Tackling Autism Headlong

Autism is a developmental disorder that has affected families worldwide, including Nigeria. As relevant authorities grapple to confront challenges associated with the disease, Chairman/Founder, Zeebah Foundation, Mr. Nzan Ogbe, at the sidelines of the foundation’s official launch, advised parents to embrace it, seek for help and tackle it headlong. Kasim Sumaina reports

Having experienced Autism himself and its associated trauma, Chairman/Founder, Zeebah Foundation, Mr. Nzan Ogbe has decided to provide the necessary care and support for people living with the spectrum.

Autism is a developmental disorder of variable severity that is characterised by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behaviour. All over the world, there has been an obvious increase in the prevalence of the disorder. More parents and caregivers thus seek quality professional help for their children/wards who have Autism. In the process, they are forced to go as far as Europe and the United States of America in search of quality care and services.

The World Health Organisation (WHO) estimates that one in 160 children worldwide have Autism. According to the Center for Disease Control (CDC) about one in 59 children in the United States of America has been identified with Autism Spectrum Disorder, with the condition being more prevalent in males than females.

The exact cause of Autism is still unknown. However, there may be some genetic factors associated with the development of the disorder. Most importantly, there is a vast array of help and support available to those diagnosed and their families.

The Zeebah Foundation is a not-for-profit organisation whose single-minded proposition is providing care and support for people living with Autism.

Autism or Autism Spectrum Disorder (ASD) refers to a broad range of conditions characterised by challenges with social skills, repetitive behaviors, speech and nonverbal communication.

The foundation is the corporate social responsibility arm of the Levene Energy Group. The founder and chairman is also the CEO of the Levene Energy Group.

Ogbe during the launch of the foundation recently in Abuja, told THISDAY that the Zeebah Foundation aims to offer every child with Autism (and other related special needs and disorders in Nigeria and the rest of Africa) the necessary support and tools such as inclusive education and intervention.

According to him, Zeebah Foundation envisions an Africa where individuals with Autism and their families are educated and supported by local and global communities. The foundation is a passion that is very close to Ogbe’s heart. This is of particular significance to him because he has a child on the Autism spectrum. This is where Ogbe’s passion and understanding for finding solutions to the disorder arose.

Speaking on inclusiveness, Ogbe informed that, “it is all about advocacy, creating the awareness and if you create the awareness people would jump on it; the more brand ambassadors that you have the better for you because when people start to ask the question, it becomes a mainstream discussion and from where we believe that we will get the awareness.

“Advocacy is critical to bringing awareness to this and legislation should be passed that create support for people living with autism in Nigeria because, there is a kind of discrimination and I don’t want to call it a form of disability but they need to be inclusive, our judicial system especially needs to be inclusive. In a lot of schools there is no provision for children living with autism, so they cannot really go to school because of their condition.

“My son is 14 years old and it’s been a long journey and there has been different challenges from trying to find out what his diets are because most people don’t know that there is diet and it is very critical, what children in the spectrum eats determine how they react in a lot of ways. This really prompted me into this foundation.

“So, for I am blessed to be able to give him the best that he can get but what about those that cannot afford it. I feel like I need to give back to the society by creating awareness, by bringing expertise, technology, research where possible from areas where they have gone ahead and bringing it down here, so that we as Nigerians can benefit from it.

“You see, people with autism struggle with social skills, which may make it difficult to interact with others. They might seem shy or unfriendly, but, that’s just because he or she is unable to communicate their desires.

“There are so many incidences. You go to a public place with a child that is in the spectrum and because of many things, in some cases children don’t like taking light, it might make them react violently or something, we are living with it like every day. But, oftentimes, autism brings with it just as many exceptional abilities as challenges. Many people with autism have normal to high IQs and some may excel at math, music or another pursuit.

“My message to the parents is that they need to embrace it, they need to ask for help, they need to seek help, they need to get research. Though, there is not enough data available and if it exists, I am sure it needs to be challenged and to be confirmed.

“So part of what we will do is also try and gather that sort of data and confirm it if it exists and if it is not, we provide it. And parents can come to us, we can support them,” Ogbe assured.

Similarly, the CEO, Zeebah Foundation, Dr. Julie Ejiogu, a clinical director, told THISDAY that it is very difficult to give an estimation on how many children suffer from Autism in Nigeria. According to her, “to do that, it is why we want to venture into research. The statistics are unreliable right now in Nigeria. In estimating, we know that Nigeria is Africa’s most populous nation, I believe it is one in every maybe three or four black people is a Nigerian.

“And if I am to look at that, I can infer that our statistics are high because one in every 59 children in the US based on the CDC projections has autism. 1 in 160 in the world has autism. So we believe that the prevalence is increasing because people are out seeking more help, so we are finding out more. It is not that they didn’t exist before, it is just that people are seeking help now, so that makes it look like the prevalence is much more in recent times.”

She further revealed that the foundation has reached out to several persons but cannot give the actual and exact number, “since our inception up until now because this launch is not when we started our operations, we can say at least a hundred children has passed through our doors”.

Ejiogu, while speaking on the remedy for autism said: “We will not use the word cure but we will say we will teach children to cope with their challenges, we will teach them how to learn because these children need to be taught how to learn, they don’t know, it is difficult. A neural properly developing child you don’t need to teach them how to speak, they just speak but with the children who has autism you have to teach them how to use words, how to have a function of language, they don’t understand that language is what gets them somewhere and until they understand that they don’t use the language and it cost a lot to take care of a child with autism.

“I can tell you that it is not particular to Nigeria, worldwide special need therapy is expensive because you are going to do diagnosis, you will evaluate, you will design a programme for this child, remember that autism is a spectrum, some children needs speech while some don’t, some people need behavioural therapy some people don’t, so it all depends on what the child needs.

“And putting all of these together, it is a lot of money to take care of a child with autism but in terms of the cost in a month I cannot give you an estimate, I actually cannot. And this is why we are doing launching and reaching out to people especially people of high network should look at this as a way to impact society.”

Speaking on discrimination against people with autism, she said, “We should encourage tertiary institutions to put more money into special education studies. Number one; make policies that help people with disabilities generally, not only autism.

“For instance, encourage schools to make plans for an individualised curriculum. Do you know that we do not have individualised curriculum for disabled children? You are made to take the same examination and in fact if you cannot study that is your business, let the government make that a priority in the education sector. Let us encourage the ministry of health to make a law that children should be screened for autism from 18months because in the US that is how most of the cases are picked up. There is a test that you do when they are 18months and you do it again when you are 24months.

“Overseas children have well child visit but here nobody does that, you get your vaccines and you only come to the doctor when you are sick, so we want that. And then encourage people like us, people who are trying to do good works. Of course, remember that in higher institution people study special education.”

Ejiogu, while stating that research has not been able to find out any preventive measure against Autism, however said, “There are a lot of things like diet and it is known that low fat or low casing free diet, casing is the protein in milk, glutine free diet helps, it is not proven to cure it but it helps to encourage blood sugar intake, it doesn’t cure anything but it helps to prevent hyper activities”.