mothers at the park. “Whenever they saw me hanging with Jay, they just assumed that I was an unemployed father,” he says.
After hundreds of speeches Jay’s father made to the public, people finally began to realize that he was a father who’d left his job to take care of Jay. What most people didn’t know, however, was that Jay’s mother had been working to support the family.
Since Jay’s father left his job, Jay’s mother had been making great strides in her career — from being a land surveyor working inside the office to worksite director. Taking on the position originally held by Jay’s father, she had to start managing operations outside of the office. “She had a lot to deal with while working alone,” Jay’s father said, empathetically.
Standing at only 153 cm tall, Jay’s mother would find herself surrounded by employees towering over her at work. Whenever long-time colleagues asked about Jay’s father, she would reply with slight embarrassment that he was taking care of Jay at home. While Jay’s father facing awkwardness taking Jay to the park, the mother had to handle such solely in the workplace.
The Lonely Island on Which Jay and I Live
Over the years, Jay’s father served as his coach, helping him prepare for vocational high school all with the hope that Jay would one day be able to become part of society. At the same time, Jay’s father, who shook the status quo regarding gender roles and education in the family, tried to change stereotypes as he shared about how he’d been raising and teaching Jay. While assuming Taiwan is relatively progressive toward autistic people, Jay and his father are nevertheless still trying to become part of the “norm”.
Having done everything he could have, Jay’s father still hopes that Jay could just live however he desires.
“If there were an island with only me and Jay on it, I am sure we would be very happy…”, he says, with a defeated tone.
Shaking it off, Jay’s father brightened up and said, “We have been living alongside everyone else and have been trying to fit in. We will be sure to live our life happily when we have reached the end of the tunnel.”
Other articles in this issue
Being a Devout Catholic Lesbian: Driven to Depression by Her Family of Origin, Finding Relief With Her Lesbian Family
The story of Chloe and her same-sex partner, Frankie, shows that inclusive institutions of marriage can relieve people from overwhelming prejudice and stereotypes.
This article was originally written in Chinese by participants of Daping Reading Community, Chen Shiao-yin, Lin Tzu-han, Qin Shiu-wen, Wu Cheng-en, and Liao Yi-ting, who were high school students at the time of completion of the article.
