Our son's quietness turned into a life-changing diagnosis

By - Jan 1st 1970

It took me three years to say it out loud. Each time I tried; the words would melt like ice under the sun. Saying them would make it real and I wanted anything but this to be real.

My mom tells me that, until I was four years old, I was an awkward child with an upturned gaze. I dwelled in a veil of silence and for the love of God, I couldn’t sit still either. I was obsessed with sweeping the house for hours on end because it calmed me down.

Our relatives believed I was mentally retarded because of my mannerisms. This belief held fast because in primary school I was nicknamed the “Rainman” — a name that symbolises an autistic person. We never got to find out what it was, and I only have mild remnants of it now. You will understand then, why I struggled with the notion that my first-born son could be autistic.

The path to the life we now live, began with my wife’s first pregnancy. We sailed through it with no snags. And even if in labour she ended up having a Caesarean section, our baby boy — Leo — came out wrapped in a shawl of wholeness. We went home ecstatic and amazed at how easy a baby he was. People would say to us, “You are so lucky to have such a quiet child.”

It was not until he was about four months old that a close friend mentioned how he never smiled but we did not think too much about it. Besides, he is a pure-bred Kisii boy, we don’t just smile at anything! Until his first birthday.

He behaved like a child sitting in an empty room. We noticed he could not maintain eye contact or interact with the other kids. He stared endlessly at objects such as ceiling fans or lights — a behaviour we later learned is known as visual stimming. This meant he always had an upward gaze. Once at a mall, he ran around in circles fixated on the rotatory motion of a ceiling fan. It was at this point that it started to bother us that something could be wrong with him. But most people we spoke to said, “Relax. Boys are like that.” We even attributed it to the nanny who was always on her phone and didn’t engage him. “She must be the reason he can’t speak,” we said to each other. These thoughts carried us for a time but dropped us on the hard cold ground when a few months later, a patient called me for a consult.

This patient had a child who was autistic and was looking for a referral. When she described her child’s mannerisms, they were similar to Leo’s. Everything took on a terrible transparency and I knew it was time to visit a clinician. Leo was one and a half years when we took him for his first appointment and it was horrifying. The doctor had a pen that she was using, to try to get him to follow for movement — nothing.

She hit the table next and when he did not respond to the sound, she banged on it. He didn’t flinch. I could sense my wife’s frustration because her face was cast in the most hideous gloom. She took matters into her own hands and began to call him by his name but he didn’t turn. One may have mistaken him to be deaf.

Yet even with this behaviour, the doctor skirted around the diagnosis. And she wasn’t the only one. We saw another clinician who said Leo had red flags for autism. They hesitated to call it, citing that you can’t diagnose autism before a child is three years old.

To be continued...

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