 Thank you so much for sticking to Y254. My name is Elisabeth Nguena. Our topic of discussion today, as I told you earlier, is on developments made in autism. And in this context, we're looking at, starting from April, that is the Autism Awareness Month, so far, and probably what plans for the future are. So for that, I have two guests with me. I call them two experts. First to me is Dr. Lincoln Kamau, who is the Director of Clinical Research in Autism Light, and close by there's Jessica Heller, the International Autism Consultant in Autism Light. So thank you so much, Dr. Lincoln and Heller, for joining us today. So without, for joining us for this discussion, so let's just get to the discussion. So for this whole time, you, for the media tour that you've been having this whole time to end the training that you have been having, have you seen any impact so far? Well, let's go back, let me start by saying we are glad to be back here. This was actually our first media interview in the month of April, and we are glad to be back. Yeah, we can say we are having a lot of impact in the media awareness we have been doing, the media, the trainings, the trainings and awareness events we have been having in the country. And one reason we would quantify that is we recently had a donor, he's Dr. Guru, he owns the, he's the CEO of the Defti Group of Companies. He's based out of Roiro. He has donated as a philanthropic donor to construct 47 schools in the 47 counties. So you can, by one person coming out and volunteering their money to build such, you can actually quantify, see we are making impact. You have also heard from a lot of parents, teachers, we have, we have gotten a lot of inquiries from public institutions about autism, what's autism, the prognosis. This week, in fact on, yeah, I think it's next week, we are also meeting with PCA Queen Hospital. It's also a private public hospital that's interested in autism work. So yeah, we have seen some impact. Wow, it seems you have been busy since April to date. Yeah. And we'll get, we will get back to the part of the, I would really want to know a lot about this, the donor. But before that, the Kenya Youth, the Kenya Young Members of County Assembly met to discuss on how to improve the conditions of autistic persons. So have, have they helped so far? Well, yeah, we had a motion passed yesterday. The Nyandarua County passed an autism motion yesterday. And on Friday the 5th, I believe, Garisa Assembly passed an autism education motion. That was the first in Kenya and actually the first in Africa. So the MCS from both Nyandarua and Garisa attended the literate. And we are also hearing there. We are hearing in this action from the other 20, 20 county MCAs who attended the event. You know, autism is a, is a, is a, is a, is a cause for concern for all of us. One in 40. The last time we were here, the CDC, the Center for Disease Control in the United States had one in 65 school going kids of autism. Yeah. The statistic changed in May to one in 40. Wow, that is really increasing. We, yeah, so it's, we, we can't just sit and do nothing. It's time everybody in the country did something. And especially those who are in charge of making legislative efforts. Yes. Yeah. And I mean, at autism likes, we are focused really on awareness and inclusion and acceptance. And after doing the retreat in Naivasha with the young MCAs, we have really seen that as soon as people are aware of the issue, there are steps they can then take. OK, well, on that, how many counties showed up for, for a retreat? Yeah, we had about 20 counties. Yeah. Well, what about the other counties that were not represented? What are you planning to do to reach out to them? Yeah, we are planning to get to them, but events like this also reach out to them. OK. Yeah, as much as we want to get to everyone, yeah, these leaders are appointed. These leaders are elected by their people to champion causes like this. Starting. Yeah, and autism is a concern. Autism doesn't just affect the children with autism. Yes. We have research is showing and from our experience, once a kid gets diagnosed with autism, the mothers have to stay home. The mothers, most of whom we are productive in the economy, have to stay home. That it affects everyone in the family, everyone in the county. So as much as we are doing the outreach there, there is a responsibility for these leaders also to come and reach out to us so that we can address these issues. So so far, you can say the outreach has been very has been a success. Yeah, we have been to we have been everywhere. We have been in Kiriti County, Garisa, Kanjiadon, Nyadarua. So yeah, we actually heard from the Kisumu and I think it's Kisumu Rural MP. So we are hearing from all these audiences. And what about the sustainable, the long term sustainable a long term sustainable solution in that from April to date, there's a lot that has been talked about autism. We have been hearing it a lot. So do we have a strategy that will ensure that we're not just going to hear it for maybe a few more months and then that's it. Do you have a long term solution for that? Yeah, like Jesse mentioned, we have both awareness and treatment. Yes. So treatment is where the 47 schools I mentioned that will be built in the counties because we cause that we create awareness, individuals with autism come up. We have to treat them. And that's where the long term. So like now Garisa and Nyadarua that have passed the autism education motions in their public schools, they are going to construct classes for autism. Then we are going to educate the teachers and paraprofessionals how to run kids institutions for students with autism. I mean classes for kids with autism. Then from there it will be a self-sustaining program. Well, right now in Kenya, we are experiencing a corruption crisis. And how first of all, how are you going to ensure that these schools that are going to be set up receive the right to train personnel for that? And also to ensure that the funds given, like I just assumed so many donors will come up, maybe people from the private sectors. We have the government maybe chipping in well wishers. So how well are we going to, what are you going to do to ensure that these funds get fulfilled the intended purpose? You see, we are clinicians. So our primary responsibility is to train on interventions and make sure these kids and these families are getting cutting-edge interventions like we do. We mentioned, I don't know if you mentioned this, but we both work in Boston. So we want to bring the treatments that we do in Boston to our kids here in Kenya. So yeah, we will do due diligence on our clinical interventions. The corruption, how the money is spent, that one is for county administrators and other government officials that's their ball. Well, when we were here in April, we did a number of different trainings. We did a training in FICA for about 50 teachers where we talked to them about different practices that they can use in the schools to help better teach children with autism. We also did another two other trainings with parents to help them understand the best ways to help their children succeed. And so that's sort of where our focus is on making sure that the people that are working closely with children with autism have the right skills and knowledge. Yeah, and coming to that, yeah, there's the point on mothers. We are also doing a lot of training to mothers and fathers of persons with autism and that also ties back to your sustainability. These individuals with autism, they are 24, 7, and they are homes. So we are also doing, we are actually launching a new initiative in the next few months, it will be called Mama Kwa Mama. This is how we'll be able to train one mother, who will be able to train other mothers using a trainer to train a model. So with that initiative, again, we'll be able to lead a lot of audiences and there will be a lot of sustainability. Yes, yeah. So Hela, kindly, can you expand more on the, you talked about the initiative, can you expand more on it, where you are educating people in Thika and mothers, yeah? Yeah, sure. So we did a training in Thika. There were about 50 teachers there that we gave this training to. It was mostly about an introduction to autism, as well as ABA, which is applied behavior analysis. And that is a technique that is used to build skills, kind of slowly and little by little with children with autism, because focusing on some of those smaller achievements is really important. Okay. And then we did, as well, the training that we did for parents. One was with an organization called the differently talented society of Kenya. And then another one was at the Boroburu phase one primary school. And again, we talked a lot about, you know, an introduction to what is autism, what is not autism. There are a lot of myths up there and fighting stigmas, definitely one of the things that we're working towards. Yes, no, no, yeah, yeah, yeah, on that. Have you only been, so far, have you only been able to reach people within and out, like just slightly outside Nairobi, right? Those are the trainings that we did in April. And that was primarily right around Nairobi. But while we are here in these two weeks, we are continuing to do more trainings. And we're going to be going to Garisa and Nakuru and Thamburu, other places that are much further away. Wow, hey, you have a lot of traveling to do. And autism rights is not just the two of us. We have a team in the country. So when we are away back in the United States, like we were for the last one month, we have been able to do trainings out in Kirifi County. We have been able to do trainings in Garisa, Kajiado, Nandaroa. Then we also have individuals, celebrities in the media who have embraced the autism cause. For instance, Eddie Butita has done a very good job with us. He has, when he does his campus tours, he mentions autism, what's autism? Yeah, he has a parade that the audience has spread on their commitment to create awareness for autism. And he has done that in Eldore, at the more university. He has done that in Kabarak, Ijaton, the Kayukat in Georgia, Machakos. In fact, we will be joining him again next week for one of his campus tours. Okay, well, now let's move on to motions. How many have been passed so far? And what is the expected impact? It's just the two, the one that passed in Garisa last week on Friday and the one that passed in Nandaroa yesterday. Okay, maybe we can get, what impact is expected? Yeah, by passing a motion, a county assembly makes a commitment to pay for the education of the kids with persons with autism in the county. Yes. So for instance, Garisa, we are yet to do, we are in the process of doing a survey on how many individuals with autism do we have in Garisa. So now that the county has committed to provide services for them, that's what's expected, they will provide cutting-edge services for each one of their persons from the day they get there, from the day we meet them to up to the time they graduate from their public institutions, from their primary schools or high schools. Yeah. Yeah. We really don't have a moderate search in Kenya. Again, counties like Garisa and Nandaroa, they are doing something that has not been done in Kenya. Yeah, yeah. Primarily, what we do in the United States is a child gets diagnosed with autism. They are counted prejudice to educate them from first grade all the way up to high school. Yes. And they are counted also into us, they get employable skills after they graduate high school. Yes. So nothing has actually been tried of the sort in Africa and I'm very, I'm very proud of the Garisa County and Nandaroa County for embracing this. Yeah. So that's- And yeah, this is what I wanted to ask. We do not have national policies that, you know, address autism and how do we make sure that these kids, these people, the kids or the people that their needs are addressed, you see maybe things like treatment or if someone wants help on, wants help maybe from an autistic perspective, like an autistic person wants help on that side. So what's the plan? Yeah, they are not. There is not a national policy in Kenya, but they are international standards. Okay. And Kenya is not an island. Kenya can also use the international standards. And that's what we'll be, we are doing at autism rights. Yes. At autism rights use standards that are championed by the Center for Disease Control in the United States. So as we embrace them here, the government will come around. In April there was a seminar on autism at this, in a safari park hotel in Sicily, karaoke. The, I think she's the public, she's the permanent secretary in education, was at the conference and she, she pledged to, to work with the DVD, with organizations that pass on to the autism, to ensure there is an autism policy in Kenya. Yeah. Yeah. So that's the works already. Well, hello. There, I can imagine stigma is a lot when it comes to people with autism. And the African community especially perceives that as, if you find someone in your neighborhood who, who is autistic, they think it could be witchcraft, it could be, you know, it could be a curse. So how far have you been able to, through the sensitization, how far have you been able to eliminate the stigma? Or to the misconceptions that come with autism? Yes. Well, we had, we did a lot of work when we were here in April. I think that when we were doing the trainings, that was a huge part of it. You know, hearing some of the things that the parents had to say about what was going on in their communities, and then having us talk to them about what was fact and what was fiction was really important. As well, we did a whole media tour while we were here. And the response that we got from people online and, you know, from people who saw our interviews was really, really important to hear what was happening, hear the questions that people were asking, and really just start that conversation. Yeah. And so, how can society participate in saving people? Who, how, how can society participate in including people with autism and including them in this sense? Including them in the, in the, in the sense that, you know, they, they are able to accommodate them and not making them feel maybe, you know, special or, I don't know the word, not a, yeah, special. Yeah, the stigma. Yeah, the stigma. Yeah, isolated. Yeah, and isolated. How can society participate in driving that? Yeah, I think we can do that as individuals, acceptance, acceptance. And one of the, the reason we do this awareness campaign is to create awareness, you know. You see, as, as people remain ignorant, individuals with autism will be stigmatized and isolated. So it's, this goes back to individual responsibilities. So me, you and everybody else in the studio, if you are open and accepting to persons with autism, and then to, there'll be a, that's how we started. That's how we started. Yes. Yeah. And honestly, it's from, like Dr. Lincoln said, everyone, not only the people who have children with autism in their families, but if you hear about anyone who has a children child with special needs, you know, just offer a helping hand, or just words of support to say that you're there if they need you for anything. Because I think there is that sense here that they need to hide away, you know, and not really bring themselves out into the community. And just being open and supportive is really. Yeah, people get harsh, get judged harshly in the community when, yeah, when maybe they do that you have a autistic kid or someone else with any type of disorder, they tend to be judged harshly. Yeah, unfortunately now it's one in 40, every school going kids have autism. So there's a very high likelihood that every one of us knows somebody or have heard about somebody with autism. They are our brothers, our sisters, our nephews, our nieces. So we can't stigmatize them. We can't shut, we can't just shut them out of the community. We just have to embrace them. And that's why awareness like this is good media personalities like you are doing such a great job in creating the awareness. Thank you. Yeah, we can't just ignore it. And not only the public too, the government needs to come in. Like you mentioned, there is no public policy on autism in Kenya. Yeah. Like we can, I'm very worried when I talk about autism in Kenya because we are kind of rooting at a lost generation. The last time we did a statistical prediction, there are about 700,000 kids with autism in Kenya now, 700,000. And that doesn't include most of the ones who get left at home. Those who get kicked from the public schools and they are just left at home. Those are the ones that have come forward. Those are the ones who have come forward. So we could confidently predict there are 1 million kids or more with autism in Kenya and there is no public policy. Nobody is doing anything about it. So we are going to lose a whole generation if we don't do anything. Yes, that's for sure. So as we wind up, I would want Dr. Lincoln and Hela to just give us a summary of what you see the future of autistic people is. The future for autism is very bright. It's in Kenya. In Kenya, it starts from there. Yeah, it's very bright with the interventions. Research shows autism is not a deathbed. With interventions, individuals with autism can live fully productive lives. As awareness comes into Kenya, people are embracing these interventions. Once the government chips in the MCAs, the presses with the motions and you are able to treat these persons with autism, their future is bright. Of course, there needs to be action from our legislative bodies. I think one of the things that is hardest when you find out that your child has autism is knowing what to do next, where to go, who do you turn to. And I think that I see progress being made in that with more support groups for parents and families and then the work that we're doing to try and make sure that there are places in schools for children with autism as well. Yeah, well, thank you so much for that discussion, at least to have been able to keep track of and to see the developments that have been there this far. And for that, I'm grateful. Oh, sorry. If there are, if you want to know more about the things that we are doing at Autism Lights, you can check us out. Our website is autismlights.org and we're on Facebook with Autism Lights, Inc. as well as Twitter, Autism Lights, Inc. and Instagram. Yeah, and anyone watching out there who is in Nakuru, Samburu, Royal Garisa, Nyandaroa, you are coming there in the next two weeks. Yeah. Well, that's all we had prepared for you today. And thank you so much for staying with us and seeing us and seeing the discussion to the end. In case you missed anything or you would want to revisit this conversation, just go to our YouTube page that is Y254 channel. You'll find this and much more there for you. So until next time, just keep watching Y254 for more amazing programs and youthful vibes. Bye-bye.