Build Capacity to Fight Autism

About seven years ago my husband met a South African woman who was fascinated by the fact that Nigerians come to South Africa seeking answers and help for their autistic children. She was pleasantly surprised because according to her only a few years earlier, parents of autistic children like herself had to travel as far as Australia seeking help and answers for their children. So, fast-forward back to the present, and it still seems like we haven’t made much progress in trying to establish Nigeria as self-sufficient in the area of care, education and treatment of people on the autism spectrum.

As a parent of a child on the spectrum, I am gravely concerned that still many doctors, pediatricians, nutritionists and other professionals have not built the capacity to cater for the needs of an increasingly higher population of autistic children in our country. Schools and educational institutions have made the most progress, but the progress is still not significant enough, judging by the number of calls and enquiries we get at our Center from parents and families desperately looking for help.

On one side of the problem is not having enough professionals with the capacity to support our children and their families, and on the other is the ever-present existence of people seeking to exploit the desperation that parents often face after an autism diagnosis. So, we have heard of some doctors giving out medicines to children without proper medical and physiological and schools accepting pupils – wearing them uniforms, promoting them from one class to another and collecting fees from parents without taking the due diligence to create a differentiated programme for the children in line with best practices, and ensuring that the children are also learning. We have parents – knowing very little about what to do feeding their children on some foods that may seem normal to the rest of us – bread, rice, milk, etc., but which may end up being harmful to the children, because they cannot get good advice from nutritionists or dieticians or even get enough alternatives when they know better.

To overcome these hydra-headed challenges, I continue to encourage parents to do something, and leverage our own professional experience, expertise and circle of influence to build capacity in one sphere or the other to fight autism in Nigeria. Some of the things we have done and are still working on include establishing an Educational Centre and collocating it with a school to give the children an inclusive learning environment and opportunities for well-planned and implemented mainstreaming, producing educational materials, books and resources to support families, teachers and care givers.

I am encouraged by other parents who have the talent and interest in education who have taken up the challenge by also establishing autism education centres, and a close friend who has set up a shop in Abuja to sell supplies (food, supplements and teaching aids) targeted at autistic children. These are laudable, but there is so much more that can be done. For example, we need to provide more organic foods for our children, so our farmers and budding agriculturists should take up the challenge.

We definitely do not have enough doctors who specialize in or have received proper training and have the proper tools for managing autism related disorders. Our physiotherapists need to position themselves as Occupational Therapists to support our children, and the growing number of Montessori teachers and schools need to realize that the original plan of Maria Montessori’s approaches and tools was for the education of special needs children like our autistic children and not just to provide “fancy” education to the “neuro-typical” children whose parents can afford it. Our hope is that someday, parents of children with autism in Nigeria will not need to fly half-way around the world to look for help (even if they could afford it). The incidence of autism in Nigeria is increasing, and the only way we can cope with autism in our prevailing harsh economic circumstances is to look inward, tap into our latent talent and build capacity and institutions locally to address these issues – and even make a decent livelihood while doing so. There are many myths about autism being an “elitist” condition – there is nothing that can be much farther from the truth than that. The reality is that when you see people convening walks, talks and events for autism and they seem elitist, you are only seeing 20% of those that are afflicted. The other 80% representing the powerless in society unfortunately remain voiceless, and in many situations condemn their children to a life of deprivation and hopelessness. I am not looking for us to build capacity to take care of the elite 20%, I am concerned that if even the so-called elite are struggling to make a headway with this condition, then what will be the fate of the powerless in our midst.

 

Oluwakemi Barrow

Oluwakemi Barrow is the co-Founder of the Thoughtful House Autism Centre, based in Abuja, Nigeria