In 1943, the first set of children to be described as “autistic”, were diagnosed. Since then, the disorder has been on the rise. But only little is known about it in Nigeria. The country has no data yet on the actual number of citizens already affected by Autism Spectrum Disorder (ASD). Assistant Editor, Investigations, JOKE KUJENYA, in this report explores the world of some autistic children and young adults.
ON this day, one after the other parents, or their chauffeurs, dropped off the children in their school complex. Time was between 8.00 and 9.00am. But unlike regular schools where pupils converge in the morning assembly to begin the day, autistic children simply sauntered into their classrooms. For them, socialising was not an issue. There were barely any response to the “bye darling, have a great day”, said to them by some of their parents. They had the geography of the school in their heads. They knew where to go. Only about one or two of them were given a slight support from tilting off the path to the school reception. By 9.00am, classes commenced. The students are between the ages of three and 26 and altogether about 55 in number.
Autism largely displays in the affected persons with high intellectual disabilities known as ‘low intelligence quotient’ (LIQs). It is medically described as a complex disorder with myriad characteristics such as: sensory processing challenges, speech/language delays and impairments, elusive social interaction skills and whole child/self-esteem issues. While these four elements may be common to many children, no two or more children with autism are completely alike. Experts note that every child is usually at a different point on the spectrum just the same way as every parent; teacher and caregiver must be, because either as child or adult, each has a unique set of needs.
However, whereas children with autism may look ‘normal’, their behaviours can be puzzling and downright complicated.
And it was wrong to assume that the spectrum affects only children of the rich. It can happen to anybody. It’s not a condition that selects status.
Speaking on the condition, Mrs Dotun Akande, Founder/Proprietor, Patrick Speech and Language Centre, GRA, Ikeja, Lagos, told The Nation reporter, that the incidence is very much on the increase in Nigeria. In her words: “Let me start by saying that the number of autistic persons in Nigeria is rising by one in every 68 births according to rough estimates. It could be more than that. In fact, we have only 55 students because our school cannot accommodate their throng. Based on this, it is necessary for the government to look into it and integrate the situation into what they need to provide for as one of the health conditions that affect some members of the Nigerian populace.”
Akande also added that the condition was made worse due to the absurdity of having to hide these children by their parents. She said: “One, this could be due to their not understanding what the problem could be. So, they feel highly embarrassed by the children, not knowing what people’s reactions could be, as such, they keep them away from prying eyes. However, as the child’s autistic condition grows, the parents’ hassles grow with it. And this is so sad. What we all need to know is that there could be more regular people with visible deficiencies too, so, hiding your child is not the best, but to start seeking help for the child while in the formative years.”
Describing the life of a usual autistic person, she said “The major challenge for a person with ASD, life seems void. Besides being speech impaired, routine is very difficult for many of them. They are barely unaware of others’ existence. They are locked up in their own world preferring only to play with any single object that catches their fancy. Some of them don’t speak. Some are aggressive. Some recoil into their shell. Others weep at the slightest provocation of noise, or sighting of a stranger their ‘spirit’ seems not to connect with.”
According to her, one of the ways to help an autistic child is to catch the attention with pictures, imagery, music, because they do things in rhythmic ways. “They are not the type of people you confuse by introducing new things anytime. No. Don’t be surprised when an autistic person stops you and takes that same thing and do it at a higher level. Now, what that means is that, while verbal communication may not let him or her tell you directly; they will show you that they know what they need,” she said.
The fact that they respond to colours informed why their classrooms at Patrick’s are segmented into Blue, Yellow, Pink, Red, Purple and Speech, Sensory and Music, sections. Akande added, “Each of them is so used to the sharpness of the colours they see everyday such that without being prompted; they know where to go. And when we need to change their class after they have grabbed a particular lesson for a period of time, we don’t just introduce a new thing. We would have been showing them in some little ways, allow them to have seen that thing for some time.”
Music is also used in teaching them body movement and coordination. “If you look at an autistic person, some of them may be really calm. But for the jumpy, restless and aggressive ones, you can teach them ways to re-direct their strength. They are very energetic. And if you try to use force, you can never overpower them. So, your best approach is to use a softer tone provided by a very gentle tone of music. And we have found that to work. Even those that are not listening to you, the moment you get such to the music room and play a sound, in a few minutes, you see him or her calm and give you a smile, or even just sit to listen. We have one who flaps his hands on end as he lets out shrieks of “Waaah”, “Gggrr” or “Ooozz” almost all the time. It took almost one whole year of training to get him re-direct his hands and now, he can beat any kind of drums with those hands. Flapping has completely stopped. All you need to help them is an absolute patient and calm disposition. Never show them any form of resistance or aggression. They are willing to follow if you are willing to lead them with understanding,” Akande observed.
Parenting autistic children
“IT’s not an overstatement life is extremely hard on any family with an autistic child or young adult. You can’t ever predict what each day holds for you,” said, Mr. Wasiu Ogundeyi, an uncle to an autistic child who came to pick him after school. In a chat with The Nation, the father of three children, said, “For such homes, each day is nightmarish. We cannot explain how the condition started with our son. He was talking normally up till about age three on to four. But some time later, we just found that he could no longer communicate as before. And because we didn’t know what it was, we did not know what to do on time till a doctor diagnosed him. After many years of struggles, we brought him to Patrick’s about six years ago, and now, he has really improved than before. At 16, our boy can type a whole book on a computer. He helps himself at home and even opens the car door unaided. He exhibits better intelligence than many of his peers that are regular. He could also be aggressive sometimes, if you give him what he doesn’t like. If you let him alone at such a time, he snaps out of it quite fast. His only snag is talking, but he does a little of that only when he wants unlike before when he doesn’t talk at all.
A qualified Lawyer, Mrs Ekene Ezeji, is a mother of two autistic children attending Patrick Speech. She said “I have five children, three are regular, two are autistic, one boy and a girl. Due to their condition, I am currently a fulltime housewife. Coincidentally, we discovered that something wasn’t totally right about each of them after about 18 months of their birth. With the first autistic child, it was devastating, but less traumatic with the second discovery. With my son, there was an element of denial that oh no, it can’t be. As a parent, the last thing you want is for your child to be autistic. People have explored it, research has been on, on it, but nothing is conclusive yet. And I don’t think at any point, they have fixed the blame on the parents. And thank God I have the evidence of having had three children before and they all ate the same things. So, you can see it from your experience that such does not follow. For my children, they don’t use words and their social interaction was very poor. Now, in terms of social interaction, they are doing very well since we brought them to Patrick’s within the last three years. As a matter of fact, we had to relocate to Nigeria from the United Kingdom (UK), because we are a very social environment, people interrelate here far better than in UK. And my children have really been able to connect with our extended family and they really blossom. Now, they are a bit bolder. Now, my daughter is happy around people and we are all calm and happy with the progress. And she’s really learning to exchange pleasantries by rules. Government has to get involved to make them go to same school as their siblings and well trained teachers that would accommodate them without injuring their senses. Government must show by example that every child is equal.”
One of those that came to pick his son after the school session was Pastor Ajibola Ajayi of New Breed Church, Ogba, Lagos. He said, “Autism is not something we were familiar with, so the early stage was really demoralising. And the uniqueness of each individual autistic child makes the experience of living with autism different for each family. We began getting worried when his younger sibling talked before him. We later realised that there was something unusual about his growth. We didn’t know where the challenges came from. But we still didn’t know what was wrong. We took him back and forth to regular schools but no improvement. Even when we were told about Patrick’s, we couldn’t afford the fee so we went away with our son. It was really distressing. The stability of our home was upturned. Few years later, when we could no longer bear it, we brought him back to this place. Before then, we exercised our faith in Christ believing that He would heal our son, that he would be fine. We were also told to take him to an ENT for brain test, which we did. That cost us so much money. But God told me in a vision to do what is needful. So, we brought him here, and now, he has greatly improved. He communicates and utters some words to express himself. He is fine and you can’t see him and think he is autistic. As for me and my wife, we specifically picked courage when we read that Thomas Edison of fluorescent fame was autistic till he was aged four; and that his mother took care of him.”
Schooling autistic children
IT was a touching moment as The Nation reporter got into the Orange Class. Each class is distinguished by colours. “This helps the students to know where they are going without ‘prompts’,” said Head of School, Mr. Abidemi Yinusa, a career banker turned Occupational Therapy.
On the reporter’s first contact with one of the students, tall, dark and handsome, 31, he said: “I go to Ife”. His teacher, Mrs Tosin Ibimidun, a Clinical Psychologist, who has been working with them for over one year explained: “His ambition is to attend the Obafemi Awolowo University (OAU), Ile-Ife. We don’t know how he picked that up but it’s been his jingle repeatedly. He loves to go to the university but his capability level is low. Though, he is just picking up on the elementary lessons in his academics and quite responsive, he has never forgotten his focus.”
She continued, “Truth is, they are like regular children, the only variation is that they react to things differently. They always want to play and laugh even when it seems not appropriate. One of the boys we have in this class is so smart that even many regular children will have a hard time competing with him in academics. And at other times, he may chose to do things differently so we would have no other choice than to really be patient with him. The boy in question was asked to read a two-paragraph sentence written on the board. He read it in a jiffy. When asked what he wanted to become and why, he said “I want to be a pastor so I can beat other people”. Asked why he wants to beat others, he answered “When I was taken to church, they beat me…”
Tosin, the teacher continued: “Most times they read, but usually don’t understand what they are reading. Some of them learn faster while some of don’t. Some are extremely good with mathematics but not good in English and vice versa. But writing WAEC or going to university is solely their parents’ decision. They tell us what they want for them and we tag along. A parent wants a child to be on probation and that’s what we’ll do. However, we see improvements in them. We may soon ask them to be taken to a regular school and we’ll find a facilitator to guide the child.”
In the Blue Class, there were five teachers to 12 children between ages three and eight. To curb the over-the-top behaviour of the toddlers was a handful job. Their teachers sang to get them ready for the day’s learning, the little children didn’t connect with the singing. Yet, their trainers continued unperturbed. Head Teacher, Blue Class, Mrs. Omolara Idowu, 26, married with one child, said that working with autistic children since 2010 is out of deep passion and it has been an enlightening experience. “This class is the “Reception level” due to the ages of the children. They are like babies. By 9.00am daily, the routine begins. Once settled, we get the children to submit their assignments from previous day lessons. Then, we show them how to hang their bags. On the hangers, we have name tags for those that are able to read, and pictures posted by the hooks for the ones that cannot read but understand visual images.”
Interacting with students in the Yellow Class was emotionally demanding. They are youth between ages nine and 14. Three good-looking youths were being taught how to write “cup”, “boy”, “pencil”, “car” among others at the time the reporter got into the class. On the side was another student yelling on top of her voice out of discomfort that could not be explained at that point. Other voices heard in the class were that of the trainers. Explaining the scenario, Head Teacher, Yellow Class, Mr. Ayansola Muftau, who studied Special Education at the Federal College of Education, Oyo State, with other training in Special Education for the Hearing Impaired for the Deaf, and who has been working with autistic children for about five years, said, there is no big deal about autistic children than to make them function like other regular children and snap out of autism. He said that they are only slightly different from their peers. They are perfect children. It is just that due to their situation, some of them tend to function high while others function below average in terms of developmental age and chronological age.”
When it was time for the students in training to trace out what they were being taught, only a dark complexioned female among them matched an image with its name. “Development age,” the teacher said, “determines a child’s level of maturity. That is what matters when it comes to academics for autistic children. Chronological age is just in numbers. What we do then is to assess the children first before we know where to place them. We use methods in working with them since they don’t function like other regular children. We also use symbols, colours and pictures to make them learn faster as they are more at home with visuals than mere writing. It is important for us to know that their condition is congenital. In fact, some of them could be normal from birth up to the point the condition changes.”
Affirming his point, the teacher said: “I have been working with these ones for about two years. They had been taught arithmetic, not mathematics, because when they came here, they didn’t have any idea about identifying numbers. Now, we have moved on to words when they had grabbed mathematics.”
Another teacher in Yellow Class, Ms Hope Shedrack, who also has been taking classes for about two years, focusing on one child per class, said, “we do this when a child has difficulty with group setting. So we do to calm any of them with her display. However, she could settle well in some other group setting depending on her mood. But in this kind of an activity, I had to take her this way to make her focus on what she’s being taught. In fact, she learns more from one-on-one.”
An Operational Therapist, Mr Benneth Edeh, said, his work is to train autistic children in ‘motor planning’ because most of them have Poor Motor Planning (PMP) which is why they can’t write well. Many of them write letter ‘C’ in opposite direction due to PMP’ because they can’t connect their heart to what they write. To correct these children, you must get to the point that your patience must be stretched but not ‘broken’. And we have recorded impressive success stories, Edeh said: Some of them have even been integrated into regular public or private schools to mingle with their peers. We also do Sensory Integration to develop their five sensory organs of taste, smell, sight, hear and touch, plus tumour, which is internal. For some of them, these senses are not working normal.”
As he conversed with the reporter, an autistic teenage girl kept howling in class. When asked why that was so, Edeh said “it could be she had what we call sensory overload in which her senses could not accommodate all that is happening around us here. Or perhaps, it is the presence of the reporter as something ‘strange’ to her. The fact is her sense cannot carry the noise in this room that was why she was screaming. For regular children, they can accommodate this because their senses are working perfectly.”
Another trainer, Ms Edirin Oghwegha, for about an hour of observation, tried to catch the attention of the 19-year of age autistic student being taught with some visual items. But the student paid no attention. Explaining the situation, “It is not unusual. While it seems the child is not responding, at some point, if you asked him to do anything, he would give the expected response. He is more of a visual learner. What he sees stays longer in his brain. It’s only that he could not express himself verbally because he has speech impairment. He goes for speech therapy, where they do verbal imitation of words with the use of microphone. He often says some words occasionally. We also take him alone, or in a group, to the music class for piano rehearsal to regulate his body movement. And because he has Poor Motor Planning, he cannot use his fingers to write or hold anything. He also has poor coordination. We make him learn how to manipulate the fingers’ dexterity and others. He’s only 19 chronologically, but less than a two year old developmentally.”
Miss Oluwatoyin Ojo, a trained psychologist, with a Master’s degree in Counselling Psychology, handles a class of 10 autistic children. She told The Nation that many times, they exhibit peculiar abilities in disabilities. To effectively work with them, you have to know what each of them can do and build on that. “For instance, one of the girls likes to pray even though she cannot articulate her words. Each morning we come into the class and we ask one of them that only have behavioural challenge to pray; you’ll just hear “In Jesus’ name…” at the start, in-between, she mumbles what no one could pick and after a long pause, she utters “In Jesus’ Name we pray…” to end the prayers. And if we don’t chorus “Amen” and clapped for her, there’ll be tantrums. We teachers even do the clapping most as her peers may not be following. Yet, you see the joyful feeling of accomplishment in her because she had prayed. We also use customised iPads to teach them certain skills and images to make some of them who have problems with sitting down for a long period of time to get calm and settled.”
Yinusa, Head of School, also added, autistic children show God’s hands and help you appreciate Him more because they are unaware of their conditions. He said “People who don’t have this type of children can’t know what they go through. Autism can be mild or severe in the way it presents in the affected child. When it is mild, the child may not have behavioural issues but speech imparity or delay in addition to a bit of isolation from other children. But when it is severe, aggression presents because behaviour could be like a veil blocking you. Before doing anything with that child, you must first get rid of that behaviour. You can’t do a therapy with the child without knowing first if he has a delayed display. Also, you will know from distance if a child has behavioural issues.”
For their Speech Therapist, Ms Funmi Fagbemi, to teach an autistic child speech, you first assess the child, gather your report to coordinate the verbal training. According to her, no single therapy is used for two children. She stated: “If a child has no words at all, we start with mimicking sounds, get them to look into your eyes and give them play therapy in which they are involved in ‘nonsense’ syllables to form meaningful words. When they get used to that word, we move to the next one. It’s stage by stage, not automatic. The orally impaired undergo oral motor exercises that has to do with mouth organs to form the words. My job is to make them function verbally with no prompt. To tell us they are hungry, we use Picture Exchange Communications (PECs). We show the food and follow it by the word, ‘food’ then followed by ‘I want food’ or ‘eat’. When a child gains that, you make him or her to initiate. For the child to be ready for regular school, he or she must have attained a level of speech. Some of them cannot vocalise things, we make them follow a direction to form the word in their heart. So when they see your lips move, that is lip-reading, they understand and follow you.”
Benneth concluded, “We take them to the Sensory room, one child at a time, with his or her therapist and introduce them to the sensory activities. Some of their senses are not functioning normally, they require sensory based behaviour. A child that gets to the class and next minute is crying and wants to leave or sit or gets up instantly may be having sensory difficulties. They have five sense organs plus two, very vital in human development, which we cannot see. They are for balancing, alertness and body awareness. While you are aware of your balancing, they are not; this is what is called PMP. Because they are not aware of their body, they cannot plan their movement and so, write letters in the reverse direction.”
What has become obvious with the Patrick Speech and Language Centre experience is that since 1943 when the first set of autistic children were diagnosed, and recent reports still confirm that the condition is on a rapid increase; not much has been recorded in terms of Nigeria’ government’s involvement to help the children lead normal lives. This development is considered rather unfortunate. Akande reiterated that “This is the time to face the reality and increase its awareness in order to help autistic people lead normal lives and enable their parents understand how to take care of affected persons”.
