 Thank you for staying with us on Y254 News Updates and so we get to the point of a program whereby we get to talk about issues affecting people and tonight we talk about autism awareness and with me today is Dr. Lincoln Kamau, an autism expert with autism lights and Jessica Heela, who is a consultant under the autism lights. Thank you very much guys for really finding time to talk about these with us and my first question will go to you Dr. Lincoln. Can you define the autism disorder for people probably who have no idea about what it is? Yeah, autism is a developmental disorder that affects speech, language and social skills development. We human beings are born to be social. When kids are born, when kids are in their mother's stomach, I mean mothers talk to them and they kind of respond. So when kids are born just two, three, four days they start focusing on their mother's faces. I mean as they develop they are able to run language, they are able to look at their mom's faces and smiles. Kids with autism don't do that, they don't run how to smile, they don't run how to socially communicate, they don't acquire language, so that's what autism is. Okay, so for you Jessica, what is the autism lights? What do you do? What does this organization focus on as far as autism is concerned? Autism Lights is a non-profit organization that's based out of Boston, Massachusetts in the United States and most of their work is done here in Kenya and they're focusing on bringing awareness about autism as well as science-based services and resources to people here in Kenya who have children with autism and have autism themselves. Okay, as I was going through my research preparing for this show, I got to look at different comments or reviews by people that there is no known cause of autism but every disease, every disorder, everything has something that causes it. What would you say is a cause for? Yeah, we really don't know what cause is autism but there is a hinge, autism could be genetic. And the reason we have a hinge, this could be genetic. There are five times as small boys with autism than girls. Research in the United States on genetics has identified about 100 and another research identified about 600 gene mutations that could be related to autism. So we are heading to that hinge as autism being genetically related. So is it probably related to, does it have any other relation to any other diseases or does it have their risk factors to a person living with autism? I mean before they are born there are no risk factors. I mean I tell parents all the time, nothing a mother does before a child is born after the child is born or yeah, nothing a mother does before a child is born when she's pregnant or after the child is born that causes autism. So they are really no risk factors because I mean I hear people saying probably my child got autism because I was drinking when they were pregnant. I was living in this polluted area. Autism affects everyone in regards of socioeconomic status. Yeah, we know kids who live in Mathare with autism. We know kids who live in Boston, New York with autism. So we know kids who live in Shanghai with autism. So it's a common element everywhere in the world. Okay. For you Jessica, for the time that you've been serving under the Autism Lights organization, what is your experience with autism? As far as the autism disorder is concerned, what growth is there because the time whereby people would say that these kids born with autism are probably witchcraft. Sometimes people say these people are cursed and all those things. So how far are we with people having the knowledge and knowing that it's not that these people probably are not supposed to be here. So how have you been able to deal with all that? I mean I think I have noticed and found that there are a lot of myths surrounding autism and a lot of people that really don't understand it. But it's definitely not a death sentence. You can diagnose autism by the age of two and then as soon as you get services kids with autism can make significant progress and really be able to live successful and productive lives. Okay. So can you say that parents with such kids are now coming out and saying that I have a autistic child and I'm willing to help them. How would you say the numbers had compared to times when people would prefer to lock such kids inside the houses and not expose them to the public? I mean that is our main goal with Autism Lights is to bring more and more awareness so that people feel comfortable sharing their experience and being able to get services. Because the earlier you get services the more chances that your child has to succeed. Okay. So now Dr. Lane Kwan. So what about the signs and symptoms? What are the signs of symptoms of the autistic disorder? What can a parent look out for to be able to notice probably early and see how to help their child? Yeah, autism can easily be diagnosed by the age of two and three. The first sign is lack of communication. I mean if you have a four-year-old child who has zero words, who is not communicating, who is not babbling, seek an evaluation. I mean if you have a child who is again who is not giving eye contact, a child who isn't smiling, a child who isn't interacting or praying with other kids, again seek an evaluation from a pediatrician. And those are the key tell signs. One, lack of eye contact. Two, the inability to communicate. There are also some symptoms like what we call stereotypical behaviors, like walking on tiptoes, I mean hand frapping. Those are the key signs of autism. Okay. So is it treatable, can autism be cured? Yeah, autism can be cured. QI is a very strong one. Autism cannot be cured. And I really would like to stress this about curing because there are a lot of quak therapists going out there and telling people autism can be cured. No, autism cannot be cured but autism can effectively be treated. I mean in the United States where I work most of the year, I have been doing this in over 20 years. And we have gotten to treat kids who come to us at 2, 3, 4, 5 and they are now productive citizens in the community. There is an individual I have been working with almost the last 10 years now who just went and started university this spring. So yeah, autism can effectively be treated. Before we get so much into the treatment conversation, I would like to ask you, Jessica, why did you choose to work only on the autism disorder? What pushed you? What motivated you to go and serve under autism lights? Well, I have been working with kids with special needs for about 7 years now. And as much as I feel like all kids with special needs deserve to get the treatment and education, I think that there is a lot of stigma and misinformation about autism. And it is also the fastest growing condition in the world right now. So I think that it really deserves to have someone work hard to make sure people are aware. Okay, so Dr. Lincoln at the treatment we have therapy, we have medication and we have specialists. So what type of therapy works for what symptoms? The first thing is assessment. So when you know what your kid needs, then consult the actual experts. So if your child has speech and language deficits, consult a speech and language therapist. If your child has sensory needs, consult an occupational therapist. Of course there are individuals out there again who are selling the quak therapies, kind of that don't work. For instance diet interventions, stem cell interventions, those are interventions that are out there in the market that have no research to it. So the most effective interventions are educational interventions. Because individuals with autism skills, they are deficits that they display. So we came from a conference in Thika this morning where we were working with teachers on teaching interventions. For instance if your child doesn't speak, of course you need to put interventions. Interventions must be very specific to the deficit. So now when we talk about therapy, if probably your child does not speak, you go and look for a speech therapist. At the autistic kids or autistic persons always under medication. At what point does one probably go off or have to get medication? Actually there is no medication that works for autism. So what happens with autism? There are secondary characteristics to autism like hyperactivity. So there is medication like Gryspador that is prescribed by most doctors. But it doesn't treat autism, it treats the secondary characteristics. So in the United States actually the Food and Drug Administration hasn't approved any medication for autism. The FDA approves all drugs that have to be consumed by the public in the United States. We don't have such an agency here. But going by the FDA recommendations we really do not have medications for autism. We know that April is a month dedicated to autism awareness. And we know second is a World Autism Awareness Day. So what events Jessica do you have? What have you planned? What events do you have? What plans do you have to make sure that you pass the right message that you wish to pass to people? I mean we have come here all the way from Boston with a full schedule of events. Like Dr. Lincoln said we did a teacher training earlier today in Pika. And we have a couple other parent trainings as well as media appearances. So what is your focus? Because you're here in Nairobi and you're dealing with parents and teachers who are dealing with autistic kids in the city. What about someone in the rural areas? How do they get helped? How do they get to assess your information that you have with them? That's a great question because those are some of the areas that are going to be the places where it's most difficult for parents and children to get the services that they need. So that's why I think we're doing as many media appearances as we can so that people can see us and learn about autism so that they're more educated on what they can do and the best practices to help their child. So Dr. Lincoln we know that it is different when dealing with a kid with a young person with autistic disorder and when dealing with an adult. So how do you create a balance? How do you know what to say? How to probably these people do not like touch, they are not so good with touch. So how do you get to deal with these people without making them feel uncomfortable? That intervention starts at a very early age. So when you start interventions when one is an individuo, when one is a retro kid you'll be able to desensitize them to issues like touch, personal space and issues like those that are challenges. And you bring a very good issue here. We had an event at the bombers of Kenya this past Sunday and we were able to come across parents of both retro individuos and individuos way up into the 21s. So there is a very big service divide within these two populations. And that is not only here in Kenya, that's a global phenomenon. We have very good services in most places for the 2 to 18. But past 18 we really don't have anything. I mean I don't think that's for parents or individuos like us to do. I think that's where we challenge our government to come in and put services. I was actually getting to the point about how can the government come in and help in making sure that these people living with autistic disorders can assess whatever it is that they want to assess, can be able to live like a normal person, can be able to work and all these things. Oh no, what do you think the government can do to make it better than how it is right now? Yeah, the government needs to put in place resources. I mean we did a training with teachers this morning and they complained how retro training they get. We met the teachers on Saturday. Everywhere in the world in the country we are hearing the same things. We are not trained, we are not trained. And a very good example, for one to be able to work with kids with autism, you have to be a board certified behavior analyst. Unfortunately we have only two in Kenya. We have only one level board certified doctor or level clinician, that's me. Again these are skills that can be trained. I mean there are some universities in Kenya that universities in the United States have tried to form collaborations. But they didn't go through the due to lack of government involvement. So governments need to provide resources, governments need to provide training both for teachers and for the parents. Okay, so Jessica what opportunities are there for autistic persons, these are autistic persons. I have this talent but where do I get to showcase my talent? Where do I get to showcase my skills? So let's talk about opportunities and how can they tap them? People with autism have many skills and many talents. And they are more than capable of working and finding places where they can succeed. So most of the time people with autism work best in a position that has a lot of routine and has very repetitive tasks. So if there's a position like that you can find that would be the best. Okay, so are there any issues with diet to autistic persons? Is there something they should not eat, is there a type of medication that probably they should not consume? No and this is a question that comes up over and over again. Again I put that back to the quack therapies out there. I mean a lot of parents with autism are spending so much money on places where they should not. Unless your child has some gastrointestinal issues there is no need to use a diet intervention. Going back to autism is a skills deficit. So if your child has autism get some educational interventions. I mentioned this in Vika this morning. And your child can eat all the bananas they want or all the wimby fraud they want but that won't teach them skills. Okay, so now for parents living with autistic children, whether it's a child or an adult, now what advice would you give to these parents to be able to push their child to become a better person, to become someone who is needed in the society and someone who can contribute to the growth of the society? I mean one of the best things that parents of children with autism can do is seek help from a professional. That way the professional can help a parent learn how to help their child build skills and asking for help can be a really hard thing but it is definitely the best. Okay, stigmatization. This is something that comes with a lot of things that happen. So how now do we try to get rid of stigmatization to make people understand that this is not a curse, this is not a witchcraft, this is a person who needs love, this is a person who requires to assess certain resources as you do. How do we get rid of stigmatization as far as autism is concerned? That's what we are doing here, creating awareness. As individuals become more aware of what's autism and what's not autism, acceptance will become an issue. They will just begin to accept. And autism is a very fast growing disability like Jessica mentioned here. One in 65 school going kids of autism. So there is a very high probability of everyone knowing a child with autism. So as we learn to, as more kids come up with the diagnosis, who are our siblings, our brothers, our nephews, acceptance, acceptance, people will begin to accept this. And with acceptance the stigma goes away. Okay. So Jessica, with the Autism Lights Organization, what achievements have you guys made so far? Well this is the second time that Autism Lights has sponsored a trip here for Dr. Lincoln. It's my first one here in Kenya. Okay. But so we have had more and more events scheduled each time that we have come back and worked here to bring more awareness about autism. We also have a lot of trainings that are being offered online for people to be able to learn more so that they're educated. Probably you could give the sites. Maybe sites, you've talked about people being, this educational information being offered online. Would you give a site where probably someone who is interested can go to? Yeah, you can always check the Facebook page for Autism Lights Incorporated as well as Autism Lights.org. Okay, before I cut you short you on something. Yeah, we also, about two years ago, rather three years ago in 2016, we published this menu. It's called the Parents Guide for Autism Parents in Kenya. It's also available on our website and it addresses all these issues from my child has autism, what do I do as a parent? How do you take care of yourself? We address the stigma, all these issues. It's about a 36 page menu. We work with other organizations. It actually has a list of all autism providers in the country as per 2016. So it's a very informative menu that parents can get access to. Because I always hear this, my child is diagnosed with autism. What do I do next? So that menu addresses most of those questions. Okay, as you wind up, Jessica, a message to parents or people living around someone with autism disorder. Your last comment on this. Okay. To any parents and people who know parents or children with autism, stay positive. There's hard work that needs to be done, but reach out to the people who are close to you so that they can support you. And if you know someone with autism, just lend a helping hand whenever you can. It's harder than you think to make sure that everyone is getting the needs that they need. Dr. Lincoln? Yeah, I tell parents all the time, two things. If you suspect your child has autism, get an assessment. Okay. Two, and just the last one. If your autism is not a death bed, individuals with autism with the right treatments, they can grow up to become valuable members of our community. Okay. Thank you very much, guys, for really fighting the time to come and speak to us on Y254 TV. And we wish you all the best as you continue creating the awareness and we hope that you're going to achieve whatever that has brought you in Kenya. Thank you very much, guys, for tuning in and listening on tonight. And if you're home with, if you have a autistic person living around you, love them, be able to interact with these people in the right way and push them. Because you've heard from the doctor, you've heard from the consultant that these are people who can also contribute to the growth of this economy. Thank you very much. My name is Patricia Muriuki. Do have your sayasavek. Good night.