Invisible children with autism

“When he was two, we expected him to start talking, but he wasn’t,” Ibe says. “Meanwhile, when he was one, he was able to say ‘bye bye’. And when you say ‘praise the lord’, he would say ‘hayeyeya.’”All that changed when the family took their son for tests with paediatricians to get the verdict.“It was […]

“When he was two, we expected him to start talking, but he wasn’t,” Ibe says. “Meanwhile, when he was one, he was able to say ‘bye bye’. And when you say ‘praise the lord’, he would say ‘hayeyeya.’”
All that changed when the family took their son for tests with paediatricians to get the verdict.
“It was traumatic. I couldn’t imagine it,” Ibe says of the moment he learnt his son had autism spectrum disorder (ASD). “It wasn’t an easy moment when I discovered my child was autistic.”
“The first thing that amazed me was my little exposure to it, I didn’t know about it. It was a great challenge that all this while, a young man going into marriage, I wasn’t aware of this thing.”
He is not alone. Many parents have no idea what the disorder entails or that their child could have it. Diagnosis frequently leaves families in confusion.
Deciding what to do once diagnosis is made is difficult, says Dr Chito Nwana, director of Abuja-based Tabitha Medical Centre, a home for children with ASD.
“Most parents don’t even know what’s out there, what to do.”
The centre mounted an interactive forum to put parents in touch with experts in ASD “brought out of the woodworks”—most of them trained in the UK and the US—after it discovered that even after diagnosis, many doctors couldn’t tell parents where next to go.
“There are few resources and they are overbooked already. It was really challenging.”
At least one child out of every 143 globally has ASD. Their numbers in Nigeria is uncertain, but could number in the hundreds of thousands of children doctors think are erroneously taken out to forests or streams and left to die, or locked up and hidden away from plain sight because of their behavioural problems, usually and mistakenly attributed to witchcraft or a demonic possession.
Fact is children with ASD do have behavioural problems, but they are neurological, not spiritual, experts say, and can be corrected if detected early.
How children develop in the first two years of life is key, says Dr Toju Chike-Obi, consultant paediatrician at Tabitha Medical Centre. There are developmental milestones—certain things children should be able to do at certain ages.
At months three and six, kids “should be able to smile and make eye contact,” says Dr Chike-Obi.
“Children with autism don’t do that. They lack communication, interpersonal connection from very early on. Many of them have problems speaking. A child at 12 months, doesn’t have one word they can say that the parents understand, the parents need to be concerned. If by the age of two years, that child cannot put two words together—like, I-want, me-go, give-me—that’s a problem.”
The severity of autism ranges are different, because the condition is a spectrum with no extent of ASD cutting across all children. But the hallmark is inappropriate speech, even among kids who can speak very well.
“The goal of proper management is to identify these children early and help them to begin to communicate in alternative ways other than verbal,” says Dr Chike-Obi.
A prominent alternative is sign language and PECS—picture exchange communication system.
The wiring of the brain of ASD kids makes them poor at forming words but adept at symbols.
Using pictures to communicate with them can help them build their skills using applied behaviour analysis (ABA), says UK-trained psychologist Toks Bakare. ABA uses link between environment and behaviour, emphasizes individualized programme for ASD kids and puts them front-and-centre.
An ASD kid will hardly make eye contact, but an “exaggerrated pleasure” at the first and any eye contact might encourage more where that comes from is how ABA might work, Bakare explains.
Parents must be in on the programme, if it is to work, says Dr Chike-Obi. “Data is clear that these children must have at least 40 hours of focused intervention weekly for you to actually see an improvement…The parents have to be involved from the get-go. So a lot of what the people helping the children do, the parents have to be able to do at home, so there is continuity.”
But the field of helping kids with ASD is one of the leanest in medicine in Nigeria.
“You find people who specialize in special education but don’t have a lot of focus on autism in itself,” says Dr Nwana. “There has to be more emphasis in creating programme in school, so people can actually go down that line and feel it is a profession to do.”
When David, 7, was first diagnosed, “parents didn’t want their children playing with him and some schools didn’t accept him,” his mother Ifeoma Agarry remembers.
It has taken time, energy, patience and commitment, but her son is a changed boy, says Agarry.
“David now attends to commands, he uses his fingers, can trace words, he now plays with his friends. Initially he was isolated. Now he appreciates people. It is not a challenge, it is a blessing in disguise. Don’t lock them up, don’t lose hope.”
Weekdays spent at a special care centre have helped Ibe and his son. “They are children who can lead normal lives, they need time, patience. I can tell people my child is not autistic anymore. Even though he has not communicated but there have been tremendous changes.”