Today I was asked to write an article on autism. For the last 18 years, my son, 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 this article and if yes, is it the fact that I run a centre that provides services and considered an “expert”, or just the simple fact that I have been your mother for the last 28 years? 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.
Let me start as a mother, if you the readers are expecting as a mother I would tell you, who first discovered autism, or whether it is a neuro-developmental or a behavioural disorder or whether there is a cure or recovery, while these are interesting facts, I think your best bet would be to stop reading this article and google the net, as I possible cannot compete with the wealth of information from the million of sources that the internet provides. As a mother, I would be looking at concerns that are much closer to home, like when will you my son start dating, when will you 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 struggle to find employment.
My perspective 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, my son. I would like to tell you my son that I have written a number of letters many years ago when you were a child telling all the things Nigerian could and should provide for you and even realise your existence. These letters must have been in the late 90’s and again as we crossed into the millennium. At that time you were a child and my views were blurred very much, by being a young mother trying to cope against all odds with two other children and handling a society that was equally as confused as I was, as to what was autism, where did it come from and how could we make it go away. I must confess that while Nigeria struggled at times with change, on many different fronts, it has resulted in a slow almost crawling pace, for us to understand and respond to autism
We took you Akinyele and made a great leap of blind faith into the unknown. While I will admit it has not been without great struggle and the light that shines on us continues to be as erratic as the Nigerian Power Holding Company. We have made many great strides, in not only you my son living with Autism but the whole family living with Autism. This is a big accomplishment for the family , though community and society is yet to catch up, but that is okay, 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.
As already mentioned, you are now in your 28th year on this earth, so the years we wrestled on how to educate you, or to decide what was the best way to communicate with you or when will you read a book are not over but are not a priority. 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 it is a question of setting up your own family, having a wife working and earning a living and at the same time having a good social network which would love ,respect, give you your dignity and ensure your human rights. It is also a question of learning how to use a mobile telephone, and even how can you use an ipad to better communicate with us. You, my son, deserve a life, no matter how simple others perceive that this life might be; you have the right to choice and contribute to others anyway you possibly can. Each year we are meant to celebrate the Autism month, to question this what does it really mean and how does just this day or month have an impact on your life. I believe that one month has to be stretched throughout the year. As since the 2000’s there has been an “explosion” of families who have children with autism and related developmental disabilities. My son, I feel there is a need for the society and Government to make some bold steps to have a proper Disability Act that covers all disabilities that is not slanted to any one disabilities, yet takes into consideration the needs of specific disabilities which means Autism and others must remain in our consciousness throughout the year. .
As a professional, I have recently learnt that there exist appropriately 67 million people with Autism, I also read a document that claims that tens of millions live in Africa. While this means my son you are in great company, however I am not sure where these figures are coming from, 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, how it’s a bit scary that African children are just full of malaria, polio, malnutrition with many other diseases, but to crown it all we are compounded with children who have Autism. While I am not in any doubt that Autism and other developmental disabilities are indeed a reality, It is time my son, for better research to look at which Children do have Autism and what do we want to do about it.
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’, while I understand my son, how this has developed, but it has not helped or assisted the situation. Other families have given up and traveled abroad to solve their problems, or other families dart from one country to another looking for the “cure”.
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 as opposed to trying to copy the system that are in wealthier countries. Playing the catch up game is never advisable. As we do not have the capacity to serve our families using the present model that is imported to us. However, 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 our 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, as it is a common joke in Nigeria, no problems about policies of which we have loads, it is about the implementation and the funds to back it, which is usually the Key. Well, the most brilliant act to date, the Lagos State Special People’s Law, while it is not specific to Autism and developmental Disabilities. Definitely, it is a step in the right direction and will be interesting to see in the long term how it is to be implemented and expanded to cover other disabilities. While hot on its heel is a proposed autism bill, which is yet to be passed. My son I pray such pieces of legislation will be able to protect you.
Well my son I am not sure you will be reading this but I have tried my very best to 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, to take heart, and to know that we are moving along, may be not as fast as we should, but to say all is not lost and that it is possible to live and survive in Nigeria living with Autism. My Son 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)