Image by Etienne Girardet on Unsplash
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 symbolizes an autistic person. We never got to find out what it was I had 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 labor 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 4 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 transparence 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.
Nonetheless, autistic or not, they all suggested we take him to school. This was a universal opinion everyone around us had, including my mum who believed that the answer lay in playing with him. "That is what I did with you Alex when you wouldn't speak," she said to me. She engaged me and motivated me so much as a child and I somehow came out of whatever it was that was ailing my mind. The sad thing is, we didn’t know the first thing about playing with Leo. How do you engage an unresponsive child? We would try and his face would remain wooden, discouraging us from further attempts. Because I did not want my wife to hear me, there were nights I bit my pillow and cried until my insides felt emptied out by my tears. I secretly believed I was to blame. That the “bad” gene must have come from me. And if I was to be honest, I had wanted a girl for a first born for this reason — knowing that boys were four times more likely to be affected by autism than girls.
For one year we enrolled Leo in a playgroup and took him for therapy. We were required to be at the sessions by 7:30 am thrice a week, then my wife would take him to school. The schedule was so involving she resigned from her corporate job to care for him. We lost our medical insurance so we had to pay these bills in cash. Still, we believed it was a passing cloud. He only needed to socialize and he would be fine. But then he didn't improve. My wife passed by the school to find out how he was doing and was appalled to find him seated alone in a corner by himself. The teachers side-lined him because they did not know what to do with him — and he preferred to be alone anyway. This wasn’t working so we pulled him out.
By this time the clinicians were fairly sure he was on the Autism Spectrum.
I look at my wife — Jacky — and I can’t afford to be angry about who didn’t cap the toothpaste. I feel our relationship is grounded because our struggle is the same. I couldn’t have asked for a better partner to wade through life’s storms with in these circumstances. In as much as friends and extended family are there, they sometimes feel like extras in a movie where you play the leading role. They can only take you so far. The rest of the climb is steep and narrow and not everyone can come with you. The cost implication is huge and many fall by the wayside.
There was a point when people did not invite us for birthdays or functions because human beings shy away from awkward situations. Yet this is what Leo needed — social interaction. A supermarket run with him felt like an arduous task because his attention span was the length of a test drive. Being human, you couldn’t help but compare him with other children — even those younger than him. We would watch them talk endlessly when all we wanted was for our son to say a word.
He was like a typewriter. For him to learn anything you had to manually input the data. He had to be taught everything as opposed to regular kids his age who learn some things passively. Things that are challenging for regular kids are harder for children with autism. As a doctor when I treat my patients, there is usually a finite end. They come in sick but start to get better and go home. But for Leo there was no finite end. Sleep was a gap in time. We woke up to him the way he was and went to sleep with him as he was.
It was a very confusing time for us. We felt caught between faith, science and culture. There is no stone I left unturned in my quest for knowledge on a child on the spectrum. I would stay up on the web looking for answers to questions I did not know how to ask. Sometimes I would find myself drifting to my roots and wondering whether he had been bewitched by one of the neighbours in our village who had held him, when he was nine months old. I was a drowning man and I was clutching at straws. We tried everything under the sun, from calcium supplements, fluconazole tablets and all manner of dietary supplements. We even travelled to India twice for stem cell therapy that helped a bit — and a bit was good enough for us. And because life knows when to throw in a plot twist, I was let go from my job and the coffers ran dry. But we didn’t give up. We couldn’t.
One day the endless research bore fruit.
We discovered Applied Behaviour Analysis (ABA) — an evidence-based program that turned the wheels on Leo’s life. The program recommended 25 hours of therapy a week yet we had only been doing three hours! It also emphasized on early intervention which we had been denied because of the hesitation to diagnose him. Through ABA we met a lady from the UK who gave us guidance on how to motivate Leo to learn and for the first time we could interact with our son. It felt like he had been a lamp hidden in a lighting store that wasn’t plugged in but now was. He started to notice when we got home and began to slowly communicate his needs.
ABA therapy is costly and the Certified Analysts in Kenya can be counted on one hand. We had to scrimp and save to get Leo the help he needed.
To this end, Jacky, inspired by the changes we started to see in Leo decided to go back to school to pursue an MSc in ABA. That was two years ago. She completed her studies, did her board exam and is now a Board-Certified Behavioural Analyst. (BCBA). She is one of four in Kenya and is now involved in Parent training and mentorship of behaviour technicians. In addition to this, we created a trust – ‘Leo Autism Trust’ - to raise awareness about ABA and help raise funds to help other children with special needs gain access to therapy.
Leo is like an instrument God placed in our hands for His purpose. You can’t change your instrument but how well you play is entirely in your hands.
Written by Dr Adongo S Meme
Jackie can be reached for more information on:
0717383333/ 0711217196
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What is autism spectrum disorder? (ASD)
Autism spectrum disorder is a brain disorder that impairs a person’s behaviour and ability to communicate and interact with others. Can be mild or severe. No one knows what causes it.
What are the key symptoms of autism spectrum disorder? — To be diagnosed, a child must show signs in early childhood. Sometimes the symptoms do not show up until the child is in school.
The signs of autism spectrum disorder include problems in 2 key areas:
●Social interaction and social communication — Children with ASD have trouble relating to others. They often don’t know how to read facial expressions, and they tend to avoid eye contact. Plus, they often dislike being touched and take much longer than other children to learn to speak. Some never learn to speak. The parents of children with autism spectrum disorder sometimes think the children are deaf.
●Limited interests — Children with ASD tend to show intense interest in certain things. But they show little interest in anything else. Young children might get completely focused on things that spin or shine and ignore most everything else. Older children might become preoccupied with 1 topic, such as the weather, numbers, or sports.
Children with ASD also tend to have rituals that they must follow exactly. For example, they might need to eat particular foods in a specific order, or to take the same route from one place to another — every time. If these habits get disrupted, the child get upset.
When should I take my child to a clinician? — Take your child to a clinician if you see any of the signs of ASD listed above. (I have not listed all of them) You might also want to have your child’s hearing tested. That way you can find out whether hearing problems are causing some of the symptoms you see. If the clinician suspects ASD he or she will probably send you to see a team of experts who know how to spot the disorder. If your child does have ASD, it’s important that he or she be diagnosed as soon as possible because some of the problems can be improved if they are caught early.
How is autism treated? — The right treatment for autism spectrum disorder depends on the age of the child, how severe the disorder is, and whether the child has any other medical problems. ASD cannot be cured, but children are often able to overcome many of the problems it causes.