Dotun Fowora Akande is the foremost autism awareness campaigner in Nigeria. She is the founder of two organisations: Patrick Speech and Language Centre, and Pure Souls Learning Centre. Dotun, against all odds, has established herself as a flag bearer of the can-do attitude. She embodies this mindset that the colour of your skin does not determine your abilities. Dotun came, saw and conquered how autism is perceived and has been, through her organisations, responsible for some of the most effective autism support networks in Nigeria. In this edition of the African Spotlight Series with Biografrica, Dotun delves into the motivation, achievements and challenges.
In 1998, Dotun gave birth to her son Patrick. During his development, she noticed certain age-related milestones were not being achieved. For example, after two years, he couldn’t speak, and so could not communicate emotions, wants or needs. Doctors advised that boys speak a bit late, but this didn’t change even when he turned 3. Luckily, Dotun ran into a doctor friend who quickly identified the symptoms as autistic. The downside to this discovery was that there was little or no support for such disorder in Nigeria, so she was advised to seek support abroad. However, she could not do that for two reasons: lack of financial means and also the fact that they (as a family) were settled and working in Nigeria. The doctor referred them to a speech and language therapist. This was the turning point in her son’s journey to independence. After three years she noticed her son had a flair for numbers and anything technical like Information and Communications Technology
(ICT), even though he still exhibited what she termed “odd behaviour.” Dotun revealed her son would pace up and down, line up shoes in a single file and withdraw from other kids most times. When he turned 5, she introduced him to the piano and arranged for a piano teacher to teach him. She also supported him through music lessons using a structured curriculum. By the time he was about 7 years old, the words had started coming but he struggled through comprehension and was excellent in mathematics. By the time he finished primary school, he was the best-graduating pupil in mathematics.
Now that she saw a clear recovery path for her son and how it all started, Dotun thought it was time to share her story with the world to benefit parents who were in the same situation. Thankfully, she had media support in City People magazine periodically and she was amazed at the number of calls she got each time her article was published. The need to help these parents the way she helped herself gave birth to Patrick Speech and Language Centre. Following that, it was clear a lot of parents could not afford to send their kids to the centre, so she founded the Pure Souls Learning Foundation to support those who could not afford Patrick Speech and Language Centre.
Family Empowerment Outreach
Asked about the exact services she offers through her organisations, Dotun stated that it depends on who is to consume the service because their services are very tailored to individual situations. However, she enumerated some of the popular services which are: speech and language therapy, communication therapy, occupational therapy, music and movement therapy, behaviour modification, vocational services that cater to functional life skills for supporting adults in areas of needs; arts; and educational services where teachers help service users with academic journeys, so they can function in the wider society.
The Importance of Arts to the Success of the Foundation
Dotun stated that children with non-verbal communication skills often use arts to communicate. She explained, “Two years ago, I did IG live with parents and I met one of the artists that exhibited in the last exhibition, who spoke about how her son struggled through school and the only thing the son liked was arts.” Dotun introduced her to arts and advised that she showcases the kid’s (caesar) arts in the next autism awareness day. In Dotun’s words, “he never practised, came in as a talent and sold millions of his works during the exhibition. You see how what the mum thought was negative became positive.” Over the years, Patrick Centre has had a few art exhibitions, including the just concluded 2023 exhibition. “If you are struggling financially and your child’s talents can bring finances which will help you and your child, why not do it?” Dotun stressed. The highlight of these exhibitions is how much sales, in millions, the talents make. If you visit the Pure Souls website, you would see the artwork of these children, and surprisingly none of them is even twenty yet. Three of the artists from the exhibitions later attended Patrick’s Speech and Language Centre, and we met every one of the artists in the community. Some of our success stories are Daniel and Damiloju who have done well and gone back to mainstream schools. Funom was a child under pure souls and the parents also weren’t happy about her art, but she sold a lot during the last exhibition.” Dotun revealed.
The challenge that Dotun quickly admitted is the financial challenge. “No philanthropists in Africa, people want their monies within the family,” she said. Being a small centre in the upper area of Lagos, they struggle to grow and have little or no savings to do things they want to do, but Dotun said they have been blessed even though they are forever looking for funds.
The other major challenge is trust. “The white man gets trusted without skills, but the black man does not get the accolades even when he exhibits the skills.” At the early stage of her foundation, Dotun and the team had the opportunity to use an expatriate to run the foundation, but they decided to acquire the skills themselves. Her very supportive husband encouraged her to go and acquire professional skills and not use their son only as a benchmark. So, in 2005, she was jumping from one training to another, volunteered in several places abroad to learn, and finally came back to share the knowledge with her parents. Another good thing was that they didn’t just base their services on what they learnt, but they allowed the children to teach them how to learn. Because most people forget “every child with autism is different, and you must work with that difference, if not you are going to miss it.” Dotun broke the barrier that if you are not white-skinned, you cannot do the work. The foundation successfully changed the narrative of how autism is viewed in Nigeria. The training helped everybody who now supports autism in Nigeria, as most of them passed through Patrick Speech and Language Centre, and “they have gone to do great things because of the foundation we gave them.” The foundation will be 18 years in a couple of months.
Another challenge is the quick-fix mentality of parents. Dotun regretted that some parents want results as quickly as possible, but they quite often educate them on how things work.
Staffing could be a challenge even though some people have stayed with the foundation for up to 14 years.
Future of Autism In Nigeria
The prevalence of autism is rising. At the moment one in fifty is autistic as against one in one hundred and fifty which was the figure years back when Patrick’s Centre started. Dotun says the future is to continue to unravel what the kids can do and not focus on what they can’t do. She emphasised the need to embrace the difference, as they are not disabled brains but different brains. “We can teach that brain to accept our side of the world and also use the strong nature that they have—focus, attention, honesty, love. If we can channel some of these strengths that they possess into functional life skills, that will be amazing, we will have people doing amazing things out there.” Asked if she would consider extending her services to other behavioural disorders such as Down Syndrome in the future, Dotun says she will purely focus on autism because it is what she knows, breathes and understands, even though she supports a lot of organisations doing other things. Dotun established herself at a time when autism was seen as a taboo in Africa, but she was not afraid to tell her story, and because it is a story of hope (Patrick’s success story, especially in academics being a first-class mathematics graduate and currently a PhD student), Dotun felt the need to use it to motivate other parents, and not keep it to herself.
More Heartwarming Success Stories
Dotun narrated that a young, highly medicated, teenager from Canada came to Nigeria. The first step the centre took was to wean her off medication. The second step was to introduce her to therapy, which provided the environment to channel her energy into basketball which seemed to be her passion. By the time she went back, the parents and psychiatrists could not believe she was no longer on medication. She spent two years with the centre, and this was a typical example of a can-do attitude.
Another success story was a seven years old who received vocational training because she couldn’t make it to academic support. She joined the sewing institute and seven years later, she can sew a dress a day. So it is “finding what they can do and what they can do well, about harnessing the gifts that they possess. That is the beauty of being part of Patrick’s,” Dotun maintained. She believes every individual that walks through that door has something that they can work with.
Collaborations and Partnerships
“Over the years, having gotten requisite training and recognition, we started inviting people to come down to Nigeria to also train and collaborate with us to train organisations, therapists, etc. We had noticed people that we train for a few days use the certificates to look for jobs, and they were using the training as their skill set,” Dotun says. Because this practice was not good enough, Dotun formed a team of professionals, including doctors and therapists tasked with up-skilling people every quarter to make sure people got proper training and work experience. So, they partnered with a board in the US called The International Board of Credentialing and Continuing Education Standards (IBCCES) that “now certifies our training. All the people in the program are all skilled Nigerians, and this has been the biggest partnership that I can think of.” She stressed that this measure was necessary to make sure the people they work with have the skills and the knowledge to make a difference.
Process of Certifying an Autistic Child
To certify children with autism, patients are advised to go to the doctors for diagnosis and when they go back to the centre, they are also asked to do hearing tests because some of the patients tend to “ignore you when you talk to them.” However, the institute can commence with speech development therapy pending when the diagnosis is ready. During the program, they carry out a skills assessment and “based on our assessment we come up with what we call individualised educational plan,” which is the tool they use to work with that child and monitor progress. Asked about accountability, Dotun says only the parents who pay the fees hold them accountable. They also have a reporting program which is outside the country. “Every three months, we literally beg them to come for progress meeting, and sometimes tell them that their children won’t be admitted next term if they do not come for the meetings,” Dotun says on how they get to make the parents attend meetings.
Financial Support for Parents
Parents pay fees out of pocket. We have 48 kids in school and 18 of them are on scholarships. They decided for every three students, one must be free and they have been blessed over time and have been able to sustain it. On how they determine who is eligible for scholarships, Dotun said they have a full scholarship program that they use for indigent families, widows, single parents, and teachers.
Number of People Who Have Passed Through The Foundations
“Hundreds in about 18 years,” she says. Even though 200 or more people have passed through the centre, they serve “a community of over 350 people through a therapy outreach clinic we allow the parents to be the therapists to their children.” Interested parents are added to a WhatsApp group and a specialist comes to talk to them every day on dos and don’ts, and they come back weekly to receive feedback and advise further. Dotun says this support group has people from all over the world, and it is a program run without any affiliation with the Patrick’s Speech and Language Centre.
Most Important Aspect Of Raising Awareness in Nigeria
Dotun explained that the most important aspect of raising autism awareness in Nigeria is to make society accept and believe something can be done to support the child through thick and thin. With this, the likelihood that they will save many more children will be very high. “People should stop attributing autism to witchcraft and religion. Religious people often pray some of these solutions away and allow the parents to wallow in self-pity.”
Goals for the Future for Both Foundations
The goal is to remove the stigma, find opportunities for these individuals to work, and live fully functional lives independent of their parents and siblings, to get them where they can live on their own in the future, just like Patrick (Dotun’s son). She acknowledged it can be difficult to achieve, but it is not impossible. She cited an example of a young man who struggles with communication and had passed through the Patrick Centre and now is a staff member of the centre due to the enormous progress he made. “This gave him more self-worth,” she says.
Plans To Expand to Other African Countries
Dotun is willing to support as many people as possible, to let Africans be Africans, to harness their strengths and “not cower under a lot of undue pressure from the west, to look inwards and find ways in what we can do in our own community because we are unique and therapy can be moulded to meet the needs of your community because you know your community better.”
Message For Parents
The message is: “It is not your fault and there’s nothing you could have done differently, it is not a sin that you have committed. You need to love that child unconditionally and find help and support for that child. Focus on the can, and not the cannot, and you will see that ‘cannot’ become a ‘can’ in a few years, months and days of you accepting.” Dotun further enlightened us that the kids feed off emotions and when parents are not happy, it affects their development. She advised that parents should find a helping hand from someone or a support group of people who have had it before. A few local and global success stories from those who have had behavioural disorders were highlighted. Dotun stated that she sees some of them daily, doing great things.
You can follow the founder on Instagram – @dotunakande