• Experts deliberate on ways to achieve action for individuals with condition
By Vivian Onyebukwa
The 2025 edition of Autism Conference organised by Guaranty Trust Holding Company Plc. (GTCO) squarely addressed the challenge of moving from awareness to action, a journey that has been on for 15 years.
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According to health experts, Autism Spectrum Disorder (ASD) is among the diseases that can cause devastation in a family. No one would wish for any of their family members to suffer the ailment. It is a condition that is related to brain development, and affects how people see others and socialise with them. It results in problems in communication and getting along with others socially. The condition also includes limited and repeated patterns of behaviour.
Before now, not many people knew much about the disorder. However, public awareness has grown both in terms of knowledge and information, so people can easily relate with it now. With this much created awareness, experts say it is time to move from awareness to action.
The annual conference which was held across two locations in Lagos; Muson Centre, Onikan and Alausa Secretariat, Ikeja, called for a national shift from mere awareness to deliberate on inclusive action for individuals living with ASD.
GTCO Plc established this initiative for children with the disorder in 2009. This advocacy is part of their Orange Ribbon Initiative, a programme focused on raising awareness and support for individuals with ASD and their families. The initiative aims at preventing stigmatisation and providing support for parents and caregivers.
Chief Executive Officer, GTCO, Segun Agbaje, in his welcome address, emphasised the importance of moving beyond awareness to implementing meaningful support systems. He noted that the initiative has grown into a transformative force in the fight for autism inclusion.
“What started as a simple but focused effort has grown to shape how we advocate, how we listen, and how we respond. This is the foundation upon which the autism programme is built on; one that champions acceptance, encourages early intervention, and advocates for a future where every child is given the opportunity to thrive.”
Agbaje noted that inclusion should extend beyond policy statements or occasional events, noting that the 15 years of the programme is a milestone and a reaffirmation of the company’s commitment.
“It is a reminder that inclusion and acceptance is a responsibility, and that progress is measured not only by policies and programmes but by the everyday opportunities we create for every child and individual.”
The GTCO Autism Programmes offers a wide range of support, including annual conferences, free one-on-one consultations with both local and international autism specialists, panel discussions, and training sessions for caregivers, educators, and healthcare professionals. Reflecting on the program’s growth over the years, Agbaje stated that thousands of individuals with ASD and their families have benefited from the initiative.
“The knowledge shared through our conferences has become a tool for transformation for many,” he said.
Experts advocate ways to achieve action
At the GTCO Autism conference, experts advocated different ways to achieve action. An International Behaviour Analyst and Autism Advocate, Solape Azazi noted that much has been said about awareness, insisting that it was time to take action. Azazi, who is the Founder of Cradle Lounge, and a mum of an 11-year-old autistic boy child, while relating her personal experiences said: “We can do this even from where you are. The government can do a lot by partnering with organisations to make sure that the policies that affect people with autism are implemented.”
She shared her experiences and how her organisation is partnering with a local government to achieve action.
Osezusi Bolodeoku, a behaviour analyst and educational psychologist, came up with the Awareness, Acceptance and Accommodations (AAA) strategy.
“When you are aware of something, it is like turning on the light from darkness. Everywhere is clear, so you now accept that this is what this thing is. When you have accepted it, then you know what to do, which is the accommodations and actions that we are putting in place.”
Bolodeoku noted that there are many questions to be asked. “More research needs to be involved, so there are more actions in the likes of research centres supporting parents further after consultation. In addition to what GTCO is doing, there is a need for all to come together to support parents that have that kind of need. Also, when you discover that your neighbour’s child has ASD, talk to him and help him out. That is the action,” she advised.
Lanre Duyile, board certified behaviour analyst, and adjunct Professor of Behaviour Analysis, expressed worry over the high cost of ASD services.
“They are not cheap. It’s expensive to get therapies and to get them into school. There’s a lot that can be done but the resources are just non-existent. Government is not playing a role. The community is not really playing any role. So what is out there is what GTCO is doing, and then some professionals set up different clinics to provide services. But again, it boils down to who can afford those services.”
Duyile equally believes that the United Nations, World Health Organisation may be able to do something about it. He said that local professionals too might be able to do proposals to those organisations asking for support.
“We are also thinking about beginning to do some research with the work that we’re doing here. GTCO is getting into gathering the data, analysing the data, and being able to use that data to make decisions about where we’re going and all that. So I think things are moving in the right direction.”
A member of one of the panel discussions at the programme titled, “Building Bridges Rashard Dobbins, one of the panellists in the discussion programme, talked about some of the ways to achieve action through arts. According to him, those who are on the spectrum retreat within themselves, adding that it’s important to bridge and create opportunities for them.
Explaining how his organisation achieves that, he said: “What we do through my organisation and through the work that we’re doing is by partnering directly with other community organisations, those who are in the arts, teachers, working families, and finding ways to get resources and share resources with one another. It’s important for our parents to have support.”
He stated the need for collaboration of different genres of arts such as music, dance for communication to make things happen for everybody worldwide. He expressed joy for what GTCO is doing, hoping that it will continue for another 15 years and inspire others to join in that journey whether financially, attracting other doctors and specialists, or even people like himself who use the arts to bring that equity. Then also partners with individuals that are way more qualified than him.
Parents of children with ASD relate their experiences
Some of the parents of autistic children who attended the GTCO Autistic conference and free consultations, related their experiences to Saturday Sun. Kayode Yusuf, said he has two ASD kids who are six and four years old respectively. He shared how he was able to discover their spectrum conditions. “For the first one, he did not speak on time. He was going to an expensive school but we were not really seeing the impact. When the teacher asked us to take him to church, that was when we suspected. So when the second child came, we noticed that what a child is supposed to do at a certain stage, he wasn’t doing it.”
According to Yusuf, it was at this time that they decided to visit a paediatrician who recommended that they should go for an ear test.
“So we did the ear test. It was fine. He was able to hear, but despite that, he couldn’t respond to his name. The time he was supposed to stop using diapers, he was still using diapers. You can’t have a conversation with him. When he was hungry he would use signs rather than say he was hungry. All of these made us suspect that he probably has a spectrum disorder. So we scheduled a meeting with an occupational therapist who assessed both of them, and she told us the first was on a slight spectrum because at that time there were some questions he was asking him. Even though he wasn’t able to write, he was responding. For the second, the paediatrician said he was more on high spectrum and needs special attention. The first has picked up very much. Now he is able to read and write. Not as intelligent as you would want someone of his age, but the problem with him is his speech, which is not very clear. For the second child, he is yet to speak at four years. He still wears diapers. He does not communicate. He would communicate more with signs to indicate that he wants something. Later we got to know that both of them have spectrum disorder.”
Getting support medically and academically has been very terrible, Yusuf said. “For them to start in school we have to get teachers to teach them. Their school threatened to throw them out because they said that their school is not a special needs school. The second one has an eating challenge. He eats over a very long time and he doesn’t eat every available food. He eats some select food. In terms of academics, we pay about a hundred thousand per month to the teachers in their school just to pay special attention to him.
“We are not expecting academic improvement for him, just to pay attention to him. At four, he doesn’t know how to feed himself, so he needs to be fed, except it is something like biscuits, he is able to pick those ones up and eat. In terms of therapy, the services are really not there. When they are there they are terribly expensive. So we really don’t have any therapist for them at the moment.”
He stated three expectations from the government to care for children with autism in terms of education and other things.
“First is sensitising the public. This is something that is not well known. Even if they are known, we still have stigma about it. Second thing is academics. Education is the bedrock of every society. So if we have these many people that have a challenge, then there is a need to make a concerted effort to ensure that the challenge is sorted out. Again, the most important is medical. There is a need to have paediatricians. The first thing the child needs is therapy. We had to leave our private hospitals to go to government hospitals. The two government hospitals we went to were on strike for two years. So the person that was supposed to see my children could not. They kept telling us to come back. That doesn’t help anybody.”
He advised people to realise that it is not their fault to have an autistic child. They need to seek help, and the third thing they would do is to accept it.
Adulhamid Abdulahi is also a father of two spectrum children – a boy and a girl. He said he was able to find out about his children’s condition from their behavioural pattern.
“Expectations and behaviours, when it doesn’t go on line, you start thinking why the child’s behaviour is abnormal. They can learn and do things on their own. One is three years plus while the girl is a year and two months old. Hers is severe. At a year and two months, she looks four months old. She can’t do anything by herself. She can’t move. Hers is complex. It’s more than autism. It has a strong neurological effect.”
Abdulahi said intervention is possible when there is help. “When there is no known cure or support, then there is nothing we can do. She has been on drugs. The GTCO programme has been a lot of support to us. This is my second time attending the programme.”
The GTCO conference witnessed several other experts who also advocated ways to achieve action on ASD. They included Camille Proctor, Public Speaker, Researcher; Ade Otubanjo, speech pathologist; Manshudat Bello Mojeed, Professor of Psychiatry and Public Health Consultant and adolescent psychiatrist.
Others are Bernadette Kilo, developmental paediatrics; Afeez Abdulrasak, early childhood and special education; Camella Hay, board certified behaviour analyst, among others.
The post Our ordeals as parents of children with autism appeared first on The Sun Nigeria.
