Charity Mbogho, in her 30s, remembers quite vividly the day her son, 10-year-old Luke, was born. His foetal heartbeat could not be found and Charity had to undergo an emergency caesarean section.
The news made her blood pressure shoot up, and the operation was halted until she stabilised. Later, after a successful operation, a nurse told her, “‘Your son was so peaceful, he didn’t even cry’.”
As his first year passed, Charity waited for Luke to hit his milestones – sitting up, walking – on time. But he didn’t.
Puzzled, she took him to a doctor who told her to be patient because “it is normal for the first child to develop slowly, especially boys.” Not satisfied, Charity shared her concerns with another doctor who decided to conduct a CT scan.
It revealed that he had suffered some brain damage during birth. The doctor suggested that autism might be the cause of Luke’s slow development, but without administering additional tests, it would be hard to get a clear diagnosis.
“From the CT scan, we did an MRI. Specialist after specialist, we tried to find out what was wrong. We were given the diagnosis of cerebral palsy, we were told hydrocephalus, rickets… all these were different doctors coming up with different diagnoses, only for the next one to say ‘No, no, no, it’s this one’,” Charity remembers.
Autism, which can be hard to diagnose, is a spectrum disorder characterised by repetitive or unusual patterns of behaviour. A child may display difficulty communicating and interacting with others.
They may repeat an action over and over. A behavioural therapist will be able to diagnose autism using a Modified Checklist for Autism in Toddlers. A team of doctors, including a paediatrician and different therapists, will be able to help in the diagnosis.
Eva Nabutuni Nyoike, 50, a special needs consultant, runs a programme called Acorn Special Tutorials which deals with children with cerebral palsy, Down’s syndrome and autism. “Trauma, whether physiological or psychological (emotional), could trigger autism. Though there is a pattern, nobody knows yet what causes autism,” she says.
Also, a child could have autism and another disorder. “You may also have a child with Down’s syndrome or cerebral palsy and autism,” explains Eva. Luke’s was a case of global developmental delay (where all milestones are delayed) and autism. However, a lot of autistic children do not have this delay and develop as fast other children. The only impairments they manifest are in communication, social interaction and imagination.
One of Luke’s therapists suggested that they focus on the milestones Charity wanted him to achieve. They got him walking despite being told he would never walk. Now, at 10, Luke is fully dependent and nonverbal, but she still hopes he will one day be independent and talk.
Diana Bugutsa, 29, a student at the University of Nairobi, has a brother, Peter Otieno, who is autistic. He will be turning 35 in December. Peter is mostly nonverbal, but he can say his name, say “mama”, and say “lala” (sleep) when he wants to sleep.
She has come to learn that he makes different sounds, however, when he is asking to do something, or just being cheeky.
Using this information, she has come up with a way to communicate with Peter.
Peter’s mother, a nurse who currently lives abroad, noticed that he became withdrawn around the age of three.
Before that, he was a “bubbly kid” and very active. This is called regressive autism, where a child develops normally until the age of about two or three, when they start to regress.
There could be triggers, such as trauma.
LIVING WITH AUTISM
Dealing with the misconceptions about autistic people can be difficult. This is partly because children with autism do not ‘look’ different, as do children with, say, Down’s syndrome.
So when they manifest unusual behaviour, observers assume they are ill-mannered. For example, 35-year-old Peter is “overly-friendly” and always wants to shake people’s hands or fist bump.
Growing up, Diana and her mum often had to explain to neighbours why he could easily get into one’s space “uninvited”.
Meanwhile, 10-year-old Luke seeks solitude, which can be a challenge in places like churches and hospitals.
Charity is saddened when people don’t understand this; she once got kicked out of a church because her son was too big to be in the crèche (an area designated for breastfeeding mums), yet it was the only place he felt comfortable in the church because it is not crowded.
Eva Nyoike runs Acorn Special Tutorials, a programme for children with autism, cerebral palsy and Down’s syndrome. Eva has also had to deal with hostility in her line of work. She and her group of students were invited to a certain church’s ‘Disability Week’.
The congregation did not want to sit anywhere near the children. An usher asked her to take one of the autistic kids, who was grunting, to the nursery – he was 20 years old.
One member even confronted her as she was taking two of her boys to the loo, claiming the children were demon-possessed.
She had to apologise to the kids because she had told them they were going to the house of God, yet they were being shown hatred.
“I was shaking, I was so upset,” Eva recalls. “One of (my) kids took my face in his hands and kissed me on the forehead. I started crying, asking God if this is what they will go through even in His house.”
People judge parents with special needs kids in supermarkets and restaurants also. “You find yourself inevitably trying to make people understand,” says Charity.
One of the most challenging aspects of living with autism is finding trained, committed caretakers.
One of Luke’s nannies used to wait for Charity to go to work, then she would lock him in and go off for her own activities.
One day Charity came home in the middle of the day and found him, mouth unclean from the breakfast he had had.
Most helps are devoted to the patients, though.
Luke’s current nanny even takes his progress as hers, and does all the therapy suggested by the doctors diligently.
People with autism are good readers of vibes people give off. Eva uses this to gauge who a good teacher is when they have trainees over at the school, depending on how they interact with the students.
AUTISM AND DIET
Some autistic patients are unable to break down gluten and casein (found in wheat and milk), and when the gut gets full it starts leaking into the capillaries on top of it.
Once this infected blood gets to the brain, the anomaly is detected, and the brain sends out neurotransmitters to counter this. These neurotransmitters give the person a “high” similar to cocaine or alcohol.
That’s when they’ll start jumping up and down, flicking their hands rapidly, laughing or crying. Their eyes look dazed.
Diana had to get rid of all wheat and milk products around the house, and sugar, for her brother’s sake. The result is a much calmer person.
Even trips to the hospital, which meant he would have to be sat for a time as they waited for a doctor – something that would easily rile him before – are less stressful to him.
However this means that Diana has to enjoy yoghurt, ice cream, pizza, cake or chapatti outside of the home.
Eva adds: “They are addicted to that food because it makes them ‘happy’.
Some children will manifest the behaviours of autism, but are actually suffering from a metabolic disorder (how they break down their food and how the brain gets the food).”
AUTISM AND DEVELOPMENT
As people with autism near their teens, they start to suffer seizures. Eva attributes them to hormonal changes in the body around that time. Medication is available to manage the seizures.
Eva adds that certain supplements and foods can help reduce their frequency. Some people will lose some of their abilities and interests after a seizure, and bring their development milestones down a notch or two.
Luke used to cry after having ‘absent seizures’ (stillness and gazing), but it has now grown to physical and abdominal seizures.
When he gets sick, he loses everything and has to be taught the basics from scratch again. Luke used to play the organ and also paint, but the seizures have robbed him of both.
“He now doesn’t know what to do with the instruments. It’s not easy to watch your child regress to zero.
Then you have to start over again,” Charity says.
Peter’s seizures started when he was 20. He now has grand mal seizures, the frequency depending on how new his medication is – from every four months to every two weeks when the upper limit of administrating the particular drug is reached.
He goes to the loo and takes showers by himself, but before the drugs regulate the effects, he too suffers drawbacks.
LIVING DAY TO DAY
Society judges parents of autistic children harshly. Charity has noticed that most of the parents she has interacted with are single parents, and mostly mothers.
Even when dating, the men are already thinking she might be the problem. Diana says she noticed the same at Peter’s boarding school.
Charity was most depressed when in a programme they were asked to list people whom they would leave their most precious possession to.
She couldn’t come up with a name. Even with family, it is okay when she’s present with them and the nanny, but she can’t think of imposing her child on anyone in their absence.
Whatever happens to her, she believes God will take care of him, because that’s what has been happening all along.
She is contemplating a move overseas, where there are specialists and even government-sponsored programmes to integrate autistic people into society.
Peter is really fast. He caught the interest of the national the Special Olympics coach, but his attention span couldn’t see him go straight from one point to the next.
He likes water, and helps their house help do dishes and wash the house.
“We’ve been doing this for 34 years. Take it one day at a time,” says Diana. She also advises that as parents or members of the family, seeking knowledge on autism and reaching out to others going through the same really helps.