Friday, 8 July 2016

Nigerian society still in denial of autism – Dr. Yinka Akindayomi

Founder of the Children’s Development Centre, Dr. Yinka Akindayomi, speaks with JAYNE AUGOYE about her passion for managing children and young adults with disabilities
Give us an insight into your professional background?
My background is in community paediatrics and I am a specialist in community paediatrics. I graduated from the Lagos Teaching Hospital in 1983 and I studied for a post-graduate degree in the Institute of Child Health under the University College of London. I have been responsible for the development, supervision, fund raising and management of the Children’s Developmental Centre for 20 years.
What informed your decision to study community paediatrics and deal with children with disabilities?

I have always wanted to take care of children, even as a medical student. I have always believed that I would find fulfilment dealing with children. The more we help and add value to our children, the better our society becomes. I was delivered of my son in 1984 and in the long term, we found out that he had autism. While I was in Nigeria at that time in the 1980s,  people didn’t really know so much about the condition. My consultants were also of the opinion that African children could not become autistic as it was considered a misconception.
How could you tell that he was autistic?
When he was about three years, I could tell that there was something wrong even though I couldn’t quite place what it was. He wasn’t like my eldest child; my daughter. And the excuse people gave me was that every child is different. He was trying to develop language and when we thought we would develop language, he fell short.  I recently told a group of parents that if they see their child swipe his or her faeces on a wall, they should take it seriously. My son loved eating a particular type of food and we had to give him as he wanted. Though I was a young doctor, I knew that something was wrong.
What did you do next?
I went to England and we got help, but the diagnosis was awful. The most important person to me at that time was a psychologist. So, I moved to England for a while and left my other children here in Nigeria. I would never have left him alone in England because he would have just been kept in a sheltered programme. Here in Nigeria, he has been able to get work experiences in supermarkets and he has acquired catering skills. He has also visited about six or seven foreign countries. I’m really happy that we have developed a certain programme for adults like him. He lives a normal life as much as possible.
Did you experience any form of stigma?
My family supported me, including my in-laws. I never call them my in-laws because they are a great family. When they began to understand it, then it was no longer a problem. I have been very fortunate and that is why I am still very passionate about this cause.
Despite the level of awareness about autism, do you think our society is still in denial of this medical condition?
I always feel sad at the situation because autism now has a strong voice globally. Before autism came along we were talking about Down Syndrome and Cerebral Palsy. In life we shall always do well, regardless of our condition. In Nigeria, we have this spin that we must always be ahead of our neighbours. We also think that we must always have one advantage above every other person.
Some parents don’t talk about autism and a lot of autistic children don’t do well because of this. We should be concerned with everyone finding their feet within our community and not being in competition with one another. If my child doesn’t go to the university or study Computer Science he is no less my child and it’s not that he is useless. Everybody has different abilities we must appreciate.
Did you set up CDC as a result of the gap you noticed?
Yes, I did. I had to look for a special school for my son when we returned to Nigeria. The few that were available were poorly funded. I then decided to set up a centre that would take care of children living with disabilities. When we started, we were focused on therapy alone and we added the educational component as well. So, it made sense for everyone.
We run a day programme. So, the children come in the morning and go to their houses in the afternoon. This policy has really helped parents because we have realised that they have strong ties with their children, as opposed to if they had just dropped their kids and walked away. I have never had a family abandon their kids here and we have been running the CDC for 20 years.
Tell us all about the CDC’s humble start
I had no money when I returned to Nigeria and decided to set up the CDC. My husband gave me a computer unit.  I am of the opinion that when something is going to happen in your life and it’s the right thing, you will know. I met an African-American who had also started a similar project as mine in America. Someone told her about the work I was doing at the CDC and we began putting things together. She taught me how to put proposals together and she showed me the business side.
The CDC started from a rented apartment in Ikoyi and that was how we met a few of the parents whose wards are still with us. By the time we moved to Yaba, we had about 14 children. Upon noticing an improvement in her son, a parent spoke glowingly about our services. She was a good friend of the then Military Governor of Lagos State, Gen. Buba Marwa (retd.) The latter asked what we wanted and that was how our purpose-built centre in Surulere came into being.
Is there any age limit for the students?
The youngest we have here is 18 months, while our oldest student is about 40 years. It’s a continuous service through life.
Do they graduate?
Our graduation is when a student can get his or her voter card, when they are able to use the Automated Teller Machine card and when you learn how to use your mobile phone. Those are some of the landmarks.
How affordable are the CDC’s fees?
We have a philosophy called high quality, low cost. Regardless of how people define low cost, we have a sliding fee scale such that,  if you can, you can pay more. We also carry out a lot of fundraising and try to match families with high net worth families who can complement the fees of some families who desire financial assistance. Some people don’t pay anything. Ours is a success story because in the last 20 years, we have been able to have an impact on over 2000 children and young adults with development disabilities and their families in Nigeria.
What is your dream for the centre?
My dream is to have a community where adults can live within a community and find fulfilment in life. We are about to sign a Memorandum of Understanding with the Special Olympics. It will provide some form of empowerment for adults with developmental disabilities. They will be taught skills in photography, beading and catering. They will also be able to garner some form of job experience at the same time so we can look for jobs for them.
Tell us about the recently-held Parents Summit, which was organised by the CDC?
Parents have been our major concern in the care and management of their children with disabilities, because it is easily a life-changing experience. As part of the CDC’s 20th anniversary celebration, which has been in the forefront in providing support in all areas relating to child care and services. This necessitated taking a day out to address the challenges that parents, families and care givers face in managing their children and young adults with disabilities, regardless of the type or severity with a review of setting up parent ‘havens’, providing safe environments.
Are you fulfilled?
After 20 years of running arguably one of the most successful centres for children and young adults living with disabilities in Nigeria, the Children’s Developmental Centre has become a reference point for the delivery of high-quality comprehensive, holistic care for its clients at an affordable sliding pay scale system, where children from various social and economic circumstances are able to receive the physical, social and emotional education they deserve.

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