Mr David Bulambo, a Congolese refugee in Kenya, has learnt first-hand about autism from his two children with the complex development disorder.
The father of three girls — two who are autistic — was never prepared for the diagnosis and now years later, looks at his children as they struggle to interact socially and express themselves, both verbally and nonverbally.
His children have a disorder which affects the way their brains use information and it is characterised by repetition of an action and the need for routine.
And as the world marks Autism Awareness Day on Sunday, Mr Bulambo joins dozens of other parents with such children in celebrating them.
His first born Zoe, 8, is a beautiful girl with soft curious eyes and when Nation meets her at their home in Waithaka, Nairobi, she sits quietly on the edge of the bed and looks on and away from the visitors. She listens to the conversations and stands up when prompted by her father.
While she was growing up, her parents were worried that “something was not right with her”. The eye contact was very poor, she was hyperactive and had delayed speech.
NOT HEAR PROPERLY
“We did not know what was happening. We asked people if they had seen something like this before, but they would console us that we give her time. We waited and nothing happened,” he said.
They took her to an Ear, Nose and Throat (ENT) specialist at Kenyatta National Hospital thinking maybe, she did not hear properly. But they said her hearing was fine.
A sense that was confirmed was functioning when she was three, when she repeated what her mother had told her in a bid to rebuke her.
She has not spoken anything else since and her parents hold their breath whenever she opens her mouth. According to the Centre for Disease Control and Prevention, one in three people with autism remain non-verbal.
It was at Gertrude’s Children Hospital in Muthaiga, Nairobi that the autism diagnosis was known in 2013.
“I was in Chad doing a short assignment with the United Nations when my wife called and said Zoe had autism. I tried to understand what it was or what caused it. It was the first time I was hearing what I thought was a funny name, a doctrine rather than a disease,” he says.
Nairobi-based Neurologist Dr Juzar Hooker says autism is caused by a mix of genetic predisposition and environmental factors, with some genetic disorders known to increase risk for autism and some genetic defects associated with it.
SET BALL ROLLING
That set the ball rolling for long days in search of speech therapists who would cost Sh2,500 for 30 minutes, she required these sessions twice a week. This was exclusive of transport costs, as they would require a taxi. But even these sessions four months later, Mr Bulambo says, did not yield much as Zoe is still mum.
He adds: “I lived in denial but I knew I had to accept it and learn to cope. You can imagine our shock when our second born, Shekinah began manifesting similar signs when she was two years old. Zoe then was four.”
Shekinah, now 6, jumps onto the Nation journalist and clings on to her. She too like her sister, she does not speak. She grinds her teeth and avoids eye contact and in a few minutes of the hug, she peels herself off and jumps to the bed where Zoe is lying quietly as the last born, Shiloh, 4, is jumping up and down the spring bed.
Shiloh does not have autism. She plays with her sisters and in between pulling the bed sheets over their heads, they speak in a language that is understood between them alone and shortly they burst into laughter.
Their mother, Sephora, also a Congolese is quiet on a plastic chair. She doesn’t talk much unless addressed. Mr Bulambo says his wife is under medication for depressive disorder, contributed mostly because of the conditions that her two daughters go through.
She says: “We were shocked and completely devastated. What are we going to do? We started feeling the hardship because financially we were spent, the time and energy and it became hard to cope.”
While Mr Bulambo has stuck to his wife amidst the challenges and demands of raising two autistic daughters, his love for her is evident. In other settings, families with an autistic child have been known to end in divorce and separation as shared in the Autism Society of Kenya website.
Mr Bulambo, a trained teacher, and his wife have lived in Kenya for nearly 10 years and considers it his home. However, given the challenges of taking care of his children he is planning to relocate to Toronto, Canada where he believes there will be specialists and government-sponsored programmes to help his two daughters and hopefully, have them integrated into society.
Specifically, he would like them to go back to school because they do not attend school as few of the facilities have a specialised care giver to teach the children. “Last year, the children all lost their potty training and they had to wear pampers throughout. This was very costly as we spent all our resources, even sold our taxi car. They have just learnt how to use the potty now and it is a moment of pride when they reach out for the red potty.”
As the family learns to cope with their children’s condition, the parents are asking for people to be slow to judge parents with autistic children.
“Sometimes when they are in a matatu, they disturb people and you feel embarrassed, nowadays we avoid going to social gatherings. I wish people would understand that not all children are misbehaved, some have autism and other disorders and they are children like yours. It is not easy at all.”
MYTHS ON AUTISM
• Children with Autism are thought as having been bewitched, are a bad omen, or cursed.
• Some parents believe divine intervention will “purge the demons” and neglect medical care.
• First time observers assume children with autism are ill-mannered as they are over friendly and get into other peoples personal spaces as such their parents avoid social gatherings.
• Misconception that someone who is autistic is mad.
• That it is contagious.
• There was great hype about an association with measles vaccination, but there is no definite scientific evidence to support this, and vaccination is safe.
Sources: The Autism Society of Kenya, Autism Daily Newscast, Dr Juzar Hooker, Dr Pauline Samia
Autism spectrum disorder (They share common origins and features, but are classified as spectrum disorders because symptoms and severity vary among individuals) affects 1-2 per cent of people in the world, including very high functioning individuals and famous historical figures such as Albert Einstein.
Dr Pauline Samia a consultant neurologist, chair of the department of paediatrics at the Aga Khan University Hospital:
Does Autism affect one sex more than the other? If yes, what is the reason for this?
More Males are affected Male to Female ratio is 4:1 the reasons are unclear but likely to be genetic.
How would a parent/guardian know that their child has autism? Symptoms?
• Children who by 3 years of age do not have interest in other children (play alone or near other children but not with other children)
• They are not able to have joint attention with parents or significant others (appear to be in their own world most of the time apart from when they need something such as food)
• They have excessive interest in a few things such as plays with moving objects only.
• They lack ability to communicate verbally even when they have perfectly normal hearing and strongly dislike to have their routines changed.
• These are the most frequent ones but there may be other signs as well such as plugging their ears when irritated by regular sounds such as that of a blender.
Are there national statistics on Autism?
Not at the moment but it is possible that it is similar to that in other parts of the world where it has been quantified. A systematic review of epidemiologic studies of ASD found a worldwide prevalence of 7.6 per 1000 (1 in 132) in 2010.
Are the national specific government programs/funding/research on Autism?
How does one manage a child/children/adults with autism? How are ASDs treated?
Most children with ASD do not require medications apart from those with Epilepsy, very aggressive behaviour and inattention with Hyperactivity.
Management usually includes occupational therapy, speech therapy and provision of a supportive education and home environment.
Can children with autism attend school?
Yes integrated schools are available and beneficial to such children.
Literature seems to suggest that diet affects the management of Autism, please explain this.
Some children with ASD have allergies to certain foods that are thought to contribute to the manifestations of the disorder. Elimination or restriction of these foods leads to improvement in behavior. This does not apply to all children.
Where can parents with Autistic children get help? Are there hospitals/specialists available? Also, some few names of Support groups on Autism?
Autism Society of Kenya, Autism Support centre, Kenya and several others. Most referral centers in the country have at least one specialist who can help and in some cases a comprehensive team exists in a single hospital.
What if I Suspect that I Have or my child has Autism? What can I do?
See a developmental paediatrician, child neurologist or child psychiatric or a paediatrician with experience in diagnosis and management of the disorder.