I sit down with Elizabeth Gachie Dunlop, a teacher at Nairobi School. Elizabeth is a mother of three children, a boy and two girls, one who is autistic.
She is all tears after she sees her daughter, 13-year-old Melissa Dunlop, typing words from a book.
“I am shocked! I didn’t know she can do that. She can type! It’s absolutely amazing. When you’re told that somebody will not be able to have any words and now she can type words from a book. It’s simply a miracle,” she exclaims.
Melissa was born in 2001 and was diagnosed with autism at the age of three, after numerous tests that included brain function tests and epilepsy tests.
Elizabeth tells me Melissa used to cry a lot when she was a baby. She made
no eye contact with her and could not speak.
“She never had a sound. There was this time she imitated the sound of bird, ah! That’s when she was two years old…and because she used to cry a lot, people around me tried to understand why she was crying. They kept saying that I didn’t feed her enough. So each time she cried, I had to feed her…and as a result of that she now has a problem eating.”
Even though Elizabeth’s family was very supportive, she admits facing a lot of stigma from some of her friends. “Each time my friends had birthday parties some would send me invites and say, “only the first child can come but not Melissa.”
“I took it personally, I wanted to dislike them. But eventually I stopped seeing them because I learnt that they were not my real friends.”
Elizabeth takes a deep breath. She is still grateful to her friends because their actions drew her closer to her child. She admits she is very protective of Melissa and does not allow her to go to new places alone.
Melissa now attends classes at Kaziora Consultants, a special needs school in Nairobi, where she is taught how to read, write and do other basic things. She enjoys swimming and keeping the house tidy.
Millicent Atieno*(a mother who requested we don’t use her real name) also has an autistic child at the school. She learnt that her child was diagnosed as autistic at 18 months.
“Fortunately, my child’s paediatrician noticed that he delayed in meeting the milestones in certain ages such as talking, walking and pairing two words. It was then that he realised that he is autistic.”
“During that same period, he also recommended that Luther* (not the child’s real name) attends speech therapy so that he can communicate, ” Atieno adds.
She says at two, Luther did not have any eye contact with her, had difficulties making friends and played the same video game repetitively.
“As a mother, I had a feeling that something was off, but I couldn’t put my finger on it. I was also very concerned that he walked later than most kids and was not speaking very well like his peers,” she says. Luther, now five years old, can speak a few words he learnt at the speech classes.
He enjoys playing outside. But he is only allowed to play after he has finished his chores, including eating food, and changing clothes. He is put on a schedule to reduce any form of aggression.
“We call it his reward,” says Atieno. Both Elizabeth and Atieno were able to identify a few symptoms that are associated to autism. Both kids did not have eye contact, could not speak at two and cried a lot.
Parents of younger children cannot tell if a child is autistic or not. Autism revolves around behavioural difficulties, social and communication skills, parents need to look out for the following symptoms: no eye contact, repeating an activity numerous times, playing alone, crying a lot and lack of speech, experts say.
The condition is a neuro-developmental disorder, fully known as the autism spectrum disorder (ASD) as it is viewed as a spectrum going from high functioning to low functioning.
Data from the US Centre for Disease and Control show that one in every 68 children there are autistic. Pooja Panesa, the proprietor of Kaziora school for autistic children in Nairobi, says figures in Kenya could be similar, noting that many parents of autistic children, especially those from rural areas, never really identify the problem.
“This is where we find people who say that when a child has autism, they believe that the mother is cursed, while others say it’s black magic. As a result, the children are tied to a piece of furniture at home while others are beaten by their parents because they think that they are dumb, but what they don’t know is that they are autistic,” says Pooja.
April is the Autism Awareness month globally. Pooja says autism can only be detected when a child is one and a half years old through numerous tests. However, in Kenya, most children are diagnosed at three years because their parents did not see the red flags early.
Some people in rural areas associate autism with witchcraft due to lack of awareness. Atieno and Elizabeth say they were lucky pediatricians identified what was wrong with their children early.
Elizabeth says that the government needs to create awareness about the disorder, as many urban mothers also don’t know about it. “The same way the government is creating awareness on cancer, HIV/Aids, and non- communicable diseases, we would like to see them create awareness on autism so that people can be more aware about it,” Atieno says.
Elizabeth says the government also needs to educate the public on dyslexia so people do not confuse the two.
Dyslexia involves difficulty in reading and interpreting words. A dyslexic child will concentrate on words for a long period compared with other children.
Kaizora Consultants has 15 students and 14 teachers. Out of the 14 staff members, 6 are university graduates. Pooja says the six underwent more training at Kaizora, because most courses offered in universities only focus on counseling and psychology.
“What we add to the graduates is what we call applied behavior analysis. This analysis focuses on the principles that explain how learning takes place. The field of behavior analysis has developed many techniques for increasing useful behaviors and reducing those that may cause harm or interfere with learning,” she says.
Studies are individualised. Each student has their own timetable. Joe Mwenda, a teacher at the school, says the children have different needs. Some have low functioning autism while others have high functioning autism, hence the different schedules.
The timetables have the student’s name at the top and are on hang on a wall. They are placed on a table near the reception where students can check which subject they are having. The subjects include speech therapy, horse riding, Mathematics, English, Computer classes and colouring.
Pooja says that if the government created more awareness about the disorder, more people would be aware of it and find ways to bring up their children.