6 March 2012

Nigeria: Inside the World of Autism Children


While interacting with Muriel in her classroom, it was obvious she was anxious to go home. Just then, her father appeared. She left her visitor and rushed to hug her father.

Looking at how Muriel rushed to embrace her father, you can't help but see the close tie between the two. Muriel, a pretty nine year old girl, is autistic.

In a conversation with Mr Godwin Atta, Muriel's father, he made this remark: "Muriel is my first child. She is the closest to me out of all my children. I am emotionally attached to her. When I discovered she had this challenge, it broke my heart. And in all the books I have read, they say it is not curable. So, what do I do other than to look unto the Almighty?"

While narrating his ordeal to Daily Trust, Mr Atta says it has not been easy taking care of Muriel. Hear him: "Generally, it has not been easy. You see everyone around you has a normal child, and you keep wondering why yours is different. You keep wondering how you can get her out of the state she is in. You will discover she still has many habits you want to break. Apart from tapping and the hyperactivity, there are certain things she does not want to eat. She is hungry and you just have to feed her. She is above nine, yet sometimes she visits the toilet and starts bringing the excreta and smearing it on the wall. You can imagine how you will be thinking as a father. If you spank her, it still does not solve it."

Atta says he almost suffered depression when he found out about his daughter's ailment, but for the help of the Almighty and The Zamarr Institute.

"I almost went into depression. I felt so helpless. But God has been keeping me on and with the help from the school, The Zamarr Institute, it becomes easier to handle the situation. For the financial aspect, I would not have been able to cope. The school bears all the costs. I'm not paying a dime. She is on scholarship. Then, there are some workshops they go for. For my daughter, it is free. Those are cases for which I lift up my hand and thank God. The school also did something significant for me. The FCT minister gave the school an opportunity for a child to go abroad and it was my daughter they picked. When I think of these things, I relax and say thank you God," Atta says, beaming with smiles.

He has to struggle to cope with frequent embarrassments, though. He says, "I don't visit people too often for the fear of what my daughter may do. When I visit people, I'm always on my toes; I don't want her to break one thing or the other. I don't want her to urinate on somebody's couch, so I hardly visit. I only visit few family members in the city."

But despite all this, Atta confesses his daughter has improved as a result of behavioural and communication skills she learnt from the school. "When we brought her here, she was already above 5 years. She could hardly grab anything, not even a spoon. She can't wear her clothes, she can't hold a straw. Now, she can wash her hands after using the toilet. If there is a meal she likes, she will eat. She likes plantain. She can eat plantain morning, afternoon and evening," Atta explains.

Another parent, a foreigner, chooses anonymity but explains how she knew her daughter had autism. "I did not know that autism exists. When she was 3-4 years, she did not speak. She could not communicate with other people. Then I was working, but when I discovered this, I stopped working so I could give her much time. While I was teaching her, she started improving. When she was in primary 3, I noticed she was not coping like other children; she had behavioural problems like socializing with people and communicating with people. Now, she is 12 years old. I noticed that when she is going to school, she is better. Because it is like routine, because when she is on holiday, it is like going back to the same things again. They always need a 24-hour attention," she explains.

She says her autistic daughter is the first amongst three children. The girl who is now 12 years is plump and hairy, like an Indian lady and has every feature of an adolescent girl.

When Daily Trust enquired from her if her daughter has started menstruating, the mother says no, but that she has started developing breast and other features that lead to a woman's maturity.

When asked if she feels bad about her child's condition, she broke down in tears. She sobbed for four minutes and at the end muttered this wish, "If she can at least live a normal life."

Another parent, Barrister (Mrs) Udeh Oby narrates her ordeal thus: "It has not been easy, but I will still thank the Almighty because it is Him that is giving us the strength. Autism is something you don't bargain for. Nneemeka is a twin. He has a twin sister who is normal. She is in JSS 2. When they were growing up, there was a difference between the two. The sister is very fast in whatever she is doing. She started walking at the age of eight months while Nneemeka started walking two years plus. From then, we started asking questions. People told us different things. We went to the hospital and met paediatricians. It was my husband that said something is really wrong with this child , but we could not say this is it. Until we heard of autism. If you look at him, you cannot see it written on him. My husband read some books and said this child is autistic."

Barrister Udeh explains Nneemeka's experience in mainstream school, saying, "Initially, Nneemeka and his sister were in the same class. But they were not giving him enough care. In the class, they will keep him at the back seat because he will not concentrate and will not do what they ask him to do. He will stay there, eat his food and come back. We will buy books for him, pay school fees, he will take his books and give other children. At the end, they will promote him because of the twin sister. We saw that he was delaying the twin sister. So, we decided that even if they are twins, they must not go together."

However, Udeh believes her son, Nneemeka has improved overtime. She recollects, "Before we came to his present school, there was a school he attended in Gwagwalada. Though he does not talk normally, you can understand what he is saying. And over time, we have been able to relate with him. For instance, when I'm bringing him to school, he knows the route I always take, if I choose to take another way, he will say mummy, you are not going the right way. Also, as soon as we turn to enter the street to his school, he will hang his bag and lunch box around his shoulder. And as soon as I open the door, he will jump out."

Udeh narrates how she has been helping her son to socialize with others in the society: "Though when I take him out, people ask questions, which will not stop me from taking him out anywhere we are going. I notice that if I take him out, if I'm taking him to the same place again, he knows everything about the place. But when I go out with him, it will make me watch him closely, so that will make me not to move around as I wish."

She is hopeful that her son will get better one day as she says he is improving, and she has a piece of advice for parents whose children have autism: "I went for a programme and I met a woman whose son was autistic. The son was about 14 or 15 years but he does not walk well. The boy was looking dirty because they leave him with nobody. I told the woman that if you are leaving this child like this, how do you expect another person to come close to him. I told her that even if she cannot send him to school, she should make sure he looks neat."

She however calls on government to provide schools for children with special needs. "If the government can come out and help, let them have schools like the mainstream schools that everybody can afford. Then, parents will not have excuse for not sending their children with autism to school," Udeh says.

For Ronke Katagum, the Director and Proprietor of The Zamarr Institute, Abuja, her goal for establishing the school is to meet the needs of children with special needs such as autism, Down syndrome, speech defects, amongst others.

This was her passionate remark: "Someone has to do it. Some of our children are getting lost in the cracks. Their needs are not being met. For instance, a child with learning difficulty in a mainstream school, who is being abused of being dumb and stupid will lose his self-esteem and we will probably lose the child. What we offer is such that children with learning disabilities can come here and benefit. What we offer is to teach in a way the child will learn."

Katagum says she had an experience with a child who had Down syndrome when she was 16 years old. "This child with Down syndrome screamed and threw tantrums. You could see she was really afraid. And the other kids saw her and were laughing at her. My heart went out to her and as I grew up, my heart went that way. When I was in the UK, I volunteered to look after some children from a mental institution. My degree is in psychology. I worked part time in schools with children with special needs. I felt let's replicate what I saw there here in Nigeria," Katagum explains.

On how a child with autism can be treated, Katagum says, "They can get better. Autism is treatable in the sense that you make the child manage the condition better. Autism is not curable, but it can go away in the sense that you can teach the child social skills to a certain degree, that he/she can smile appropriately, laugh appropriately, etc."

However, she says when a child is not picking up, it is not for lack of intervention or expertise, but for the likelihood of not having been doing the right thing. The right thing, she says, is developed from the individual child. "It is like they have the raw material, and we fine tune it for that specific child. Each child may be different,"Katagum says.

Miss Oguntayo Oluwaranti Rebecca, a teacher in The Zamarr Institute, says they do behaviour and speech therapy in the school. According to Oguntayo, some don't say anything at all, but when they start, they talk. She gave an example: "Like one child who started saying things we teach them in the class. Such as 'children are you here', 'open your mouth', 'close your mouth'. So we have children that have moved on to mainstream schools from here. We also had a lady that has left here to go learn skills because she was laid-back on academic skills," Oguntayo said.

She however says their progress is always in bits. "If you look at how slow the bits are, you may get discouraged. But at the end of the year, that is when you will see that there is progress. We have a lot of success story, when we look at the different areas we work on. At the end, some can do their basic self-help things, cook and take care of the house," Oguntayo says with a sigh of accomplishment.

However, she is quick to say it is the early intervention that results in this. "When you are conversing with some of them, you know there is something wrong, but you cannot place it. But the most important thing for us is for it not to be visible, not to be able to point out there is something wrong with the child in a crowd," Oguntayo says.

Dr Toju Chike-Obi is the consultant paediatrician, Tabitha Women's Health Centre, Maitama, Abuja. She lets us in on what autism is and what the causes are. She explains, "Autism is a brain disorder of children. It is usually noticed between the ages of two and three years. It is a disorder that has no known cause. The cause is thought to be multi-factorial, which means there is a sort of a brain defect that we have not narrowed down yet which is also affected by genetic pre-disposition to this defect, as well as an environmental impact on that genetic predisposition. This means there is a genetic problem already, then something in the environment during the child's development impacts the child's basic genetic make-up that causes autism."

According to her, autism has three major symptoms. She enumerates them: "The three hallmarks of autism are abnormal communication often in speech and language. They communicate abnormally. The second is abnormal social interaction. They cannot relate socially with people in their environment. The third is that they have abnormal behaviours. So there are certain things you look at to help you make a diagnosis."

Unlike other diseases which you can detect after doing a blood test, experts say there is no blood test that can be done to detect autism. Chike-Obi puts it succinctly: "There is no blood test. It is not like malaria which you can test for. Autism is a diagnosis of evaluation. You evaluate the child to see if they fall into these three criteria. Then you make the diagnosis."

On what parents can do after their child is diagnosed with autism, he says, "The interventions fall into the categories of the three hallmarks of autism. The first is communication-speech and language development. Often, these children's speech is delayed. Even those that are not delayed are hyper communicative. So you can do a speech and language evaluation. Access where the child is, and begin to do the necessary intervention usually in the form of speech therapy."

Furthermore, she says, the second area is in social interaction. "You put the child in therapy where you are helping them with their social interaction. For instance, if you are talking to a child with autism, they are sitting down and not looking at you. They are in their own world, or may just be fiddling with the pen. It is not that they cannot hear you, but they cannot interact with you. So the purpose of early intervention is to teach them those sorts of thing. For instance, a therapist could say when you hear your name, look at me. They have all kinds of behaviour, so you also do behaviour modification. Studies show that a child diagnosed with autism before age three should be having 20-25 hours of therapy per week," Chike-Obi expounded.

She says there is no treatment for autism: "There is no medication to treat autism. The only time it is recommended that autistic children get medication is if there is an associated diagnosis of Attention Deficit Hyperactivity Disorder (ADHD). In that case you will give some certain stimulant treatment to the child to treat the ADHD. But for autism, there is no medical therapeutic intervention in terms of pharmacology."

In Nigeria and Africa, many people attribute autism to witchcraft. But Dr Chike-Obi disagrees, saying, "We don't have witchcraft in the US, yet we have 46 in 1000 having autism , of which boys are more likely than girls. It is not witchcraft and don't believe that."

Chike-obi believes there is need for public education to erode some of these beliefs. "Public education on what autism is, and not just autism but mental health in general, is necessary. It is what is swept under the rug in Nigeria. We hide our relations who have any form of mental disorder. First, there should be a public awareness programme. The stigma of being a parent of autistic child is hard to eradicate. We need advocacy from prominent people who the society looks up to, to help educate the public about autism," Chike-Obi says.

The second, she says, is support mechanism for parents with autistic children. "That is where the government comes in. It should have schools for special needs students. A mildly autistic child can function in a regular school, but they need to be pulled out for the speech therapy. They need to be pulled out for an hour of behavioural therapy. But a moderately to a severely impacted autistic child, needs to be in a special school for special needs," she counsels.

On if an autistic child can grow up to live a normal life, Chike-Obi says this: "It depends on the level of autism. Again, if they are mildly autistic, they can get by with help. They can hold down simple jobs behind the scene. They can be filing Clerks, librarians, and such things."

She encourages parents in one thing: "Be an advocate for your child. Get access to a computer if you can and the internet, and go to a lot of resource areas devoted to children with autism. Learn as much as possible about the disease. Don't get mired in old wives tales and cultural myths of what autism is. Educate yourself about what autism truly is. It is knowledge that is power."

Ronke Katagum sums it up this way: "In my own opinion, a child with autism is better off than a mother/father of the child with autism. They are the ones that hold the worst end of the stick. The parents are the ones that are emotionally traumatised. It is not sympathy they want but empathy. How would you deal with it if you were in their shoes?"

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