Words By- Josephine Agbonkhese

She pioneered the war against autism in Nigeria, and started the nation’s first specialised school for children living with autism in 2006. In the last 14 years, Dotun Akande, a trained economist turned autism specialist, has committed her life to making her mantra a reality for every home that has a child living with autism.

DOTUN AKANDE

Akande who is Founder/Director, Patrick Speech and Languages Centre, began preaching as soon as her five-year-old son living with autism regained his lost speech and mastered the art of playing a piano.

Today, that boy is a First Class graduate of Mathematics studying for his Ph.D in Mathematics, and also lecturing in the US.

The impact of her work has also been felt in hundreds of homes across the country; a feat which has earned her countless recognitions including the WIMBIZ Inspire Me, Wise Woman Power of 100, Vlisco Ambassador 2015 awards and a Cherie Blair Foundation Mentee role.

Akande, an alumna of the Florida Institute of Technology, Geneva Centre for Autism and Mindfields College among many others, speaks with Vanguard Allure in commemoration of Autism Awareness Month observed globally every April.

It took a long time for Nigerians to figure out autism was the real problem with children that were hitherto considered problematic; what’s the situation like right now?
It’s much better than when we started. Right now, more parents are coming on board and we have more facilities in the country. It’s a journey though; not a quick-fix because you have to manage the child daily with every opportunity you get. Training too is constantly going on. Patrick also started a training institute where we now train therapists and parents. This was because, we noticed a lot of therapists were just going around blindly and didn’t really know how to manage these children. We didn’t want to include parents but they insisted they must learn; as if they knew a time such as this would come where they would be alone with the children at home.

Are you saying most parents are no longer in denial?
More parents are now accepting. We still have parents who are in denial and those who will still lock up these children. However, most parents now understand that it’s important they support the child; especially because a lot of families have come out of this much better. They may not be where they expect the child to be, but the child is more functional and can cope in his or her area of strength. For instance, some of them are very good in music while some are very good in arts. So, these are strengths parents are looking more on; they are moving away from “oh, my child must be a doctor, a lawyer, etc.” That is our new goal at Patrick’s and this inspired the establishment of our vocational centre-The Gazelle Studio in 2018.

What happens at that studio precisely?
The Gazelle Studio is a vocational centre that supports individuals in the area of sewing. It’s a very big sewing institute which has been producing table covers, chairs, bags, and more. We’ve also been doing stoning of t-shirts, as well as tie & dye. There, we break the sewing process into different tasks and teach each of these tasks progressively. This process is called chaining. It’s not a graduation-oriented but employment-oriented. So, once anyone becomes good at it, he or she is retained as a staff to begin to earn a salary.

How did you feel when your son was first diagnosed with autism?
I never really thought about whether he would get to a place or not. I just wanted to ensure he gets a good future and normal life. Although, I wasn’t thinking he would be able to go to school. So, I started teaching him piano with the mindset that he would at least, be able to perform at church services and events. I never knew he would eventually come out of autism and be able to live a full, functional life. But as he grew up, we noticed his love for Mathematics. He struggled with other subjects but always had 100 percent in Mathematics. When he finished secondary school, he had all ‘A’s in his Mathematics, Physics and Chemistry, and told us he wanted to study Mathematics.

Where did he school?
He schooled in the United States. You know the Americans are very proactive, so, when they saw his love for Mathematics after his first year, they made him begin tutoring other students; and they were paying him for it. That helped to build his social skills; which is a challenge for children living with autism.

Did you ever envisage he would go this far?
I never thought he would get to this height, honestly. He’s not the only one though. At Patrick’s, we have some of our adults that are doing so well in their areas of strength too. One of our students has landed a role in Nollywood as a lead actor in a film. We have a young lady at our centre now who operates the sewing machine effortlessly too. There had been children brought to me at Patrick’s who couldn’t utter any word at all and who were hyperactive. But in two, three years, they did so well, joined mainstream school and are doing fine today. Their parents too have gone on with their normal lives. That’s the goal of the work I do and of course, the beauty of it.

What are some of the tell-tale signs that a child is autistic?
It’s both very easy and hard to tell. That’s because there are different categories of autism. Autism affects children, from childhood, in the area of speech and communication, social skills (ability to play with others) and behavior (they have odd behaviours such as an attachment to an object). We also have those that are over-sensitive or under-sensitive to sensory stimuli such as sight, sound and touch. Those are things you need to look out for—and it’s not one but a combination of these three.
Others are the inability to withstand loud noise (so they would cover their ears), and the inability to feel the presence of danger. Some children don’t get diagnosed until about age three. Those are the ones that were talking before but suddenly lost speech and also cannot coordinate their steps, in addition to the aforementioned signs.
On the autism spectrum, a child can be mildly, moderately or highly affected. Autism is a difference and not a disease; that’s what I want everyone to know. The beauty of it is also the fact that you can manage these children to a place of excellence. It’s about knowing what makes them tick. With autism, every child is unique; the type of therapy that worked for my son may not work for your own child.

How can a child be diagnosed?
Go to the hospital and tell your paediatrician. If he says nothing is wrong, follow your parental instinct and tell him what you suspect. I remember that in my own case, the doctor said my son wasn’t talking because he is a boy and boys talk much later. He had speech at 12 months but lost it at 18 months. I didn’t just accept what the doctor said; I kept searching until I found a doctor when my son was over age two, who told me he had autism. He told me to get a speech and language therapist and I hired one that was coming thrice a week to our house. I went to his school and told his teacher to teach him for an extra one hour after school. When he was five, I got a teacher to teach him to play the piano. I was teaching every other thing; I was the behaviourist, the self-help skill teacher, and all. Among other struggles, he wouldn’t allow us cut his hair because he couldn’t stand the sound of the clipper. The day we found a barber that could cut his hair, that barber cut his hair for 16 years. He also would only eat two things—beans and jollof rice. Any other thing, he won’t touch. That’s however because some children with autism have guts issues which, if left untreated, affects their coordinating skills because our gut is directly linked to our brain.
Autism is quite complex; you’re not only dealing with speech, behaviour, social interaction and complex, but are also dealing with the biology of the child. Some of them, when they get to the age of 12, 13, due to over-activity in the brain and the fact that their body is producing different chemicals, they begin to have seizures.
Many of the doctors at the Lagos University Teaching Hospital, LUTH, now know about autism because they’ve attended our trainings. So, you can go to LUTH.

In your own case, what did you do since there were no experts and facilities?
By age five, my son started using words and began playing the piano. In fact, I almost collapsed when I saw him playing the piano at his school end-of-year-party. I immediately told myself that it’s possible for these children to actually do well. So, I started looking out for people that have children on the spectrum too; but many weren’t opening up. Between 2004 and 2005, I started going for training abroad. I started with the UK and US. When I came back, I began a column in City People and then people started calling to talk about their children. Eventually, I built and opened-up Patrick’s in 2006. Tayo Aderinokun of GTBank was of great support. We started with about three children.

What’s the most difficult part of being a parent of a child with autism?
The most difficult part is accepting that something is wrong. After acceptance, another thing that affects most parents is expectations. Some have low expectations of the individual with autism. They don’t see the strength in them.

What are their strength and competences?
Their competences are mostly in things that don’t change and which have a chain. So, their competences are in things like Mathematics (1+1=2 and doesn’t change), physics, information technology, drama and more. Our Annual Talent in Autism Show has been a great avenue for them to showcase. They have very high intellectual abilities.

So when you’re not working, how do you like to spend your time?
I like to dance, enjoy myself or watch movies.

Your number one holiday destination?
Dubai. I love Dubai—the scenery and how they’ve been able to preserve their culture in spite of their development, amazes me.

What do you do to look radiant despite the work you do?
I’m very conscious of what I eat. I listen to my body too. I moved away from body creams and started to use essential oils. When I’m stressed, I do a little bit of lavender, put it in my diffuser and sleep with it. That has helped my body, mind and spirit. I pray and meditate too. I also find time to take walks every evening with my husband, especially with this COVID-19 lockdown.

What’s your most priced fashion accessory?
My shoes. I love shoes.

What won’t you do in the name of fashion?
I won’t expose my body for any reason.