1) For our readers who do not know, what is autism?
Autism or autism spectrum disorder is a neurodevelopmental disorder which manifests in significant social, communication and behavioural challenges. The word spectrum reflects the different ways in which symptoms manifest ranging from mild to extreme behaviours.
2) How did you find out your son Zizah has autism and how did it make you feel?
Observing his behaviour and comparing them with expected milestones of children that age (he was about 18 months) .it became apparent that He wasn’t meeting some age-appropriate milestones. He exhibited and lot of introverted behaviours and interests. Things like limited or zero eye contact, inability to point with the fingers, no auditory responses, and a penchant for repetitive behavior like walking on the toes and obsessing over particular items or activities.
We went through a gamut of different emotions from fear, confusion, anger, and a lot of devastation. It’s difficult when your child cannot have the life you imagined for them.
3) What has been the greatest joy in raising your son?
Thankfully there have been a lot of great moments! Times when he is finally able to do simple things that we take for granted after having tried and practiced for so long! Watching him discover his love for art and music and now seeing that talent bloom into what his career or life’s work could possibly be. Seeing him happy despite the challenges he faces daily as a neurodivergent child who has to live in the world – of course there are difficult days as well. but every good day is a blessing.
3) Zizah is a very talented artist, tell us about his career as an artist?
Zizah began to show interest in art from age 3. He also showed signs of having an amazing ability to recall images that he sees (almost photographic memory) hence his nickname @eideticboy. This helped him to draw things he saw around him in detail. He also started playing songs and bits of music he heard by rote, using his sister’s keyboard, until he got his own.
It became obvious that art is his happy place, so we got him paper, crayons, and any other resources he needed. He only started speaking more when he started getting into music and art.
He got better over time. To be honest, we never considered it a career. We just saw it as a means of expression and therapy for him, especially since he was nonverbal. It was just a way of keeping him busy and happy.
One thing we loved to do was advocacy for families like ours and so we decided to use Zizahs art as a tool to show people that there’s ability in autism. We created a profile on Instagram where his artwork was posted, and people started to notice and appreciate his work especially because he’s self taught. This led to his first exhibition at TerraKulture (and hopefully the first of many) where he was able to share his art and earn his first fees as an artist.
Read also: Silvercloud media starts operational base in South-East
4) For many reasons Many children with autism unfortunately go undiagnosed which prevents them from accessing the proper care that they need. How did you notice that your son might need a more specific type of care?
This was very clear from the feedback we got from various visits to doctors who all told us they could find nothing wrong -especially when as a parent, it’s clear that your child is different.
There is also the fact that our country is not the best at having available care, we go through that every day – but fortunately the world is smaller now and a little bit of effort and research can get you very far. It is of course very costly when you consider a lot of occupational therapy, applied behavior analyses etc. and autism sometimes also comes with additional concerns like epilepsy and gastrointestinal disorders – but knowledge does go a long way to teach people what to focus on.
We always make ourselves available to help families like ours.
5) On the African continent, education on autism is close to non which leads to a lot of misconception and almost a taboo when it comes to having open and frank discussions. How do we educate people on how to effectively raise and work with children autism/ add/adhd?
Unfortunately, our society still has a lot of cultural aversion to mental health issues and the stigma that comes with it. It’s important that people first get over that and realize that people on the spectrum are different but not less. Most times if you seek help you will get it. This is the biggest takeaway from Zizahs story.
Today there is a lot more awareness, advocacy, and a lot more materials available for study. The Autism community is very active and very aggressive in sharing information and experiences.
There is a need for more collaboration with advanced countries to help with research and resource exchanges. We need training centers where parents and caregivers can get training and skills that are required.
There are some available now in Nigeria and we have been working on our Haven for Autism foundation to make ourselves available to help families like ours
6) What advice do you have for parents?
Get a diagnosis and seek help as soon as they suspect something is different especially comparing with expected milestones of neurotypical children. Early intervention is CRUCIAL. you can’t lose time! There’s no need to be in denial. The earlier your child gets help, the better their chances to live a “normal” life
For parents whose children have been diagnosed, educate yourselves and know your options. Get the right support from people who are going through the same thing, they can help you make informed decisions and cope through periods. A support system is key
7) Can you tell us about the haven for autism foundation?
Its a nonprofit organisation which we hope will help to improve the life experiences of children and families living with autism through structured activities like art, music, and general vocational activities. Its goal is to provide life enhancing activities (physical and social) and thereby teach real life skills.
The aim is for them to experience music, art, crafts while driving socialisation. This has to happen in a space that is specially designed to accommodate them. we are still working hard to make this a reality, but for now the activities are mostly itinerant
8) Are there communities/ support groups that we can be aware of?
There are many support groups that help overcome challenges of parenting children or even people on the spectrum. For example, there are groups on WhatsApp and Facebook like warrior mums redefined, Autism parents’ association, AutismSuper mums, Autism Nigeria and beyond. There are quite a few communities out there and they are usually very welcoming and open
9) During autism awareness week, what is the one thing you wish people knew about autism? And what is the one thing you wish people would stop saying/
Autism is not a life sentence. Having an autism diagnosis is not the end of the world- a lot of parents are in denial and have a fear of their child being labelled “autistic”. While we all don’t like labels parents must understand that knowing what it is sets you on your way to taking the right actions.
People often say, ” But He doesn’t look autistic”. Well autism doesn’t have a look. You really can’t tell someone is autistic just by their facial or physical features.
They also ask things like “have you prayed “? Its is not a spiritual problem or attack. It is a neuro development disorder.
