Running Between Trees

I heard the soft gasps from my colleagues and lowered my head to hide any reaction to that takedown of the supervisor. That spitfire woman was not going to be told how to interpret her own experience.

I glanced at Dorcy’s face throughout the event and imagined what was going through his mind and if he had any takeaways from all that was said. In his internal world, were there dreams? Did he have friends? Did he want friends? What wish would he want granted if given the opportunity? I tried many times before to ask these questions and draw him into conversation. I ended up in dialogue with myself about how awful it would be to lose a sibling and not even be able to understand the implication of it. I processed it with Midowa later that evening, trying to explain why Dorcy was so low functioning.

“Na wa o, so what will cure him?” he asked, half yawning. “What exactly is the treatment for this autism thing sef?” We had exchanged countless messages about autism in my school days, and I was slightly annoyed that he would still ask that. I expected him to know better.

“Eeem, there is no particular treatment as far as I know. I guess it depends on where somebody is on the spectrum and then it comes down to managing the behavioural issues.”

“You say?” I rolled my eyes, hearing the sarcasm in his voice.

“Think of it as a scale of numbers that increases from mild symptoms to severe. Some people will have only some unusual behaviours, like not wanting to be touched or being obsessed with routine. The ones further down will have more severe problems, like language delay, high sensitivity to sounds and touch, and repetitive movements. The goal is to tackle the specific behaviours depending on the outcome you are hoping for.”

“So the boy is on the severe end?” he asked.

“Yes, although a few other kids have it worse than him sef. At least he can talk.”

“Kai, this world sef. Ehn, so many things wrong with people, especially these poor children.”

“My dear, na so oo.”

“It’s good sha. It’s nice people like you who can do this work,” he said.

Nice people like me.

I certainly thought that of the people I worked with, especially my supervisor. They had genuine empathy for those with developmental disabilities and committed their life to supporting them. I wasn’t sure that I fit into that category of really understanding the work involved and being moved purely by empathy.

Case in point: There used to be a boy at our neighbour’s house. I liked playing with his sister but was always afraid to go to their house. I remember the dingy feel of the house when the boy would stagger into the living room, growling as his giant feet scraped the floor, drooling all over his six-foot frame. I used to tense up when he came into the same room as me, and his mum would assure me that he was harmless. I still felt like bolting through the door. That house used to give me the creeps. Because of the boy, it seemed to take on an especially frightening atmosphere, like darkness was always looming over it. It felt like a dungeon where a hungry monster lived and I was the prey. I never believed his family’s assurance that he wouldn’t hurt me. I just knew that if he ever attacked anyone, it would be me, like a dog that goes after the person who smelled of fear and distrust. Eventually I stopped going there to spare his mother the embarrassment of constantly trying to pacify me.

No one knew that story, about how I used to fear people like that kid whose behaviours were more than just weird. I was too ashamed to tell anyone, even Midowa, and so when he called me nice, I responded modestly, “My dear, we all have to try.”

I had just gotten to the point where I could recognize spectrum behaviours and fake competence in dealing with people like that neighbour kid. Yet the so-called impostor syndrome haunted me every day, even though I schooled Midowa every chance I got, pretending to be an expert. I wondered if the people I worked with could see through me. They would rattle off clinical terms and speak so eloquently about the underpinnings of behaviours that would seem odd to an inexperienced person. I wanted more than anything to sound like them, to tap into their vocabulary and use politically correct and inoffensive language.

“Anyway,” I said, changing the subject. “So, at the seminar, one of the speakers was saying that it’s okay to say ‘autistic,’ but Rhonda was like, no, we say ‘person living with autism.’ Omo, it was such a treat to see that interaction. Nobody questions Rhonda o, but she met her match!”

“So what’s your opinion?” Midowa asked, his voice heavy with sleep. The time on my phone said 8:00 p.m., which meant it was about 2:00 a.m. for him.

“Rhonda was right—language is very important. And I agree that it should focus on the person more than the diagno—”

Midowa cut in. “Ehn, but I also see the woman’s point. It’s like somebody saying ‘girl who is Black’ instead of ‘Black girl.’”

“Well, that’s different, but I don’t know, jor. Sometimes in this country, I think people are just too sensitive. There is always a chance that you will offend them.”

“Wait—you call your supervisor by her name?” Midowa asked.

“Yeah. She asked me to.” I was not in the mood to convince him that I hadn’t lost my good home training. “Something I found really interesting was one other woman shared her experience of being diagnosed when her daughter got her own diagnosis. I was surprised. An adult realizing that the struggles she has had in her life were because she had autism; meanwhile, it was revealed only while she was focusing on her nine-year-old daughter’s issues.”

“Ha, so how was she able to take care of her child?”

I paused at that question, wanting to reply something sarcastic like, What, she cannot take care of her child because she’s autistic? But then I thought honestly about my own reaction as I listened to the woman speak. I was struck by the fact that right next to her on the panel was a man who presented with the classic autism behaviours, and it was a stark image of the diversity in the spectrum of autism. The woman shared incidents where she would be having meltdowns when she had to make choices, and the awkwardness of not being able to hug or enjoy physical touch. When she got the diagnosis, she was relieved to know that contrary to what some people thought, she was neither crazy nor stone cold. Then again, she was also worried about having to live with this new label for the rest of her life. Though, to be honest, how she was able to parent her child had come up in my mind. I wondered, if she had been diagnosed in childhood like her daughter, could that label have caused her and the people in her life to limit her to the point where she would not be the mother of four children that she became? I couldn’t blame Midowa for asking that question. I only happened to know better because of my exposure in the field.