Dr. Yetunde Adeniyi, a child and adolescent psychiatrist and the director of the Centre for Early Development, Learning and Care (CEFLC), in this interview with SADE OGUNTOLA, speaks to the peculiarities of persons with autism and how Nigeria needs to become more inclusive for people living with this condition.

What is autism, and what do you know about the condition in Nigeria?

Autism is a neuro-developmental disorder that affects the development of children. Generally, it affects their speech and communication and social interaction, and they have repetitive behaviours. About two decades ago, there was the belief that autism did not exist in Nigeria. However, there are so many children with autism in Nigeria currently.

According to the World Health Organisation, one out of every 100 children will have autism. We see new autism cases coming in every week. So it’s here with us, and it’s common. It affects all tribes, socioeconomic classes and nations of the world.

How true is it that autism is not a disease?

It’s a disorder and not a disease; it’s a shift from the normal development of children. There are milestones that children are expected to achieve at a certain time. Between 18 and 24 months, for instance, children are expected to start to pick up words and to say things like ‘dada’, ‘mama’, ‘water’ and so on. But there’s a shift from it when children have autism. Some of them don’t talk for a long period. And when they start to talk, they might just say one word or so. So it is a disorder.

Its diagnosis is based on the assessment of the child. It is not through a blood test, x-ray or other medical tests. The mother or the caregiver will be asked several questions, and then the child will be observed. After that, we can conclude that this child has autism. There is a lot of research going on about what to look for specifically, but it is not conclusive yet.

What causes autism? What are the common risk factors for the condition in Nigeria?

The exact cause of autism is not known; it is still under investigation. But there are things associated with it because these are commonly seen in children who have autism. It can be inherited; if a family member has it, the likelihood that a child in that family will have it is higher. Cases of autism in children have also been linked with smoking and alcohol use during pregnancy, problems during delivery due to prolonged labour and problems during pregnancy; maybe the mother was very ill. Other factors include jaundice in newborns, repeated seizure episodes and environmental toxins like mercury and lead released into the environment by industries.

What are the earliest behavioural markers or pointers to autism in children to look out for as parents?

As early as when the baby is in the womb, people may start to suspect that an unborn child might have autism, especially if there is already a risk in the family. Response to sound or music by the baby in the womb is one of the ways that scientists are looking at to suspect autism. But when a child is born, certain things happen in the first few weeks. For instance, there is something that is called a social smile that a child is supposed to have. And that is something that is not very common with children with autism. They might have problems with eye contact, even as early as six months of age. So, one of the earliest signs for most parents is their communication and speech development. They are not responding on time when you call them or calling their siblings by their name.

Some of them have an obsession or fixation with a particular thing. For example, if they like a toy, they just want to go around with that toy everywhere and all the time. You might notice that they are walking on their toes. They might have some other repetitive behaviour, like they flap their hands, spin on the spot, or they like to tap things to make sound, or they take an interest in things that spin, like the tyre. They might also be picky eaters; some of them will accept things like cereal, but wouldn’t eat any other thing. In addition, they don’t interact with people, including their siblings. They prefer their own company and would rather play on their own rather than interact with their peers or with other people around them.

Is walking on their toes, being particular about a toy or being fixated on a particular type of food suggestive of autism in every child?

No, it’s not in all cases. That’s why assessment by a professional to confirm autism is important. Some children just walk on their toes, and after a while, it’s corrected, and then they’re fine. Some children might even have a delay with their speech. It doesn’t mean that they necessarily have autism. But when we do an assessment, we look at the entire situation to say if there is autism or not.

Some people assume that children with autism actually may have schizophrenia, they could be mentally retarded, and then it might also be because their mothers don’t care enough for them or there’s spiritual causation. Are these true?

Autism is completely different from schizophrenia. Schizophrenia happens at a certain point in someone’s life. The person will have been functioning well and would have grown normally, and then they start to have symptoms of hearing voices or seeing things and all that. Autism usually happens almost from birth; there would have been complaints about speech and language development and social interaction. Some children with autism might have an intellectual disability, but it doesn’t mean that all children with autism have mental retardation. Some of them operate at a higher IQ than what you expect for their age; they are talented in different areas of life, like music, the arts, and writing. Some of them are very good at mathematics or arithmetic.

Generally, these things don’t equate to autism. They are different. Sometimes you might have symptoms that look like schizophrenia in autism, but it doesn’t mean that it is. That the mother caused autism or that it is spiritual is a myth. People tend to want to tell them that it is their fault or something that they’ve done or didn’t do that made the child like that. But it’s not correct. A child with autism can come from any family. It’s nothing that has to do with a spiritual attack.

What is the attitude of mothers and fathers towards children living with autism from the work you do?

Many parents are concerned, especially mothers. Fathers tend not to want to get so involved. But most mothers are ready to do anything to assist their children. Some of them have stopped what they are doing as a profession. They’ve taken up other things to help. However, some parents are still in denial of what is going on; they don’t understand the magnitude of the problem. They still want to use different methods. But I know that at some point they settled to say, maybe we should look at what has been generally documented to be useful. But a lot of parents are doing the best they can, given the limited resources that are present in our environment.

How do you treat them?

The core treatment for autism is therapy. There is no medication at this time. Now, some children with autism are on medication for other things. For example, if they have hyperactivity, if they are restless, if they are not settled, there are medications that we can give that can help them to be calm. If they have a seizure disorder, there are medications to treat it. But therapy is the core treatment for autism. These included speech and language therapy, occupational therapy, play therapy, applied behavioural therapy and special educational support. A couple of other things that are coming up include diets and exercise to assist children with autism. Treatment of children with autism has to be personalized based on their needs.

Is the number of children with autism on the increase in Nigeria? Is there any possibility that it is linked to the age of the father and declining sperm quality?

The number is increasing worldwide, and there are a couple of reasons suggested for this. Some talked about increased awareness about autism, and so they are bringing the children out. Some talked about an increase in cases due to the industrialisation of our environment, the greenhouse effect, and increased screen time among children.

The age of the father is also a risk factor that has been mentioned repeatedly in the scientific world. Men who are above 40, before having children, are more likely to have children with autism compared to those who father a child before 40 years.

Many children with autism in Nigeria are left without education. Can they go to school? Can they be like other children?

They are supposed to be educated; they can go to school, and they can achieve a lot if they get the right resources and the right support that is needed. The fact that they are not in school might be a multifactorial problem. Some parents do not know that these children can be in school. Some are aware, and they want them to go to school, but then they don’t know where and lack the resources for it. Some schools will not accept a child if they know that the child has autism, especially if the child has behavioural problems. Every parent with a child with autism should also strive to ensure that they reach their potential in life. Many of them do not have physical disabilities. The standard practice worldwide is that children with autism are to be educated within the regular school. These schools should have speech therapists, behavioural therapists, and special educators looking after those who have difficulties within the regular school. Those with overt behavioural problems might need a specialised place to help them overcome that, and then they go back to the regular school.

What should be done differently to ensure that Nigeria becomes more inclusive for people living with this condition?

Nigeria is a signatory to every document on disability. The problem very many times is that their implementation. It’s getting better, but parents and other stakeholders need to speak up more and engage the government to make sure that things work.

School owners and teachers need to be aware that these children are different, and provisions need to be made to look after them within the schools. That will require training. It will also require that the government have policies in place to guide these things. There should also be subsidies on healthcare or educational services for children with disabilities. Families are still paying out of pocket for their care. It is a lot of financial burden on the families. There should be a welfare package for families who have children with autism and other disabilities so that the burden is less on them. On average, we are talking about N300,000 to get proper therapy in a month for a child with autism. In most cases, treatment is for life. (Nigerian Tribune)