By Dr. Yinka Akindayomi
For the last 18 years, I have been totally immersed in the provision of services for children and young adults with autism and other developmental disabilities. Yet I wonder if I am qualified to write on this topic and if yes, is it the fact that I run a centre that provide services and considered an “expert”, or just the simple fact that I have been your mother for the last 28years? I guess it is the combination of all these factors that probably gives me the edge to write from different perceptive, such as being both a mother and a professional.
As a mother, I would be looking at concerns that are much closer to home, like when will you start dating, have a wife, how will you relate to your nieces, what about a job, how will you get into the Nigerian workforce, as a high percentage of young people in Nigeria without disabilities struggle to find employment.
My perspective, dear son, would be to share with others, how we have lived with Autism for the last 28 years, the highs and the lows and what we think the future would be for you. I would like to tell you that I have written a number of letters when you were a child telling all the things Nigerian could and should provide for you and even realise your existence. At that time my views were blurred- being a young mother trying to cope with two other children in a society that was as confused as I was, as to what was autism, its origin and ways to respond to it.
We took great leap of blind faith into the unknown with you, Akinyele, while I will admit, it has not been without great struggle, we have made many great strides, in not only you my son living with Autism but as a family. I consider this a big accomplishment, though community and society is yet to catch up, families like ours need to run this race to provoke a positive response from the community, which will begin supporting and protecting others that are more vulnerable within it.
Although, you are now in your 28th year, yet the years we wrestled on how to educate you, or which was the best way to communicate with you or when will you read a book are not over. I am sure my son, you had wanted to do these things as everyone else and there is still room and opportunities for you to achieve these common activities. Now our priority is to know when you will set up your own family, earn a living and at the same time having a good social network which would love, respect, give you dignity and ensure your human rights. I often wonder about you learning to use a mobile telephone or an ipad to better communicate with us. You deserve a life, no matter how simple others perceive that this life might be; you have the right to choose and contribute anyway you possibly can.
Each year we celebrate Autism month, the question is, what is the significance of this day and how does it impact your life? As a professional, I have recently learnt that there are appropriately 67 million people with Autism with tens of millions of these people live in Africa. While this means my son you are in great company, I am not confident about these figures, as the first fact any researcher will tell you, that most data from Africa is not accurate. While I am not going to debate this, it’s frightening to discover that African children not only suffer from preventable diseases such as malaria, polio, malnutrition children but are more likely to have developmental disorders like Autism.
With ever increasing pressures from families who have children with Autism and other developmental disabilities, there is a need to develop systems and procedures which will take care of children with autism and related developmental disabilities. This is contrary to the present situation which is fragile, unorganised and at times chaotic and also affected by the stigma of having a child with any type of disabilities. Our response to this situation as professionals or otherwise is for every mother who has a child with autism to become service providers and ‘experts.
In all this my son I feel the following are the most important actions that should be taken. First there needs to be a massive campaign about Autism and other developmental disabilities, this should be included in all mainstream child health campaigns. As part of the medical students training, issues of autism and other developmental disabilities should be part of the curriculum. There should be a review of how the principles of Community-Based Rehabilitation could be adapted to assist the children through resources that are available. We must embrace early intervention and work as hard as we can to assist the family and the child through educational programmes and others that are tailored to meet their needs.
Government policies top all of the systems that one might develop, it is important the policies are not only developed but are implemented. The most brilliant act to date is the Lagos State Special People’s Law, although it is not specific to Autism and developmental Disabilities. If this law is expanded to cover other disabilities it holds long term gains. There is a proposed autism bill, which is yet to be passed and I strongly recommend for the society and Government to institutionalize Disability Act, an act that would adequately cater for the needs of broad spectrum of disorders and disabilities. I pray one day such policies will be able to protect you.
Well my son I am not sure you will be reading this but I have put all my emotions as a mother and a professional into this article. I do hope this will help families that are in our situation- I empathize with them and want them and to know we may be moving not as fast as we should, but all is not lost and it is possible to live and survive in Nigeria living with Autism.
Thank you for allowing me to be your Mother as without you I could not have possibly put my best side forward. I believe all is going to be well (another dose of blind faith) and I will live long enough to write another letter to you.
All the best, I continue to love you Mother (Dr. Yinka Akindayomi) Founder, Children’s Development Centre