All Things Autism – Claris Mbeng 140322

All Things Autism - Claris Mbeng 140322.mp3 ========================================= Speaker 2 00:00 - 00:22 Hello, this is Anna Kennedy. We're talking all things autism and another week of an exciting guest and also lots been going on in the background in the charity. So we are again still asking for people to send in their auditions for Autism's Got Talent, which will be happening in October. So the closing date is the end of April. Speaker 2 00:22 - 00:42 We've had so many auditions coming in, so we're getting very, very excited. But I know it's going to be really, really tough to choose 20 performers from across the UK and also overseas. We're also excited for the Autism Hero Awards. So if you want to check out who has been shortlisted, all the information again is on the charity website. Speaker 2 00:42 - 01:01 So we will be going to the Chelsea Harbour Hotel, which will be in June. So not long to go now, June 11th. and 36 finalists will be traveling across the country and we have some from overseas too. So the winners will be announced on the night and that is such an emotional evening. Speaker 2 01:02 - 01:32 It's so lovely and I believe attending is going to be Carrie Grant and David Grant who's one of our judges and also the lovely Kasey Ainsworth who's one of our charity ambassadors who is on Grantchester coming up at the weekend. So Kasey is also got a son on the spectrum and her husband is on the spectrum. I also wanted to make you aware of the AKO Charity Autism Expo. So that will be happening at the end of June. Speaker 2 01:32 - 01:51 So Harry is our headline speaker and we have two autistic adults who also will be speaking at the event. We have clinics and we'll have lots of stands. So if you want to come along, please book your tickets. It's at Brunel University and it's £10 for the whole day. Speaker 2 01:51 - 02:30 So keep checking the charity website and you will see lots of resources that are being updated and also it will be updated as we speak every week by the lovely Marla Thapar who's one of my charity champions. So my guest today is Clarice Angerford and she's an award winning inspirational speaker, an author, an autism ambassador, an advocate, a philanthropist and a talk show host. Her advocacy journey is a product of her experiences. Among her three children, she's got two boys and a girl. Speaker 2 02:30 - 02:45 Life still found her worthy of parenting a child with unique abilities because her eldest son is autistic. She found pleasure in understanding everything about autism from personal experience and studying a postgraduate in autism and Asperger's syndrome. Speaker 1 02:45 - 02:52 So Clarice, welcome. Thank you. Thank you so much, Anna, for having me on your show today on the radio. Speaker 2 02:52 - 02:57 We were actually chatting, it was like 2019 since the last time we met, was it? Speaker 1 02:57 - 03:03 Yes, so it's 2019 and now lockdown came and changed everything. Yeah, big time. Speaker 2 03:03 - 03:04 Big time. Speaker 1 03:04 - 03:06 Yeah. Speaker 2 03:06 - 03:22 So, obviously you're a busy bee, but before we talk about autism, before we talk about the work that you do, who is Clarice? Who are you, Clarice? So, give a little bit of background, where are you from, what were you like as a child and what were your interests and what did you want to be? Speaker 1 03:23 - 03:40 Okay. Like you said, I'm Clarice Angafor. It's going to be 18 years since I became Angafor, but formerly I was Clarice Mbeng. So I'm originally from Cameroon in West Africa. Speaker 1 03:40 - 04:03 So I've been here in the UK since 2004. So the Clarice, so many people see now, they'll say, oh, this is not the Clarice I used to know. the only similarity between the two is the smile that has never really faded. But the Clarice before used to be very introverted, very quiet. Speaker 1 04:05 - 04:43 But when I look at myself now, I do think that there was that same Clarice that's, the Clarice that's now is the same Clarice that was then. But sometimes depending on your environment where you grow, you grow in a sometimes it determines the way you are or the way you do things. So at some point, I think I wanted to be a teacher, but I looked again and I thought, I just wanted to be a teacher because everyone around us, around me is a teacher. My elder sister, my elder brother, and my younger sister, they're all teachers. Speaker 1 04:43 - 05:00 So I thought maybe that was a family thing. But as growing up, I developed the interest in the medical field. But for some reason, I wasn't really a science student. So I wasn't very good in all the science subjects. Speaker 1 05:01 - 05:24 So I couldn't really go into doing medicine and things like that. But I loved nursing, which I tried going into nursing a couple of years ago in this here in the UK, but I still couldn't. But over the years, things have changed. So now I literally follow my passion to determine what I would like to do or I would like to become. Speaker 1 05:25 - 05:41 And it's actually been, I've been motivated by my experiences with having a child with autism, having a child with special needs. So he's Taking care of him has actually traced my path in so many ways. Speaker 2 05:41 - 05:42 We found a niche then. Speaker 1 05:42 - 05:44 Yes, kind of. Speaker 2 05:44 - 05:53 So, what was it like, can I ask, moving from Cameroon to the UK? So, which part of the country did you move to and what was it like with the different culture changes for you? Speaker 1 05:53 - 06:12 Okay, I must confess it was quite difficult given that I'd never travelled out of Cameroon before. I'd never gone to any country. So, the first country I ever went, even out of Africa, I'd never been out of Africa. So, the first country I had to go to go into a plane and travel was come to UK. Speaker 1 06:12 - 06:37 to the UK. It was quite a shock to my system given the fact that I was moving to a country and I barely knew just one person. Maybe every other person, they were just acquaintances and the only person I knew was my husband. So that's moving away from your family, the entire family you've literally grown up with and then having to go to another country where you don't know anyone. Speaker 1 06:38 - 07:06 So the first town I lived in here in the UK was in Aldershot Yeah, so we lived there for about two years, then moved to Basingstoke, which we've been since 2006. So yeah, it was, it's quite different. One of the things I found difficulties in was in communication, in talking. because the accents were different. Speaker 1 07:06 - 07:23 So quite a few people felt that if they don't understand me, maybe it's because I don't know how to speak English. So I said, no, in Cameroon, we speak English and we are a bilingual country. But the thing is, it's the accent. So sometimes when someone says something, his accent sounds different. Speaker 1 07:23 - 07:27 I won't understand. So I just have to turn and look at my husband. Speaker 2 07:29 - 07:44 I remember when I moved, because I'm from the Northeast, from Middlesbrough, and I came up to London, and there's certain things that we have different sayings for in Middlesbrough. When I used to, like, for example, I'd say, oh, can I have some bread buns, please? And she'd look at me as if I'm daft, and she just sort of said, bread buns? What are those? Speaker 2 07:44 - 07:53 I said, people, bread buns? She went, oh, you mean bread rolls? I said, well, they're not rolls. They're bread buns. Speaker 2 07:53 - 08:24 So like little things like that. So even from the Northeast and like some things that you have that are slang, sometimes even in the office when I'm with Lisa and I'll say something, she goes, what does that mean? But yeah, so and I also remember my mom because she is Italian and she moved from Italy when she was eight years old and she'd never been out of Italy to England with her father and mother, their nana. But sadly, her mum died within six months of moving to the UK. Speaker 2 08:24 - 08:41 She was only nine years old. And she just said she just felt so isolated because she couldn't really speak English and all of that. So sort of get a little bit of what you're saying, you know, from the story that my mum said to me. So your son's diagnosed with autism. Speaker 2 08:41 - 08:46 How old was he? And can I ask what the process was like for you? Speaker 1 08:46 - 09:05 He was about three, three and a half. But from birth, we had always known that there was going to be some sort of a delay because he was born extremely premature at 24 weeks gestation. So we had been expecting something. But at some point, I thought there was more. Speaker 1 09:06 - 09:26 to just him having global developmental delay. And I basically wanted to have a name for something because sometimes when people ask you, what is wrong with your son? I used to find it very difficult to start explaining he was born premature. He had developmental delay. Speaker 1 09:26 - 09:51 I mean, listing so many things. So I happened to watch a movie. I can't remember the title, but I usually guess it was Rain Man or something. Then there were quite a few signs, characteristics that I saw from the movie and some of them were really more towards what my son used to do because he will not sleep properly. Speaker 1 09:51 - 10:13 He will switch on, he'll put on the lights on and off, on and off and then get particular interest in certain things and then musical toys. He was into musical, anything musical. or he could turn any sound into music. So I started reading because I also had also heard about autism. Speaker 1 10:13 - 10:38 So I started reading about it. Then one of the times we went to see his consultant because he has always had consultant review every six months. So I mentioned, and he asked me exactly what I noticed from the movie and what I've noticed with him. Then I explained, and behold, the next six months appointment, he had an additional diagnosis on his letter, autism. Speaker 2 10:39 - 10:45 Okay, so have you met anyone with autism before? Any children, any adults? Do you know anyone? Speaker 1 10:45 - 10:53 You mean before then? Yeah. No, I'd not. The first time I heard of that word autism was in 2005. Speaker 1 10:53 - 11:08 I think I was just a couple of months old here in the UK when one of our friends came to visit. So I was asking her, what does she do? So she said she works with children who are autistic. So I said, autistic? Speaker 1 11:08 - 11:19 What's that? She said it's something called autism. So when I heard that, oh, I thought maybe it is an auditory problem that like they're hard of hearing or they can't hear. She said, no, it's not that. Speaker 1 11:19 - 11:31 So she explained to me what autism is. That was the first time I heard of it. And then my son was later on diagnosed with autism. And that was even before I was pregnant with him. Speaker 1 11:31 - 11:59 So before then, yeah, before him, I'd not seen anyone that I could say that they were autistic. But after his diagnosis, when I look back, even back home in Cameroon, there were quite a few children or adults growing up around me. that we used to see them, even in my class at school, I could actually say they were autistic, but we didn't know, teachers didn't know. And then sometimes they are slow in class. Speaker 1 11:59 - 12:47 Sometimes you don't understand why a simple math calculation or a simple question that spell a certain word, they cannot spell. So sometimes we will be surprised at why can't he, why can't she spell the simple word or solve the simple math, in understanding now, when I look back, I do know that there were quite a few of them in class, in the communities, and things like that, yeah. As of the process, when I finally had that discussion with this consultant, because he was already being seen by the MDT, so there was already the various, I think clinical psychologists, and others. So I, yeah. Speaker 1 12:48 - 12:55 Yeah. Yeah. The other professionals. So the, the, we, we held a meeting and that was all because he was already three and a half. Speaker 1 12:55 - 13:02 So they already had to start looking for schools for, for, for him. So they had me. Speaker 2 13:03 - 13:05 Sorry. Was he going to the nursery then? Speaker 1 13:05 - 13:26 Yes, he was going to the nursery, but before then I'd been, we had been turned away from one of the nurseries he, he, he was going to. because he had gone there for a few days on trial. I think the third or the fourth day, just as I approached the door, the lady just turned us away from the door. No, we can't have you. Speaker 1 13:26 - 13:31 We can't have you anymore. We can't have your child here anymore. He's so destructive. He doesn't sit still. Speaker 1 13:31 - 13:41 He goes from one seat to another. So we can't have him here anymore. So, yeah. And I think that was around 2008 or so. Speaker 1 13:41 - 14:09 So I just went back. With the information I know now, if I knew then, then that wouldn't have been right. But because I didn't know, so we just went back and then we tried other nurseries that could accept a child who has some form of a delay since then. Because then they had not yet mentioned autism or we had not yet mentioned autism, yeah. Speaker 2 14:09 - 14:19 So where you're living now, do you know how long it's taken? Because I'm interested in how long it takes for children or adults to get diagnosis. So do you know how long the process is now? Speaker 1 14:20 - 14:38 I think it varies from individuals because some parents say it takes a very long time. Some actually say it takes like a year or six months, but some other parents have had to go private. Yeah. And they say when they go private, it takes a shorter time. Speaker 1 14:38 - 15:03 Then I actually met a parent, he's a parent of a 16 year old girl and we had a chat and he said it's been a long process, even more than two years for their daughter to be diagnosed because it's like they had to prove so many things that she's actually autistic before they give the diagnosis. Speaker 2 15:03 - 15:36 Yeah, I think with Covid as well the waiting lists seem to be longer. Okay, so can I just also ask before we go on to anything else, your son was born at 24 weeks and my son Patrick was born at 30 weeks, so obviously that's quite a scary time as well for us as parents. Because obviously, you know, you expect to go through the full gestation and then all of a sudden your child is born and he's still small and you don't know if he's going to survive. He's in the incubator, he's got all these machines that are attached to him. Speaker 2 15:36 - 15:41 How are you coping with all of that and how is your husband coping with all of that? Speaker 1 15:42 - 16:03 Oh my God. Remember that it wasn't long that I'd just come from Cameroon because I came here in 2004 and then by October 2005 I had him. at six months, so with no family around, it was very difficult. And then the fear as well, because he had like 50-50 chance of survival. Speaker 1 16:03 - 16:55 And then just the second day, they tell you he's got, that they've done all the scans and all the checks, and he's got a grade four intraventricular hemorrhage. So it was quite a scary moment for us, given that we were very young parents, you know, when becoming a parent, nobody gives you a manual or nobody gives you a manual that this is what you have to do to take care of children and then not to talk of having a child premature yeah there's no additional manual for that then you give birth to your child you have to leave the child in the hospital and then you go back and visit when it's possible So it was a difficult moment, but we kind of pulled through because then we were still living in Aldershot, but he was admitted in the neonatal intensive care unit in Portsmouth. Speaker 1 16:56 - 17:23 So I used to travel from Aldershot to Portsmouth every day. Luckily, I had a friend, one of my friends I met here, so she was on maternity leave then, so she would drive me down to Portsmouth every morning for all the time that he was there at the hospital. And then when my husband finished his work, then my husband was a teacher, when he finished his work now, he would drive down to see the little man as well. And then we'd drive back up to Aldershot. Speaker 1 17:23 - 17:33 So that's how it went from October till around January when he was transferred to a hospital closer to home, which was Frimley Park Hospital. Speaker 2 17:34 - 17:38 Yeah, it's all, it's very, very scary, especially when it's your first child. Speaker 1 17:38 - 17:39 Yes. Speaker 2 17:39 - 17:41 You could have taken it a day at a time, really, that's all you can do. Speaker 1 17:42 - 18:11 Yes, we literally took one day at a time and it was quite scary, but we kept hoping for the best. All I wanted for him was to put on more weight and then go out of those tubes and come home. But he finally came home February 2006 with home oxygen which he was on for two years. So for the first two years of his life he was on oxygen in the hospital and at home as well. Speaker 2 18:12 - 18:37 So why do you think that many parents of children who are autistic in the BAME communities are struggling to accept their children's diagnosis? And I don't just think it's in the BAME communities as I've spoken to people in Ireland, I've spoken to people overseas. there's still a stigma attached to it. In some countries, it's like the shame on the family, especially if it's the boy. Speaker 2 18:37 - 18:49 If somebody comes to the house, don't let him come downstairs, don't let anyone see him. For me, I just can't even get my head around that. That's just like, what? So what do you think? Speaker 2 18:49 - 18:49 What's your opinion? Speaker 1 18:50 - 19:22 Yeah, I think until you've been in the situation, then you'll be able to understand more, and especially culturally. I think this denial thing is still happening a lot because of the taboo and the stigma attached to autism or to any form of disability. Obviously, many parents do not believe that for the first time, their child may be having a disability when they are pregnant. You don't even put it at the back of your mind that something may go wrong. Speaker 1 19:22 - 19:44 So, yeah. So when that happens now, they give you that diagnosis. The first thing that comes to mind is, no, it cannot be my child. And that's one of the reasons why some parents will always ask for a second opinion, that I really want you to get this right before I accept. Speaker 1 19:45 - 20:01 And denial also is some sort of a coping mechanism. Because when you receive some news, it's a shock. So the first thing that happens to you, that emotion that comes is, no, this is not right. It's a little bit similar to when COVID just started. Speaker 1 20:01 - 20:28 We all denied that COVID doesn't exist. And even some of us from the Black background, we were like, COVID will not affect a Black person. So I think it has to do with that stigma. Nobody expects something bad to happen to their child. Speaker 1 20:28 - 20:52 And when a parent is expecting a child, they already have dreams. They already have aspirations. They already, for example, a parent will already envision what their child is going to be when he or she is still a baby. So they are already seeing a grown-up man, a grown-up woman doing this, doing that, having a certain career. Speaker 1 20:52 - 21:07 When that diagnosis comes in now, they are left with questions. Will my child be able to talk if it's for those who do not talk? Will he be able to hold down a full-time job? Will he or she be able to get married, have a girlfriend? Speaker 1 21:08 - 21:32 And things that, with all these questions and all those doubts in our minds, so that denial still comes in. But I usually do encourage parents that, yes, those emotions will always be there. We will always deny at first instance, but one of the things we really have to do is to get to that point where we now say, this is our reality. This is my reality. Speaker 1 21:32 - 21:47 This is my child. This is the one I have now, not the one I thought I was going to have. So we accept him or her the way he or she is with their difficulties, with their challenges. And then we look for those areas we can help them to improve on. Speaker 2 21:47 - 21:54 And the thing is, the child's never changed since the day you've had them. They've always been the same. It's just they've got a diagnosis. Speaker 1 21:54 - 21:55 A diagnosis, yeah. Speaker 2 21:56 - 22:04 So can I ask you, do you know what it's like in Cameroon? Do they have a stigma attached over there? Does it take a long time to get a diagnosis? Just out of interest. Speaker 1 22:04 - 22:36 Oh yes, there's still a lot of stigma, a lot. But people are gradually becoming aware because of voices like myself and other parents and other individuals. As of diagnosis, to be honest with you, I'm not sure if there's any special procedure. To an extent, you get people who have studied or who have learned about autism and they know they know about the DSM-5. Speaker 1 22:36 - 23:40 So, and if they happen to work in a special needs school, so sometimes they can do some sort of an informal diagnosis, but most often children are being taken to the doctors, to the pediatricians for diagnosis, even though it's not usually a formal one. So it's still a process to get people who can do, at formal diagnosis of autism in Cameroon to an extent where sometimes individuals get confused between what is autism or what is Down syndrome and cerebral palsy and other disabilities because sometimes when you're trying to describe some of the signs of autism or symptoms that some children with autism do not talk another person may end up thinking that every child that has some form of a delay or that has some form of a speech delay is autistic. Speaker 2 23:41 - 23:42 I see what you mean. Speaker 1 23:42 - 24:00 Yes, so at times we really have to point it out clearly, just be careful, do not label the child unless you've had a formal diagnosis, unless you've taken the child to be assessed by a professional, then you can have a formal diagnosis of autism. Speaker 2 24:01 - 24:09 Okay, so how was education for your son? Was it a battle to get the right type of need? Sorry, the right type of education so that, you know... Speaker 1 24:09 - 24:50 Yes, we... Yeah like I mentioned earlier with the nursery it was a bit of a struggle with him having a pre-nursery because we were turned down at the one he has to go into and then there was another one we actually went to and they just said no we don't have staff who who support children with additional needs. But after the meeting with the professionals and we were given a pack of different schools around the area that support children with autism and with other forms of disabilities. Speaker 1 24:50 - 25:10 There were quite a few and we tried, one of them we actually tried, but we discovered that it was more for children only with physical disabilities But the one he's currently in now, he's been there since he was, I think, around four, since primary, and he's going to be there till 19. Speaker 2 25:10 - 25:13 How old is he now? Speaker 1 25:13 - 25:16 He's 16. He'll be 17 in October. Speaker 2 25:16 - 25:19 How's he getting on? Is he okay? Speaker 1 25:19 - 25:41 Yes, he's alright so far. It's an environment he's literally grown in and he knows so many of the teachers. I think he should be one of the oldest students in the school. So, he has teachers there who have literally seen him grow from a little baby to a big boy, to a big boy now. Speaker 1 25:41 - 26:09 Yes, you actually have one of the LSAs in his class now who actually was with him when he was in, I think, year R. Yes, so there's a big difference. What about his siblings? Yes, he's got a big sister, she's 26, and then he's got a younger brother who is 11, he'll be 12 in May. Speaker 2 26:10 - 26:11 And how's their relationship? Speaker 1 26:12 - 27:02 um normal relation relationship with with his younger brother because he's literally grown up uh grown up with his with his younger brother well his younger brother has literally grown up with him his younger brother came and met him so oftentimes we see them the normal sibling rival like fighting with the remote control and then there's the thing, oh, why are you asking me not to use the phone? And you've allowed Lesra to use a gadget. So we see those things, but they do have a very good relationship because at times we have the feeling that his younger brother feels, he has that, he feels responsible for his brother. Speaker 1 27:02 - 27:33 For example, when we go out into the community or to events, even before I rush to check on where Lesrae is or the younger brother is already there, he's like, Lesrae, come back. So he's quite alert. And they've literally taught each other several things. Lesrae taught the younger brother how to use the computer, how to start because Lesrae would pull him because and Lesha doesn't still have fine motor skills to be able to use a mouse. Speaker 1 27:33 - 28:03 So if the computer is not a touch screen, so he will ask the brother, he will point, you put the computer here, he points and then the brother does. And then on the other hand, the younger brother taught him how to use the remote control to put the TV on. So basically they do have a very good relationship. Oftentimes Lesha gets frustrated with him he gets frustrated with Lesra, but that's natural with every sibling. Speaker 2 28:03 - 28:30 So obviously it's busy in your house and you're a busy bee, and obviously because this is a program about well-being, what do you feel is important about self-care to keep yourself going, to keep yourself on top of everything that's going on with your sons? a lot of parents tend to be focused all the time on their son, on the paperwork and everything. How important is it for self-care? Speaker 1 28:30 - 28:54 When I finally understood what self-care was and how important it is for the mum and for everyone, I don't joke with it anymore. At first, I used to just carry on. I used to just literally go on and on until I lie down in bed at night to sleep. So I do think that self-care is very important for our mental health. Speaker 1 28:55 - 29:22 They usually say you cannot pour from an empty cup. And if you as a parent with a child or any parent, if you're not okay physically, mentally, you won't be able, you won't have that energy or that willpower. to be able to take care of your children and the entire family. So I do advise every parent, if you have the time, you need, not even having the time, you need to create time for your me time. Speaker 1 29:22 - 29:38 Sometimes I just like just to go out for a walk. And I literally discovered that going out with friends or just going out for a drink or for coffee, it makes you, you are just excited, just happy, just feel happy. Speaker 2 29:38 - 30:16 It's not time for yourself, it's just like Clarice's time, Anna's time and I was like you for like 10 years, I didn't do anything for myself, I was sort of focused on everything for my sons and then I was worried about setting up a school and having done that before and all of those sort of things, it just totally consumes you because you just want to be successful. So this month is International Women's Day and the theme for this month is Break the Bias. So if you had to apply this theme to autism spectrum conditions and other related issues, What areas would you say that there is bias and what do you suggest as a solution in order to break that bias? Speaker 1 30:17 - 31:01 Yeah, the first thing that comes to mind since I got this break the bias theme and I related it to autism, so I thought the fact that many more boys are still being diagnosed as compared to girls, it doesn't mean less girls are autistic. It means something has been missed somewhere. I don't really know exactly what is the thing that's been missed, but there should be something that has to be done to break this bias. And so one of the things should be, parents should be listened to more, especially parents of girls, parents who think their daughters are autistic. Speaker 1 31:01 - 31:26 Once they start going to doctors or going to specialists to say, I think my daughter is autistic. They should be able to listen. And we all know that sometimes girls do mask their autistic traits. But as a parent, they usually say a parent's instincts, it's very high. Speaker 1 31:26 - 32:03 And once a parent starts thinking that there's something wrong with the child, 90% of it or 99%, they are right. And I also do think that there's still some sort of a bias in the community as far as parents of autistic individuals are concerned or even autistic individuals as well. Not everybody really invites autistic children. You may have friends who have children who are celebrating birthdays or doing events. Speaker 1 32:04 - 32:10 So if you're not careful, you will discover that there's a neighbor having their child's birthday, but your child wasn't invited. Speaker 2 32:10 - 32:36 Yeah, you soon find out who your friends are once your daughter or your loved one's been diagnosed on the spectrum, or even individuals or adults themselves who are on the spectrum. So many where their friends have sort of faded away and you soon find out who your real friends who stick by you. You do. So you've set up a charity, I'm sorry, you've set up a website called CanAbilities, is that how you pronounce it? Speaker 2 32:36 - 32:43 CanAbilities.org? Yes. So if you could talk a little bit about that and if people would like to have a look, where can they find you? Speaker 1 32:44 - 33:29 Okay, yeah, CanAbilities Foundation was created in, basically started in 2015 and that was when I decided to to go on social media or to talk publicly about autism, about my child being autistic and to be able to raise awareness, to make more people understand what autism is and to encourage love, understanding, acceptance and inclusion for everyone that has been affected. So in 2018, we uh, can abilities was registered as a, as a charity here in the UK. Basically for the first aim was to raise awareness, to encourage love, understanding, acceptance, and inclusion of everyone that has been affected by autism. Speaker 1 33:30 - 34:10 And then also to be able to support parents of autistic children and, and, or, or autistic individuals in our communities, more especially for, for parents, for them to be able to face the, the, the fears and conquer those challenges that come with parenting children with autism. So yeah, you can actually visit the website on www.cannabilities.org or Autism Acceptance at Cannabilities Foundation on Facebook. And then it's the same on Twitter, Cannabilities on Twitter, yeah. Speaker 2 34:10 - 34:33 So when, can I ask during the last two and a half years of difficulties that we had with COVID, lockdown and all of that. Have you noticed more people or families or individuals contacting the charity? Because what I noticed was there was more adults, more autistic adults that were contacting the charity. parents as well that were really struggling. Speaker 2 34:33 - 34:44 I'll just give you to be a listening ear but I did notice more autistic adults contacting the charity or ringing me or messaging me via social media. What did you see during those reviews? Speaker 1 34:45 - 35:32 Yes, I do think during that period there was a lot of change in routine and change in activities and many people, especially autistic individuals, felt isolated. So I do think that at some point some really just wanted to reach out and talk and talk to to someone or just to get get a conversation with with another person or other parents because so many parents as well actually struggled given the fact that they couldn't take their children out so they'll reach out and also to find out what are some of the coping mechanisms what are you doing to cope in a situation in a situation like this just to have an idea of what maybe there's something you're doing differently. Speaker 2 35:34 - 35:59 Okay, so it's always good to talk and there's anybody listening in that might be struggling, don't be worried to talk to people. Whatever it is that you're going through, whichever process you're going through, whether it's diagnosis, whether it's trying to find the right school, whether you're going through transition, whether you've got an adult that's at home with the door shut and they don't want to come out. You know, they just want to be on their computer all the time or trying to get to a college. Please speak to people. Speaker 2 35:59 - 36:17 There are always people out there that are willing to listen, or even on social media. I know it can be sometimes a negative place to be, but it can be a really positive place. And talking about struggles, I just wanted to highlight and obviously been thinking about the families in Ukraine who've got autism. autistic children and autistic adults. Speaker 2 36:17 - 36:52 How do you keep like I was thinking, how do I keep like a child like my son Angelo who's got minimal verbal skills, a consensory process and conditions quiet if you had to for safety reasons? How do you explain to your loved ones that no, you can't have that music on? or no you can't put your television on, no you can't use your iPad or even things like you know you can't switch the light on or whatever it may be and it's just too awful to think about. I can't even imagine what these families are going through and also there's a lot of questions been asked by children and by adults in this country because they're really worried about what's going on. Speaker 2 36:53 - 37:22 So if you check out our charity website and there's a lot of information out there you know National Autistic Society with resources to try and explain what's going on. So if you check out our charity website, on the events page you will see, you know, UK resources and visual aids. You know, I'm a patron of Odds and Manglia, so they've put something together as well, so I've shared those on the charity website. I just can't even imagine, can you Clara, what they must be going through. Speaker 2 37:22 - 37:23 It must be so tough Speaker 1 37:24 - 37:59 Yeah, it must be. Like you already mentioned, having to explain or tell a child that he or she's not supposed to do what they normally do, it's really difficult. And again, with the fighting and those who have limited understanding of things around them, it's more troubling as well. And parents, it's a devastating moment right now for all of them because they are not only worried about the war, but they're worried about their children with autism. Speaker 1 37:59 - 38:23 Because oftentimes a parent is afraid of what will happen to my child when I'm not around or when I'm no more. So during moments like this, that thought, I think it It's always at the back of the press. Yeah, it increases and then just the thought of it can equally lead to more mental health, mental health problems during this time. Speaker 2 38:24 - 38:32 Most definitely. Just to remind everyone, my petition is still going. Who will look after our children when we're no longer around? Nearly 12,000 signatures. Speaker 2 38:32 - 39:02 So if you'd like to sign it's www.change.org forward slash Anna petition. Just remind you again www.change.org So last year, Clarice, you took part in a beauty and empowerment programme with Autism Awareness and Mental Health as your platform. A little bit more about the programme and how did you get your points across and interest in autism and mental health at a beauty and empowerment programme? Speaker 1 39:03 - 39:42 Okay, yeah, it was quite an interesting journey and there are so many things to learn from it. Most importantly, my main reason for joining it when I saw it was because their objectives were aligned to courses which I hold very dear to my heart, courses which I have lived experiences in, which is autism for my son and mental health because I've struggled with depression for a very long time. That's what happens sometimes when you end up having a special needs burnout, you may end up having depression. Speaker 1 39:43 - 40:18 So when I saw that advertised and it said it's for women 30 plus who live in the UK and have African roots. I was like, okay, I will try. Then I remember the very first time, as they're talking about autism on Facebook, I think your page was the first page that I laid my eyes on. And then I remember there was something you said about looking good, dressing well and looking good as a special needs mom. Speaker 1 40:18 - 41:13 that sometimes everything is so overwhelming that you just feel like if you dress well and you look good, you'll feel better, even if it's not 100%. So there are days like that in this journey, being a mom of a child with special needs where you feel low, you feel down, and if you've been affected by depression or any form of mental health, you do have those days where you look at yourself and you feel worthless, you lose confidence at some point in your life. And so empowerment programs like this one, they help women to be able to regain the self or regain that person that they've once lost and then to become. Speaker 2 41:14 - 41:21 isn't it? It's just Clarice, it's not Mark, it's not wife, it's not sister, it's not whatever it is it may be. You're just Clarice. Speaker 1 41:21 - 41:22 Absolutely. Speaker 2 41:22 - 41:30 That's the type of people who forget about themselves, don't they? And they just like get so engrossed into everything else. But if you don't look after number one, how are you supposed to look after everybody else? Speaker 1 41:31 - 41:43 Yeah, absolutely. Because at some point I discovered that I wasn't Clarice anymore. I was just mum. I'd become uncomfortable and just becoming comfortable in in that position. Speaker 1 41:43 - 42:31 So this program actually was to help women who are 30 plus live in the UK who have a passion for something and they have an impact in their community. And because they were aligning their objectives to autism and mental health and awareness, I joined in basically to amplify the voices to raise autism awareness, raise more autism awareness, to reach out to more people in the community online and back in Cameroon because I was representing Cameroon and the UK. Yeah, so, but I didn't win, but at the end of the day, I actually discovered that as a woman, we have to embrace ourselves. Speaker 1 42:31 - 42:51 We have to embrace who we are, what we are, the way we are, and we have to take care of that self as well. It's not just being skinny that you have to accept that you are somebody or that you're beautiful, but it's the whole package as a woman, you accept yourself the way you are and take care of that self as well. Speaker 2 42:52 - 43:04 The thing is with you, Clarice, that I remember about you is your smile. When you smile, your whole face lights up. I have my cheekbones. The thing is, it doesn't matter. Speaker 2 43:05 - 43:24 I remember the quote that you're saying now because it was always my dad that always said to me, no matter how you're feeling, always walk out proud. Always make sure you're dressed up and you're looking your best. It doesn't matter what you feel inside. It's just how you are and it will help you make you feel better and you know absolutely boost your self-confidence. Speaker 2 43:24 - 43:43 So if you were to go back to your younger self and give some advice about going through the process of diagnosis with your son and everything else you've been through and also for people listening in that might be feeling a little bit low and you know they're going through the process they're finding it overwhelming, what tips and advice would you give? Speaker 1 43:44 - 44:14 Okay if First and foremost, if I had to go back to my younger self, maybe that's probably when I didn't have an autistic son, I'll probably say, speak out more. Let your opinion be heard. Let your voice be heard. And then to parents maybe who are still struggling right now, one of the things I would like to tell them is seek further help. Speaker 1 44:15 - 44:50 in whatever area you are struggling in, do not stay, do not remain alone because there are many people, there are many families out there who are in the same situation as you are. Seek advice, join other groups. And then for parents who are still, maybe there are some parents who are still suspecting that their child or their children are autistic, follow your instincts. Act on them and go out there and seek help. Speaker 1 44:50 - 45:01 Ask for more information and then read more about autism to understand exactly how it presents itself and then try as much as possible to understand your own child. Speaker 2 45:02 - 45:15 The thing is, it's nothing to be ashamed of, because some parents are worried or they might be ashamed that they're asking for help. There's no shame in asking for help. There's no way they'd possibly know everything. And I've always said, when you go into meetings, take somebody with you. Speaker 2 45:15 - 45:28 They might know the system that's been through it already. Write the speech down before you go to the meetings, because sometimes it can be a little bit overwhelming when you're there. When you walk away, you might think, I wish I'd have said that. I wish I would have said that. Speaker 2 45:28 - 45:55 So write everything down that you want to say, just in the right format, just to remind yourself, to prompt yourself. And please, you know, just reach out because it is a complicated system, you know, that going through everything, all these, these like education and health care plans, you know, they're written in a certain way that when you read them, you think, Oh, I'm going to get this, this, this, and this. But then when it boils down to it, because it hasn't been specific or whatever the way they've written it, it may not be that. Speaker 2 45:55 - 46:01 So always take someone who knows the system with you and helps support you. Speaker 1 46:01 - 46:07 And it can be overwhelming, can't it, Clarice? It is overwhelming. It is, yeah, it is. It's really overwhelming. Speaker 1 46:07 - 46:29 And it becomes really more overwhelming when parents have to fill in the maybe DLA or PEEP. Oh, those forms. Yeah, because you're concentrating only on the negative aspects of your child, what your child cannot do, what they find difficult to do. So it's mentally draining. Speaker 1 46:29 - 47:13 So yeah, I would also like to say they should ask for support and they should not be ashamed to ask for help from someone, a friend, or if they have family members, you ask for support because sometimes when you don't ask, it wouldn't come to you. So going back to my younger self, I used to say, well, it's none of someone's business, it's my business, so there's no need, so I can go ahead and do it, but now, If somebody, even before you ask me that, do you need help with something? I'm already saying yes before. So, because I know a few weeks ago, one of our friends asked, what can I do? Speaker 1 47:13 - 47:21 I said, can you come and babysit? So I should have about three hours good sleep. He was laughing because he thought I was joking. I said, I'm serious. Speaker 1 47:22 - 47:56 If you can come and take Prof out, then I will have a sleep. But at first, if somebody asks, I'll say no, I'm okay, but deep down there, you are not okay. And therefore, for parents or some other parents as well, or people, or maybe people who do not have a child with autism, autism is not a disease and it's not an illness. So, and it's not contagious, but it's a child that needs to be loved and accepted in the community and wherever he or she is, so. Speaker 2 47:56 - 48:02 Yeah. Have you got a bird in the background or you've got the window open? Yes. What, both? Speaker 2 48:02 - 48:13 You've got the window open or you've got a pet bird? It's a bindo. Is it making noise? No, no, I just thought you might have had a canary in the background in a cage, like a friend. Speaker 2 48:16 - 48:33 The only thing I'm saying is, it reminds me of when Patrick was little, he wanted a little budgie, a budgerigar. So we had a blue budgerigar and we used to call it Cheeky Charlie. I thought you might have had a bird in the cage. Speaker 1 48:34 - 48:43 Yeah because it's a lovely day today, it's really sunny so it's why not enjoy the sun. Yeah I'm actually seeing the sun coming through. I know it's lovely, it makes you feel better. Speaker 2 48:43 - 49:02 So if I give you a magic wand, what do you think needs to be done, what else can be done to help with families who've got autistic children or adults? So if I said to you, here you go Clarice, here's a magic wand for you, what would you do with it? Speaker 1 49:03 - 49:44 Wish I could use that magic wand to do everything for every parent, but yet it's still not possible. Yeah, we still do have those parents in our communities who will not want us to speak out or to talk about their children's, or that they are suspecting that the child may be having autism. Sometimes we do need like a body. Some of those parents need somebody to talk to them on a one-on-one basis, because at times, there's that trust issue, too, because parents will need someone they want to confide in. Speaker 1 49:45 - 50:38 So, I don't know, there should be some services from, maybe from charities or from some organizations that can actually link another family to another family. Because I know a couple of, couple of years ago when Autism Hampshire actually called us to link another family with us because they had just moved into the area and they had an autistic child so they needed to. So there should be more of those services where they can talk to other parents with similar experiences on a one-on-one basis. And then others who do not have a lived experience with an individual with autism, they should be more patient, more understanding. Speaker 1 50:38 - 51:30 I would like them to be more understanding and more supportive and inclusive of parents and individuals with autism. Do not assume that their hands are already too full, so you don't want to include them in activities in the community. Include them let them be the ones to take themselves out of those activities so yeah so there should be that inclusion in every aspect of yeah because the child sorry go on i just wanted to say because the the child or the individual belongs to the community he's part of the community so if activities have been organized and they're not involved then i still go back to to your article what will happen tomorrow if the parents are no more there Are they just going to take the child and put him or her in an institution Speaker 1 51:30 - 51:39 because the parents are not there? Or are they going to support the child as a community? So those are some of the things I would like to do with my magic wand. Speaker 2 51:39 - 51:57 OK. Do you think we need more services like schools, colleges, specific for autism, more training, employers to give our loved ones a bit of a chance in the workplace? Because there's still this saying, only 15% of autistic adults in employment. Speaker 1 51:58 - 52:10 Yeah. Yes. I, sorry. I do think that there's still, um, that awareness is still needed in the workplace as well, as far as employment is concerned. Speaker 1 52:10 - 52:39 That's those who the, the employers should be more autism aware. They should know more about what autism is and, and, and what to look out for in, in, in individuals who are autistic and then Also to make the working environment autism friendly. It can even be starting from when they are going for interview. You start making everywhere autism friendly once you've invited an autistic individual for interview. Speaker 1 52:39 - 53:17 And how would they make that possible is by asking them, by talking to them and getting to understand them better and to know what their difficulties or what their challenges in order to support them more. Because at times people tend not to talk directly to autistic individuals and once they don't do that they miss out a lot. But in cases where the autistic individuals can speak more for themselves then they could equally speak to the parent or to the carers or to teachers. Yes, make reasonable adjustments. Speaker 2 53:17 - 53:34 Because sometimes it's just the smallest thing that can make the biggest difference for that individual. Yes. So obviously we touched a little bit about COVID and how families were struggling. Did you feel isolated and was it challenging for you? Speaker 2 53:34 - 53:38 And yeah, how did you cope? Speaker 1 53:38 - 54:06 It was absolutely isolating, yes. And when it just started, the first few months, I think we got engaged in these 25 push-ups for mental health, where I used to go out every morning with the boys and we do push-ups to raise awareness for mental health. So that helped somehow during that first... It was good weather as well, didn't we, at that time? Speaker 1 54:06 - 54:24 Yeah, the weather was quite good. But it eventually became... really difficult when Lesra couldn't understand why he's getting up every day, has to stay at home. Meanwhile, at first he would get up, he'll have a bath, put his uniform on, then go and wait for the bus. Speaker 1 54:24 - 54:32 But now it's not happening. So he became really frustrated. So every morning he would get up and he cries. He takes his bag and put that he wants. Speaker 1 54:32 - 54:42 Then he brings his communication book. I want school, on school. So it got to a point where we had to, we had to put his uniform on on a Sunday. drove to school. Speaker 1 54:44 - 55:29 But when we went there, he rang the bell, the gate didn't open and that was another meltdown. But there was that isolation part of it and it was more difficult because he loves going shopping because Asda is just nearby so we walk there so he couldn't go down he couldn't go to shops as often as he he used to do and then one of the things too because he he falls under the vulnerable category health-wise so we had to limit him going to how many people he's interacting with also had had to limit where he was going to and again because of sensory issues he wouldn't allow the mask on his face yeah for even up to one minute Speaker 2 55:29 - 55:38 My son had to wear the mask and then when I was wearing it, he was looking at me. Speaker 1 55:39 - 56:14 He used to pull off the mask on my face because he doesn't understand why are you covering your mouth and your nose. So yeah, it was a bit, it was isolating but we coped because we used to go out in the gardens or we go, we do long walks. maybe after work or sometimes I would delay work a little bit because work was quite understanding. So I could leave it till evening when they go to bed and then I'll support him during the day and then evening I work. Speaker 1 56:15 - 56:29 We managed and then we used to have online programs as well with other parents and other parents of autistic individuals We will just talk, we will just catch up. Speaker 2 56:31 - 56:58 We've got a few minutes left, so where can you see your son? So obviously it's coming into adulthood now. What plans have you got? Because a lot of people and a lot of parents, you know, like I did the Harvey and me documentary, Katie didn't realise how far in advance you've got to apply, you know, when you're going through the transition for colleges, because, you know, everything comes on, you know, it's Speaker 2 56:58 - 57:09 not, there's not a shelf where there's a does it? It's just for your son, you've got to really look for it. There's not as much, how can I say, provision out there for adults. So, what are you thinking? Speaker 1 57:09 - 57:50 Okay, where he, the school he is in now, Leamington High School, he's there till 19 because they go right up to 19 years. So, yeah, and we've been attending, there's an evening that they usually attend to help you to look for more schools to prepare you. So we've been looking at a few obviously depending on his needs and he's shown a huge interest in IT over the years. So that's where we Speaker 2 57:50 - 58:25 We are aiming to support him more in IT future then. So yes, start looking in advance obviously. I know you've got three years to go but I would say look at a good year in advance to where you would like your son to be because if you leave it at lastminute.com it's very, very stressful. So I just wanted to remind everyone of our newsletter that goes out every quarter on the charity website and it's free so if you check out www.annakennedyonline.com you can log into our free newsletter and it will be sent out to you every quarter. Speaker 2 58:25 - 58:57 All our workshops as well and any of our events Again, it will be on the newsletter. Just to remind you of Clarissa's website, it's www.canabilities.org, so C-A-N-A-B-I-L-I-T-I-E-S.org. So if you're interested in checking out Clarice's website, all the details will be on the website. We'll also be putting up a little article as well on the charity website, on the latest news about Clarice's chat with me. Speaker 2 58:57 - 59:12 So check that out again. Just to remind you, www.annakennedyonline.com. It's been a real pleasure talking to you again, Clarice. Good to hear everything that you're doing and that everybody is well and supporting so many families. Speaker 2 59:12 - 59:23 And yeah, just keep going and do what you do and make sure you do some more of your beauty. Yeah, thank you so much. Speaker 1 59:23 - 59:29 It's been a pleasure coming to your show for the second time. Thank you so much. That's amazing. Speaker 2 59:29 - 59:33 Thank you. Thank you. And best wishes to everyone. And best wishes to everyone listening in. Speaker 2 59:34 - 1:00:05 If you're interested in being one of my guests, please contact me on the charity website and we can arrange for a date for you and time. So again, just to remind you, www dot Anna Kennedy. online.com all the best everyone enjoy the sunshine while you can and go for those walks and don't forget about you and keep looking after yourself because if you go down everyone's going to go down with you so bye everyone thank you Clarice thank you bye everyone bye