Hello, this is Anna Kennedy, I'm at Women's Radio Station, voice of Women Worldwide and we're live and we're talking all things autism. My guest today is Steph Curtis, but before we go over to Steph, I just want to give you a few little tip bits of ado. So Autumn's got talent. We have announced our performers. Oh my God, everybody's so excited. I've had lots of messages from parents saying, and one particular parent that their son went to bed with a big smile on his face after it was announced. So I'm just going to read out all of our performers that are going to be performing on Autism Scott Talent on May the 4th at the Mermaid Theatre. So it's Andre Adams, Holly Pandit, Callum Courtney, Patrick Steele Bodger, Autism with Attitude, Shea Ellis, Tess Wolfie, Benzie, OJ Bridges, Ollie Benning, Molly Alexander, Tom Loveless and Emily Leves, Daniel Docherty, Cal Ruddy, Chris Hansen, Madison Campbell, Cez Thomasin, Jennifer Rose, and we're going to have our Pineapple Performing Arts scholars that have got scholarships through the charity, all eight of them performing on the day and supported by Pineapple Performing Arts. It's going to be a fantastic show. We've got acts from all over the country and traveling in from India, from Ireland and it's just going to be an amazing show. We're so excited. I can't believe it's going to be three months yesterday. So three months yesterday will be the show. Another piece of news is that our anti-bullying video give us a break that came out in November that was created by Patrick Steele Bodger, actually won the AVA Digital Award, a platinum award, which is really exciting for Patrick. So Patrick is a talented illustrator on the autistic spectrum with a passion for cartoon and film. And over the recent years, he's been able to extend his illustrative skills in the workplace with video to web illustrating for companies like Overclean, Chips Away, The Marius School, Sunningdale, ATS Global and Siemens. So well done, Patrick. Thank you very much indeed. So hello there, Steph. Hi. You've come all the way from St Albans. Yes, not too far. Okay. So thank you. We're going to be talking about PDA. We're going to be talking about your family. But before we go over to that, I'm just going to read a little bit about you. So Steph Curtis, mum of two girls, now age 13 and 11, youngest girl, Sasha, was diagnosed with autism at the age of two. Steph has been writing her blog called Steph Two Girls for nine years now. She's been actively involved in several parent groups in her country, worked for a year at a local charity for autism and ADHD, and was a board member on the PCS for three years. Steph used to be a buyer of toys and stationary, but now works as a trainer, worked on the early support program for parents of newly diagnosed children a few years ago, but now focuses on training about pathological demand avoidance on behalf of the PDA society. So PDA is quite a hot topic at the minute, seeing so many articles flying around. Is it on the autism spectrum? Is it not on the autism spectrum? So tell me Steph. Who is Steph before we go into all of this? Oh gosh. A long time ago before children, I studied business in German. Oh, okay. I do actually speak a bit of German. Wow. Well, that was a long time ago. And yeah, I, like I said, training, I've done that, I've kind of moved on since having a child and did a bit of research and then training. Okay. Yeah. So you're enjoying what you're doing? I love what I'm doing now. Yeah, actually. Okay. So let's talk about your daughter. So when was your daughter diagnosed and how was she diagnosed? Okay. So it was when Sasha was coming, so our youngest, coming up to about the age of two. And we noticed she had a lot of sounds, but not actually any words. Okay. So she was doing babbling, but we kind of, we knew our older daughter had spoken, you know, probably from about 18 months. So we just thought there was something about her speech, maybe it wasn't quite right. So we took her along to, we actually self-referred for speech therapy. Yeah. And it was the speech therapist who then said to us that she would refer us onto a pediatrician. Okay. But just as routines, we weren't really too concerned about anything else, just the speech at that point. And they also sent us for audiology, hearing tests, which we've since found out was quite common for parents of autistic children, which kind of appears that they're not listening to you or they can't hear when they're not listening to you. So yeah, we went through all of those and then we saw the pediatrician and again talked in thinking it would be routine, but it was kind of that, that appointment was the first time I saw, there's something else here, it's not just the speech. So Sasha was really trying to avoid any of the little tests that the pediatrician would give her to do. So things like putting things in colour, sorting or building towers, anything like that. And Sasha was just not really engaging with a pediatrician. So it kind of became obvious at that point. And yeah, that the pediatrician looked and mentioned the word autism to me. And I didn't know anything about it then, but she sent us away for a month to think about it. And we went back a month later and then yeah, she gave us that diagnosis. So how did you feel afterwards? Kind of shocked. Well, not shocked really, but just surprised, but relieved and then it kind of all seemed to make sense. So, you know, some of her behaviours when she was younger, kind of I felt that, oh, it wasn't just me struggling with having a second child and a toddler. And because she'd been so different really to our eldest, she was very much more determined about things she didn't want to do. I'd go along to toddler groups and she wouldn't listen to whoever was in charge. She'd be running up and down and just, you know, there was no way of kind of stopping her. She didn't want to be there. She didn't want to be somewhere. She'd let you know about it. Even walking to the nursery, she'd kind of, if you took a different way from usual, she'd really scream in the push chair and go mad. So it was all kind of about extreme behaviour. So it was only when somebody pointed out to me, I looked back and I thought, oh, actually, that does make sense. Yeah, talking about the hearing, both my boys had gluia. Yeah, so they said that, but only mildly really for Sasha. OK, I have spoken to so many different parents where they thought they were deaf as well. And then there was one parent that the paediatrician said, oh, your daughter's deaf. And then he went to scrumple a piece of paper and threw it in the bin and then the daughter turned round straight away and thought, well, she isn't deaf. So you've got two daughters. So are they both on the spectrum? No, our eldest isn't now. OK, how old is your eldest? She's 13. And how do they get on together? They're really good, actually. So the eldest says, obviously, they're nothing but Sasha. So she's very good at helping her out using strategies. They, you know, come together and play well at times. But our eldest has had to make a lot of concessions, really, for Sasha. Yeah, I speak to a lot of parents where they find that the sibling finds it quite difficult. Sometimes they feel a little bit left out. Yeah, definitely. The reason is it's not that you're doing it intentionally. It's just because they need a lot more support. I always remember Patrick saying to me that I used to take them swimming and I can't swim. I'm like, I'm not very good at swimming. So I used to go to the baby pool, you know, like where it's a lot more shallow. And then Patrick picked it up quite quickly, but only when they gave him goggles and couldn't cope with it when he didn't have the goggles. But Angelo was like, he's still very seems almost afraid of water. So it took us a while to get him in to the pool. So I held his hands. And I always remember Patrick saying to me, you held Angelo's hand, but you didn't hold mine. I said a little thing. It's because you can swim. Angelo can't type of thing, but all these sort of little things. Yeah, I forgot. Yeah. But soon as then, Patrick got the goggles. He's just like swimming away like a fish. Yeah, such as a real water baby. Actually, she loves swimming. OK, so you're saying your daughter was diagnosed with autism and we're going to be talking about pathological gland avoidance. So when did that materialise? So it was about maybe a year or so later. And what happened when we got the diagnosis, I was sent away with just a leaflet as it happens often. Usual. And but I managed to meet up with a group of mums who all had daughters on the spectrum. Oh, OK. That's quite unusual. Yeah, but it was good for the girls to get them. But not unusual, you know what I mean? But it's just not that many groups. Yes. And so it was good to get a group. And the girls, I think because people at that time said, you know, often girls present differently to boys because we know now, you know, that's not always the case. But but it was good to have a group of mums with girls. But it kind of highlighted to me as I was talking to them that my daughter didn't sound the same as all of theirs. But theirs mostly had Asperger's. But Sasha, there was just things that Sasha were doing that were different. So that was then I kind of probably started googling a bit more. And then I came across the words, pathological demand avoidance. And it was as like many parents say, it was like a light bulb moment. We just it just made sense what that was. OK, so you've started writing a blog. And I believe you've been doing it for about nine years. Nine years now. Yeah. OK, so what made you start the blog and what consists in your blog? And what was it like when you wrote the first post of your blog, like the feedback and the type of thing? OK, so the blog is, I'll say, www.stephtogills.co.uk. And I started actually on the day we got that diagnosis. So I came home from the pediatrician. I think the first post is titled Today, a Diagnosis of Autism. So it was kind of a surprise. I don't really know where that came from, but never long to write before that. But I just kind of instinctively knew I wanted to get some thoughts down. OK. And also because Sasha was a toddler, so she was just two and a half. And a lot of her behaviors, you know, you could put down the general toddler behavior. But, you know, I could see the extremes and I could see on a daily basis. And we've got grandparents who both sets of grandparents live far away. But also at that time, because I wasn't able to get out to the toddler group because it really wasn't working with Sasha. You know, what kind of friends weren't seeing her as much either. And I just kind of wanted to try and explain to people why this was not just toddler behavior. So it came from that wanting to educate, you know, help others understand what I could see. So did you find it therapeutic? Because I've spoke to so many people that when they're writing their blogs or posts or whatever it is that they're writing, they find it quite somewhat like counseling. Yeah, I say it's free therapy. It's been here nine years of it and it's quite good. And it's taken different different directions in that time. But it's worked really well for me, I would say. So how do you choose your topics for sort of each week? No, so I do post probably about one a week. But it really depends what's going on. It could be something topical. And at times I've kind of moved away from the autism and done more toy reviews and event reviews and things like that. That's just funny. They're helpful, too. So, yeah, it's it's been like that. OK, thank you. I just wanted to let everybody know, as I do every week, the AKO Expo, the Autumn Expos at Brunel University. It's on March the 23rd. We've actually got a speaker that's going to be talking about PDA. So if you're interested, the information is on the charity website or you can go to the expo website, which is www.akoautismexpo.co.uk. We have speakers. We've got a fantastic art exhibition and photography. We have exhibitors and a lot of the exhibitors are families that have set up their own businesses because sometimes looking after a child on the autism spectrum, you might have to give up your full time job. So you're looking for another way to bring in money into the house. So we've got a lady that's got sensory wise that set up her own selling resources. It could be books. So there's about 25 different stands. So you can see all the information that's building on the charity website. We have clinics as well where you can get free advice. So whether it be legal, whether it be advice on occupational therapy, or we have a young lady there who's got Asperger's syndrome who's going to be talking to parents if they want to have a chat. So there's lots of information. Have a cup of coffee. Sit down. Just chat to other people. Have a little bit of time out. So we're at women's radio station, Voice of Women Worldwide. We're talking all things autism today. And my guest is Steph Curtis. And we're talking p-d-a-w-w-w dot anna kennedy online dot com. If you'd like to send us a message or even ring the office. 0185 540 187. Welcome to women's radio station. The voice of women worldwide. This is women's radio station. You're listening to actual prize with kitchen sink spirituality. It's Anna Kennedy talking all things autism. And my guest today is Karen Nye. Welcome to future classical women awards. We are women's radio station. I listen to women's radio station. Women's radio station. We want to hear from you. Women. The possibilities are endless. That's what makes us different. Hi, my name is Katie Young Gerald and I'm the founder of Bespoke Textiles and author of the selling book Textile Touch. 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To find out more and be part of this movement, come check out our website at media mattersforwomen.org. Women's radio station is a not-for-profit community interest company 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, I'm Zina Mascone, head of business development at women's radio station. Radio advertising is the most cost effective way of reaching a huge audience globally. Moreover, our sponsorship and advertising packages can be tailored to your needs, whether it be a product or brand service you're looking to promote. If you are interested in sponsoring or advertising, please contact me on 07 956 371 483 or alternatively ZM at womensradiostation.com. Hello, this is Zana Kennedy talking all things autism at women's radio station, voice of women worldwide, and we're live. So this week is children's mental health week and the topic is healthy inside out. Place to be launched the very first ever children's mental health week in 2015 to shine a spotlight on the importance of children and young people's mental health. So it's now in its fifth year and what they do is to encourage more people than ever to get involved and spread the word. So they're taking steps to be healthy inside out. So when we think about healthy living, we tend to focus on looking after our bodies, our physical wellbeing through food, being active and getting enough sleep. However, in order to be healthy overall, it's important that we look after our minds, our mental wellbeing, our bodies and minds are actually very closely linked. So things that we could do to improve our physical wellbeing can help our mental wellbeing as well. When we take steps to be healthy inside out, it helps us to feel better in ourselves, focus on what we want to do and deal with difficult times. I also wanted to share with you some exciting news. That one of our Autumn's Got Talent performers that performed at the Roadshow in Liverpool and also is going to be performing on Autumn's Got Talent at the Mermaid Theatre has been given a scholarship. So basically what happened was I made contact with Chris Maloney. He was going to be one of our presenters at the Autumn's Got Talent Roadshow in the Wirral, but he couldn't make it last minute due to personal circumstances. So we were chatting and he talked to me about his academy in Liverpool. And I said, is there any possibility that you could give me a free scholarship for one of our young people, our performers? And we're delighted to say that he's offering a free scholarship to Andre, who's a saxophonist at the Liverpool Academy. And he's looking forward to nurturing his talent. Tracy, the mom is like over the moon and said that she's so excited by her son, happy to be starting the scholarship. Actually this week on Saturday at the Chris Maloney Academy this month. And they would like to thank Chris for giving him the opportunity. He wants to be able to sing and dance and perform. So this is going to be a fantastic opportunity for him. They were invited to the show that they did a couple of weeks ago at the Epstein Theatre and they were given front row seats and they just totally enjoyed the show. And they said the talent was just amazing. So I'm really excited to see how Andre is going to be getting on in the academy. We've also got eight performers that are at Pineapple Performing Arts. Some of them have been there a year. Some of them have been there two years. Some of them have been there three years and they're doing so well. And they are going to be performing on Autism's Got Talent to show how they're improving every year. So what I try to do is create as many opportunities as I can within the performing art world. And just talking about performing arts, Autism's Got Talent. Sorry, Autism with Attitude actually won another event over the weekend. Woohoo! So so so so proud of them. So Steph, back to you. Thank you very much. So now we're going to be talking about what is pathological demand avoidance. I love these titles that they give these diagnosis and syndrome. So what is it? Can you explain it in a way that says somebody's never heard of it? So what is it? Okay, I'll try. In a nutshell, it's a profile of autism. So a type of autism and people with PGA usually have very high anxiety levels. There's a good bit of information actually over on the National Autistic Society website. And they say those who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This demand avoidant behavior is rooted in an anxiety-based need to be in control. Okay. And then there's certain features that people with PGA would show. And that is that they resist and avoid the ordinary demands of life. They use social strategies as part of their avoidance. So for example, they distract or give excuses rather than just not do something. They appear sociable, but they lack kind of understanding and the give and take in social relationships. They experience excessive mood swings and impulsivity. Parents often say that the children are like Jekyll and Hyde. They just kind of flip the switch from 1 to 100 instantly. They often appear comfortable in role play and pretense. And then they display obsessive behavior. But rather than with autism, the whole obsessions are quite common. But with PGA, it can be more about people rather than things. So yeah, that kind of sums up the main features. So what makes it different from if you have a teenager or a daughter or a son that basically they just don't want to do something? Just want to do something, yeah. So what makes it different? What is it? Yeah, so I mean, everybody really could have demand avoidance. Like you said, you know, lazy teenagers or whoever. But it's the fact that it's there throughout everything they do. And also that they would, you know, they avoid things that they actually want to do as well as those they just don't like doing or are too lazy to do. So for example, our daughter Sasha loves swimming. But there'd be times when she was younger that we couldn't get her out of the house to go swimming, even though it was completely open that she could go when she wanted. It might have been her idea to go in the first place, but actually physically going out of the house, because that was a demand that was being put on her to leave the house, was just too difficult. So it's like cutting off your nose to spite your face. You want to be somewhere and do something, but you can't make yourself do it. And it could be for a variety of reasons. So, you know, there could be sensory issues, play into part of that. But sometimes at some point, we say that those with PDA have a very full worry bucket to start with. So the anxiety levels are very high. And when you power on more demands, then that just spills over and it creates a situation where they can't do. So children are said that they can't help won't. They can't help the fact that they won't do something. There's usually other reasons behind it. Okay, so you first said that your daughter was diagnosed with autism. So when did it manifest itself as PDA? So I would say with her, it's been from the start. We're looking back. It's just that we didn't know about it. It's still not very well heard of PDA and liken that to Asperger's was, I think was discovered around about the 40s. And it was only really in the 80s that people started talking about it. And so PDA was discovered in the 80s. So now we're in the getting to 2020. It's about that same time scale. So really it's becoming more heard of, but it's not been. So we didn't know about it from the start, but looking back, I can see clearly all her actions were there. So can you talk to me a typical day of your daughter? Say at the weekend when she gets up in the morning. So how does it manifest itself in your house when you go out and when she's going to school? So talk to me just so listeners can get a little bit of a flavor. A typical day. And it really depends on age as well. So we've been through different ages and stages and right now she's 11. It is very difficult to get her to leave the house for anything. So there's very few activities that she will do. But at the moment, she is going to school. So I think that takes up a lot of her time, stress, her anxiety levels are high because of all those demands that have been placed on her. So literally at home, we reduce all the demands and keep it very calm. So does that build up like over the weekend to see if she's starting on a Monday? That as well, but no, just every day during the week. So literally, it's so difficult for her to do anything else because she's recovering from all those demands that have been placed on her every day at school. So yeah, we keep it up because we're nine years into diagnosis. We've got used to the strategies that we use all the time and we don't make her do things that she doesn't feel she can do. And we're very aware. It's a real tricky balancing act of how much we ask her to do and when. Okay, does she get support at school? So she's moved from a mainstream school into a special school now. So she did have support at the mainstream then. Okay, so did she talk about her day? Because I always remember Patrick, I used to say to him, oh, how was school today? What did you do at school today? You just get like a shrug of the shoulders like, yeah. No, and so, you know, lots of children again can be like that. But Sasha really needs to unwind and de-stress. She comes in from school. She does have her routine, you know, she comes in, has sandwiches, afternoon snack, and then we'll sit and de-stress with the iPad. And we don't get much conversation about anything really from Sasha. She's capable of it, but really, you know, holds it all in. And the only time generally she'll talk to us is at bedtime when things kind of a little bit will come out. But it's not the kind of conversations that I would have with my other daughter, for example. It's always very, you know, very short. And she can get irate, very upset about anything very easily. Yeah, I've spoken to a few families where they said, as soon as their daughter or son comes back home, the things that they might do is just go straight to the room, shut the door because they need to, you know. Need that space and time away from you. I've had a couple of parents who've said to me that their children go to sleep for an hour because it's just been so much to deal with the sense we overload everything. Yeah, they just go to sleep and then they'd wake up and then, you know, they're able to deal with maybe having their tea or doing whatever it is that they do. So how was that impacted on your other daughter? Yeah, so it's, you know, our family at home, we do things that would seem strange, probably, to other families. So Sasha doesn't come to the table to eat food. She always eats where she is. And because that would be a demand and it's just adding to it. Everyone's got their own little food. So things like that, you know, you expect. So lots of people have this ideal of what family life will be and what kind of rules you expect because, you know, typical parenting says that the parents are in control and telling the children what to do. And it's not really like that at our house. So our eldest knows that if we wanted her to come to the table, you know, we would tell her to, we can do that. And she will do it very easily. But she understands that her sister struggles with those things. So, okay, what about bedtime routines? Yeah, bedtime is tricky in our house. Luckily, Sasha sleeps mostly through the night, but it's later and later when she's going to bed. And she needs me. She can't get to sleep without me being in the room. Okay. And there's certain things she needs. So, yeah. So is there any strategies that you can, like, some tips or is there somewhere they can look to find tips? Um, yeah, so I've done a blog post about strategies. Okay, that's great. So can you remind us of the blog? So the blog is www.stet2girls.co.uk. Okay, so we're going to talk a little bit about, in the next half, about what the PDA Society do. And I met quite a few parents last year, on May the 15th, I think it was, when they were doing, there was lots of things going on in central London, outside Parliament. And then we went to the Department of Health to deliver, I think it was something like 500 signatures from families that were frustrated, that felt that, you know, they weren't getting any support. So, yeah, so that's something else that we're going to be talking about. So if people want to check out the PDA Society, where would they look? What's on their website? Yes, so the PDA Society website is www.pdasociety.org.uk. Okay, so and if people would like to message you on your blog and ask questions, or they might think their daughter or son has got a diagnosis of PDA, could they do that? Yeah, I get a lot of messages like that, neither through the blog at all. So I have a Facebook page, and I'm on Twitter and Instagram. And it's generally, you can find me by doing at stet2girls. Okay, so that's easy. And you talk about sort of things that happen with you, and then any information, any research, is there anything like that that people can, if they want to check? Research is still ongoing, but there's an awful lot on the PDA Society website. Okay, so that's useful information. So Women's Radio Station Live, we're a voice of women worldwide, and we're talking all things autism. Just to remind you, our charity website is www.annaKennedyonline.com. Telephone number if you'd like to give us a call, if you just want to chat, or if you want to ask us some information, it's 01895-540-187. Again, I'm on social media at Anna Kennedy, or the E, Anna Kennedy, and Anna Kennedy Online Facebook page, and Women's Radio Station is www.womensradiostation.com. Women's Radio Station is a fresh, new broadcasting platform driven by love and passion. Connecting women around the world in a global network is all about diversity. From the opinions, career, ethnicity, education, we aim to show the individuality of every woman everywhere, providing opportunities and a platform for your voice. Women, the possibilities are endless. That's what makes us different. 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If you are interested in sponsoring or advertising, please contact me on 07 956 371 483 or alternatively zm at womensradiostation.com. Hello, this is Anna Kennedy and we're at Women's Radio Station Live and it's Voice of Women Worldwide and we're talking PDA today and my guest is Steph Curtis. Before we go over to Steph, as I said on the previous episode 15th of May 2018, we participated in a peaceful protest in Westminster and here was a part of my speech in Parliament Square on pathological demand avoidance. So my first encounter of PDA was listening and meeting Elizabeth Newsom in Birmingham. Many years ago, God, that just seems such a long time ago now, and I was also learning about semantic pragmatic language disorder within the same conference. I'd recently spoke to a mum on social media and she was blaming herself, feeling that she'd done something wrong because of the difficulties she was having with her son at school and his behaviour at home. I get that a lot where parents tend to behave, you know, blame themselves but there's nobody to blame. They're just doing the best that they possibly can and she is one of many parents they're spoken to and felt this way. In my opinion, it's about awareness and again early intervention. It's crucial to support the child, the school and the family. If you don't know about PDA as you can, as a parent start to blame yourself. The more people that are aware of PDA, the more they can make informed judgments. Training and consistency in PDA is key. A diagnosis again in my opinion is important and serves a number of purposes. It informs our teaching, it helps the parents understand the nature of the difficulties that they are desperate to help. Remember, are seeking to learn more about it and how to do it and it can help secure support in the form of an EHCP, which is an educational and healthcare plan for parents who have got newly diagnosed children and funding if needed. Without it, we as a community are vulnerable and ill-informed. I remember vividly across social media response from teachers when a documentary on pathological demand avoidance went out on Channel 4. Born naughty, it was quite a while back and in episode one, a child had been permanently excluded from school after threatening to kill other pupils and a six-year-old who exhibited challenging behaviour at the slightest thing. I watched a backlash of comment after comment blaming permissive teachers, poor parenting and naughty children who just didn't want to be told no. Again, without the understanding of a child's needs informing how teachers and parents work with children and how we can best support their needs, there is always the possibility that a certain proportion of children will be written off sadly in this way. As a charity, I believe it would be wrong to say that no progress has been made in recognising and supporting PDA. We think there is a lot more that needs to be done. Speaking to my husband, Sean, who offers legal advice for families, he shares, while it would be wrong to say that no progress has been made in recognising and supporting PDA, we think that there's a lot more that must be done. To illustrate this, let me share with you some of the problems he's encountered when supporting families starting with obtaining a diagnosis. Many of the people here will understand the problems adults and child have accessing diagnostic services. But as far as PDA is concerned, these difficulties are compounded because both of lack of awareness and regrettably possibly a reluctance to provide a PDA diagnosis in favour of, for example, ODD, which is Oppositional Defined Disorder, a disorder which doesn't seem to acknowledge the behavioural impact of anxiety and impaired social communication. Without the correct diagnosis, the people we support will often not be given the correct provision. This means that their needs are not only met and this directly affects their life chances in schools. And post-16 provision, children and young people denied the correct support can often be labelled as difficult, challenging, or even violent, regularly resulting in them being excluded. But that's not the end of it. We have been seen many such children with PDA who have also come to the attention of social services and the correct support has not been provided. In the worst cases, this results levels of intrusion and can be wholly destructive and they can lead to the breakup of the family. Having failed through no fault of their own in education, many adults are either left unsupported or with inadequate support from social care. Whilst mental health services may try to understand an adult or our experiences that they can be even more reluctant to diagnose and support PDA in adulthood. Hence, the cycle of imposed failure can continue. One of the consequences of that is that adults with PDA will often be unsuccessful in finding an employment. This is why we very much support this initiative increasing awareness and PDA is a necessity and not an option. Service providers cannot allow themselves the luxury of being unsure how to support PDA and what we're saying is the clock is ticking and has been for years but the time to act is now. So Steph, tell me, the PDA Society, if you were to contact them, what sort of support can they give to you? Okay, so the PDA Society is a group of volunteers who are all parents of children or young adults with pathological demand avoidance. So they all have that lived experience. They understand all those things you've just mentioned in that great speech about being judged as difficult as bad parents. So they get it. They offer an online contact place. So by email, they will offer advice and support to parents and they have their great websites I've mentioned before and say it's www.pdasociety.org.uk where there's a huge wealth of information and resources about PDA. They've got some great leaflets there as well. Leaflets which can be ordered and articles which can be passed on to educational staff because I think it is important that we get the word out there. There's still many people who don't know. There's those who don't understand but there's so much that can help whoever's working with the children and they run training courses for parents and carers but also for educational establishments and other professionals. So yeah, there's a lot that the PDA Society are doing. So would they go to schools and give talks? They can do yes. If schools contact them, yeah, we go out and try and speak to whoever really needs that information. Okay, so what's your role at the moment within the PDA? Is that just like going out and giving training? Yes, so I've often said recently I've done some training for a group of foster carers and councils around the country. We're trying to organize you know for anybody who wants who needs that information. Since meeting so many different mothers in this country and overseas I've chatted to so many and we almost take it on like as a mission don't we? Once our children have been diagnosed and then because the information is so limited out there and resources are limited and after school and all these sort of things we take it as hard as it is to be a mum, a wife, go to work all the things that we do we juggle. We just sort of take it on as a mission don't we? To try and educate others because we don't want people to go through the same sort of things. It comes from me from trying to make Sasha's path through life smoother because if people can understand this they don't see it as the wrong thing and they don't treat her in the wrong way. So it is kind of comes from a selfish place but I think it also helps so many more you know when we got the autism diagnosis I didn't really know anything about it. I didn't know anybody who was autistic but then once you get the diagnosis it's kind of like the pop up out of the woodwork across the road from you around the corner and you could speak to a lot more people that way but I think if it's out there more publicly then it helps so many more people. Just before we came we were having a coffee and we were chatting about holidays and it's just like that it's like it just doesn't really happen so you were saying that you hadn't been on holiday as a family for quite some time. We have been on holiday but they're so stressful and it's not the kind of holidays we would want to do there's a lot of planning involved and yeah so it's the sort of favourite places that your daughter likes to go to. Yeah so Sasha loves centre parks. I've never been there actually a lot of people so it's quite nice. Yeah because I think that you know their routine and the familiarity knowing what she's getting but also because she loves swimming and their swimming paradise is wonderful so. Okay and does she have any hobbies? Sasha just recently started this year's taking up roller skating. Oh wow. It is like I said it's very difficult to get her out of the house for anything even when she really wants to do it but it's been going well with this one this year. She struggles with the noise and the people there being too busy but she's kind of pushing through that at the moment so fingers crossed that's good I hope she does well. Maybe she can go and Autumn's got talent we got our first roller skater. That would be good. What about friendships so she's got a friend. Yeah so that that is really tricky for Sasha because a lot of people with PDO have said about the obsession but also the need to control because they want to remain in control themselves. So they tend to try and control other people. So Sasha for example really struggles you know did struggle on the playground because others wouldn't play the game as she wants it playing so she has very fixed rules in her head as well and she can't bend from those. So she doesn't and she doesn't have that ability to kind of quickly adapt to what other people are doing so it's kind of all a big challenge for her and things like board games at home we don't play because she if she doesn't win she gets extremely upset. It's not really worth starting them in the first place and she's not learning that it's just it's in her that she can't get past that. She knows she shouldn't want to win or have to win every time but she can't deal with that. Can you use what kind of future can you see for your daughter? Do you think about the future? I always think about the future for my son. Yeah it's got one of those things trying not to think about it too much but I mean she's found she's got five kind of job ideas that she has. I don't know if I can remember them all now but teacher is one of them which is quite good you know because that's telling other people what to do if you were an author. She has written a few books. Actually interesting yeah What kind of book? Oh we're just creative ones. Okay that's good. We'll hopefully get around to publishing though so yeah I've looked forward to it. She has great imagination and what else? So a cat cattery kind of person looking after cats. Yeah this is the closest animal I've heard to people who are autistic is the cat so I've heard that before so yeah. So is PDA the same as ODD which is oppositional divine disorder? No it's not. Yeah so and the base in a nutshell PDA is a profile of autism. ODD isn't so you can have ODD and not be autistic but if you have PDA you are autistic. Okay all right it's quite complicated all these different diagnosis isn't it? It's just like it's a bit of a minefield isn't it? There's so many acronyms as well you've got to learn as a parent it's like almost you've got to learn a different language when your child's been diagnosed on the autism spectrum. Yes so we're at Women's Radio Station and we're live and it's Voice of Women Worldwide and we're talking all things autism. Again just to remind you of the Autism Expo which is on March the 23rd 2019 at Brunel University lots of free car parking only £10 for the whole day so if you'd like to come along or if you'd like to listen to one of our speakers or just have a little browse around all the stands or have a cup of coffee or speak to someone on our clinic that you might like to have some advice my husband Sean's clinic is always very very busy he has such a long queue of people trying to get legal advice on for their child or for their adult. Sean yeah he has a very very busy day and then he I always remember when it's at the end of it he goes home goes to sleep for about an hour because it can be quite draining you know speaking and trying to help people so yes so again if you're interested Steph's blog remind me of that is www.steps2girls.co.uk okay and I've seen a picture of your lovely girls on social media very pretty I'm sure going to be a few heartbreakers when they grow so the PDA society remind us again is www.pdasociety.org.uk and they're at PDA society on Facebook and they're all on social media and as we are so if you'd like to contact us you want to ask something or you just want to vent sometimes I get people who just ring me up and they just want to have a little vent a little rant and then they feel so much better because no one listens to them so we're at women's radio station voice of women worldwide welcome to women's radio station the voice of women worldwide this is women's radio station you're listening to Agro prize with kitchen sink spirituality it's Anna Kennedy talking all things autism and my guest today is Karen Nye welcome to future classical woman awards with me Stephanie Passamante on women's radio station I listen to women's radio station women's radio station we want to hear from you women the possibilities are endless that's what makes us different hi my name is Katie Young Gerald and I'm the founder of bespoke textiles and author of the selling book textile touch I've been working in luxury fashion and textiles for over 25 years and I help brands design luxury bespoke uniforms to high-end limited edition collections we've been doing this for clients such as the ivy collection to royal households and we do it inside of a sustainable supply chain that saves waste you can find us on bespoketextiles.co.uk hi my name is Julia Sturlan I'm a figurative painter in oil and watercolour please visit my website juliesturland.com j-u-l-i-a-s-t-e-r-l-a-n-d or phone or text 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sponsorship and advertising packages can be tailored to your needs whether it be a product or brand service you're looking to promote if you are interested in sponsoring or advertising please contact me on 07 956 371 483 or alternatively zm at womensradiostation.com Hello this is Anna Kennedy we're at Women's radio station voice of Women Worldwide talking all things autism we're on the last section of the programme if you'd like to be one of my guests on the programme please contact me at the charity website which is www.anna Kennedy online.com I'm actually booked up right until the middle of March but if you'd like to be one of my guests on the radio station please contact us and we can arrange for a date for you to attend so we're going to be talking about kinds of strategies that work with PDA but before I go over to Steph I just wanted to share with you tips for supporting a child in the classroom so a school environment is often filled with demands and triggers for sensory and emotional overload which often leads to high anxiety levels for a child with PDA ground rules need to be as few as possible but then maintained using techniques such as passing over responsibility to a higher power example health and safety rule depersonalizing using imaginary characters or visual clarification giving choice or negotiating adjust your demands according to the child's tolerance level when anxiety is high reduce demands and when anxiety is low you may be able to increase demands accordingly take pride in your ability to work in collaboration with the child aiming to perhaps sorry aiming to prove you are the boss will be counterproductive it may help to give instructions to an indirect non-confrontational style practice asking without asking example I wonder if someone might be able to help me to do this have a safe place or several areas where the child can go to be alone when they are overwhelmed and when a child melts down use quiet tones give them space and reassurance try to think of it as a panic attack there's lots of useful information on the PDA society's website and this is one of the leaflets that I'm reading that says a teacher's guide to understanding pathological demands avoids part of the autism spectrum so Steph what kind of strategies would you say works with PDA in your experience? Okay well on my website I do have two separate posts actually about strategies and one of them is for strategies for in school and that was written by a mum who also works in an autism specialist school and then I have a separate post with strategies at home which kind of feeds off what we've been doing and this also links into the last question about ODD an oppositional defiant disorder because one of the main differences is the way in which you would work with somebody with either of those conditions so for ODD you would do what we would call typical parenting where you have stricter boundaries you would have reward and consequence schemes all the things that as a parent you expect to be able to use with your child but for a child with PDA they really don't work and so the kind of things you have to do is all based around reducing those demands to lower the anxiety levels you can offer choices but not too many otherwise it gets too confusing for them and then they can't decide between them Planning ahead so we always have a plan B and an X, Y and Z and there's always an escape route for anything we want to do and most of it is led by what Sasha wants to do anyway so it's about always being flexible it's staying as calm as possible because any sign of anger, annoyance or rushing in your voice increases those anxiety levels But that's hard isn't it? It is, it's totally You think of all these things that you're saying that you should do so you can't plan your day every day can you and obviously there's day to day living that you've got to get on with and so but it's really difficult and it is that and I think one of those things about the ODD PDA is I wouldn't choose to live my life like this it is much easier to parent our typical child than it is but this is the kind of thing that I'm thinking all the time so it's exhausting but I'm on my toes always trying to work that balance and you know stop the anxiety level from over spilling so some of the other things then building trusting relationships so that understanding is so important and that's you know I think we'll say oppositions about people Sasha is obsessed with me because I understand kind of this and keep that balance going Can she pick it up when you're not feeling well? Yes but you know maybe she doesn't mind so much about that No I notice that my lads get more anxious when I'm not well because obviously they feel that they're going to have to do it themselves and then the other thing which you mentioned that leaflet as well is about using the right language language is so key humour works really well so turning things into a game and I bet you can't brush your teeth before I finish doing mine things like that but also we never use the words you must or you have to or you should and we don't use no and I always laugh because I say no is Sasha's favourite word if she's using it but we were never allowed to use it and people go how can you live like that? If it was a real emergency you know if we had to stop her running in the road then obviously yes we'd say no but otherwise we figure out different ways around it of saying maybe maybe we can do that tomorrow but it's just not possible today or we'll think about that later or you know try and just use the language to avoid having that outright demand being placed on us Yeah it can be it can be quite stressful because I know my sister says to me when she comes to my house she said oh you'd be really bored in my house she said because we've just got into a way of being and you know like say for example I was chatting to a lady and I was just saying I was watching a program and sometimes a program that's about an hour long can take you three hours to watch it because you have to keep putting it on pause because of things that you're doing or if I keep it running and I'll come back and I'll say to show and I'll say like what's why is he doing that? So what's that and he's just like trying to catch up all the time and you're just doing a hundred things that you know and like maybe Angela's going to bed and then you'll come running back down and you start the process like at 10 o'clock and then at 1 o'clock finally you go to bed you know and all this sort of thing even though he's an adult he's like 26 but it's just like yeah it's like a juggling game and then sometimes you just think you know what I just like to go to bed when I want to go to bed I'd like to watch a program to the end without stopping it four or five times but it just doesn't work like that and there's no point in thinking like that because that's you can't be selfish it's kind of you're doing everything for them yeah it works so can children with PDA would you say can go to mainstream schools? I would say yes yes as long as the support's in place definitely and the PDA society did a survey about this actually and you know what kind of provision children were in they do attend a variety of schools but it really depends on the school's understanding and how flexible they are and on the character of each individual child obviously but the survey that the PDA society did show that about 70% of children were either not in school or struggling to attend and I think because actually that going to school is a demand in itself yeah there's a lot of stuff in the media at the minute about children being homeschooled and the local authorities not even knowing what they're doing not even recognizing not even on their list yeah there's a lot of information out on the media I think there was a program on television yesterday that I missed but I'll probably watch that on catch up but you can't watch everything you can't see everything can you? that's true yeah yeah so our demands is quite a lot so what do you do to relax? I always like to ask people I'm interested to know what do you do to relax so I like walking I walk with Angelo we do power walking we go to different parks sometimes we go to different restaurants that we've been before and there's like certain seats that we sit in you know it's just because you know it's going to work better there yeah in the corner a little bit you know that's less noisy so what do you do to relax because it's really important for us to relax and it makes me laugh when I read these articles when it says oh you need to get eight hours sleep I thought I should be dead by now the amount of sleep that I get but it's just like you just cope yeah and it all affects your mental health doesn't it definitely and I think that comes back to the blogging I do a lot of that it's free therapy but you know I spend quite a bit of time doing that and I enjoy it and on social media as well so I have you know interactions other people there's a lot you can find out online so I do enjoy doing that in terms of exercise I'm not as good as I should be but I do love dancing so when I can I'll get along to different exercise classes about to start a new mum dance one this term which will be interesting okay so what's that then? Mum dance what's all that? a new craze apparently and it's all about learning routines to kind of 80s music like flashdance and ABBA and things like that I think everyone should learn how to dance because I think it's just such a feel-good factor isn't it definitely it does a lot for you for your mental health it you know increases your flexibility if you're feeling a bit stressed it's a good stress buster so yeah as people know I do love dance so and what we were chatting about was how I incorporate things in my day so say for example I'm doing the washing and then I might be folding the clothes and I'll fold them into different piles so what I do is I take a pile upstairs like I go upstairs with one pile come back downstairs and then I take the next pile I go upstairs so it's like incorporating exercise I like for example when I come to Covent Garden I park my car in Uxbridge I always park it on the fifth floor so I go down the stairs and then I go up the stairs and you know you also see how fit you'll be coming and like I try and run a bit faster going up the stairs and I'm thinking when I first started doing it I got to like the third floor thinking god I couldn't get and get to the fifth floor but then when you've done it so many times it's just like comes quite easy yeah and then like in the morning you know when I'm having a bath or something and then I'll get up and it's like five minutes of just doing a bit of exercise in the bathroom so it's just like you can incorporate things you don't have to go to classes if you can't get away because as you know if you're a one-parent family or if it's difficult for you to get away from home you can incorporate things and even if you just want to go in the garden or run around the garden or just jump up and down little trampet whatever it is you need to do it to get rid of a lot of stress so that's something so I would say I would advocate please please please find time for yourself to do lots of different things we've got the Autumn Hero Awards coming up in November so if you would like to nominate somebody we have 12 different categories so it's www.annakennedyonline.com so if you check the events page you will see Autumn's Got Talent we take it across the country as a roadshow we're off to St. Ives again in June we're also bringing it to Ricelet this year at the Winston Churchill Theatre so if you'd like to audition and send in your auditions via YouTube channel or via a CD or whatever it is that you want to send us in we can basically look at it and we're choosing 10 performers for St. Ives with 10 performers that are performing on May 4th and then 10 performers at the Ricelet Theatre which is the Winston Churchill Theatre and then 10 performers we'll be bringing from the London so we've got people already asking for next year because they said oh are you doing it in 2020 I can't believe it will be nine years next year that we'll be doing Autumn's Got Talent I recently just shared a little clip on social media today of my boys 20 years ago and I just can't believe how 20 years has just flown by and it's a little video that's part of Not Stupid which was a VVC video diary that I did and there's a young man playing the piano there at that time he didn't speak and he taught himself how to play the piano and I think that's where the seed of Autumn's Got Talent probably started for me so we're at Women's Radio Station voice of Women Worldwide next week my guest is going to be Dawn Asifer and she's a grandparent of a young woman on the Autumn spectrum so we haven't had a grandparent we've had moms we've had dads we've had autistic adults and so it's the first time we're going to have a grandparent so she's going to be talking about the extra support that she can give and also as a parent of a young person on the Autumn spectrum if you want to be one of my guests please contact me at Anna Kennedy Online www.annaKennedyonline.com we're at Women's Radio Station I'd like to thank Steph for coming along from all the way from St Albans so thank you Steph and keep well keep looking after yourself and keep dancing Women's Radio Station is a fresh new broadcasting platform driven by love and passion connecting women around the world in a global network is all about diversity from opinions career ethnicity education we aim to show the individuality of every woman everywhere providing opportunities and a platform for your voice women the possibilities are endless that's what makes us different Hi I'm Liz Van Linden a UK travel consultant for Hazelmere Travel People come to me as they want unique experiences and a personalized service this happens from the moment that they inquire till they come back here I work with luxury tour operators you can contact me on 07825 441212 and Liz spelled L-I-S at hazelmeretravel.co.uk I'm Tamila Zaman founder of Empower and Enrich when it comes to money do you climb up or get confused? 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