All Things Autism – Mala Thapar

All Things Autism - Mala Thapar and Pershy Mgadamika 170122.mp3 ========================================= Speaker 2 00:00 - 00:32 Hello, this is Anna Kennedy and we're talking all things autism. I'm not in my usual environment today, I'm actually at home in the Conservatory because my youngest son has Covid so we're making it work. So I've got two lovely guests today but before I introduce them I just wanted to go over a few things. So apparently this month it is National Dog Walking Week and one of our charity ambassadors Tess and the lovely Kratu has written an article on the charity website. Speaker 2 00:33 - 01:01 So she is saying that rescue dogs need to find new homes and helping with families and it's been a lifeline. Kratu, I know Tess personally and Kratu has been a lifeline for Tess. So she adopted him from Romania. So all of the story, all of the hints of walking your dog, whether it's a rescue dog, whether it's an assistance dog, all the information is on the charity website. Speaker 2 01:02 - 01:41 Marla, who is one of my charity champions and has got a new title, which I will share with you very soon when we start chatting but she looks after the charity website and I know it's not easy but we are updating it all the time with lots of information and so keep checking out the latest news. We also have our newsletter that comes out once a quarter so that will be coming out again very soon if you want to read some of the past newsletters They're all on the charity website, just to remind you, www.annakennedyonline.com. And remember, we have a resources page which has lots of useful information on there. Speaker 2 01:41 - 02:07 So please check it out. Just to remind you, Autism's Got Talent, our 11th year, I cannot believe it, 11 years we've been doing Autism's Got Talent. So if you want to show us your talent, whether you're a singer, whether you're a dancer, whether you're a musician, whether you're a band, whatever it is that you want to show us, please share it with us. And we are going to be going to the Mermaid Theatre once again in October. Speaker 2 02:07 - 02:19 So the closing date, I think it's the end of March or is it the end of April? I can't remember now. But all the information is on the charity website where you can send us in your bio and your YouTube link. And we want to see your talent. Speaker 2 02:19 - 02:41 Just to remind you about the Autumn Hero Awards, there's a possibility that we're going to have to move it back again because of everything that's going on with coronavirus. So if you want to keep up with the date and the news, again, it's on the charity website. So I'm going to introduce first Marla. So Marla, I can't believe I met Marla in 2011. Speaker 2 02:41 - 02:52 Where has the time gone? I just met an Asian with two sons who have an autism spectrum condition. Her eldest is 17. 17, when did that happen? Speaker 2 02:52 - 02:59 And he was enthusiastic about a career in media. So hello, Marla. Speaker 3 02:59 - 03:01 Hello. It's good to be here, Anna. Speaker 2 03:01 - 03:16 Oh, thank you for joining me. It's always good to speak to you, even though we do message each other a lot. Can you believe it was like 2011 that we first met or spoke? Where's that time gone? Speaker 3 03:17 - 03:25 I know. It's just flashed by. It's just scary. It's like Aaron, my oldest son, he was seven. Speaker 3 03:25 - 03:31 I can't get my numbers right today. He's like seven years old. And it's just like, It's just flown by, hasn't it? Speaker 2 03:32 - 03:49 It has. I just recently saw a picture that he sent to me and he looks like he's had his feet in a grow bag. So you contacted me because you saw me on ITV News, London News it was, with the Give Us a Break campaign. Speaker 3 03:49 - 04:03 Yes, yeah, because my son at the time was getting bullied. He was in mainstream school. And when I saw you on the TV, I thought, I need to get in touch with this lady. She's amazing, and everything you said made so much sense. Speaker 3 04:03 - 04:26 And then you actually, you came and did a plug-in talk at his school, and it was brilliant. The way you spoke about Patrick and Angelo gave me so much inspiration as to how to, you know, like, just to think differently and to, you know, not to be so suppressed about his diagnosis, but more about that later. Speaker 2 04:28 - 04:41 OK, so my second guest is the lovely Percy. Oh, but Percy, you went to horoscopes, so your star sign is Taurus. Welcome, Percy. And apparently you can be very stubborn. Speaker 2 04:41 - 04:43 Well, I hadn't guessed that about you. Speaker 1 04:43 - 04:47 Oh, you'd be surprised. Speaker 2 04:48 - 05:03 So Ethan, the lovely Ethan and the talented Ethan, is one of my charity ambassadors and patrons. And Ethan is an amazing dancer. Well, he's got so many skills. You just keep sharing new skills with me all the time. Speaker 2 05:04 - 05:10 So tell me a little bit more about yourself. And I can't even believe that Ethan is 19 now. When did that happen as well? Speaker 1 05:12 - 05:20 Hi, everyone. Hi, Anna. Hi, my love. He turned 19 in September. Speaker 1 05:20 - 05:36 I mean, he looks 19, and I can't believe, you know, he's 19. He's. Yes. Well, you first started knowing him as a dancer, but now we are. Speaker 1 05:36 - 05:55 It's looking like his career now is in music. Yeah, I, well, I like to say I'm Ethan's mom, but really I should introduce myself as Peshi. I'm Peshi. I live in Essex with Ethan, their dad Doma, and my youngest, Shishi. Speaker 1 05:55 - 06:07 And besides looking after the kids, I try to help others, especially in my Zimbabwean community, we have kids with autism or adult kids with autism. Speaker 2 06:11 - 06:40 So I wanted to ask, because you know, obviously, just for people that are listening in, if we could just talk a little bit initially about diagnosis, because obviously I speak to so many parents about how long they wait, whether they're an adult, whether they're a child. So the diagnosis process, first of all, like for you, Percy, for Ethan, And do you think it's changed now further on down the line? And again, I'll ask the same question to Marla. So Pershi, when was Ethan first diagnosed? Speaker 2 06:40 - 06:41 And was it a difficult process? Speaker 1 06:43 - 07:00 He was diagnosed in 2007. He was only four at the time, because he was born in September. So he was only four at the time. We went through the process for about two years. Speaker 1 07:00 - 07:59 I would say back then it wasn't as hard as now because now I'm hearing people say just for the waiting time before any doctor can say yes we think your child is autistic we are going to go through the process. It's taking more than a year whereas with Ethan at the time it took about six months but it was the process of seeing the initial pediatrician and at the time he had hearing problems as well so it should be seen by an audiologist. So it was really a multidisciplinary team, everyone just checking whether it is hearing, whether it is gross motor skills, or it is fine motor skills, could it be autism. And besides his psychologist, most of the doctors in the multidisciplinary team thought he was an autistic, because he was such a bubbly child. Speaker 1 07:59 - 08:16 It goes there and you say hello and you start telling them the two facts about this, that and the other. And because of that, they would say, oh, he's too intelligent, he can't be autistic. But no, you need to actually look beyond all of this, because it's just telling you one or two facts. And because of that, you're fascinated. Speaker 1 08:17 - 08:18 You're not looking at the whole picture. Speaker 2 08:19 - 08:19 Yeah. Speaker 1 08:20 - 09:01 So because of that, the psychologist started working with us. And the more she worked with us, the more she could unlock other other things that Ethan was struggling with and at some point went to observatory school and after two years that's when he got his diagnosis but it was it was hard it was really really hard because there was no one helping us and because we didn't know what autism was at the time and we didn't know anyone with autism and there was no internet there was no social well there was internet but there was no social media too go and look at it and say, oh, okay, there's AKO, you know, she's telling people about this or she's sharing about that. Speaker 1 09:01 - 09:25 We had no one to tell us what was happening. So because of all of that, we found it hard. But with time and going to the library to get books and everyone that we would meet in the multidisciplinary team, I would ask questions of like, okay, so what do you think is the problem is? If they say, oh, we don't think it's autism, I'll say, okay, have more information about this. Speaker 1 09:26 - 09:36 So I think the more research I did, the more I kept coming back to autism. So eventually, yes, we did get the diagnosis in April 2007. Speaker 2 09:37 - 09:41 Okay, and how did you feel about it? Speaker 1 09:43 - 09:59 I knew it was autism, but after we came back from the from the diagnosis on the day when he said, okay, this is the final assessment. Yes, he scored high in his autism. I cried. I actually cried. Speaker 1 09:59 - 10:23 It felt like there was something in me that had died. I know it doesn't make sense to anyone, but it was as if the way I felt, the same way I felt when my dad died, but with time I heard from other parents say they felt that. But afterwards, I thought, you know what? It's fine. Speaker 1 10:24 - 10:37 It still isn't. It's still the same puppy child that, you know, that we gave birth to, you know, back in 2002. And we just knew where life is going to take us and we're here now. Yeah. Speaker 2 10:38 - 10:45 And he's amazing. He is. Yes. So, Marla, what was the process like for you? Speaker 2 10:45 - 10:58 Did you have to wait a long time? And also, did you know any of the children that were on the autism spectrum? Have you ever met anyone before? Because I have spoken to so many parents where they'd never, ever met another child on the spectrum. Speaker 2 10:58 - 11:00 So what was it like for you? Speaker 3 11:00 - 11:31 I echo what Pershi said. Aaron was diagnosed in 2007 as well and the diagnosis process at that time was around six months and he showed like traits. Obviously I didn't know he was my first child and I was pregnant with with my younger son at the time and it's a case of like he's got autism and I was like What is that? I actually said, is that a terminal illness? Speaker 3 11:31 - 11:41 Or what is it? I was absolutely clueless. And it was a case of like, well, here's a leaflet. And we didn't have smartphones in them days. Speaker 3 11:42 - 11:53 And it's like, well, look it up when you get home. And the leaflet was so generic. And it was quite hard. Like, just like Percy's, you go through like a grieving process. Speaker 3 11:53 - 12:21 because you don't know what it is, you learn about it and then you sort of grieve about it. And that was back in 2007. It didn't help when they said that the chances of you having a child, a second child with autism, and they didn't, you know, I was sort of quite early on in my pregnancy and I was like, well, I'm pregnant actually. And when it came to Kyle's diagnosis, that was totally different. Speaker 3 12:21 - 12:40 It took so much longer. It took like two years. And it was actually myself that referred him to the Morsley Centre in London because Aaron was under their care. And then again, it took another year to get an assessment. Speaker 3 12:40 - 12:54 So it took almost three years in total. And it's so much longer nowadays. Within my community, I didn't know anyone with autism. Aaron wasn't at school at the time. Speaker 3 12:54 - 13:16 So I felt so isolated. I just didn't know who to go to or, you know, and it's only after I saw you on the TV, that's when I thought, right, there are others out there. And then there was a Facebook community that you had created. And I thought, wow, OK, I'm not alone anymore. Speaker 3 13:17 - 13:20 To that point, it's quite, it's really tough. It's really, really tough. Speaker 2 13:22 - 13:40 So what we're talking about today, is obviously we created a survey. And Marla is now the Culture, Campaign and Communications Officer. So congratulations, Marla, for our charity. She works so hard for our charity and gives up so much of her time. Speaker 2 13:41 - 14:13 And I really do appreciate all the work that you do for us, Marla. So what were your experiences Would you say there was stigma attached to the Asian community? And why I'm saying this as well is because obviously I've spoken to other parents where, and not only from this country, from many, many different countries, where they feel definitely there was a stigma attached, you know, you shouldn't talk about it, you know, almost to the point of, you know, you should be ashamed because, you know, it's especially if it was a young man or a boy diagnosed on the spectrum. Speaker 2 14:14 - 14:17 What was your experience? If you don't mind sharing about it. Speaker 3 14:17 - 15:01 Not at all. I mean I can't speak for different communities but within my own Asian community it was a taboo subject and it was like no there's no such thing as autism and it's a case of like no don't don't don't tell anyone you'll get ostracized keep it quiet don't don't speak about it he'll he'll grow out of it um it you know it it was even down to my parenting skills that was You're not doing this, you're not doing that, you're not giving him the right foods and so forth. And it was quite a difficult process because autism being a hidden disability, it's really hard to explain it. Speaker 3 15:02 - 15:50 I was trying to learn about autism and I was obviously pregnant with my second child. I was sleep deprived for many years and I was trying to obtain a statement back then they used to call it a statement as opposed to an EHCP which is called now and yeah it was really really difficult because I felt so alone and so suppressed and I didn't know which way to turn and after I met you Anna and when you spoke about, as I mentioned earlier, about Patrick and Angelo and how, you know, you could just see how much, how proud you were to speak about them and you weren't afraid and you gave me those skills and I felt, well I shouldn't I should be able to speak about my son. Speaker 3 15:50 - 16:00 So I did after that. It was like the horse had bolted by then. And yeah, and I spoke about it and I've never looked back since. Speaker 2 16:01 - 16:23 I have seen a big change in you from when I first met you because you used to be quite quiet and shy, but now it's just like dead out of my work. So over to you, Pershi. So have you had any stigma attached? Because Ethan's a young, black, autistic young man. Speaker 2 16:27 - 16:31 Have you experienced anything as Marla has just spoken about? Yes, yes. Speaker 1 16:31 - 16:46 It's not only, you know, it's not only from the community, it's also from my family. My mom is a devout Christian and she's like, Oh, you know, we need to pray about this. You're not praying enough. You need to pray hard. Speaker 1 16:47 - 16:53 Oh, praying with a fast. This will go away. You need to go back to church. And I was like, I am going to church. Speaker 1 16:53 - 17:12 We are going to church. And the more we went to church and obviously cause church is very, the church that we used to go to back then was very loud and it would then overwhelm Ethan. And if we got overwhelmed, then he just couldn't take it. He'd have his ears covered. Speaker 1 17:12 - 17:28 Sometimes he'd be lying on the floor. And he would then draw attention to us. And the preacher afterwards, the preacher would be like, oh, you know, maybe you need to come to come for the service. And in the service, we'll pray more with you. Speaker 1 17:29 - 17:47 You know, you need to call me. We need to keep praying. And the more everyone said we need to be praying and others would then say, or maybe say cares, maybe a child has demons. The more I felt depressed, I won't lie, I went through a time where I was quite depressed. Speaker 1 17:48 - 18:20 I would feel like maybe I did something wrong, but I knew I hadn't done anything wrong, but I think sometimes if you have so many voices, you know, speaking to you, you tend to start believing the things that people are telling you. I knew it wasn't true, but I just needed someone to just work with me, just believe me so that I could actually get stuff sorted out. And one day I was talking to my dad, and my dad was like, I don't know why you talk to your mom so much. I was like, why? Speaker 1 18:20 - 18:29 At that day, mom had gone to church. Then he goes, you know she's a serious Christian. She's not going to understand all of this. What are they saying you should do? Speaker 1 18:30 - 18:41 And I told him everything that was going on. And he said to me, It's fine. Has he changed since the last time I saw him?" I said, no. Then he said to me, then there's nothing wrong with him. Speaker 1 18:41 - 19:01 You just need to work with these people that are trying to help him so that he can get the, he would say the documents, so that you get the documents that he needs. Then he can go to a good school and one day he's going to have a good profession. I believe in that. I was like, yes, he'll be fine. Speaker 1 19:02 - 19:23 The more I talk to death, the more I would feel calmer afterwards. And because of that, me and Jemma then decided, you know what, we're going to be fine. Let's just ignore everyone and just doing us. And so because of that, we started ignoring all the people that were saying things that we thought were negative to us. Speaker 1 19:24 - 19:42 And we then got Ethan his statement. We got Ethan his place at a special school. started getting into dancing and if anyone say to me, I think maybe this is because of witchcraft or I think this is a case or I think it's a demon. I've heard that so many times. Speaker 1 19:42 - 19:53 No, it's not right. I would just say to them, no, this is autism. That's an education. And I thought the more people would say stuff and educate them, the better. Speaker 1 19:53 - 19:56 Sorry, I like to say it too. That's OK. Speaker 2 19:56 - 20:17 It's a downfall of Skype, isn't it? Because it's just that everyone sort of talks over everybody. Yes, yes. With all of that going on in the background, can I ask you, Pershi, what was motivating you to keep going and to keep fighting for your son, to make sure he got what he needed to help him get through this world, to navigate through this world? Speaker 1 20:18 - 20:29 I think my dad. My dad, he was, yeah, he was my biggest champion. He said to me, no, you can do it. He'd ask me when the next meeting is, I'd tell him. Speaker 1 20:30 - 20:38 And my dad, this is someone that was, at the time, he was living in another country. At the time, I was in Zimbabwe. He'd call me, like, so how did the meeting go? Before the meeting, he'd call me. Speaker 1 20:38 - 20:52 Then afterwards, he'd call me. He would always motivate me. And because of that, I then started believing in myself. Okay, okay, so if Deb is saying, I can do this, okay, then I'd be motivated when I get to that meeting. Speaker 1 20:53 - 21:06 I would ask questions. I wouldn't just let them just tell me what's happening. I'd also ask questions. And if they say, this is what's happening, or we think with this fine gross motor skills, maybe, for example, if they say it's at 19 months at the time, maybe it's at 13 months. Speaker 1 21:06 - 21:16 Okay, so what can I do to help them? So I would always ask questions. So having Deb in my corner motivated me just keep going. Speaker 2 21:18 - 21:42 That's great to hear about your dad. Everybody needs somebody because it is a tough process to go through and obviously all of the hurdles that parents have to climb over and all those dreadful forms that you have to fill out. It's just so Marla What kept you motivated? Because obviously I know you've had a difficult time with the process and everything else that goes with it. Speaker 2 21:42 - 21:57 And obviously, you know, with the Asian community and that, I know you've spoken to me about before. So what kept you motivated? Because obviously there's a lot of parents that are listening in as well that are really struggling, especially now in these uncertain times with everything that's going on. So what kept you going? Speaker 2 21:57 - 21:59 What was motivating you? Speaker 3 21:59 - 22:26 It was actually Aaron. I thought, if I can't help him, who can? And also through this process, I met a wonderful lady called Adriana at the school, and we instantly struck up a friendship after we met at an SEN group that was held at the school. And when I spoke to her about everything she did for her son, and that was it. Speaker 3 22:26 - 22:44 She just kept me going and she'd just gone through a tribunal herself for her eldest son and it was just knowing that there is light at the end of the tunnel. She was my strength, she really was. and still is in many ways. Speaker 2 22:45 - 23:28 She's such a lovely woman and she's so bubbly because obviously I know Adriana and it's just when she's in the room she just keeps everyone laughing and she comes out with some fantastic jokes. The other thing I wanted to ask both of you as well is that for parents that are going through the process now because I know we get a lot of parents that listening in that just starting the process and they feel really overwhelmed. If you could go back, I'll start with you Marla and then I'll go to Percy, if you could go back and do things differently what would you do differently and what tips and advice would you give a parent that's just starting on the ladder? Speaker 3 23:29 - 24:35 I would learn as much as I can about autism to start with and also I would read, like say for example, depending on the child, if that parent or carer feels that their child should go to specialist provision, to go through the EHCP process and trust no one. Ipsia is a great website in terms of navigation, the processes. Yeah and yeah and literally just empower yourself and and to make sure that you've got a spine of steel and to learn so much about the process and not to get hoodwinked into oh you can't have an EHCP because you're not allowed to apply for it yourself or so forth, because you do get misled quite a bit within the education system itself. Speaker 3 24:37 - 24:54 And I've heard like some horror stories about, you know, we can't apply this year for an EHCP. And I'm like, yes, you can, you can do that. And a parent can do it themselves, because I did that with with my youngest son, Kyle, I applied for it myself. And yeah, and literally go through the process. Speaker 3 24:54 - 25:29 And yeah, and just Go to local community groups, like special needs groups, and get involved in those meetings and network with other parents in similar situations to yourself. When you've got a strong affiliation or other people in a similar position to yourself, that is so comforting. It's so comforting. And then you can also get a lot of direction as well. Speaker 2 25:29 - 25:47 You can. Just to remind everyone, IPSEA is spelled I-P-S-E-A, and there's lots of template letters on there as well, so you don't have to reinvent the wheel. So if you check out the letters for whatever stage that you are, you might find something there that you can adapt that's going to suit your particular case. So please check it out. Speaker 2 25:47 - 25:53 A great website. IPSEA. My husband used to volunteer for them as well. They're fantastic. Speaker 2 25:54 - 25:59 So, Percy, how about you? Speaker 1 25:59 - 26:31 Okay, I'll start with advice. I would say to other parents, especially when they're going through diagnosis, to just research. I think the more you research, the more you empower yourself as an individual. Because then when you go to a meeting, if you ask something, you know, you know, people are talking about something and I'll try to say, oh, I know what you're talking about. Speaker 1 26:32 - 27:06 I think most times if if we went to a meeting and we kind of like talked over and once they realized that I knew what they were talking about, they stopped that. So I think I would say to someone, just do your research, go there armed with information because the more you know, The more people can't lie to you, they can't tell you, you can't just say, like Mana was saying about getting a statement or getting an AACP aid, that they'll say to you, oh, AACP, sorry. That they say to you, oh, you know, you need to wait. Speaker 1 27:06 - 27:17 No, I think the more you know, the more you can just get resources for your child, no one is gonna lie to you or no one's gonna, you know, tell you to wait or tell you otherwise. Speaker 2 27:19 - 27:53 So, Marla, we obviously have this campaign within the charity that's called Together We Are A Community and we are going to be launching a survey. And all the information is going to be on the charity website under the cultural issues campaign that we have. So obviously, we've been talking about this for a little while now, because I have spoken to many families, as have you, as has Tali, as have many others, that they are feeling stigmatisation, cultural stigmatisation. pressures within the family. Speaker 2 27:53 - 28:09 And also, you know, what you were talking about, Hershey extended family as well. So there is a survey that's out on the charity website. So do you want to chat a little bit more about the survey, Marla? What kind of questions that we put on there for people to answer? Speaker 2 28:09 - 28:19 And obviously, if people can share it as well, that would be fantastic. We'd really appreciate that. Marla, do you want to talk a little bit more about that? Speaker 3 28:19 - 29:37 Yeah, the survey is going to be launched on Thursday I believe and we want as many people to complete it from all communities and you know it's just important to capture that data and just to just to complete it and to reach out. There will be an option in there if whoever completes the form, if they'd like to share their story, if they'd like to get in touch in Strictness of Confidence and to do so and to share their experiences, not just on the survey, but to actually come forward and share their story if you like. But it's A very short survey, it's not pages long or anything but it's about 10 questions and it will cover the age and what ethnic background the child and the parent is and about whether they disagree or agree with certain statements and it's also about the diagnosis as Speaker 3 29:37 - 29:48 well and it's also a bit about which local authority that they're under and yeah, it'll all be revealed. Speaker 2 29:51 - 30:29 We're going to be launching it on Gateway Radio and obviously thank you to Women's Radio, we are obviously speaking about it now. All the information will be on the charity website which is www.annakennedyonline.com and it will be shared far and wide so we can get as many people as possible to fill out the survey and then obviously the results of the survey we will share across social media and again on the charity website. So, Percy, why do you think, what do you think that the challenges are of representation? Speaker 2 30:29 - 30:47 Why do you think it's so difficult? Because I've read so many different articles in the media saying that they feel that, you know, Asian community or the black community are not represented within reference to disability. I think it's getting better now because people are stepping up and shouting out. But why? Speaker 2 30:48 - 30:56 Why do you think that it's been difficult in the past and why is it so important to represent? Obviously, I know what the answer is, but I'm going to ask you, what do you think? Speaker 1 30:57 - 31:42 I think one of the reasons we don't have media presence is news, films, music. You don't see or hear that this person, very rarely would you hear, oh, this person is black and autistic, Asian and an actress. Rarely do you see people like like even in the media. And I think the more people like our autistic or other disability children are seen, I think the more people are aware that there's people like that. Speaker 1 31:43 - 32:03 And also there's less kids with autism are diagnosed with ADHD. Mostly if it's boys, it tends to be. I don't have the statistics, so I won't quote him. But in my opinion, I think a lot of them are seen as naughty. Speaker 1 32:04 - 32:38 So if you have a black child at school who is having issues, maybe they are being overwhelmed with the noise or the colors or smell, teachers will say, oh, you know, that child is just playing up. As it is, I have friends who have been going to pediatricians for 10, 15 years to get their kids diagnosed with autism. And up to now, there's no diagnosis. Everyone can see that this child is autistic. Speaker 1 32:39 - 33:04 But no one wants to diagnose. So I think there's lack of diagnosis and no media presence. And if there is a diagnosis, there isn't enough resources allocated. And it's difficult to get hold of, say, a social worker to say, OK, I'm struggling or what are you struggling with? Speaker 1 33:04 - 33:23 And another thing that I have found in the past that was an issue for us was when I wanted Eastern to get respite, the first thing I'd be asked, oh, do you have documentation? Do you have your papers? Yes, I have my papers, but What does that have to do with Ethan being autistic? He was born here. Speaker 1 33:23 - 33:49 He needs, he's a child who needs resources. So there's so many questions that you get asked. And whilst they're asking so many, once we have us asking so many questions, you're not getting any support. And if you seem to know too much, then you are labeled that difficult like human. Speaker 1 33:49 - 34:18 There's so many little things that tend to happen. Sometimes you ask yourself, am I imagining what is happening? I think because of that, people also tend to then not ask for services because they know so-and-so was refused help, or they know once you get the help, then you're going to be labeled as wanting to take everything. Speaker 2 34:20 - 34:53 I totally get where you're coming from. I was reading as well that there was a research document that the National Autistic Society did and they wanted to find out what were some of the key reasons why the black autistic community are not receiving appropriate support. And the five key themes that came out of the discussions were that challenges getting a diagnosis, which we were just chatting about. Some participants considered levels of understanding of autism to be lower in their communities, which may have delayed the diagnosis. Speaker 2 34:53 - 35:16 Others said that teachers can fail to spot characteristics, which we've just spoken about, of autism due to incorrect assumptions about a child's behaviour or language abilities. barriers to accessing support services. Parents talk about challenges understanding autism and knowing what services are available due to information often only being available in English. Few translation services are professional uses of jargon. Speaker 2 35:17 - 35:39 Communication problems with professionals. Some families said they didn't feel confident dealing with professionals, or they felt professionals could be patronising, I've heard that before, or lacking in cultural understanding. Others said that some people from the BAME communities could hold suspicious attitudes towards professionals and authorities. The fourth thing that came out, awareness and understanding of awesome within the communities. Speaker 2 35:39 - 36:03 Closed communities can be an important source of support for people, but many participants reported coming across judgmental attitudes. And I've shared this before, that You know, a few years ago when I went to speak to, I think, something like 150 people in an Asian community, I asked, does anybody in the room have a child or an adult that's on the autism spectrum? And no one put their hand up. And I thought, I can't believe that. Speaker 2 36:04 - 36:28 And then at the end of the evening, it was a lovely evening, as I was going out the door, about 10 people came to chat to myself and Tali. who arranged the meeting. And they said that their children were autistic, but they didn't want to put their hand up in front of everyone because there's still stigma attached or they would be judged, which is very, very sad. And I believe now they've set up their own support group, which didn't exist. Speaker 2 36:28 - 36:51 So I'm so pleased that from that meeting, something has happened. And the last thing that the National Autistic Society is saying is denial and isolation. Some families said that they initially refused to acknowledge that their child was autistic. Others believed that their children's difficulties should remain private, as we've just said, and not be discussed outside the home, along with feelings of blame and shame. Speaker 2 36:51 - 37:30 I always remember I spoke to a family where the husband was ashamed because their son had autism, and so every time someone came to their house they were told to go upstairs and not even come downstairs but no reason whatsoever, which for me is extremely sad. In your experience, Marla, what challenges do you think have you experienced, or I know you've spoken to a lot of parents as well, and some of the things that I've just highlighted there in that report, have you discovered some of those points that some of the parents have talked to or even yourself, have you experienced any of those? Speaker 3 37:31 - 38:16 Definitely, I mean ethnicity is a key determinant, like it's a determinant within the health qualities in England Basically, ethnic communities, I believe, and it's been reported as well, face poor access to healthcare and access to services because of the poor cultural awareness that you touched upon, and from service providers as well. In education, the response to special needs for a child, it varies upon the setting, as well as the individual's perceptions. This then leads to systemic racism, where you have two protected characteristics that get targeted as opposed to one. Speaker 3 38:17 - 38:53 And the famous way is that ethnic communities are hard to reach. Well, if you're not looking for us, we're not hard to reach exactly. We're not hard to reach at all. And representation definitely matters because we all bring different perspectives to the table, Percy with one, myself with the other, and we need to like share and our experiences when it comes to identities and disparities and the different sort of failings that we've experienced. Speaker 3 38:55 - 39:58 Percy mentioned about media-wise, like whilst racism has been exposed worldwide, there was a series of short films, Small Axe, that was aired on the BBC and there was one on education. and that basically uncovered how black children have the odds like stacked against them and it was based on a true life story but it actually happens now with at the time back in the 70s they refer to it as subnormal schools but it still carries on it still carries on and there is like not media coverage for you know, a brown person with autism. I think I've watched one film, it was years ago, My Name is Khan, and it covered autism within an Asian character, but there's still not much of that, hardly anything in fact, within like the British media. Speaker 2 40:00 - 40:05 Why do you think people are afraid to talk about race and special educational needs? What do you think the problem is? Speaker 3 40:07 - 40:59 I think that there is racism within special education needs and I'm just basing upon my own experiences and there are clear disparities. There are clear disparities and I found this from an article that I wrote with Margaret Hay from Special Needs Jungle, where there's an article saying, finding the racial minority voices in SEND. And it was actually during lockdown last year, I noticed that there were no recordings of ethnic minorities with tribunal stats and there hadn't been since 2017. I contacted the Ministry of Justice and asked them for these statistics. Speaker 3 40:59 - 41:30 having gone through so many myself, and got a weak response. And then I actually met Marguerite online, which is like the joy of COVID, which did actually, you know, was a very positive experience. And we wrote this article together, and it's on both Anna Kennedy Online and Special Needs Jungle, where There was no reason for those stats to be withheld. Why are they being withheld? Speaker 3 41:31 - 41:40 That in itself is quite a loaded question. sort of topic if you like. Speaker 2 41:40 - 41:43 Have they said they're going to do anything about it? Speaker 3 41:44 - 42:31 No, as such we're still waiting, we still want responses to both that article as well as the survey that's going to be going out. But the other thing I noticed is when Tony Sewell, Dr Sewell, wrote his 258 page report to decide whether there was institutional racism within Britain. There was no one referral to ethnic minorities with disabilities, which I find quite alarming. There's just like a footnote on there saying we're going to refer it back to the Department of Education. Speaker 3 42:32 - 42:36 So you tend to go around in circles. Speaker 2 42:36 - 42:56 If people want to check out Special Needs Jungle, by the way, it's www.specialneedsjungle.com. And the article that Marla is referring to was written on November the 12th, 2021. And it's called Finding the Racial Minority Voices and Send. It's on that website and it's also on our charity website. Speaker 2 42:56 - 43:09 So time is going on. I'm trying to get in as much as possible. So Percy, how's Ethan getting on now? And what progress has he made? Speaker 2 43:09 - 43:16 And obviously, I know he's 19. So where can you see him? What's his pathway at the moment? Speaker 1 43:17 - 43:20 Sorry, can you repeat that, please? Especially at the beginning. Speaker 2 43:20 - 43:31 Oh, yeah. Ethan is now 19. And, you know, what is he doing now? Because obviously, you've spoken about his point where he first got diagnosed and the difficulties within the extended family and within the church. Speaker 2 43:31 - 43:37 So how is he progressing now? So people are probably listening and thinking, what's happening to Ethan? What is he doing now? Speaker 1 43:38 - 43:55 OK. He's at college now. He's doing a BTEC in games development. and fingers crossed everything going okay, he's going to be starting a degree in gaming development next September. Speaker 2 43:56 - 43:57 Wow. Speaker 1 43:58 - 44:11 It was a struggle, it was a struggle getting here because when he went to a special school from 2007 till 2019. Speaker 2 44:12 - 44:13 Right. Speaker 1 44:13 - 44:34 And going from a special school to a mainstream college, he struggled a lot. He was just overwhelmed with everything. He was starting to get panic attacks at college. So we got him private therapy, because I knew that JP was going to take forever. Speaker 1 44:34 - 44:43 We got him a couple of sessions with a private therapist. That helped him a lot. And since then, his confidence has gone up. He's enjoying college. Speaker 1 44:43 - 45:09 He's doing really well at college. if he's not doing his college work, he's doing his music, he's got a couple of albums that he wants to release to do with lockdown. Last year, he did one for Black Lives Matter. And right now, he just wants to, he just needs to finish one or two things with his album. Speaker 1 45:09 - 45:16 He's going to the studio. Every day, all day, all he does is music. Speaker 2 45:16 - 45:31 Oh, well, I'm looking forward to that because obviously he did something for anti-bullying week for us. He's always doing things to support the charity with our ambassador, which we are very, very grateful for. So, Marla, what pathway is Aaron on and Kyle? So what can you see them doing? Speaker 2 45:31 - 45:33 I think isn't Aaron intermedia now? Speaker 3 45:33 - 45:50 He's intermedia and he's on a course now, post-16, and he's doing really, really well. He's really, yeah, he's on the right path. My youngest one's in mainstream. Kyle, he's absolutely doing well there as well. Speaker 3 45:50 - 46:01 So it's all been worth it. It wasn't quite like this this time last year. But they're both in the right places now. So that's really, really positive. Speaker 2 46:02 - 46:13 Talking about media, I remember he came to the Women's Radio studios and he wrote an article for the charity website. That just seems such a long time ago now. Speaker 3 46:13 - 46:17 It's just flown. It really has flown, Anna. Speaker 2 46:17 - 46:34 Trust me, the radio program is also about well-being, looking after ourselves. So as parents, busy parents, juggling many, many balls in the air. So, Marla, what do you do to help yourself with your own mental health? And how was going through lockdown? Speaker 2 46:35 - 46:39 And what did you do to keep everyone motivated, including yourself? Speaker 3 46:39 - 47:20 Well, that's an interesting question. Yeah, during lockdown, I was actually going through sort of, well, all in all, it was about three tribunals. But it was a blessing in a way because I had Aaron at home and I could look after him properly and it took him, you know, it gave him time to overcome what he'd been through and so forth. And yeah, it's been quite an interesting, I mean, I was diagnosed with rheumatoid arthritis as well during this time, so I've had to be very careful and I've had to self-isolate. Speaker 3 47:22 - 47:57 I think what's kept me going is that both my children are in the right school. In terms of relaxation, I try and do yoga as much as I possibly can. can't really do it. Chair yoga and stuff like that I hear about and yeah I try and do that and I listen to music and both my sons are into music so that's been quite good and we've also been doing a lot of cooking and or trying to at least like new Speaker 3 47:57 - 48:15 recipes and stuff and it's been mostly rewarding in some case a bit of a disaster but But it's been really nice, sort of like, being together as a family and doing things together. Yeah, so that's been quite positive. Speaker 2 48:15 - 48:26 Yeah, it's because it's important to switch off because you can't keep focusing on, you know, everything that you're doing all the time. You've got to try and switch off and just be marvellous, not be marvellous, not be worried, just be marvellous. Speaker 3 48:27 - 48:29 Absolutely. Absolutely. Speaker 2 48:31 - 48:42 How did you get through lockdown and how has it been for you? And what do you do to relax when you're not at home and when you're not just when you're just personally, what is it that you do? Speaker 1 48:43 - 49:13 Well, unfortunately, with Covid, I had to because Gigi was going through 11 plus, so she was doing her 11 plus tutorial. So because she didn't have a tutor she refused the tutor so we were trying to help her with that so lots of grammar and math stuff that I'm not really good at so that was our big chunk in the in the lockdown and baking we did a lot of baking and gardening. Okay. Speaker 1 49:13 - 49:38 I'm not a good gardener but she is so she would just make me buy loads of different stuff and you would just order it and just go and plant whatever with lots of lovely green vegetables with kale, with spinach. We had lots of tomatoes. Just lots of stuff, as well as flowers and lavender. I said, oh, maybe if you've got lots of lavender, it will help you sleep. Speaker 1 49:39 - 49:57 That's not helped at all. So we did all of that. And I listen to a lot of music when I can't sleep or read the boring documentaries to see if I can learn something and haven't learned anything yet. And also watching comedy. Speaker 1 49:59 - 50:02 Yeah, I'm watching comedy. It's relaxing. I love that. Speaker 2 50:03 - 50:17 Yeah, I've spoken to, it was actually Tally, one of our volunteers, she was saying that in the morning her husband said no news on because it depresses everyone. So they put a comedy program on. Speaker 1 50:20 - 50:21 Wow. Speaker 2 50:23 - 50:35 When I think of you, I think of your beautiful clothes that you wear, you're always so colourful, those gorgeous necklaces and earrings. Do you actually make your own clothes? Nah, I wish. I wish. Speaker 1 50:35 - 50:46 I want to try. I want to start making them though. No, I tend to buy most of my stuff from like, people sell African clothes and accessories. Yeah. Speaker 1 50:46 - 50:49 And sometimes I buy stuff from South Africa. Speaker 2 50:50 - 51:05 Oh, wow. They're just always so beautiful. You always look so beautifully turned out and lovely jewellery that you wear. And you've always got a smile on your face, even though I know that you struggle sometimes, you know, with the health issues that you have. Speaker 2 51:06 - 51:10 But you're just a joy to talk to. So I just wanted to share that with you. Speaker 1 51:10 - 51:18 Oh, thank you. I really try. Because I find if I put bright clothes on and bright accessories, it brightens my mood. Speaker 2 51:18 - 51:19 Yeah. Speaker 1 51:19 - 51:27 If I just wear anything that's just down, it brings me down. So I try to just do that. But thank you so much. It's really lovely. Speaker 2 51:27 - 51:34 So Marla, I just wanted to chat a little bit with you about your experience as well, because obviously you've been working with me for a long time and I think you need a gold medal. Speaker 3 51:35 - 51:38 Ah! Oh, I can't wait. Speaker 2 51:39 - 51:59 talking about the charity and how it's grown and, you know, obviously working on the website and all of our events. Do you want to talk a little bit about, because obviously I can talk about it to people, but I like it when other people talk about their experiences with the charity and the things that you've been doing. So how have you seen us evolve over the, I can't remember how many years it is now, 12, 13 years, something like that? Speaker 3 51:59 - 52:41 It's been, yeah, it's been definitely over a decade and it's been such a journey, Anna, and, you know, friendships with yourself and others, it's been so rewarding and, you know, I love the events that we do, like the, you know, Autism's Got Talent, the Hero, the Expo, and it's just, the charity has just grown, it's evolved, and so much more coverage out there, and I think because you're the driving force behind it Anna, you just don't give up and you just go on and you inspire so many of us to keep going on as well and it's been great, it's been an incredible journey and it's all been positive. Speaker 2 52:42 - 52:59 Yeah, I think that that's what we all really value and what we have valued throughout the difficult and uncertain times that we've had. We've all really stuck together, don't you think? And even with our little WhatsApp groups, you know, sharing how we're feeling, whether we're feeling rubbish or we're feeling happy or we're sharing jokes or whatever it is. I think that's helped. Speaker 2 52:59 - 53:04 all of us as well to keep motivated and to keep the charity together. Speaker 3 53:04 - 53:09 Do you feel that? Absolutely. Definitely. And it's just, it's just been nice. Speaker 3 53:10 - 53:29 Whilst we've all been in our little bubbles, whether we've been in lockdown or self-isolating, it's just nice to have conversations. And it's just been nice to have groups that you can turn to. And it's certainly been an interesting couple of years in particular. Speaker 2 53:29 - 53:41 Yeah. So, Percy, how about you? How would you feel your experiences have been with the charity? And Autumn's Got Talent and Ethan, because he always just shines when he's on the stage for me. Speaker 2 53:41 - 53:54 He used to be really, really quiet when I first met him, but I've noticed in the last couple of years he's more vocal, especially with his raps that he's been writing as well for us. I can see a difference in him and involvement if he could become more mature. Speaker 1 53:56 - 54:11 Yeah, definitely. He always says after After each performance, when he performed with AKO, that, oh, you know, mom, those are my people. They just get me. You know, we're just, you know, when we're rehearsing, you know, we're all just frightened. Speaker 1 54:11 - 54:19 He's like, oh, really? I said, yes, I love them all. And he really, he really does. And is that at all when he first met you back in 2016? Speaker 1 54:19 - 54:29 Yeah. I mean, he was quiet. But afterwards, he said, that was one of the best days I've ever had. Everyone was just so nice to me. Speaker 1 54:29 - 54:43 Everyone just got me and said, yeah, I could see that. And he said, I'm going to come back. And he did come back. He finds it every time when he talks to you or talks to anyone, anyone in HAO, everyone just gets him. Speaker 1 54:43 - 54:58 No one judges him. And I think because of that, he can be himself. And when I see all of you ladies, you all, you know, you all look after us. I'll have been looked after sometimes, you know? Speaker 1 54:58 - 55:13 So, it's lovely. It's also just lovely to have people who know what you're going through. When you say, oh, I, you know, we have this issue with, you know, someone will give you the experience and how they dealt with that. And it's helpful. Speaker 1 55:13 - 55:24 I remember the other time, I can't remember who I was talking to. I was having issues with the social work and they said to me, oh, have you tried this? I said, oh, I haven't tried that. And I tried it and everything, you know, went well. Speaker 1 55:24 - 55:39 So I think it's the thing that, you know, everyone looks after each other. We all look after each other. And also, you know, in between sending, you know, messages here and there, oh, hi, Keshi, you know, how are you getting on? You know, how's the family? Speaker 1 55:40 - 55:46 You know, I appreciate that. It's lovely to know there's people out there who, you know, who look after, who look out for others. Speaker 2 55:47 - 56:01 Yeah. And also, personally, Ethan won a scholarship, didn't he, through the charity for the Pineapple Performing Arts. And, again, I saw him growing with that because, obviously, they used to perform together on stage. So, it was quite a few years now. Speaker 2 56:01 - 56:08 So, do you think Ethan will continue with his dancing and his singing and everything to do with performing arts? Speaker 1 56:08 - 56:26 Well, he still dances at home daily. Every day between half five and half six, he dances for an hour. He goes to the dining room, dances for an hour. So he's definitely, it's just that right now, he says he just wants to see whether he can put an album out there. Speaker 1 56:26 - 56:45 I think it's just his, what he's passionate about right now, to just see if he can have an album. So he's always goal-oriented. If there's one thing that he wanted, okay, I'll focus on this. So right now, what he's focusing is having his album out. Speaker 1 56:46 - 56:52 They're still calling you with dancing, though, because you still dance daily. So I don't think you'll ever give up dancing. Speaker 2 56:52 - 57:00 Now, I know dancing is good. It definitely keeps you feeling young and it's good for you. It's good for the mind. It's good for the soul. Speaker 2 57:01 - 57:15 So Marla, you're also a trustee for a foundation that promote the care and welfare and interest of treatment and advanced education of adults. That's a long title. And children have cerebral palsy and other profound disabilities. We've got a few minutes. Speaker 2 57:15 - 57:21 Can you tell us a little bit more about what's the name of this organization? Do people want to check it out? Speaker 3 57:21 - 57:35 Yeah, it's the Garwood Foundation. I recently became a trustee for them. And I just, I visited this, they've got a school, they've got a day centre and they've got a residential home. Speaker 2 57:35 - 57:40 They're actually based in Croydon. Speaker 3 57:40 - 58:07 Yeah, so they're really, it was just a lovely feel. I love what they do and there's some exciting new developments that are going to be taking place later this year. So yeah, and certainly just keep checking back on their websites, thegarwoodfoundation.org. GARWOOD, G-A-R-W-O-O-D Foundation. Speaker 3 58:07 - 58:32 Yeah. And they have charity shops and yeah, they've got a lot of, you know, like sort of community spaces and stuff. And it's amazing the service that they provide, not just locally, but for surrounding boroughs as well. Yeah, it was just, you know, I just felt at home when I went there. Speaker 3 58:32 - 58:37 And I really like the goals that they're trying to achieve. Speaker 2 58:38 - 58:49 Thank you. Yeah, because we need more provision for adults as well. So we've come into the last couple of minutes now. And I just wanted to say thank you to both Lady Marla, to the lovely Percy. Speaker 2 58:49 - 59:02 And it's been a joy talking to you. It's gone really quick. I believe it's an hour has just flown by. There's going to be an article on the charity website just to remind everybody about everything that we've been talking about just now, any links that we may have shared. Speaker 2 59:02 - 59:21 So just to remind you, it's www.annakennedyonline.com. It will be on the latest news section. And again, just keep checking out the charity website. If you want to know what we're doing, please subscribe and it's free to our charity newsletter which Marla coordinates kindly for us and puts that together. Speaker 2 59:21 - 59:43 And don't forget, if you want to show us your talent, Autumn's Got Talent, send in your entries before the end of March. Again, that's all on the charity website. So ladies, I just wanted to say thank you again very much for talking to me and please everyone check out the survey and again that'll be on the charity website. Complete the survey and share it with your friends and family. Speaker 2 59:43 - 59:50 The more we have, the more information we can share. So thank you ladies. Thank you. Thank you for having us. Speaker 3 59:50 - 59:52 Thank you for the opportunity. Speaker 2 59:52 - 59:56 Oh thank you. One day at a time. Keep going. We will get there. Speaker 2 59:56 - 59:59 Bye. Bye. Bye. Thank you.