Reasons for misdiagnosis of Autism in Nigeria

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By JOSEPHINE IGBINOVIA

How has the job been?

Having been at Patricks since 2006, I would say it’s been very fascinating working with children with special needs, especially those with autism. I never knew anything about Autism even though I knew about children with Asperger syndrome, until I got an appointment with Patricks.

Since then, it’s been wonderful because I’ve always been excited about impacting the lives of children with developmental challenges. Fine, it might be challenging working with children with autism because unlike other forms of disabilities, neither the cause nor the cure is known, but with the grace of God and the efforts of our Proprietress, Mrs.Dotun Akande, we’re able to record successes.

We’ve continued with researching online, bringing new approaches to working with these children, attending trainings, training and retraining workers, to mention but a few. The result has been visible because till date, we’ve reintegrated a lot of children into regular school and those children are coping very well.

Was autism evident when you worked with special children for five years  in Ondo State?

I only knew of Asperger then. You see, the level of awareness about autism is very low, even for people on the field and also, medical doctors. Autism is not a medical condition, but a neuro-developmental condition. All the same I’ve gone to government hospitals to find that not all Pediatricians know about autism.

I had to train them.  Fortunately, they were eager to learn! The truth is that you can know more about children with autism when you either have them or work with them. I would however say that the knowledge and experience gained from working with children with special needs gave me an edge in my work with children with autism.

From 2006 when you came into the line till date, has there been an improvement in the level of awareness?

I believe so because Patricks, for example, has continued to create awareness. We have annual awareness events in which we go on the mainland, island, and other areas of Lagos with our banners and fliers to let people know about autism. We also observe the autism awareness month which is the month of April.

Some months ago also, the Association of Engineers had a walk for autism. Graduate students too are beginning to join in the awareness campaign! These days, we have different professional bodies joining in the campaign, and that’s impressive. We’ve also noticed at Patricks that the number of visitors we have on our website is increasing rapidly, and that’s an indicator! Mrs.Dotun Akande too is always talking about the disorder with different media, and I also was on NTA, Superscreen, and a few others, to create awareness.

You noted that some Pediatricians you met knew almost nothing about the disorder; how then do they label its symptoms when they encounter them, or do they diagnose the children wrongly?

Unfortunately, one of the most common symptoms of autism is lack of attention, and that’s what we refer to as Attention Deficit Hyperactivity Disorder –ADHD. However, even though some children do not have autism, they still do not have attention. Because of poor awareness, when these neurologists see children with such, they place them on some medications that make them calm.

Another confusing factor for pediatricians is the general belief that boys have delayed speech more than girls. Unfortunately, delayed speech happens to be part of the signs of autism, and we happen to have more boys on the spectrum than girls! Also, when a child is being hyper and has no attention, some would also tell you he or she would outgrow it.

When these persist, some would place such children on medications that would make them calm. Sadly, these medications have side-effects! For us specialists, what we do with them is activity-based therapy to correct all these things! We do not go by medications at all because though they could make the child calm for a while.  Parents who have tried them always say the child becomes dull and inactive in the long run.

I however believe that the major cause of misdiagnosis is that in Nigeria, we do not have special diagnosis units for autism in hospitals. These exist in advanced countries! This is why we do not label any child as being autistic at Patricks because we are aware that they have not been actually diagnosed by science as being autistic.

This is also why we have it stated clearly on our website that we work with children with autism and other related developmental challenges. So, what we do when we have a new child is that we access, put down the challenges noticed, and put down the recommended therapies that could help resolve the challenges.

I understand that caring for children with Autism could be very expensive; do you have any programme designed to accommodate children from less privileged homes?

In that regard, PSLC has really tried. Our proprietress has put in a lot to help families that cannot afford our subsidized fees. Some pay half while some are unable to pay at all. This hasn’t really been easy for us because we must always have equal number of staff to the number of children in the centre. We have to pay all of these teachers, and also, facilities have to be up-to-date and adequate.

The cost of diesel and fuel is also there! Because we cannot let all of them pay half or not pay at all, we wrote letters seeking for sponsors. Actually, some children from indigent homes have been on our scholarship scheme and a good number of them have been integrated into regular school to the glory of God. If not for the cost of running the centre, we really would have loved to award more scholarships to children from indigent homes.

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