All Things Autism – Leo Andrade

Hello, it's Anna Kennedy and I'm at women's radio station, and we're going to be talking about all things autism. And my guest today is Leo Andrade. Hello, Leo, how are you? Hello, Anna. I'm good, I'm good. Thank you so much for inviting me. You're welcome. So honored to be here with you. So today we're going to be talking about your son and the difficulties that he's been having. And before we go into conversation, just want to sort of update you on the Autism Hero Awards. So not long to go. September 5th is the closing date, so if you'd like to nominate somebody, it's www.autismheroawards.com. we have 12 different categories. So if you'd like to nominate your hero, that goes the extra mile, whether it's a mom, a dad, a business, a teacher, a nana, a granddad, anybody that you feel that's made a big difference to your life, check in and nominate your hero, please. Bit of a weird day today. I was on my way here on the tube and one of my Facebook friends that's been following me for quite some time, and her name's Anna, too. I've actually met two Anna's recently and I haven't met an Anna for a long time. And she has a daughter on the spectrum. She's on holiday from Italy and she asked if she could meet up with me. So that's the power of social media, something positive. So we're going to be meeting up for the first time after we've been chatting on Facebook for quite some time. And then last week I had a photo shoot with Prima magazine that's actually coming out the the first week of September. And my makeup artist, her name was Anna, and she had a son with autism. So what are the chances of that going through a photo shoot? So, yeah, if you're interested in having a look, it's in Prima magazine the first week in September. So that was an experience, too. Okay, Leo, so you have two sons on the spectrum and I've just found out you've got a daughter as well, which I didn't know. So how old are your children? I do. So Jamie is 26 and she's a girl. Because people often ask. Jamie is very rare, so, yes, she's a girl. And then there's Stephen, who's 23, and then there's Josh, who's 11. Okay, so both of your sons have a diagnosis of an autism spectrum condition? They do indeed. Stephen is in a more severe side, whereas Josh has. He doesn't have Asperger's, but he has, is in a mild autism with more, more learning disabilities than autism on itself. Okay, so we're going to be talking a little bit more about Stephen and the difficulties that you've been having. So you've told me how old Stephen is and when was he diagnosed and what is his diagnosis? Okay. So Stephen was diagnosed when he was six and a half years old. He obviously we could see that he had difficulties from very early on, around 17 months old onwards. He didn't speak. He stopped speaking. How old was that? He was 17 months. Okay. And that was actually coincidentally, which made me believe for a very long time that it was the MMR. He had the MMR at 16 months, had a huge fever, really hard, awful. And then 17 months he stopped talking right off. But I thought it's because he's ill, he has all these, this fever. So I thought maybe it's just he's not talking because of that. And then when the fever went down 17 months and he wouldn't speak, then I realized that he lost all his motor skills that he had learned. And funnily enough, by that age, he actually spoke three languages. He could count up until 20 in three language, Portuguese, Spanish and English. Count, say a few words in three languages, say I want this or that, and then it's just gone. And then at around 18 months, 19 months old, he was having horrendous time. He would scream and cry for 24 hours straight. By two and a half, he started self harming. That must have been really difficult for you. Absolutely. It was horrendous. And it continued like that until he was nearly seven. And he didn't have a school. There was no schools in Islington that could support him at the time. So what support did you get through those years? He guessed where he would go. He was in a playgroup. He stayed in a playgroup. That is a playgroup at the time for children up to three and a half. And he stayed there until he was nearly six. Okay. And then he didn't have school and I kept him home for the next two years. Okay. Was horrendous. And when we finally got somebody to listen to me because everywhere I went, no one knew what was happening. You know, what was it that Stephen had that made him feel like that? My worst thing was being blamed. I was being blamed by that. At the time that the child's pediatrician, she called me psychotic. She called me all sorts of names. Paranoid schizophrenic mother. Yeah, I've spoken to quite a few moms that, you know, say that they've been diagnosed with Munchausen by proxy because they want their child to be ill, which is like, can you imagine that if you're a mom of a, you know, a young lad on the spectrum, and then also you're trying to, you know, look after your other son and your daughter? So the impact on the whole family, because she is three and a half years older than Steven and, yes, Anna, indeed. I felt that she was calling me that, that I had that syndrome, you know, to the point where afterwards I had nowhere else to go. I kept him at home. But the thing is, I was working. I was a working mother, and I had a very demanding job at the time. And I worked between 12 and 14 hours a day. And then to have to look after him during the night, he would not sleep, as, you know, they don't sleep. I think I was lucky to have maybe 10 minutes of sleep at night. You just grab it as and when you can. Exactly. But because I was working and I had this very demanding job was really difficult. And then the playgroup said to me, because of his age, they said, we have kept him here, but we don't think it's fair on him or the other children. At least they kept him. So you had some. And they were really helpful. And then she said, we fought. We bring a child psychologist from Islington in to see if she could do anything, because nobody's listening to you or us, indeed, in fact. And so the child psychologist comes in just to observe him. And she observed him for about three days. And then she calls me and she says, I think Stephen has autism. And, you know, at the time, this was early noughts. And I, you know, between. He was born in 95. Between that and then the early Nords, I didn't know much about autism. And, you know, the first thing that came to my head was, oh, he's definitely not Rain Man. Well, that's the thing, because obviously at the time, very similar to Patrick and Angelo diagnosed around that time as well, that, you know, you don't really know an awful lot about autism. No, you don't. And it's very much like that. You've got to do your own research because no one sits down with you and says, this is what autism is. So Stephen now has ended up in an assessment treatment unit. And when did he go there? So throughout the years that I had no help whatsoever, he was in a special school in Islington. And then for a Whole year, from the age of 14 till 15, he was locked in a sensory room that couldn't support him. So he. From there we thought, okay, the best thing for him to go was suggested for him to go to a residential school where he went to a special school in Norfolk and then went downwards from there and he nearly died. He had a huge accident at the school. And from there, that's when we got. The school said, we cannot support him. So we're giving you notice. And the only way for him to go, the only place for him to go was a hospital. Okay, so can I just stop you there, Leo? We're gonna go for a break now. So we're at women's radio Station talking all things autism. So we're gonna be talking to Leo about your son being in the assessment treatment unit and talk about, you know, how long he was there, you know, when is he coming out? Because I know there's been a long battle and it's been on television and you've also got a petition out there to try and get some support. So we're going to be talking about that, if that's okay with you. Sure, absolutely. So thank you very much. So we're at women's radio station, so if you're interested in listening to this piece, it's on www.womensradiostation.com WRS Women's Radio Station, Voice of Women Worldwide, Sarah's Universal Soul Show. What does your soul or spirituality mean to you? Welcome to future Classical Woman Awards with me, Stefania Passamonte on women's radio station. Welcome back. 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Supporting women is our passion. We're currently welcoming donations to help towards our running costs to keep this important initiative alive. To donate, simply head to our website. Every little will help. Hi, this is Anna Kennedy. We're at Women's radio station and my guest today is Leo Andrade. So Leo's son Stephen is in his early 20s, is detained in an assessment and treatment unit in Clacton on sea where he's on eight, I repeat, eight antipsychotic medications and he regularly self harms. It was reported that Leo is trying to get her son home. We're going to be talking about that and you've built up a campaign and hopefully we're going to hear some positive news that he's going to be coming home soon. So, Leo, talk to me about your son being in the assessment and treatment unit and why is he on eight antipsychotic medications? That is a very good question, Anna. Why does he need to be on those drugs? Because, you know, you more than anyone else know that autism is autism and you can't cure it. So why do they need those kind of drugs? So we don't really have an answer for that because the doctors won't give it to us. So why is he so far away from home? Why is it that you've got to travel all this way to Clacton on sea to go and visit your son? Because it's the only available in London. There is no assessment treatment units. There are a few. In fact, there is one by where I live that does autism, but it's an NHS one and for some strange reason they sent him to a private one. I mean, that makes no sense whatsoever. And they're only about 10 minutes walk from our house. It would make more sense for your son to be closer to you. Absolutely. So what is it like for you to go and visit your son in a place like an assessment treatment unit? Do you think it's helped him? No. In fact, Stephen deteriorated being in those institutions. This is the second one. The first one was St Andrews in Northampton. It was there for two years. Northampton, okay. Miles away. Miles away. But you know what, it's closer to in many ways is actually closer to me than it is to go to Clacton due to the fact that it's one way straight to get to Northampton to go To Clacton is a nightmare. It can take me three hours to get there. It can be a six hour round trip. So you must feel very let down by the system. I do indeed. I feel very much let down. But you know, it's not so much the fact that he's so far away. If he was 200 miles away and he was being treated fairly and he was happy, he was not underdosed drugs, he was not under lockdown because essentially he's a prisoner. It's a mid secure unit. Say if he was, I would sacrifice just 200 miles to go if I see that my son was happy. Did I hear that he broke his clavicle in an incident with a carer last summer and now every time you go and see him, he begs you to come home. Yes, and absolutely breaks my heart. That's not the only incident that has happened. He has nearly died since the incident at the school. In the two hospitals he's been in, he has nearly died. The first one he came out from Santa, he needed a wheelchair. He no longer could walk due to those antipsychotic meds where he is at now. He has had numerous incidents with head banging this thing. I know that they, that perhaps you cannot stop him head banging, but when you are being paid for 2 to 1 to look after him 24 7, how is it possible that those amazing and horrible incidents happen? Yeah, he's probably so frustrated. He just wants to get home and be out of this place. And this is why he visited quite a few. And it's just like he begs me when I visit. I go and I'm so happy to see my son. And he's incredible. He and I are very close, like you and Angelo. And he says he won't let go of me. He holds on for dear life, you know, to me. And then he begs, mommy still go home, Mommy London. And there are moments that he actually grabs hold of my legs and me try people trying to grab him and me trying to walk off and he's holding onto my legs not to let me go. That must be so stressful and angst. I just can't even imagine it. It's absolutely heartbreaking, you know, when I. And he cries and he screams and then that frustration because he knows I'm going and he's staying. Yeah, he comes to me and he, he headbutts me because it's his way of saying get me out of here. Yes. What about his brother and sister? Well, and that's another thing. These places are so Detrimental for the whole family. Yeah. It destroys families, lives. Not just him, but the whole family as a whole. Josh is not allowed to visit. That's just awful. So because it's an institute, it's a mental institution, essentially. It is an institution. It's not a hospital like they like to call them. It's an institution. It's a mental institution. And children under 16 are not allowed. So when I do take Josh, he's. I bring Stephen out to the gates, which is a. I've seen photographs where. You've seen that. Yeah. Yes. And where Stephen goes and they touch each other through the gate. But he probably sees him once a year. But recently there was an incident that I took Josh because I had no choice. I had to take him. I had nowhere else to leave him. This is another thing. How do I arrange to go and see Stephen? Because Josh has his own anxieties, difficulties. Yeah. And he's only. How old did you say he was? 12. He's 11. 11. And he won't stay with anybody else. So even if I arrange for somebody to look after him, he won't stay. So there has been occasions when I had to cancel the visit because he'd refused to stay with somebody. So how long has your son been in the unit? So Stephen has been on a unit on this one for three and a half years, ending the two previous two years previously on the Other One. So you received some good news that he's going to be coming out? Yes. Although you had a date and now it's been changed? Yes, for the last two years it's been changed. So two years you've been thinking, right, he's coming home and then it's changed? Yes. Yes. So how does that feel? It's absolutely heartbreaking. The first year was due to the hospital refusing to let him go. Okay. Even though we had discharged it through a tribunal and the hospital decided not to discharge because the rc. RC means Responsible condition. Ultimately, he's in charge of my son. I have no rights to Stephen. This is another thing to people on the atus. Parents don't have rights. So this person who knows nothing about my son has a right, just about my son, to keep him away from you? Yes. And to decide what's best for him and not me. So will he actually come home or will he be transferred to a closer? No, he will not. My home. He won't come to my home. He is coming out under section 117, which. Exactly what it means. Section 117 means that it's paid all Costs of care included, but close to your home so you can go and visit him and so can your. So he will have his own house. It's a house, coincidentally, he's going to be near you in Knoxbridge, in Hillinden actually, very close to the school. And a house was bought, acquired for him. It's been remodeled to fit his needs, sensory needs, needs. But this is where the problem lies. He was being discharged in fact yesterday. Yeah. I remember you saying that you couldn't be sure if you're going to be able to come. And then three weeks ago we were told that that was no longer going to be possible because the house failed inspection. Okay. And so now again we have no idea when. So you haven't got a date? No, because the house is not ready. Okay. And it's been, you know, every other month adding to the time that he is left in locked up. And what's breaking my heart is since he doesn't have the full understanding of what's happening next, however he's been told that he's coming home, you know, and so every Monday because they were told he was told he was going to come home on a Monday. So now every Monday he thinks it's Monday and he's been having horrible self harming injuries because he thinks he's coming Monday and he's not coming on Monday and he didn't come on Monday yesterday, which was yesterday. And I was absolutely heartbroken. I can't even imagine how you're feeling. We're short of time now. So I think what I'd like to is that when you do know he's coming back, maybe I could bring you back and you can talk to us about him coming home. Absolutely. And going to his new place. So Leo, if a parent's going through a really tough time as yourself, what advice would you give to a parent? If you are out there and somebody's telling you your child may go into an agu, there are ways you can stop it. Contact a solicitor for mental health and autism as well as contact your nearest 10 hs England for support and also stump and if you Google stomp that, you'll get the information. Okay, thank you very much Leo for that invaluable information. And it's Women's radio station. Anna Kennedy talking all things autism. Welcome to women's radio station, the voice of women worldwide. Hungry an average woman eats about 2 to 3 kilos of lipstick in her lifetime. Women's radio station, we want to hear from you. This is Women's Radio Radio station. You're listening to Avril Price with Kitchen Sink Spirituality. It's Anna Kennedy talking all things autism and my guest today is Karen Nunn. I listen to women's radio station Women. The possibilities are endless. That's what makes us different. Do you dream of a wedding on the beach? Or maybe in the middle of a vineyards? Imagine your wedding in Italy, the land of Leonardo da Vinci and Michelangelo. 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WRS Women's radio station Voice of Women Worldwide hi, I'm Valentina Barbacci and I'm the Executive Director of Media Matters for Women. We're a registered charity operating in Sierra Leone and the Democratic Republic of Congo and we produce and share podcasts via Bluetooth on mobile phones, focusing specifically on women and girls excluded from information due to extreme poverty. We empower those living in rural areas with media that transforms how they access, own and share information. To find out more and be part of this movement, come check out our website@media mattersforwomen.org Mirae B Ltd. We are a virtual PA consultancy. We provide remote administrative services. Our offering is diverse. We manage your calendar, we update your client database, we take care of your property in France and in London. We also offer bookkeeping and translation services. Would you like to know more? Please call 077-8684-8998 for further information. Mirayb Ltd. Making the life of the business owner successful. I'm Isabelle Manevy, an executive coach. Do you want to change a negative into a positive? We can do this by coaching you to rewire your brain using simple visualization techniques in 20 years of practice, I seen this transform lives. For more information, look on Women's Radio website. Call me on 079-844-22171. I'm listening. Do you need mediation? We are the a project charity. We provide convict resolution and community engagement services. Our services include community mediation for neighbour disputes, family mediation for separating couples, special education needs for parents, carers and their children, and young adults, as well as workplace mediation and restorative services. To find out more, head to womensradiostation.com or theaproject.com. I'm Angie. And I'm Patsy and we're open as a trans woman living in the centre of London in 2018. The show's about all the barriers I face on a daily level. 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