Hello, this is Anna Kennedy and we’re talking all things autism and another busy show for you today and also busy last few weeks for me too, as always. So, yeah, we had our autism Expo, which was amazing. Our speakers were just so good.

So many questions people were asking. We had our clinics as well where people could ask for advice and also the exhibition stands where a lot of them are parents who have children or adults on the autism spectrum. They’ve had to give up their jobs and set up a business.

Carrie was there, gave a wonderful presentation. And then obviously she brought her new book and she did a book signing, as did Tess and Kratow, who has also been a past guest on women’s radio station. So it was a busy day.

We were shattered as always at the end, but always positive comments. So really, really appreciate that. So we’re looking at doing it again next year in July, possibly on a Friday this time.

So but more information will be on the charity website. It will be at Brunel University again. It’s a great venue, lots of free parking, easy to access and easy to get to.

So if you keep checking out our charity website, www.annaKennedyonline.com, you can see our weekly updates. Also exciting stuff. We have announced our Autism’s Got Talent performers that are going to be performing in our 13th year.

Oh my God, 13 years. And that will be happening in October and once again at the Mermaid Theatre. So I just want to read everyone’s name so they can hear it out on the radio.

So it’s Henry Bradshaw, Isla MacManus, Dylan Pitt, Poppy Pandit, Lewis Turner, Sam Epstein, Oscar Bugave, Cher Marie Ellis, R.L. Abriana, Finlay Minnes, Alana Barry, Casper Mason, Nathan Trevert, Fred Tennant, Zach Brooks, Kien Butler, Sky Richards and Colin Brennan. So congratulations to you all. We look forward to seeing you all and performances wise to kind of wait.

It was so tough. We narrowed it down to 30, but then we had to narrow it down to 20 because if not, the show will go on forever. So 20 performers from across the UK and overseas.

So exciting stuff. We also announced our judges for the Autism Hero Awards, which on September, they will be meeting up and they’ll be have the tough, tough choice of choosing three finalists for each category. So 10 categories.

So we have Dionne Brown. We’ve got David Grant again, Samantha Lee Howe, Ben Pearson, Joe Luck, Charlie Mullins OBE and Kelly Barker. So those are our judges that will be meeting up at the Cumberland Hotel in Marble Arch.

So the event itself will be happening on November the 25th and it will be our fifth year. It’s a lovely hotel. It used to be the… Oh, I forgot what it’s called now.

I can’t remember the name of what it used to be, but now it’s called the Cumberland Hotel and it’s in Marble Arch. And the actual tube station, you just come out of the tube, walk around the corner and there’s the hotel for you. So we’re looking forward to seeing everyone just so excited for that.

I’m also celebrated 20 years with Daisy Chain. So they have an event and I will be presenting some of the performers from the Autism Scout Talent Roadshow, which happened in the Northeast. So they celebrate in 20 years and have been one of their patrons for nine years now.

I can’t believe it. Nine years time flies when you’re having fun. So my guest today is the lovely Steph.

So she is a mum who’s got two girls now aged 17 and 15. She started a blog, which you will be sharing the information of very soon. The day she visited the pediatrician with her younger daughter, Sasha, aged two years and seven months at the time.

The visit produced some shock news that she might be diagnosed on the autism spectrum. Sasha had delayed speech, but at the time we didn’t suspect it was anything more than that. So I’m not going to give anything else away.

And I met Steph quite a few years ago, and I can’t remember how many years. But hello, Steph. And thank you very much, Steph.

Curtis, can you remember how many years? Because I can’t. Four years ago, 2019. Before lockdown.

Yes. Yeah. OK, then.

Yeah. So time flies when you’re having fun. So before we talk about PDA, before we talk about autism, who is Steph Curtis? Where were you born? What were you like growing up? Oh, OK.

So I describe myself now as a 50 year old mum of two girls. I was born in Manchester, brought up in the Blackpool area. And now I live down in Hertfordshire.

So I’m like you’re a northerner down south. OK. And yeah, I went to school.

I like school. You know, I had a great family life, had two brothers. You know, we’re still all in touch and close.

And I went off to study business in Germany University. And I ended up buying toys and stationery for Astor and Sainsbury’s job. And I love that.

I loved retail. Buying was very fast paced and quite high pressure. And so, yeah, when the girls came along, I did have to stop that, which is a bit sad.

So we talked about Blackpool. And as you know, we both love us of dance. We have to get that in there.

Yeah. The Blackpool Tower and watch any dancing. Oh, I never got to watch any.

I’ve been in there and seen the ballroom, although not since it’s been no refurbish, doesn’t it? But yeah, an amazing setting. Oh, wow. I went there a long, long time ago.

I can’t even remember the actual ballroom. And I can’t even remember why I went there to be fair. But I did go and I remember it was just quite overwhelming.

But I haven’t been since it’s obviously been refurbished. And as you know, we both keen strictly come dancing. I just can’t wait for the next show coming up.

Wonderful costumes, because I remember when I did the vehicle strictly when I went into the costume department, I just wanted all the dresses on the wall. And it’s just like interested in watching them, how they put them together and how they adapt past dresses. Because remember, when I wore a dress, one of the dresses that I had was from Caroline Black.

And then another one dress that I had, it was a long dress. Then all of a sudden she got the scissors off. She started cutting it while I had it on.

I said, what are you doing? She said, oh, that’s what we do all the time. We adapt them. And it was just really interesting watching how they put all the costumes together.

So talk to me about the diagnosis process, because I’m always interested as well. How long does it take to get a diagnosis in Hertfordshire of autism? And is it a longer process for PDA? Oh, yes. So for us, obviously that was quite a long time ago now.

So Sasha was, yeah, two and a half or so. And she is now actually just turned 16. So 14, 14 years ago.

It’s a long time. And we probably had slightly different to most. We all the reason we went to ended up a pediatrician was because Sasha had a speech delay.

And so we actually went via a speech therapist first. She was making plenty of noise and sounds, but the words just weren’t coming out clear. And because she’s got an older sister, you know, two years before, we had to kind of compare her to an older sister, obviously.

And we’re told they all develop at different rates. But we just kind of knew the speech wasn’t coming along as it maybe should. So, yeah, we went to the speech therapist and then it was that from that initial assessment that that speech therapist suggested we needed to go and see a pediatrician.

And so that whole process, that probably took about six months to get the first speech therapist. And then from there, another two, three months before we saw the pediatrician. And at the time, that felt like such a long time to have to wait for me.

And, you know, a lot happens in six months in a child’s life, of course. But I think now, I mean, timescales are probably much longer than that from what I hear from other families locally. So, yeah, I don’t think anything is getting better.

I don’t know about respect. I know that’s really sad. And I think as well with the cost of living crisis and everything that’s going on, everything’s delayed.

So on average, I’ve heard it’s between two and five years. I have heard some families where they’re having to wait a lot longer, especially if you’re an adult and you want a diagnosis as an adult. Sadly, if you pay, you can get it done a lot quicker.

But as I’ve said, for children, the Caldwell Center, they have a means-tested diagnosis process. So if you fall within that barrier, you can get it for free. And it only takes, I think, something like within six weeks, so depending on their waiting list.

So it’s worth actually contacting. So it’s the Caldwell Center and they’re based in Manchester. I haven’t actually been myself, but I’ve read about it.

So it sounds pretty good if you’ve got years of waiting. Because the thing is, as you know, as a knock on effect on the family, as a knock on effect of the school. And it’s just it’s just not good.

And early intervention, as we all know, is crucial for our kids. The early you start working with them, the better the outcomes. So can I ask you, do you have heard about autism before before your daughter was diagnosed? No, only the typical Rain Man film that I think most people hear of.

So, yeah, but actually, after the diagnosis, it was surprising how many people kind of seemed to come out of the woodworks, you know, neighbors and friends of friends and all of that. So very quickly, we found out that there were a lot more autistic people around, but we just weren’t aware of them before that point. Did you have friends as well where I spoke to pass to many, many guests where they were friends before then once the child was diagnosed, you know, they lost contact.

They didn’t know how to deal with it all or across the road if they saw you at the others. Did you ever experience any of that? We’ve been really lucky, actually, with the kind of people we’ve had around. So I don’t think there’s been a lot of that, thankfully.

Yeah, I know it can happen to families. It’s really sad. It is.

What about your extended family? Were they all on board? Yeah, all again. And again, I just keep saying, you know, I’m so lucky they’ve all been so brilliant, so supportive and understanding and just brilliant. That’s so good.

Yeah, all of that. I think we were lucky because we had the older daughter and, you know, we could kind of compare to her. What with different people could see what we were doing with that older daughter was working fine.

So from that, yeah, we’re really lucky. So how do you daughters get on together? Because that’s something else that parents talk about siblings. You know, they’re worried about that because of the demands of the child that has autism, that sometimes they feel a bit guilty that they’re not given the same attention to that.

The rest of the siblings or a sibling. Yeah, I think that can be the case. We were lucky again because our elders seem to understand very quickly how we needed to react to and work with her younger sister.

So she’s kind of grown up knowing that all the time. It’s not really that we changed anything for her. But, yeah, a lot of parents can feel, a lot of siblings can feel like it’s not fair when other siblings need more attention or, you know, don’t have to follow through on certain requests.

Yeah. I always say our eldest daughter, we can parent typically, you know, she will follow the kind of rewards and consequences and all of those typical ways that people expect to be able to parent. And it just wasn’t the same for our youngest.

And so, yeah, she’s been really God our eldest. And in terms of how they’ve got on together, they have, I mean, like all siblings, you know, there’s always those moments aren’t there. And that feeling of unfairness can creep in as well.

But they’ve been great, great friends and, you know, great. Have learned from each other, I think, along the way. They’ve been able to play kind of computer games.

Minecraft was a big thing in our house. And they did a lot of playing those kind of things together. And that definitely sounds lovely.

We never got we never had a Minecraft stage. So I don’t really know that much about it. So talk to me about PDA.

So we see this is why you’re on the show today. And the parents listening in, they might think that their child might have PDA. So talk to me about PDA.

What is it? And what’s your daughter first diagnosed with autism and then PDA? Is that how it worked, how it happened? OK, so so we went after the autism diagnosis, we went away and I started meeting with a group of moms like that. Coffee morning once a month, moms who had autistic daughters. And I’d go along to these retooks and I’d think, oh, well, you know, Sasha sounds a bit like their girls.

But there’s just there were differences. And I think probably the most of the things that stood out most were that Sasha was very sociable. She loved being around other children and she had a great imagination and she liked routine, but only if she was the one who was deciding what would happen.

And all of her reports, when she was younger, would say on her own terms, if things would happen, if it was what Sasha decided could happen. And so she’s very definite about what she couldn’t couldn’t do. But without really having the language to back that up.

And so, yeah, it’s interesting. Actually, the language is something that they originally thought was part of PDA, but isn’t necessarily a key feature now. But that was one of the things that highlighted it to us initially.

OK. So, yeah. Do you have been in this system? Would you say how long has it been recognized? So there was a British woman called Elizabeth Newsome, Dr. Elizabeth Newsome, who first recognized this group of individuals of children who were displaying autistic characteristics, but something different from other autistic children that she saw.

And so she grouped these together and named this. So PDA is Pathological Demand Avoidance. And that was back in the 80s, 1980s.

So it’s quite a long time ago. But it takes time, obviously, for these sort of ideas to filter through. And there’s still research ongoing about PDA.

So it never really stops. And people are just trying to understand what it is that makes this different. So, yeah.

OK. Elizabeth Newsome was quite a long time ago when I was with a speech and language therapist. Lovely lady.

So you decided that you wanted to write a blog. So tell me a little bit about the blog and where can people find the globe, the globe or even the blog? So where can they find it? And how did you feel after the first post? Obviously, people are a bit apprehensive thinking, oh, shall I do this? Sean, I’ll do this. They know I’m just going to go for it.

So yeah, the blog. So the blog is at www.steps2girls.co.uk. And number two, or TWA. It’s spelled out in letters TWA.

Steph is S-T-E-P-H-S. And we’ll link it on the shoulder in the top. Yeah, so I did that.

I wrote first the day that we got the autism diagnosis. And I just went home and it was such a surprise to me, a shock that I was kind of a guest trying to get my feelings out. And back then, I didn’t know that anybody would really read it.

Probably in my mind, I had that it was more for local friends and family to try and explain why, you know, what had led to this diagnosis of autism. Because to most people, Sasha was only two and a half. So to most people, she just seemed like a typical toddler.

And, you know, certain things, it just seemed like she wasn’t getting her own way, so she wasn’t happy. But I knew and I could understand already that there was much more to it than that. But you needed to be with her for a lot of time to see the kind of the triggers and what was happening.

Yeah. So, yeah, that’s how I started it. It was over the last 14 years or so.

It’s great. You know, I’ve grown the people who read about it via social media. And it’s really nice to be able to to share.

So families don’t feel so alone because we are really judged for the behavior of our children. And obviously, all autistic parents, I think, are sadly. But so it’s nice to be able to sort of put some explanation and, you know, feelings behind it, I think.

Yeah. I’m just looking at the blog now. So you’ve got various headers.

You’ve got what is PDA? Ten things about PDA, books about PDA and our PDA story. So let’s look at the books. So which books have you read? Because sometimes you read some books and I’ve spoken to other parents about this and they read them.

And sometimes it just goes over the top of the head. But the certain books that just really resonate with you and you just really get them. So what books did you find that really helped you? Yeah.

So the main one is it was actually written in 2011. So just after, really, Sasha was diagnosed. It’s called Understanding Pathological Demand Avoidance Syndrome in Children, bit of a marriage.

And it’s written by Phil Christie, who worked closely with Elizabeth Newsom and then three others as well. And when I read this book, it just almost brought tears to my eyes because it seemed like they were describing my child. And within that is also kind of different strategies and approaches to use.

So it’s a really good, comprehensive book about PDA. And even though it is now 12 years old, it’s still very relevant today and describing PDA so well. So with reference to PDA, so would you say that children who’ve got autism and children that have PDA, would you say they’ve got a similar high anxiety levels or would you say children with PDA have a higher anxiety level? Yeah, that’s difficult again because it’s a spectrum for all of them.

But the anxiety is definitely, I would say, has been for our girl, a key factor in her not being able to do certain things. And it’s not always been obvious, but when we kind of, as parents, say we have to sort of become detectives and figure out what’s been going on, especially when you have a child like we did who wasn’t really able to communicate so well. And even to this day, she’s not, she doesn’t really do conversations.

So we’re always trying to work out what’s going on for her. And anxiety has been one of the main causes really of why she can’t do things. And I think with PDA, we always say it’s a case of can’t, not when.

So it’s not that they choose, it’s not they choosing not to do something. It’s that there’s a reason why they can’t do it. OK, so with reference to anxiety or maybe she might get a panic attack, how do you deal with that and how do you help her? I’m just thinking of people listening in as well that might be experiencing this.

Everyone loves tips and advice. And I know all children are so different from each other. But is there anything that you can suggest that they could try to help them lower their anxiety levels? Yeah, so there’s some key things.

I’ve written a blog post about this, but I also at this point want to highlight the PDA Society and their great website. They might have a lot of approaches too. But if I talk about kind of what I kind of figured out.

This is on your personal experience. Yeah. So we kind of learned, you know, really that we had to put all the work in up front to try and make life calmer.

So there’s not once you get to the point of meltdown of that extreme anxiety overload, there’s not a lot you can do other than let that person work through that in their own time. And for us, it was definitely at that point about not talking to our daughter, because that would overload her even more. And actually, we again, we were lucky because our daughter wasn’t violent or aggressive at the point of meltdown.

And she was she would typically curl up into what we call the mushroom, just, you know, a ball. And, you know, there would be screaming and crying. But then it was like she was immovable and couldn’t do anything.

So, yeah, we put a lot of work in and still do every day into kind of approaches that we use up front so that we don’t get to that point of overload. So I’ve run through those. There’s eight of them that I’ve talked about in my blog.

So top line is we are flexible. So we’re always trying to, you know, to work to what she needs, basically, building relationships. We found is really important, that sort of trust.

So that, you know, she knows we understand her and why she’s finding things difficult. Yeah, trust is huge. I used to get so many children when I set up a million amount of school that the trust was lost because of everything that happened previously in whatever setting.

So it’s a big one. Once you get the trust, then things start to grow gradually. Yeah.

Yeah. And part of that was not forcing her to do things that she was able to do. And so we would also plan ahead.

So we’d always have a plan A, B, C and Z for if we need to leave the house and go anywhere, then we’d have an exit plan. We’d know where the quiet spaces were. We’d give detail about the trips and advance, all that sort of thing.

And we would offer her choices. So involve her as much as possible in whatever the options were. We found that language is really key and how we say things.

You know, we think some people find it strange, but I say we never say no to our daughter. No, as a word, is so strong. Yeah.

Would cause such an extreme reaction from her that we had to learn how to say no without saying no. So we’d say maybe, oh, you know, we aren’t able to go to the playground today, but we should be able to do that tomorrow or kind of things like that. So, you know, if we weren’t able to buy something, an explanation, but they’re always being honest to keep that trust relationship as well.

But language is so key. And within that comes in using humor, language and actions as well. That made such a big difference to, you know, being serious is something that piles the pressure on massively.

So I’m not saying life is one big joke, but generally we have to be quite lighthearted and stay quite calm. Another one, you know, remaining calm most of the time. But the biggest one, I think, is reducing demands.

I think until you have a child with PDN, you don’t realize how many demands are in your typical day from, you know, get up, get out of bed, wash your teeth and wash your face, brush your teeth, you know, get dressed. All of these little things, every single one of those puts on pressure. And then there’s the pressure of time on top of that.

There’s so many demands within every day. But if you can reduce some of those, then it takes the pressure off and then life is calmer. So we work hard at doing that.

And it doesn’t mean, as somebody asked me, it doesn’t mean we have no boundaries. There are still boundaries, you know, and our girl very much knows right from wrong. And, you know, isn’t this impossible? But it’s just we don’t have the same, probably typical parenting rules that we did have for our eldest, you know, things like screen time and limiting screen time.

You know, it’s something that as parents, we typically would have done. But for our youngest daughter, doing that caused more issues. So, yeah, we’ve learned to change the way we parent, basically.

I was just going to say like adapting. Did you find that really hard? Yeah, it is because it’s you really have to change the way you think about everything. And I started to I think how I did it was I started to question myself, does it really matter? So, you know, does it really matter if our daughter can’t sit at the table to eat tea with us? You know, if she has her food sitting on the sofa watching television, why does that matter? And I think there’s so many things in everyday life that we automatically do, either because we were brought up like that and we expect our children to do it to all words and we want to change things for our children.

And but we just kind of go ahead and do them without really questioning and thinking about why, you know, people say it’s important. So, yeah, we’ve had to turn everything on its head, basically. Yeah, we don’t all sit at the table.

It just causes too much anxiety. The only time we sit at the table is Christmas. And then maybe Easter.

He doesn’t like the way, you know, Shawn eats, for example, he doesn’t like watching him. And when we are at the table at Christmas, it takes me so long to prepare everything for about 10 minutes, if that. Well, and that’s it.

Yeah, I mean, we we just have Christmas without our daughter coming to the table. And it is sad to kind of accept that as a parent when you want to have a big family together. And, you know, you do also worry about being judged by other other people and for not doing those kinds of things.

But, yeah, but they don’t live with you every day, so. And I think the other thing is being consistent in what you do so they don’t get mixed messages. And I think that is relevant for schools as well, because if everyone has a different approach, then it’s obviously very confusing.

Yeah. So for me, that’s a biggie. So how can you tell the difference between PDA and ODD? And we were just chatting, actually, just before you came on.

I thought, I just love all these labels, the way they described. It’s just like, where do they where do they get them from? But I suppose, yeah, that’s the way it is. And it’s full of acronyms as well, isn’t it, that you find a special educational needs system is just full of acronyms.

It is. Yeah, some big long words. So ODD is oppositional defiant disorder.

That’s the people listening in. Yeah. And so the main difference, I would say, is that PDA is an autism spectrum condition, profile of autism, whereas ODD is not.

So they’re separate without respect. But I think what happens is children, PDA children will sometimes be given ODD because they’re kind of the behaviors might seem similar on the face of it. But I think one way of probably telling which is the case is how they react to the approaches because what works is very different.

So ODD kind of strategies approaches are all about strict discipline and traditional parenting, sort of coming down harder on the children and using those rewards and consequences. But they just don’t work. Generally, they’ve been shown to be ineffective for PDA individuals.

So they might work once or twice, but then it doesn’t carry on. And, you know, when the anxiety is extreme or, you know, that kind of need to avoid demand is very strong and they won’t work. And so that’s, yeah, I mean, I think probably most people would tend to trying to be, you know, stricter and use those typical strategies first.

You know, the standard way most parents would go. But if they’re not working, then it could be a good a good indication that it might be PDA. I think one of the things about PDA is sometimes it can be difficult to see because, like I said, you know, that’s actually being very sociable.

That is one of the key features, I think, and that ability sometimes sometimes a great ability to have conversations as well. But it’s kind of hiding a depth, you know, depth of understanding of kind of social rules and all of that. So, yeah.

Yeah. And also parents, you know, when they do struggle, they tend to stop blaming themselves, don’t they? Because they don’t really understand. And what we’re saying is the more people that are aware of PDA, they’re better.

And the trade. What do you think training is like for PDA? Do you think? Training, did you say? Yeah, training. Do you think it’s getting better? Yes.

I say the PDA society, I can say they run great courses because I am one of their trainers. And so we are getting lots of people who come on the courses and it always makes my heart sing. The more people who know and understand about PDA, the better because I think there’s still so many people out there just haven’t heard about it at all yet.

So, yeah, it’s kind of that understanding can make a real difference, I think, to a family’s life. And I know, you know, lots of people contact me through the blog saying that as well. It’s that sharing information really helps.

Yeah. I remember there was a program on television, I suppose it called Born Naughty or something like that. It was about pathological demand avoidance and the backlash of comments from people who just didn’t really understand it, saying that they were naughty children that just didn’t want to be told no or something like that.

So there should maybe be an updated program, do you reckon, on television to explain it better? And also, I was just chatting to somebody else about children and adults who are autistic that maybe come across as more articulate. They need to be more programs, like say, for example, like my son Angelo, that, you know, who always going to need one to one support for the rest of his life. You know, he’s always working on independent living skills all the time.

And just to show how hard it can be for parents and for the individuals themselves. They need to show more children and adults. It’s, you know, some of these programs are great.

And the one that Chris Packham did, I really like that program. And I think that should be shared across all schools, universities, employment, because I think that he got the balance right there. But, you know, there’s a lot more programs that focus on children and adults that, let’s say, for a better word, they’re more articulate.

Yes. Yeah, now I agree. There’s a lot more could be done.

OK, so talk to me about how your daughter’s coped in the education system. What was it like for it first? And how have they changed working with your daughter to make it relevant and meaningful for her? OK, we were really lucky again because we had an elder story. They got the Lucky Gordon ticket.

I’m sorry, but I feel like I’m not giving that whole breadth of, you know, the trouble that people have. But yeah. And so it’s actually got a diagnosis obviously before school.

So when she went to the same school that her sister was at, it was a mainstream infant school. And we were able to give them some information and prepare them. And they were brilliant.

You know, they were very inclusive. They, you know, tried everything to involve Sasha. I always used to say that Sasha was was the same everywhere.

And what you saw was what you got. So luckily there wasn’t any masking by Sasha at a young age. She was avoiding demanding school as much as she was at home.

And, you know, when she was overloaded, they would provide a little quiet area for her that she could go to. She was allowed to walk around the classroom as the other children were being taught. And there was no no comments when she was younger of, you know, if we let her do that, then all the other children are going to want to do it too.

You know, we were just lucky with the school that they really took her on board and were great. But she managed there until she was 10. It was just after her 10th birthday.

OK. That final year was year five of junior school. And it became more difficult for a couple of reasons.

Obviously, the academic workload was increasing. So, you know, demands being put on her in terms of academics was more. And then also she started to notice that kind of the difference between her and her peers.

So she couldn’t talk with them about things that they were interested in, like music. I was just going to ask that. What is it like with her peers? Does she have a specific topic that she wanted to talk about? Her interests are so different to what, you know, mainstream girls at the same age were into.

So she was has always been very much about gaming and, you know, the Internet and actually digital art and animation is her big thing. But she’s not really able to communicate or, you know, have conversations with anybody, really. So that that kind of made things quite difficult.

And she herself identified that she wanted to go to a different school. She didn’t want to be in a school, but she wanted to go somewhere with children who are more like her. Right.

She was a bit of a challenge. There is no such thing in our country. There’s no autism specific schools in our county at all.

Right. And there’s really nothing between mainstream and special schools. Right.

So we were left with a bit of a problem. She was out of school for about eight months at that time. And we tried a special school.

That was a moderate learning disability school. And Sasha’s not. She doesn’t have a learning disability in that way.

She has learning difficulties in terms of, you know, not not being able to sit down and follow a curriculum that’s decided and led by someone else. But, you know, in her mind, she’s a well, she’s very capable of, you know, English and math, but just not doing them to kind of exam standards, as it were, which is difficult. So anyway, she tried the special school and that really didn’t work because she wasn’t like the other children.

And so we kind of limped through that for about a year. And then she came out about about six months before lockdown, actually six straight months and was then still out of school at that point because there was nothing else suitable in our county. What did you do while she was out of school? How did you help her? So I’ve tried.

My mum was a primary school teacher, actually, and I would have loved to. I mean, I didn’t want to be a full on teacher, but I actually would have loved the idea of doing lessons at home for her. And so I tried at times, but she’s never been able to kind of take in or learn according to someone else’s agenda.

So, you know, I tried in other ways, like by doing trips out to a bit more like, you know, a forest school idea where it’s a bit free and bringing in other topics into conversations and that kind of thing. But it’s, you know, it’s very difficult and it was a long time she was out of school for. So she’s missed out on a loss of education and that hasn’t been a real problem for us.

OK. What can you see her doing in the future? Oh, so, yeah, as I said, digital art and animation are her passions and she’s taught herself everything she knows so far. That doesn’t surprise me with us.

She’s got talent. I’ve seen so many that taught themselves on YouTube. Yes.

And that is what will happen. You know, I think there will be nothing I can tell her to do. It’ll be how she sees that developing.

But but yeah, she’s very talented in that. And I think she could set up her own business. Yeah, I think she will.

Yeah. You probably need to help her with the sort of business side of it. Yes.

But if you listen to anything, I don’t know. Oh, this just sounds really great. So, yeah, it’s really frustrating that there isn’t anything.

Is there such a thing as a PDA school? I’m trying to think. I think there is somewhere that was attached. I think maybe in knotting up to the Elizabeth Newsome Center originally, there was a school.

In fact, one of the rights of that book I mentioned, I think, was one of the main people at the school. So there are schools, I don’t know if they’re labeled as PDA specific schools, but it’s more about understanding just how you work with it. That’s what can make the difference.

And of course, again, it’s a spectrum and some children will be able to make it through mainstream school for longer. A lot depends on the attitude of people who are working with those. So it’s PDA definitely now fall under the awesome spectrum, do you reckon? So that’s what the latest, I think, research.

Again, I’m going to point towards the PDA Society on their website, which is www.pdasociety.org.uk. And they have a brilliant comprehensive website. There’s lots of research papers that they link to on there. And yeah, that’s the current thinking, but there’s still research ongoing.

Yeah, because I remember, oh, I think it was 2018 or 2019. I went along to the march and they had like a peaceful protest at Parliament Square. And then we delivered quite a few signatures.

I can’t remember how many to the Department of Health, because obviously they wanted PDA to be recognized on the autism spectrum. So I always wondered after that what happened. Because obviously then there was lockdown and everything else.

How did your daughter cope with lockdown, talking about lockdown? For her, it wasn’t a bad thing, really. She was already out of school and it just meant that we were home all the time to be around her. Obviously someone was always there with her, but the family were all there.

So she kind of felt like others were having for us. It was like others were experiencing her life, because really it felt like she was locked down without the school to go to before lockdowns actually started. So it wasn’t, although it was a long time and it had an impact on finding the next step for her, it wasn’t a terrible time for us.

I’ve heard that for quite a few families either. It was either awful or it was better because there was no pressures. Exactly.

Whereas I think for those who need the routine and the structure, then it would be more difficult. Yeah, I know Patrick found it difficult because obviously then he wasn’t allowed to go to work. So he had to work from home and he just found that really tough.

And obviously they had the teams meeting twice a week. But yeah, he’s quite frustrated because for him work is work and home is home. So yeah.

So yeah. So you’re going to write a book. So tell me about that.

Have you started? I’ve actually already written the book. It’s pretty much finished. I’m just working on the last edit now.

So tell me about it. Yeah. So it really is our story.

So yeah, from that moment of diagnosis onwards and you know what’s happened for us. And the reason I did this was because although there are quite a few books published about PDA now, I think the more there are, the more awareness there will be. And so I kind of wanted to share our story and to help other families really.

And there are going to be some bits of advice in there, although I always kind of cringe a little bit because I don’t feel because I know everyone’s situation is different. I don’t feel I can go around telling other people what to do. But I can say some things that helped us along the way or what things we maybe got wrong and we could have done it better.

I was going to ask you, if you had to look back, what would you have done differently with anything? Oh, that’s difficult because I can’t say I’ve got it all right for sure. And maybe being a bit more forceful about the school situation would be one thing, as in when we got to the point where it wasn’t working anymore. But yeah, I think we were lucky that again that we found about PDA quite early on because then we did start using those approaches that made such a huge difference to our life and what we were able to do.

But yeah, things have gone OK and I’m quite happy with home life, really. Have you ever thought about setting up your own school or unit? Oh, I did. Yeah.

I mean, I wrote about it a few years ago. But I think when you have a child, I can’t really say this to you, can I? But you have a child who needs a lot of attention. It’s difficult to kind of find that time.

And also, you know, I worried about that being able to cater for everyone and that whole being inclusive, because, you know, when you’re talking about children who need more of an individual approach, then I totally appreciate how difficult it is to have, you know, a school and a system where children need to be doing different things. And Sasha’s quite, I mean, I’ll say extreme, but, you know, that the whole being led, being taught by someone else has really not worked first. She’s very much more independent.

So, yeah, school has probably been more of a problem for her than it would be for some other children. OK, so with being at home, what about friends? Yeah, friends was was quite difficult. When she was at the mainstream school, she kind of had a group of friends who she would have called them her friends.

They probably, you know, they identified that she was different. They probably wouldn’t have called my daughter one of their friends, but not in a mean way. You know, kind of she just she was sort of on the edge of that group.

And, you know, totally understandably, you know, they had different things that could talk in a different way between themselves. And so they but they were great. You know, there was such a support for her when she was at school.

And since then, it has been really difficult for her to find and connect with other children or peers. And actually what we found the last year and probably from lockdown onwards is that she has now connected with other mostly neurodivergent people, I would say, online. And, you know, although she doesn’t play much, just play in game with some.

She’s actually started playing Dungeons and Dragons, which I know I’ve never actually seen watch that the film and whatever else that goes with it. It’s just really popular. So it’s been around a long time and it’s more from a gaming.

And it’s actually a role play kind of game. So it’s all about putting yourself in the character of someone else. So she does that brilliantly.

She loves that. It’s not not what I would ever do. Yeah.

I know that when at the school as well role play was like a big thing for some children. It was a way of tapping in to sort of not having to deal with things as they are. Pretend as someone else, it’s easier.

So you talked about allowing the option of seeing. So I was just looking up while you were chatting. And it says a person with PDN needs to feel they have some control.

So using non-negotiable words gives the impression that you have made a decision for them and taken away their control. So avoid using demand words such as because I was trying to think of various different words. So it’s need, must or must not, will or won’t, can’t, now and by like a time or a date.

So what you’re saying is instead make requests instead of demands. Try opening requests with phrases such as is it okay with you if or is it okay with you if and then whatever it is that you’re going to ask them. How do you feel about, do you mind doing or going or would, could you, whatever it is.

If you’re happy to and when you have finished with blah, blah, blah, could you then blah, blah, blah. So those are the sort of things you’re doing at home. Yeah, so definitely a bit of language like that.

Some of that might be what’s the word, too open to like, if you ask my daughter, are you happy with doing this? She would instantly say no. I said we didn’t, you know, we didn’t use the word no, but it was one of her favorite words to use that. So we had to be very creative and careful about how we would phrase requests.

But yeah, for sure, sort of using different language and that, yeah, making sure that time demand, time pressure wasn’t on. So yeah, there’s lots of again on the PDA Society website, there’s lots of great ideas of how. But choice in that is you have to be careful.

There’s not too much choice because then they might get into this kind of choice paralysis situation where they just can’t decide and that’s creating more anxiety. You can’t decide between too many options. So keeping it simple is something I would definitely do.

Yeah, I always remember even Patrick, if I said to him what he would like, then he used to throw it back at me and sort of say, well, what do you think I might like? Yeah, the whole thing just really, really overwhelming. Yeah, it’s getting better at it now, I would say. And as I say, as our children, adults mature, they can achieve much more.

Like one thing, for example, with Patrick was food. Why would I eat anything? And then Daisy might just say, I don’t want anything today because I ate yesterday. But now he’ll try anything.

And he’ll just go in and try anything before. It was just like, no, I don’t want the chips touching the chicken burger. You’ve got to be on that side of the plate and that, but now it doesn’t matter.

He still thinks certain foods are disgusting, like he can’t bear people eating soup. You just think the slurping noise, all the soft noises. It’s just like, no, no, no, that’s just too disgusting.

That’s so good here because Sasha only eats eight different foods and she eats the same thing every day and has done for about six years at least. I did go through a stage where I taste tested food with her because, you know, she agreed to do that, but she probably only ever got as far as licking or the tiniest of nibbles. So for her, yeah, that idea of not trying new food is quite strong, but I’m still hopeful.

I would say now is not forever or never saying never. Yeah, no, definitely. They definitely do change things, you know, like Patrick traveling as well, going up on his own to holidays and stuff.

You know, as long as you’re helping with the planning and then, you know, if he gets stuck while he’s away, you know, they’ll say, Mom, what do you think? And I just I always throw it back and say, well, what do you think you should do? And then he knows what the answer is. It’s just the reassurance. I bet you never thought he would be doing that either.

No, I’m just in on his own and all of that sort of thing. You know, he obviously still has his anxieties and struggles. And I’m always there, the listening board, if you like.

So obviously, these things can be quite overwhelming as a parent, let’s just say. So we obviously need to have time out and it’s really tough. And I’m always promoting it and it’s on the charity website.

You know, Wellbeing, Juliana’s our wellbeing ambassador. We brought Juliana in over lockdown because it got quite overwhelming for a lot of parents, you know, because obviously certain things that they could do that they couldn’t do anymore. You know, things places were closed and all that pull over.

And so what do you do to relax? What’s your take five? And so for me personally, I’ve just this last year, actually, I joined a choir and it’s called The Big Choir London. And we raise money for cancer research, which is a core cause close to my heart. And so I go once a week along to sing.

And that’s a good way, I think, of getting all those tensions out. OK. Yeah, that’s my main thing.

And I love dancing as well. I love music and theatre. So whenever I can manage to make it out of the house to do one of those things, I will.

OK, then that sounds good. So I didn’t know about you singing. So you’re a good singer.

No, I wouldn’t say that. I can’t say it. I don’t think part of the choir hidden in the middle.

I’m a terrible singer. I just clear the room. Obviously, I like my dancing.

And that’s like I think that’s what I love to do. And it keeps me feeling young. And as the older you get, you need to keep everything moving and all the rest of it.

And I don’t do enough of it. And I did stop Zumba. And I really need to start it back again.

And I still do like a bit of exercise in that moment. As many of you’ve seen, I dance in the office when I’m feeling a bit stressed. So yeah, so it’s all it’s all good stuff.

And obviously, I love my strictly. And I love going to Coventry, where I’m a judge. They call it Strictly Christmas.

And I go there every year. And I’ve been the only judge that’s been there every year for the last five years. So basically what they do is they get like somebody who might be in the community.

So it could be the mayor or it could be somebody in the police or whatever it is. And then they pair them up with professional dancers. And then it’s got eight weeks to learn two numbers.

Oh, I love that. I want to do it. I’m going to move to Coventry.

I know you keep messaging me, but it’s just like having the time to think. But it is lovely. And they do it for something that’s called a charity called Zoe’s Place.

And it’s for children, obviously, at the end of life. But the end of eight. So sad because there’s always like parents that come up at the end that actually give a talk.

But I usually, you know, the judges, they’re all like from Strictly. So this year I’m excited that I’m going to be back with Robin. So he’s going to be one of the judges with me and Christina and then somebody from the Strictly Christmas charity.

So that I absolutely love that. And it’s nothing that’s autism related because I think sometimes it’s good to do things that are not. You know, obviously, I have two sons and my husband’s on the spectrum and then I work with it.

So it’s good to do something that’s not autism related, if you like. So what I call my autism free zone. I usually get someone, though, that will come up to you.

I just say, you know, my son, my daughter’s been diagnosed. Can you help me? Can you give me some advice? So people want to find you. Find your blog.

Where can they find you? Yeah. So the blog is Stest2Girls. So www.stest2girls.co.uk. And then I’m on most social media forms.

So Facebook, Twitter, Instagram, YouTube, all of those kind of places. And I’m at Stest2Girls. OK.

So nice and easy to find me everywhere. So have you got anything planned that you’d like to be doing in the next sort of 10 years or so? You know, can you see your blog progressing? You’ve won an award, I mean, as well. I’ve won an award this year.

Yeah, that was great for writing. What was that award then? So the BAPs were for bloody awesome parents and supporters. People who write about their children with additional needs.

So yeah, I’ve obviously have been writing a long time. And actually, that was a form of self-care as well, because I think, you know, it’s like free therapy for me. Often getting a lot of those feelings out.

So going forward, you know, the book will be out in January. So I’ll be building up to the launch for that. And then no doubt, I’ll still be around on social media after that.

Well, if you’re not on to like in a shop or something, you know, give me one bite, I’ll come and see you. It’s okay, yeah, that’d be nice. Yeah, it’s just like, you know what? When you when you first receive the book in your hand, it’s such a weird feeling.

And it’s just quite overwhelming. Do you find it therapeutic writing the book? I found it much harder actually than writing the blog. It’s very different, obviously, having to put it together much in a much longer way.

So I’ve done, you know, I’ve written so many blog posts over the years, but they’re obviously much shorter bursts, and in a different kind of style than you would write a book. So, yeah, it was hard work writing the book. Yeah, no, I found it quite therapeutic.

But the thing that I found the hardest was remembering everything. And I actually did it with a ghostwriter, and we become good friends. And basically what he said to me was, right, get a dictaphone or however you want to do it.

If you get a thought in the middle of the night, just get up and like type it to me. And that’s how I did it. And so I remembered a lot more than I thought I would.

Then, yeah, so it was it was hard because I like a person that has done so many different things, you know, and trying to remember everything that I’ve done in the past type of thing. And I keep saying that I’m going to write another book because obviously the book ended when we opened the school and the college and I’ve done so much more since then. It takes a lot of time, doesn’t it? It does.

It does take a lot of time. And I’m pleased to say that Patrick started writing a book. And obviously his passion is dinosaurs and paleontology and all of that.

So he’s writing a novel about dinosaurs and he’s been very nervous about it. And he writes a little bit every now and again. And somebody who I know that has written quite a few books, he’s spoken to him and he said he’s really good.

He said he’s got a real talent. He just needs some tips type of thing. But he started writing when the film Jurassic, the latest film came out in the Jurassic series.

And obviously they made the film at Pinewood Studios, which he was obviously overwhelmed by because he works there. He’s been working there for four years now in July. And he wrote a review for Jurassic Park, the book written by Michael Crankton.

And it was put on the internet across Pinewood. And one of the scriptwriters saw it and really praised him and just said, you’ve made me want to read the book by the way you’ve described it. So that gave him the confidence and the boost to think, oh, I’m actually okay.

You know, I write okay. And I then took him to the Natural History Museum where we met with a paleontologist who we met or must’ve been about 20 years ago that I introduced him to. And then he wanted to make sure he was on the right track and the way he was writing it.

So she confirmed it. So again, that gave him another boost. You know, it was by a paleontologist that said, yes, Patrick, you’re on the right track.

Gave him some ideas of the way the story might like to evolve type of thing. So that’s right, really boosted his confidence. Because I think with a lot of our children, our adults, the confidence can get quite low because of either bullying or whatever’s happened at school.

Would you say that? And for Sasha, because she’s missed out on so much education, there’s nobody been giving any feedback and praised her for the work. She’s also written fictions, fan fictions. But no, she doesn’t get feedback.

It’s just us, her family, and she would call us biased. Obviously we are. So she doesn’t really want our feedback, but there’s just so few other people involved.

Did she not put it out there? Why didn’t she start a blog with her fan fiction? I wish she would. But yeah, she’s a bit more cautious, I think, or not sure that everybody would like the kind of things she’s writing about. So I think, again, she’s still only 16.

I think she will get there. And I hope, I kind of wish her and her older sister would both write about their experiences, about living with this. So we’ll see in the future, by the way.

I think they’re probably major when they get a little bit older. I don’t know, even with Patrick’s things just turn and then all the different things that you think, oh, no, they’re never going to do that. And then they just do it.

Actually, they have given me a little bit that is from them that’s included in the book. And one last thing about my book is that my husband has actually written a chapter. So it’s quite unusual to hear from a dad and a dad’s point of view.

So I think people will enjoy his chapter, probably more than mine. Yeah, because Sean wrote a chapter about how he felt about being diagnosed on the spectrum when I did that fight in 2009. So how has your husband coped with it all? Yeah, I mean, he’s fine.

I think work is probably his priority what he throws himself into. So he’s out working hard. But yeah, he’s been very supportive and helpful.

But it’s difficult because I think Sasha has a stronger relationship with me because I am the one who’s been here all the time. And that does make things more tricky. I think for lots of dads, they feel that as well.

Yeah, I’d say that was the same for both my boys because I’m the person in the house that let’s just say that there’s always pushed for everything and the one that also makes the rules in the house so they know where they stand, where Sean is more their friend. They know where they stand with me, where it’s like it’s a bit fuzzy with him. Yeah, I can understand that.

Yeah, so it’s been really lovely talking to you. We’ve still got a couple of minutes left. So is there anything else that you would like to share with our listeners that you think would be beneficial for them or with reference to PDA? How would they push to get a diagnosis and if the authority where they live, recognize it? It can be.

It can be so patchy like a postcode lottery across the country. But there’s so much good information out there. And again, I’d say the PDA Society website, they have a great page about diagnosis and diagnostic pathways and who you should go to and how to kind of think about what evidence you might need about how your child is reacting or what you’ve tried with them.

So I would point everyone in that direction first and it’s obviously the case going to the GP and asking for referrals to specialists and see what happens. But I know it’s so frustrating for people. We see the wait times a minute.

So in the meantime, there’s nothing that says you can’t use these approaches. They’re not detrimental to any children. So parents and families can just kind of look at all this information really online and see what happens.

Yeah. So Steph obviously going to write an article about what she’s been talking about today. So that’s on the charity website.

And the link’s just in case you didn’t have a pen to write it, scribble it down quick enough. That again will be on the charity website. And please don’t be suffering alone.

If you want advice, there’s lots of help out there. The PDA Society, you could reach out to Steph or even sometimes on Facebook, just say, hey, I need some help. Do you know what? There’s a lot of good people out there on social media that will help you or guide you in the right direction depending on where you live as well.

You know, chat to people. Just share your experiences. It’s good to offload and not just think, oh, I better not share that because I might think I’m a bad parent.

That’s a big thing where there’s a lot of parents don’t want to share because they’re worried about what people think. Would you say that, Steph? Yeah, definitely. That whole being judged, it happens.

We all know it happens. And other people think they know what’s best for your child, but yeah, we know best. OK, so again, if you want to follow what we’re doing on the charity, it’s www.AnnaKennedyOnline.com, keeping up to date with what we’re doing, with our events and our news pages constantly being updated.

If you want to follow me on social media, it’s at AnnaKennedyOne on Twitter, AnnaKennedyOnline on Facebook, at AnnaKennedy OBE on Instagram. And I want to wish everyone a great summer as well because that will be coming up with the kids being off school. And I know it can be really, really tough.

So please just take it one day at a time, try and take five when you can. And thank you again, Steph, for chatting to me. It was lovely and lots of useful information.

Thank you, everyone. Bye. Thank you, Steph.