On a personal note
ALL journalism is autobiography, at least to the extent that, consciously or unconsciously, the writer always reveals something of himself or herself. Just how much to reveal, what to put out and what to omit, what to highlight and what to play down: These considerations are never far from a columnist’s reckoning.
Today, pardon my indulgence, reader; this column comes freighted with more autobiographical baggage than it usually carries. My intention is not so much to dwell on a singularity as it is to invoke personal circumstance as a point of entry in calling attention to a spiraling health issue that has far-reaching implications for public policy.
My son Gbolahan was diagnosed with autism in 1980, shortly after I commenced doctoral studies at Indiana University, on leave from the University of Lagos, where I was a journalism instructor. He was two years old at the time. One week of tests at the Children’s Hospital, Indianapolis, confirmed the diagnosis.
He fretted and fidgeted; he was withdrawn and self absorbed; he shunned physical contact, engaged in repetitive behavior, and could no longer communicate through speech. He was not always like that. Some malignant force seemed to have halted his mental development, and to have then sent it on the path of regression.
What was the cause? The doctors said that, on account of some chemical imbalance, the signals reaching the brain from the central nervous system were too weak for the brain to interpret.
Could the signals be amplified?
Not in the present state of medical knowledge, they said.
I was shattered.
One day, I was terrified that I might do something nasty to myself if I did not seek counseling. Something — call it instinct or the spirit – directed me to my faculty adviser, a genial, courtly gentleman with whom I had struck a rapport at our very first conference.
His door was shut, but I knocked all the same. “Olatunji, you have something on your mind,” he said as he invited me to sit down.
I told him about my son, adding that under the circumstances, I could not continue my doctoral studies and must return to Nigeria
“Do you believe in God?” he asked, after a long, reflective pause.
“I can no longer say for sure,” I told him. Why would God visit this affliction on my son?
He was in deep meditation at the time I knocked on his office door. The Bible lay open on his table. It was ten years to the day his wife died after a long struggle with cancer, he told me. And like me, he had just enrolled for doctoral studies at American University, in Washington, DC, with two young children to look after, in addition to running the Washington Programme of the University of Missouri’s famous School of Journalism.
“Ed,” his wife had told him moments before her eyes closed, “I know that this programme means much to you. Please, do not use my death or the fact that you have to raise two children alone as an excuse for not pursuing or attaining the goals you have set for yourself.”
Placing his hand over mine to comfort me, he said that was all he could tell me, for whatever it was worth. “Love your son. Give him all the care he needs. But do not use him as an excuse for not pursuing your goals.”
It was priceless counsel. It pulled me back from the brink. I forged ahead and with the support of a loving wife completed the doctorate in three years and returned to Nigeria. I have never looked back since then.
Eleven years later, on assignment for The Guardian to interview OAU Secretary-General Dr. Salim Ahmed Salim and senior officials of Ethiopia’s ruling Dergue regime, Emeka Izeze and I were treated to a sumptuous luncheon by senior Nigerian diplomat accredited to the OAU.
Two other Nigerians, one a senior diplomat with the Nigerian mission in Addis Ababa and a distinguished international public servant visiting from Rome where he was Nigeria’s envoy at a global agency, made up our party of five.
I cannot now recall what sequence of events steered the conversation to autism, of all things, certainly not the most glamorous subject in that atmosphere of haute cuisine washed down with the choicest wines.
We discovered that four of us had autistic children.
The odds against such an occurrence – of four people under the same roof, all of them Nigerians, and three of them meeting each other for the first time – the odds of all four having autistic children are galactic.
I realized then that autism was more widespread than was generally supposed. And since then, I have found cases upon cases of the condition, and bewildered parents unable to fathom the present and fearful of the future.
At a ceremony in July 2014 marking my 70th birthday, I pledged that after one more year on my faculty job at Bradley University, I would devote the rest of my days to raising awareness of autism and use the standing that I have earned through my professional work in classrooms and newsrooms at home and abroad to help raise funds to look after the needs of the autistic in Nigerian society.
As if to confirm that autism is far more widespread in Nigeria than is generally supposed, four persons walked up to me at the end of the ceremony to say that they had autistic children. I have since learned of a young family that has two children, both autistic.
There are different, often overlapping forms of autism. The wide variation in symptoms among children with autism has led to the concept of autism spectrum disorder, or ASD. And the severity varies considerably. At one end are those who cannot perform the most basic functions; at the other are those, the so-called idiot-savants who can perform the most astonishing feats of memory or execution but can do nothing else.
Between these extremes lie gradations of autism in its many guises and disguises.
At the time of my son’s diagnosis some 35 years ago, autism was a rare disorder, afflicting one male child out of 100,000. For female children, the odds were even higher.
Last year, the Centers for Disease Control and Prevention reported that one in 68 U.S. children has an autism spectrum disorder (ASD), a 30 per cent increase from one in 88 in just two years. Children with autism continue to be overwhelmingly male. According to the report, one in 42 boys has autism, 4.5 times as many as girls.
Whether the huge increase resulted from genetic or environmental factors or from improved diagnostic techniques is unclear. What is clear, according to a statement issued this past August by the Mortality and Morbidity Weekly Report, is that “there is a growing sense that something is going horribly wrong and no one knows why.”
The situation in Nigeria may be just as dire.
The inventory I have been compiling shows no lack of awareness in Nigeria of autism and its depredations. Many agencies – banks, NGOs, schools, vocational training centres and medical institutions, have established intervention mechanisms of one kind or another. Their endeavour is to be commended, but it would be much more effective if coordinated and focused.
My goal is to assist the organizations already on the ground to help raise the level of awareness of autism and situate it in the national policy dialogue, culminating in a National Summit on Autism in 2016; in short, to help build a national constituency for the autistic in Nigeria.
This column signals the start of that project.
To that end, I would be grateful if organizations in the field or individuals interested in this project could send me at their earliest convenience a conspectus of their work where applicable, as well as their contact information.
• My mailing address is c/o Vintage Press Ltd, 27B Fatai Atere Way, Matori, Lagos, PMB 1025, Oshodi, Lagos.
• I can also be reached by email at this address: firstname.lastname@example.org