 Thank you for staying with us. You're still watching The Breakfast on Plus TV Africa. It's time for our second hot topic and we're talking about the available resources for autism in Nigeria. Now, April is known as the Awareness Month for Autism and joining me to have a conversation is Shalaki Azazi. She's a qualified autism services practitioner, supervisor and founder of Cradle Lounge Special Needs Initiative. Good morning and thank you for coming. Good morning. Thank It's lovely. Okay, so we're talking about autism in Nigeria. Now, I know that one of the sustainable development goals for the United Nations is to ensure that, you know, people enjoy health, right? And so since we're talking about health and it's Autism Awareness Month, I think this is such a great time to have this conversation. Yeah, so now there are lots of people who are autistic, even though sometimes you don't know, right? But let's just talk about the prevalence of autism in Nigeria and the awareness of this. So how do we, how do you even know if you are autistic or if your child has autism? So the prevalence of this and the awareness as well. Okay, so I'll take it one at a time. Yeah. So if we're going to talk about prevalence of autism, even if we do not have the right data and statistics, I do know that some research was conducted in 2017. And part of what was concluded from the research, I think by Chinna Nata and also by Dr. Majid Bello was that they identified that out of three out of, I think there's 2.9% of autism prevalence from the study that they conducted in some mainstream schools in southeastern part of Nigeria. And part of what they realized was that there was a big gap in terms of social policy awareness and even intervention resources for autism in Nigeria. So we do have a big gap in terms of intervention and resources. And in terms of prevalence, because we do not have the right statistics, I cannot say this percentage of Nigerians or this percentage of children, you know, fall under these statistics. However, we can say that we have a high prevalence of autism amongst ages two to 18, based on the study that was conducted. Yeah. And what was the second question? Yes, so the awareness, well, that's why there's World Autism Awareness Month, which is April. So the awareness is starting to pick up because, you know, we have a lot of people coming out to talk about it, to, you know, keep bringing awareness to it. Sadly, when you go to the rural area, people still believe that autism is something caused by evil spirit or something. So you still have those kind of, you still have to still keep debunking those myths and, you know, you still have to keep talking about it. We don't have a lot of government intervention in this space to drive the conversation. So, you know, we still have, and that's why I said that we still have a lot of gap with social policies involved in this area. So speaking about debunking myths, I mean, some people would say that on the spectrum, the condition might be a mental disorder, right? Do you think that is true? So it's not a mental disorder. I can understand why they think that, because autism diagnosis falls under DSM-5, which is a mental diagnosis. However, it's not a mental disorder. According to Dr. Belu Majid's research, he did identify that 50% of half of the people that he did the research with, he found out that half of the people with autism also have co-mobility of intellectual disability. And so people can easily think, oh, because you have an intellectual disability, then that means that you're retired or something. But it doesn't translate to you being retired. You can have autism and still go ahead to live a fulfilled life with the proper intervention put in place. So that's a myth that needs to be debunked. It's not a mental disorder. It doesn't have anything to do with your mental faculty of reasoning and all of that. It's just the intervention that needs to be put in place to help you live a fulfilled life. Yeah. I love that fact that at least that is one myth that needs to be debunked, because a lot of people just write with it, oh, you're disabled, you're not thinking well, something is wrong with your brain. And so at least now we're knowing that it is not a mental disorder, you're still fine, you're still okay, and you can live that big, beautiful life that you want. Absolutely. But let's talk about some challenges, because I want to believe that if you're living with autism, there might just be some challenges for the person or even their family members. So what sorts of challenges do these people face? Okay, so there are three major characteristics of autism. You have the social interaction and social communication, you have the repetitive and restrictive behaviour. And so when you have those things, it affects the way I interact with you, it affects my communication pattern and all of those things. So a child or an individual with autism still struggles with how to communicate his needs, is once out to interact with the society. And so that is where the role of intervention, that's the role of intervention. That's what it plays there, because when we are able to intervene in those areas, then the child or the individual can live a complete fulfilled life. But then when we do not have those areas of challenges haven't been addressed, then you see a child that has those issues grow up to become an adult. And because you didn't have any intervention done as a child, you're still growing with those challenges. And those challenges are what now affects the way you view, you interact with the world around you, you interact with your environment. So I was going to ask, obviously interacting with the world, how do you even get diagnosed with autism? So because there's no physical marker, with Down syndrome you have a physical marker, with autism there's no physical marker. So for a diagnosis to take place, you have to do a multidisciplinary assessment. So what do I mean you have your, if you're looking at it from a child's angle, you need your pediatrician, the child's doctor, you need, you need evolution with your speech, your speech pathologist is involved because they have to check, you know, all the apparatus that would, you know, bring about speech, communication, is it functioning? Does delayed speech happen in this sometimes? Well, delayed speech is a sign of autism, but it is not a confirmation that you have autism. You understand what I'm saying? Because a lot of times you see that children are misdiagnosed because you see, oh, I have delayed speech and so automatically I have autism. No, you need a multidisciplinary professional to actually diagnose that you need your speech therapies, you need your, you need your psychologist, you need your, you need a child's doctor to be able to rule out that it's not any physiological issue going on that is affecting the child before you can give a diagnosis of X1Z. Okay, so now if you're going to be diagnosed, right, do you think the Nigeria, the Nigerian healthcare system kind of like support this? Because how many people, for infants, if you go to the rural areas, like we said, some of them will tell you, evil spirits or my village people have come for me and come for my child. But the Nigerian healthcare system, do you think they support, you know, just making sure that you know what is, what exactly is wrong and if your child is autistic, how does the Nigerian healthcare system support this cause? So you see, and that's the conversation we're having and that's why we're driving awareness because a lot of times you have the misdiagnosis that I talked about, you have people that say, oh, you know, once I have my child, I don't go to the hospital until I'm sure, but until I notice that something is wrong. However, with autism, early diagnosis is key. And so you do the, if you're doing the regular milestone checks, you are checking, okay, at this time, my child should be talking, my child should be walking, you know, all those things, if you are really going and following through the system, then you can actually note at what time this is, you know, this, there's something wrong. And at that point, your doctors then refer you for further, you know, checkup or further assessment done and all of that. But a lot of times we don't, we get, um, children coming in for, um, assessment and diagnosis at age five, at age six, do you understand? So they've missed out is when the child is ready for school and then they realize that, oh, the child is not doing as the child should be doing, it's not, you know, functioning in the, in the way. So when is the best time to, to go for that diagnosis? As soon as you notice that your child is not following the developmental milestones set up, set up for the child. For example, children as, um, with notice that you can even start to find markers for autism as young as 12 months. That's just like a year. Yes. Because if, um, I talked about social interaction, I talked about social communication. A lot of times when you say that in public, they are expecting that it's me and you talking or me and you interacting with the environment. But with a baby, if a child cannot track a point and you can't track, that's something you are not interacting with your environment. If I call your name and you don't respond at 12 months, your child should be able to respond to the name. So if I say, oh, Shalakbe and my child is not responding, Shalakbe, Shalakbe, I should immediately know that that is a red flag. And I should be talking to my child's doctor at that point saying, look, oh, I tried to call my child, but he's not responding to his name. And then they are checking to see that I hope it's not something wrong with the ears. That's where you, that's where you have the doctor, the child's doctor checking for physiological signs that is his ear and good, there's nothing blocking it and all of those are the physiological signs. So if they are ruling it out, then they are checking if there's something going on there and then they are immediately, you know, putting that child into another, you know, they are flagging the child for further assessment. So you see how they are trying to catch it early on because once you catch it early on, you can you can put the right intervention in place and that child will thrive. Okay. So let's talk about available resources because that's even what this conversation is supposed to be about. What sort of available resources do we have in Nigeria? Support systems, therapies. I know there are some NGOs just like yours, you know, that are championing this cause and making sure that people who are living with autism leave that fulfilled life. But for the government, we expect the government to be doing something in the healthcare system. So what sort of, what sort of available resources do we have in Nigeria for things like this? Sadly, we don't have enough. And even the very few is like you said. It's quite sad because even your voice went low at that point. You could just hear it. It's not even about your words. Yeah. Because when you look at, therapy is expensive everywhere in the world. And I tell people because they say, oh, no, it's not too expensive. You know, the JAPA syndrome, you see people saying, oh, I'm taking my kids abroad because I want to be able to be the best services. It's available there, but at a cost. You know, but then you know that, you know, to an extent, the government is covering certain costs. But here we don't have, therapy is expensive and you're paying out of pockets. You know, imagine you're telling a mother of four children that two of your children are on the spectrum and then they need support, they need intervention, they need speech therapy, they need OT, they need this, they need that too. And then she looks at you and says, I earn 30,000. I'm sorry. Minimum wage. You know, that's the minimum wage. I earn 30,000. You tell me my child needs therapy. How? And then they say, okay, well, if you go to the public facilities that you can get support. And then they go to the public hospitals, a few of them that have some sort of support that they have, which is maybe speech and whatever intervention that they're giving, they give it once a month or once in one quarter. And then the person has to, okay, for example, I do know that there's a center in Oshodi that offers free speech therapy. But then the time that you have to queue for that service, then the fact that some, it's not, it's not easily available. You have people coming from Badagri just to access that service. In Oshodi. In Oshodi. Wow. And then they will have left their house since maybe four a.m. to make sure that they are there for eight, 10 a.m., 30 minutes appointment. And then the next time they're having another appointment is in six months time or in three months time if they are lucky. Now, they are already, they are disenfranchised because I've come all the way and they are not seeing progress because already they are stressed out. So I think pretty much not enough resources. I think let me just put it that. I just painted a clear picture of what it is like to access even the barest minimum services. Not enough resources. And most times you find out that you have to then now go into private and then private ones are expensive. Right. How many people can afford that? Yeah. And then you have very few NGOs supporting that. But then it's just a lot. Yeah. It's a lot. So what do you think the government can do right now to ensure, even with research and development, because that's also a critical area. Absolutely. So what can the government do right now? What policies, if you were to advise the government, what policies will have to be in place to just ensure that? Because it's one of the sustainable development because in fact, it should be for every nation, every country to ensure that because if you don't have people living, you don't have a nation if you think about it. Absolutely. So if you were to advise the government, what kind of policies would you think they should put in place? I think we need to first start with sensitization. We need to put more policies in the area of first desensitizing what they think of this and then building more awareness. So in every health care facility, for example, things like this should be a common thing, a common discussion. You have health care, each health, I think those units, they would already, as your child, they are following through your child's development. If I had a child here, they're insisting that when you come for immunization, they're checking all those things, because that is how you can even track it easily. They're doing the immunization, they're asking the right questions, they're flagging it down, they're educating those parents, coming in that, okay, these are the things we're checking for because sometimes the parents don't even know what it is that they're supposed to be coming to talk about. Yeah. Or even the checkers, what's the look like? They don't even know what the checkers are. It's when it's like, ah, I can't, you know, but then when you say things, because I'm sure if I tell you social interaction or communication, like I said, you won't even have thought that that is a major thing. But I would say to you as you come in, so when I call your child, does he listen? Does he listen? Those questions. And then it comes with sensitization of the health care units, you know, we're going in, we're talking to them. This is what you're asking for when you see a mother come in. This is how you talk. This is, you know, things like that. And then you go into the school system because a lot of them already in, you know, you go into public schools. Some of them have grown already with living with that. And again, that's another thing because you've locked, you have parents that have locked up their children all through the year. And then now they're adults. You can't lock up an adult anymore. And then the adults in the society and what are the, what are the interventions we're putting in for them? That's a good question. You know, we have adults on the spectrum, what are the interventions, you know, okay, we might say, okay, maybe empowerment or what are the interventions? What are the housing facilities we're putting in place for them? Because again, the parents that are taking care of them, they are getting old, they are going to be left on their own. So it's a lot of things. So that's why I said social policies, you know, to address this issue, government needs to put more efforts into areas of things like that because it's when we do that that we can make it term. I think I understand. I know you're doing your bits as well. You have, you have an NGO that, you know, also help and support. So let's just talk about that as we wrap up. How do you help people, regardless of the government doing their own bits? How are, you know, private people also helping? So what we do is we do a lot of fundraising. I recently did a mini documentary just to show what autism in Nigeria really looks like. So we talk to caregivers, we talk, so we do things like that. I focus a lot of my attention on advocacy. So we go into schools, we talk about autism, we write children's book to help children understand what autism is about. You know, things like that. Those are the kind of things that my NGO do we support. And then when we see families that are struggling with, you know, this intervention, we try to see ways where we can give them, you know, do the stop gap for them just to make sure that they have the barest minimum that they can use to support their children. We also train parents because again, we understand that funds can be limited. But when you as a parent know how to do certain things to help your child within the home front, it makes the job lighter. So those are the things that we do. That is amazing. You are amazing. I want to say thank you for all that you're doing. Thank you. Good work. I wish you all the best. And I hope that, you know, more families are blessed through you and all the other people that are championing this course. Thank you very much. Thank you. All right. That's it for the show today. We've been speaking with Shalaki Azazi. I'm just been talking about the available resources for autism in Nigeria. This is the size of the show. This is where we have to wrap it up. I want to say thank you for having a breakfast with us today. I'll see you again tomorrow. My name is Rumeh Paulson. Have an amazing day.