Hello, this is Anna Kennedy, and we’re talking all things autism, and we have a busy, busy show today. I’ve got very interesting guest, Rachel, but we’ll talk about Rachel in a minute. So as you know, I always have a couple of books that people send in to me or past books that I talk about.

So this is quite a new book. It’s Carrie and David Grant, a very modern family, stories and guidance to nurture your relationships. So Carrie and David have an extraordinary family story to tell.

They have four children, one of whom is adopted, and all have come with a curveball, mental health challenges, neurodivergence, trans, non-binary identities, various sexualities, and they are a mixed race family, too. It’s a reflection of the fact that as society is changing faster than most of us can keep up with, the wider concepts of family and community are being deconstructed. There are those who are desperately clinging into the old and those who are desperate for the new to be accepted.

How do we hold our families and communities together in unity? How do we create a society where all are included and none are oppressed? So this is a book called A Very Modern Family. So it’s written by Carrie and David Grant, who are very good friends to the charity. And David is also one of our Autism Hero Award judges for the second year, which we’re very grateful for.

So all the judges are going to be meeting very, very soon to go over hundreds of nominations. They need to choose three finalists for each of the 10 categories. And then there’s two categories where I choose on my own.

And it’s one, I volunteer of the charity, and then one who I feel has particularly done a lot in the last year. So we’re excited. That’s going to be happening on November the 25th when the 36 finalists will be traveling down to London.

And it’s such an amazing event. Don’t forget as well, we’ve got Autism’s Got Talent. So we have chosen all of our performers now.

So they will be performing at the Mermaid Theatre. And that will be happening in October. Tickets are on sale now.

So all of that information is on the charity website. Just to remind you, www.annaKennedyonline.com. Don’t forget, also, I’m a champion of Born Anxious, which is a clothing label to help children and adults who are autistic. So as you know, a lot of children, they don’t like the labels or they say the fabric’s a bit scratchy.

So there’s lots to choose from on Born Anxious. Kelly is the founder. Her son is Oscar.

And he was the inspiration behind the company. So the clothing label is to help children and adults with autism. Born Anxious is a homegrown clothing label set up by Kelly, Mother of Oscar, an autistic child living in Hernebane, Kent.

Born Anxious raises awareness of autism and invisible disabilities in two ways. It can be worn to inform or can be worn just to support. So your first order is 10% discount.

So if you put in the code Born Anxious, you get a 10% discount off the clothing. And it’s www.bornanxious.co.uk. Again, that link is on the charity website, on the shop or even shop site. And last of all, if you need some information or you want some advice, you can contact our consultant, Paul Isaac.

So Paul is our ambassador. He’s autistic. He is offering free support sessions, which fall under the following three million topics.

So breaking down information processing challenges. Practical support for autistic adults or practical support for parents. So what you can do is book yourself a 45 minute Zoom session.

It’s free on a Thursday or a Friday. All of that information, again, is on the charity website. So you need to book the days that he is free.

And then you’ll be able to have a chat with Paul. He’s a wealth of knowledge and also been, I guess, a couple of times now on women’s radio station. Okay.

So my guest today is Rachel Moltus. She is 39 years old and lives with her partner, Matthew. Amy, who’s 18.

Harry who’s 11. And James is 10. Star the dog and miggens the cat in Devon.

She’s a psychotherapist and she’s currently undertaking a PhD with the University of Plymouth, looking at how people over the age of 55 who live in supported housing use technology in their everyday lives. So welcome, Rachel. Hello there, Anna.

Thank you. Thank you so much for joining me today. So before we talk about autism, before we talk about anything else, so people can get a little snapshot of who you are.

Who is Rachel? Well, I don’t know. Well, I’m fairly adventurous. I really like outdoorsy things.

I’m pretty sensible. I hope I’m very boring. I’m sure you’re not.

Where were you born? I was born in Western September. My dad was in the RAF, so my parents have moved around quite a lot. And they moved around a few more times until I was about seven or eight and then settled in Somerset.

And they’re still sort of in the house that I grew up in now. Yeah, my sister’s a year younger than me. And, yeah, we just… I loved school.

I sort of always wanted to be a physiotherapist. Did you? Yep, yep. Just, yeah, for quite a young age, really.

I managed to do some work experience, which kind of confirmed that was what I wanted to do when I was about 15. Okay. Yeah.

And then, yeah, went to Birmingham University when I was 18 and, yeah, studied physio. And then, yeah, that’s been an amazing kind of opportunity to go and work in lots of different places and do lots of different jobs, meet lots of different people. How long do you have to study to be a physiotherapist and what is it that you have to do? So what’s the process? Well, in England, it’s a three-year degree.

So, and it’s quite practically kind of based. So you do various placements, which I think are usually around six weeks long. And you get experience in sort of a broad range of areas.

So, yeah, you can work in sort of children’s, in sort of intensive therapy or intensive care kind of units, in oncology, just all, yeah, all sorts of different areas of the hospital, almost every area, there’ll be a physio. So what’s your favourite? I’ve really enjoyed working with older people. That’s what I’ve mostly done.

So, yeah, and sort of stroke and acquired brain injury and things as well. Okay, so you’re still doing that now, obviously. So you have three children, so Matthew, Amy and Harry.

Sorry, Matthew’s your partner. Amy, Harry and James. So I believe you have a child that’s on the autism spectrum as well.

So how old is that child and how long was the process? Oh, yeah. Yeah, James got diagnosed a couple of years ago with autism. He’s, yeah, he’s doing really well.

I didn’t know anything at all about autism, really. I didn’t know anything, really. But I just knew that there was something that was sort of different about James.

Well, how highlighted it was at the school or was it you or did somebody say to you, do you think your son might be on the autism spectrum? It was kind of me in the end because James was, well, he had a sort of complicated birth and things. And then he was just really sort of a bit delayed with every milestone. But it was always a little bit vague because and I think because I was a health care professional as well, I sort of thought that I would know if there was something sort of something else, you know, something that was else that was affecting my child.

And so he, yeah, things like walking, sitting, speaking, he could do it. He just seemed to choose not to. But it wasn’t probably till he was about kind of four and people used to say, why have you still got him in the pram? Why are you carrying him everywhere? And he had some speech.

His speech is quite delayed and not very clear. And but we kind of carried on because people just, you know, health care, other people that we came across, teachers, when he had reviews and things, they just kind of thought he’d grow out of it. We had a bit of speech and language therapy as well.

And yeah, eventually it just became really difficult with school. He was having awful meltdowns. He wouldn’t go in.

He wouldn’t get dressed to go in. It was just be really difficult. And it was, yeah, kind of I suddenly started to learn a little bit about autism because a friend of mine had a child with autism.

And suddenly I realized that actually James kind of fitted into so many of those sort of traits or beliefs that he was displaying as well. So how long was the process till he got to the, was it a good, was it an easy process or did you have to keep pushing? Yeah, no, it wasn’t particularly straightforward, but I think that’s fairly common at the moment because of the divide on services. So we had some input from the Children’s Centre, which was local to us, around COVID time because he really wasn’t coping very well with the kind of change of structure.

And I did the referral for him to go through the autism sort of service that was local to us in Devon. And yeah, got the GP to sign it, got the school to sign it. And I think, again, having a healthcare background was really helpful because I knew how to fill in those kind of forms.

You know how to navigate. Because it can be quite daunting when you don’t know what you’re doing and you want to make sure. And also it’s the waiting time as well that frustrates a lot of parents that I’ve spoken to.

So once you got the diagnosis, what was the support? Like, you know, did it come fairly quickly or again, did you have to push for that? Yeah, I mean, it took two years to get the diagnosis. And like there wasn’t really any support in that time, although during that time I kind of recognised that I was pretty sure myself that James was autistic and that like I was putting things in place myself. So, you know, trying to understand things that would work better for James.

And I think intuitively as a parent, you probably already know what’s best for your child. So even before I even thought about whether he might be autistic, I knew that he needed lots of downtime, that he needed time on his own. He’d just take himself off into sort of, we’ve got like a little playroom and he’d just take himself off there on his own and sit a few metres away from us.

You know, he’d have the food and then he’d take it away so that he didn’t have to be so close to us. And I didn’t used to kind of make him come back and sit with us because I just knew that’s what he seemed to need, even though it was a bit different from what I was… I totally get that way. And that everyone eats in different places.

So it’s just like what works for us and it’s just like, who says that everyone’s got to sit together? And I’ve shared this before, the only time that we sort of sit together and it’s at Christmas for about 15 minutes if that, and then everyone just disperses really quickly. But it’s just, you know, that’s how it is. And that they sort of, even like when my son comes, Patrick now he’s moved into his own flat.

I just shared today that he’s been living for well over a year now on his own and he’s been working at Palmwood for five years this month. I can’t believe it. And considering he was like 11 weeks premature, he’s done really, really well.

And he’s just booked his first holiday as well to, as in overseas holiday on his own to America, which I know I’ll be biting my lips. But he’s something he wanted to do, he’s quite determined. As long as I’m at the end of the phone, he’s quite happy.

But yeah, he was very much like, you know, I didn’t like to sit at the table, didn’t like hearing the noise of people munching or eating or slurping or whatever it is. He just couldn’t cope with all of that. So even as I say, sometimes he just comes and if he wants to make a sandwich, he won’t come and sit and eat with us.

He’ll just eat it in the kitchen. But as I say, you just do what works, don’t you? Yeah, you just have to change how you think about things, don’t you? And I think, as you were saying, sort of when you get the diagnosis or once you understand things yourself, it is much easier to be adaptable. Well, I find that that was the case.

So is James still at the school that he was at? No, he wasn’t really coping very well at that school. So we moved him and we’re really lucky actually, there’s a very tiny school with about 60, 70 children in the whole school, sort of a village up from us and their head teachers are send specialists that had just moved to that school. Oh, that’s so useful.

Yeah, we were so lucky. He just got, so we moved, I moved both the boys actually to that school and they both really thrived since they’ve been there. They’re in the same class, but they’ve had an amazing teacher, amazing TAs.

Yeah, and James has been really well supported. Yeah, lovely children as well, really kind and yeah, it’s been, you couldn’t really ask for any more. We’ve been very, very lucky.

So how long can you stay there for? Well, he goes into year six next year, so it would be his last year there. Yeah, and then I don’t know what’s going to happen next. Okay, so do you know of any secondary schools close by? Do you need to start looking now? Yeah, well, we’ve had a look for my other son and he’s going to our kind of local college and that will hopefully be really good for him, but it’s not going to work for James.

But then there’s just, yeah, it’s just difficult to find other options. We’re going through the kind of EHCP process at the moment. It can be quite daunting if you don’t know, with reference to what should be in them, what shouldn’t be in them.

We sort of spoke very briefly earlier and I just said Ipsier is a good website and it’s spelled I-P-S-E-A and they’ve got some good information on there and also some template letters that you could adapt that would suit your child. And they do have volunteers on the phone, but I know it can get quite busy and it can be quite tough to get through. And again, you can always contact our charity as well.

So there’s a contact form, just need to fill out the information and we’ll try and support you as best we can. So I just think all the, do you know what, those smaller charities for me work really well because they’re a lifeline to many families who’ve got children or adults on the spectrum. But what’s also happening now is because of the cost of living crisis, there’s a few charities that are closing because they just haven’t got the funding and our accountant for our charities, he normally looks after 40 smaller charities and he said a quarter of them have closed, which is really sad.

So yeah, it’s just, it’s just quite difficult. We just got to try and find the right fit for you and for your son. And so you’re looking for a school for him.

So hopefully you’ll be able to find something or a college. So what do you think that you’ve learned through having your son James? What’s it taught you about yourself? Well, I’ve, like I said, I’m fairly outdoorsy and adventurous and like, you know, like fizzy, like lots of action and James is the complete opposite. He doesn’t really like to leave the house.

He’s not very keen on a change of routine or yeah, or anything that’s not, anything adventurous or particularly sporty. He’s not generally so keen on, although it can be adapted in various ways to see him. So things like he’s started playing a bit of badminton lately, but the rules are not like any other game of badminton you will have ever played.

It involves a trampoline and shuttlecocks going over the top of it and diving for the thing. Well, that’s what works for him. Exactly.

You always like me to adapt. So what sort of things do you like to do with reference to you? So you’re like quite adventurous. Is that like cycling, swimming, that sort of thing? Yeah, I’ve done like an Ironman in the past.

That was when I lived out in Australia. That was good. And a few half Ironmans as well.

One last year actually, because it’s quite hard to have so much time when you’ve got children and busy life. Yeah, so maybe running, cycling, swimming. We’ve done a little bit.

He’s got trespassers as well, aren’t they? They are, yeah, yeah. So what does your son like doing? What’s his favourite thing? Oh, well, he’s quite into dog shows at the moment. We’ve got a dog and he loves taking her to like local village with feets with dog shows.

So we’ve been doing quite a bit of that over the last few months. Yeah, as long as we enter every category, we seem to be able to win something. Is this Star? Star, is that the name of the dog? That is Star, yeah.

What kind of dog is it? She’s a crocus spandrel. Oh, okay. Yeah.

And how old is it? Yeah, it’s a girl. She is two in September. Oh, so quite young.

She’s young, yeah, she’s pretty crazy. My friend has got her mum, so we sort of watched a video pretty much, or, you know, she was, as Star was born, she was kind of lifted up into the air and we got to see her. And then we visited her at the, my friend Hannah lives on a farm, so we pretty much visited her every weekend until she was ready to come back to us very well.

Oh, that’s a nice way of doing it. Yeah, she’s been really good. Yeah, it’s been really good for James actually getting a dog.

He spends a lot of time cuddling her, and yeah, and Star’s probably not, you know, she’s got a lot of energy. So maybe we probably should have chosen a slightly calmer dog in hindsight if we were just buying a dog for James. But she’s a good dog for our family because, yeah, she comes on a, she likes going for a run, and she’s, yeah, she’s like lovely natured.

Yeah, she’s definitely positive. Oh, that’s nice. And you’ve got a cat as well called Megan, so they get on.

Not incredibly well, although they’re just starting to tolerate each other a bit better. So how are your siblings together? So how was Amy, Harry and James? How were they together? Well, Amy’s my partner’s daughter. She lives with us, and she’s brilliant with both the boys, actually, really lovely.

And yeah, she totally gets James. And yeah, just being that much older, she’s got quite a lot of patience. And yeah, and Harry’s just, oh, he’s very loving, very, very kind.

Like I said, he and James are in the same class, and I think they probably wind each other up a little bit. You know, but Harry’s brilliant, isn’t it? Exactly. But yeah, Harry helps him get dressed and makes his toast and various other things.

And I keep saying, just let him do it, Harry, because we’re trying to get him to be a bit more independent with things. But yeah, bless Harry. He’s always there to help James.

That he’s looking out for him. Yeah, yeah. And it’s good as well, actually, because James won’t really tell you what’s happened in a day at school, whereas Harry is very chatting.

So you know everything that he’s done, everything that James has done, and yeah, everything most other children in the class have probably done as well. Yeah, okay. So let’s talk about the app.

So you are developing an app to support autistic children. So talk to me about that and how it was born and why you want to progress with this. Yeah, well, I never expected to be going down this route at all because I’m like, I wouldn’t have said I was particularly good with technology, but I started a PhD a couple of years ago with the University of Plymouth, looking at how people who live in supported housing are using technology and how that’s kind of affecting their everyday lives.

So just the day-to-day things they do in their lives. And sort of at the same time as doing this, we’ve sort of been experiencing various sort of challenges, might not be the right word, but things with James getting to school has been really difficult in the mornings. And particularly for us, we found getting dressed has really been a huge kind of, at times, battle and a big delay, which is not a great start to every day.

And James, he loves Minecraft. He’s brilliant at Minecraft. His memory and his skills in Minecraft are amazing.

And he loves that kind of gamification side of things. So I just kind of was thinking, I wonder if you could combine some sort of app to help autistic children with doing some of these tasks they find difficult because rather than it being the parent or care and nagging them kind of every step of the way, if perhaps it was an app on the phone telling them what they should be doing, that might be a bit more helpful and maybe giving them rewards and things along the way. So it was kind of just an idea of my head.

And I spoke to a friend from my soccer club about it. And he just sort of said, oh, we’ll go for it. Like, think about it a bit more.

And I did and managed to get a small grant, which was like from e-health productivity and innovation. And yeah, it just gave me sort of 10,000 pounds and quite a lot of mentoring and support to sort of set up what’s called a wireframe prototype, which I had no idea what that was at the time. It was a bit of a learning curve as you were going along.

It has been, yeah, definitely. Yeah, and we’ve done it all the way. Harry and James have been totally involved, sorted from the start, because sort of in my head at the start, it was about making something to help James.

But then as it kind of started to gain momentum, it made me realize that I wasn’t alone with some of these challenges. And I think until that stage, I hadn’t really spoken to many other parents because it hadn’t been too long that James had had his own diagnosis. And I didn’t really have a huge kind of network of support around me at that time.

And it’s sort of through developing the app that has linked me up to lots of other autistic children and their kind of parents or carers and things. Sounds good. Yeah, so we’ve kind of had a lot of fun.

The boys have been down, it’s been developed in Newquay. So we’ve been down there, met with them, as interactive solutions who are building it for us. And they’ve been brilliant.

So yeah, we’ve kind of, we’ve just got it to the stage where it’s kind of just working on my phone. So it’s a kind of working prototype at the moment. So is it just for children or could you use it for adults? And what about even like elderly patients? Yeah, I think like us, the initial thought that it’s kind of gone round in circles quite a few times was that it would be for children that were probably around seven to 14.

But as I’ve kind of shared it with, we’ve had lots of people like view it and give feedback and things. I’ve started to realize that it would be potentially useful for a range of people of different ages and not necessarily who are autistic. So yeah, so it could be maybe sort of people who’ve had some sort of acquired brain injury, like sort of stroke, it might help them get dressed that way.

But we’ve got lots of different tasks and things that we’re adding or hoping to add into it as well. So yeah, but I think it has been all the input we’ve had so far has been from autistic children and their parents and carers who are seven to 14. But there’s quite a lot of scope, I think.

So you guys have quite a bit of feedback then to help you develop it. Because obviously, whenever you try something, you might have these ideas, but then when you share them with people, they sort of look at things from a different angle and then they’ll say, oh, no, I’m not quite sure about that. Yeah, yeah.

And it’s been like, I’ve been really lucky because the funding, the sort of European Union funding, which has just run out now, but I sort of was at the very end of all that. So I’ve been able to get quite a lot of mentoring and support. So I’m separate to my PhD, but the University of Plymouth helped again and they sort of came and wrote a report from a focus group that we ended up running from my house that we had four autistic children and their parents or carers came, plus a load of other siblings.

And it was pretty chaotic, but we kind of showed how the app worked. Harry and James were quite involved as well. And then we got feedback and sort of had a bit of a report from them.

And then I’ve also had videos made by some friends, sort of six full sons, and they’ve been amazing and they’ve done two videos for me so that we could share how the kind of prototype worked with sort of stakeholders, say people from healthcare or education, like head teachers or teachers or people who, yes, like a huge variety of people who’ve had speech and language therapists, doctors, occupations. You’ve got like a wide variety of professionals as well. Let’s look at it.

So what’s their sort of initial reaction? Oh, well, it’s been really surprising how positive everyone’s been about it. And I think part of that is probably because it’s hard to be really negative, isn’t it, when someone else has feedback. But I think there’s also a genuine, like I really believe there’s a genuine need for this because a lot of people, I think especially whilst they’re waiting for a diagnosis and even afterwards when there’s not really much practical support available, like because how our app works, it’s quite practically, it’s just practical.

It’s very focused on a task and breaking it down into individual bits. And it provides like a short video link by healthcare professionals, just to give you some sort of tips on completing the task and things. So some of them are quite big, like some tips like encourage, perhaps putting all the clothes out the night before so that the child can get them and put them on that way or maybe just encouraging the child to put on the last item of clothing so they feel like they’ve completed the task and then maybe the next time seeing if they can do the last two items of clothing and things like wearing socks inside out so you don’t get uncomfortable bits around your tombs.

So, yeah, so I think because it’s quite practical and I guess because I’m a healthcare professional and I’ve had loads of input from other healthcare professionals developing it and it is hopefully addressing a need, the reports we’ve had. Just about getting dressed, what other tasks could you put on there? Yeah, we’ve sort of done some bits of market research and been using quite a lot of sort of Facebook groups that are kind of autism-based, which have had really supportive people kind of responding to them as well, so to try and understand what things other families are finding challenging. So, yeah, there’s a range of things like tidying bedrooms, packing school bags and then even kind of managing puberty and things like that.

Yeah, that can be quite tricky for our children because it’s obviously the change in the body and it can be quite stressful. I can make them anxious. Yeah, yeah, and definitely I think it’s kind of interesting where my PhD is kind of slightly overlapping at times with this is around kind of health inequalities and just recognising how many health inequalities kind of autistic children, young people are experiencing and, yeah, around kind of, yeah, autistic people who menstruate, things like how difficult that is for them and just the supports not always there when it needs to be in the right time.

So, yeah, I think there’s so many ways that it could be used to help improve people’s lives really. So if people want to check it out and try to see where you’re at at the moment, where can they find it? Obviously, you’re going to be writing an article, or you’ve written an article, I should say, for the charity website. So if you go on the latest news page where we update our news every week, you can see the article that Rachel has written.

But I believe you’ve got a crowdfunder, is that right? And how are you getting on with that? And what is it you’re looking for? Thanks, Ellen. Yeah, we’ve run like, I mean, I’ve been really lucky with kind of grants and things to this stage. So, Cornwall Council, their sort of Good Growth Fund have helped me out recently.

I’ve had quite a big grant from them, but part of it is matched funding the grant. So the rest of it has kind of had to come out of my savings and things. So, and obviously better PhD students, they’re pretty poor.

So I’ve previously ran another crowdfunder, which we kind of raised just over 1,500 pounds. So that was amazing, because that kind of helped match fund the other half. Yeah, we’ve got to the stage where, yeah, we’ve almost got a kind of fully working prototype.

So by the end of this month, that should be ready. And then we want to be able to share that with people on their phones and things and get some more feedback, because there’s no point, as you say, making something that just doesn’t meet people’s needs or isn’t going to be usable for them, or they’re just not going to find it exciting or motivating. So yeah, the next crowdfunder is about making a little bit more money so that I can pay the people that are part of focus groups and things, because I think it’s really important that people who are involved in any sort of research or product development are kind of rewarded for their time as well.

So yeah, and it will also help us then implement some of the suggested changes and things and help us with getting those improvements made and things to the prototype. So when do you think the finished product will be, what sort of date were you looking for? Is it to be announced or is it working? Well, it’s been a really strange project because there’s kind of no clear timeline because you’re always needing more money and you never quite know when or how you’re going to get that. But amazingly, it just keeps coming in, sort of drips and drabs and like time.

I just use a lot of your own time doing this as well. I think it’s called bootstrapping, which I didn’t know before, and before starting to do this. Have you heard that before? No.

So yeah, I think it will, like I’m hoping that I’ll get some more successes and well-being soon, but we’ll be able to get something working before the end of the year that people could actually use and would help them with one, with just the getting dressed task. Okay, so you’re nearly there then. So how do you fit everything in? Because obviously you’re a mum, you’ve got your kids and you’re juggling.

So how do you fit it all in? How do you sort of, do you allocate yourself some time, so many hours per week or what do you do? Oh, it’s quite varied really, because some like I’ve been doing this since for a year now. Yeah, it’s been about a year since I’ve had the idea. So we’ve done like a lot in a year.

But sometimes it’s quite busy. Like at the moment, I’ve got a grant application that needs to be sent off tomorrow. So that’s quite full on.

And other times you’re kind of just waiting because the software development company are working on something for you. So it kind of fluctuates, but I tend to get up really early in the morning and then just juggle everything around the boys. But they are like, I definitely want to make the most of all the time I’ve got with them.

So they’re the total priority and everything else is kind of fitting around them. And because there is no timeline to this, you can sort of be fairly flexible. So yeah, that’s how we’ve sort of gone so far with it really.

Okay. So you might not have as much time now, because obviously it’s a summer term and the kids are off school. So it’s less.

Yeah. How does James cope with being off school? Does he look after himself, or is it that you’ve got to be organizing trips or whatever it is that’s happening each day to keep him occupied? Well, he really doesn’t like going to school. I’m pretty sure he’s, you know, everyone tells me he’s fine when he’s there, but he finds just the process of going in really difficult and then he’s really wiped out and exhausted afterwards.

So actually summer holidays are his favourite time. And yeah, everything’s much easier for us in the summer holidays. I know that’s really different for lots of families, but for us, James, because there’s not that pressure of having to get out the door at a certain time and having to do things he doesn’t want to.

So he’s still like, I still write him a little list every morning of what I need him to do. So we note like on the list, it’s sort of just eat breakfast, cuddle stuff, clean your teeth, get dressed. And quite often because there’s no, if I asked him to get dressed on a school day, that wouldn’t be possible.

But in the holidays when there’s no rush and maybe he knows once he is dressed, he’ll be doing something nice. He’s able to go in and do those things. And he still has time, like he likes to play Minecraft.

So it’s kind of juggling how many, how long a Minecraft is sensible to be in him. And everything else going on in the days. Okay.

Do you have summer play schemes where you are? Because I get asked quite a lot by parents. Do you know of any play schemes or anything that we can do in the summer? Autism friendly days out. So you live in a lovely part in Devon, Tavistock.

I haven’t been there, but I have heard it is lovely. So is there a lot to do for people that are living, who are autistic, living in Tavistock in Devon? I don’t think, to be honest, there probably is, although I know there are in Plymouth and I think Oak Hampton as well. And I don’t know everything, so there could well be that we’ve just don’t know about or haven’t accessed.

But yeah, James isn’t great with those kind of, we’ve tried to sort of sports camp things before and they’re really inclusive, but he doesn’t always really enjoy those. So we tend to do more bits on our own and he still sort of sees friends this morning because I knew I was going to be on this call. So we’ve been met with some friends in like a river near us and we’ve been for a little sort of, there’s some rope swings.

So they’ve been swinging on the rope and throwing the ball in and out for the dog and things. So yeah, that’s the kind of thing he likes, not too long, not too far away. And then he can come back and go on Minecraft.

Can you sort of think back when you were younger to, this is a question I always ask my guests as well, to people who you might have thought, oh, they may have been on the autism spectrum at the time, but obviously you didn’t know, they may not have been diagnosed. Do you think back and think, oh yes, I recognise those traits. Yeah, there’s a few people.

I think it so much has changed, hasn’t it? Because when I went to school, like everyone went to school, you had to go to school. Yeah. And I think like James has been struggling to get into school lately and he’s had like days where he’s just not been able to go in and it’s kind of, I think there’s lots of people who have got views on that and it’s kind of, yeah, you think, I wonder if those kids in the past, if society was slightly different than, you know, how it would have affected them going forward and things.

Yeah. I just wanted to add, which I was going to add at the beginning that I forgot to say, which is some exciting news is that, I don’t know if you watched inside our autistic minds with Chris Packham, which was I think very well put together documentary. And I think all schools, universities, employment, they should watch this programme.

I just thought it was very well put together. And basically what’s happened is they have been shortlisted for the Greyston Awards. So the Greyston Trust has announced the shortlist for the 2023 British Documentary Awards.

The BBC’s top shortlist with 40 entries across its channel on iCloud, followed by Netflix with 17, Channel 4 with 14 and Sky. So one of my ambassadors, Ethan, was on the programme and he did so well. It was just so well received.

So just to, sorry, there’s an ice cream one outside. So Chris was diagnosed with Asperger’s Syndrome, a condition that has now officially been absorbed into the definition of the autism spectrum in his early 40s. His own storytelling, helping facilitate understanding of autism.

Chris interviewed, I think it was about three or four individuals and Ethan was one of them. So Ethan, we were very proud, you know, because he’s one of our ambassadors. He was part of the documentary.

And he said it’s been a different and enjoyable experience for him to be part of this documentary. He’s a bit wary at first because he wasn’t quite sure what to expect, but they handled it really well. So from the process of applying for the documentary to then filming the scenes for his part in the upcoming episodes, everything in the film was life changing for him.

So, yeah, if you get a chance to watch it, I think it might still be on iPlayer. So it’s called Inside Our Autistic Minds. So we are excited to see how it’s going to get on.

So it’s the Grierson Awards shortlisted and for the 2023 British documentary awards. If you type that in, you’ll be able to see more information about it. It’s now in its third year.

And, yeah, exciting stuff. So I know Ethan’s excited about it because they rang him to say that it’s been shortlisted. So keeping our fingers crossed for Ethan.

So did you watch, I was going to ask you, did you watch the programme? Yeah, I did watch it. Yeah, and it was amazing how many people sort of got in touch with me and said you’ve got to watch it as well, knowing that I was kind of building the app. But I did watch it.

I thought it was, as you said, really well put together and just really good way of kind of raising awareness of autism and just that everyone’s different, aren’t they? And it was just so beautifully done, yeah. Definitely. And plus what I liked was they had an autistic adult that was on there that had more significant, more challenges, like you say.

Because they tend to focus on adults that are more articulate, if you like, when they see a lot of these programmes or documentaries. So I’d like to see more programmes where, say, for example, there’s more adults like my son Angelo who’s always going to need one-to-one support, minimal verbal skills, always working on his independent living skills, poor sleep pattern, all those sort of things. I just think it would be useful for programmes to be made so that they can see the difficulties as well that they have and also the parents of trying to manage day-to-day with them.

So going back to your app, if you had to pinpoint the biggest challenges of putting something like that together since you’d never done anything like that before, what would you say was the biggest challenge and would you go back and do things differently? Well, thanks. Well, honestly, it’s been like an incredible journey, really, like literally a journey. And I sort of feel like if we’ve done something, you know, if it doesn’t, it just, you know, obviously, there’s so many apps that have been made at the moment and things, not everything’s successful.

But, you know, if for any reason that is the case for me, I’ve just had the best time, like, with the boys as well. Like, we’ve learnt so much, we’ve done so much to kind of have brought us closer together, because James has really enjoyed the process. You know, we’ve made something, which is amazing.

You know, we’ve shown kids at the school gates, looked at it, we’ve chosen, like, you know, little characters on there, and we’ve been able to, we’ve made something, so that’s been amazing. But, yeah, in terms of challenges, I think the hardest thing is to know where to kind of direct your time, because, and I’m like, I’m a physio, I’ve worked at the NHS for ages, and then I’ve entered this new world of, like, business and business people, and it’s really exciting. And you could do so many different things, and you could go down so many avenues, and you can speak to so many different people, and, you know, I’ve had some of these grants have been quite flexible, how you can spend them, others haven’t.

When you’ve got all that, it’s really hard to know where to put your resources. Yeah, so that’s probably been sort of the most challenging part, really. But I think we’ve done really, yeah, I think we’ve done really well, and I’ve been so lucky.

I’ve had so many people, like, give me their time for free. Yeah, that’s, you know, that have given me direction and amazing, amazing. It’s sort of all been developed in Cornwall.

Although I live in Devon, I’m very close to Cornwall, and some of my business is registered in Cornwall. And, yeah, everyone that’s done anything, like, we’ve had a little bit of sort of solicitor input around some of the IP, and we’ve, yeah, obviously the software development company buzzer in Newquay. Belinda, who’s doing this sort of being agile, so she’s sort of taught me how to plan techie things and how to roadmap and all that kind of thing.

So all these people have been, yeah, sort of based here. And other resources, like I’ve had the Southwest Academic Health Science Network. They’ve been amazing at kind of directing me what to do, helping review grant applications, and even sort of donating to my crowd funder from just the staff that work there and things.

So, yeah, I’ve been sort of really… You’ve built this, like, little family. Has it got a name? Oh, it’s called… We really just named it recently. And again, this is a friend who works in marketing in kind of Cornwall as well, and he helped with this part.

But we call it JAM up, like, as in J-A-M, and then up, because JAM is James’ initials. I was going to say that, so I’m going to say would you name it after him, because I think that’s pretty cool. Oh, thanks, yeah.

And then someone was joking recently saying that, because we’re kind of… There’s often like a Devon-Cornwell thing isn’t there, a little divide, which way do you have your scones and your jam and cream? They’re joking that maybe we were saying it’s like, jam up, jam on the top like you do in Devon. So that’s how you do yours. Yeah, that’s got nothing to do with it, though.

And someone else… So, yeah, that’s what it’s called. But I guess that could potentially change if we get feedback that says that’s confusing or doesn’t make any sense. So what’s your plans for the launch then? How are you going to do that then? Well, I’m sort of really hoping that we’ll be able to get it in through sort of integrated health services and things so that we’ll be able to get it into the NHS to support sort of at the point of when children, young people are kind of referred to the autism spectrum service that at that point they might be able to get access to the app.

So that’s kind of where I’m hoping for it to go at the moment. So I mean, this is another whole new world of kind of talking to commissioners and developing sort of, yeah, proposals in that way and things. But I’ve been getting a lot of support around that at the moment.

Yeah, I think it’d be really useful as well in schools. I think the earlier you start working with children for independent living skills, like what you’ve been talking about, I just think the better it would be. Even as young as Portage, I don’t know if you have Portage there in Devon where they come to your home.

It’s before the child’s five years old, before they go to school. That was the only thing that I actually got from my boys, was Portage. We had to create everything else.

But Portage was pretty useful for me. So I know some of the Portage services and some local authorities and areas have been cut. But for me, it was a really useful resource where someone came to my home once or twice a week and sort of gave me some ideas, because obviously my younger son Angelo, he had speech and then he lost it all and didn’t want to be touched and all those sort of things.

So she gave me lots of ideas. And yeah, I thought Portage was a really useful resource. So I think something like Your App would be useful for Portage workers going into homes and showing it to parents and starting early.

It’s all about starting early, early intervention. It is, yeah. And it’s kind of just been able to have some sort of a toolbox because what works for one person won’t work for everyone.

But if you can have a range of options that can kind of help you as a parent or carer, that’s really useful, isn’t it? So have you got characters on the, I think you might have, I’ve seen it. I’m sure you showed it to me before. I’m sure you have, but it was a while back.

Yeah, but it was like at the very early stages. So what sort of characters have you got there? They’re sort of based around James. Have you got, how’s it work? Yeah, well, we, yeah, I showed you a very early kind of prototype when we were on our wireframe stage.

And I think you, I was trying to remember because all my feedbacks now like merged into one thing. So I think all the days for me merging to work. I think it was you that said about having multiple pairs of socks.

Was that you? Oh, yes, because that was Angelo. Because when Angelo was young, he used to like to wear lots of socks on top of each other. So he’d wear eight to 10 pairs of socks.

And both wore retired if you tried to take any of them off. And he’s completely not doing that now. But when he was a child, he was always wanting, it was that pressure that he wanted.

Yeah. And so it was kind of because we’re trying to get feedback and then think how we incorporate it in. So, yeah, how can you show that you could put multiple pairs of socks on? Nobody else had said that actually.

So, yeah, so about that time, I think we were kind of speaking to lots of people to see what was the, you know, what it needed to look like and how it was going to work. And quite a lot of the feedback we were getting from the pictures we had at the time, they were just too complex. The sort of stuff that we had too much was going on.

There was like black and white tiled floors and alarm clocks. And it was, and people don’t use alarm clocks anymore. I remember now, because I see the thoughts, some of them looked a little bit too busy.

And lots of other people said that as well. So it’s been kind of tailored back in terms of simplicity and how it looks. And now we’ve got the kind of kids that fed in wanted pets, like animals, to help them with the task.

And then when we actually created the animals, they said they didn’t think they were smiley enough. They’re a bit grumpy. They weren’t all like super happy.

So we haven’t got that, you know, because I keep having to pay for a bit and then share it with people. And then I pay for the next bit. But, yeah, the next stage is to get some slightly happier looking animals in.

But, yeah, we’ve got a range of, actually they’re really cute little rabbits, guinea pigs, cats, dogs, that kind of thing. And, yeah, we’ve got a smiley monkey. He will be brought soon.

And a few other jollier ones to add to the mix. So all sorts for me. OK.

Sounds good. So how will people be able to get hold of it? So will it be able to be available, not only for companies and speech and language therapists and occupational therapists, visitors, whoever it is, will it be able to be purchased by individuals, like just a parent that wants it for their child? Yeah, I’m not, to be honest, because it’s still saved kind of early in what we’re doing. Like, that’s definitely an option that it could be sort of purchased, I guess, off the app stores and you could access it that way.

But, yeah, otherwise, I think if it was done through kind of NHS services or health and social care, it would be, you’d end up with like a QR code or some sort of, where you’d be able to just link in that way. So this is a programme about mental health and wellbeing, women’s radio. We’re always promoting wellbeing, and especially now with this uncertain world that we’re living in that’s constantly changing.

So how do you just be Rachel, where you’re not a mum, you’re not a wife, and it’s just you time? What do you do? I know you said you like to be quite outdoorsy. So what do you do for your take five? Because it’s really important that we, I know I’m really rubbish at it myself, but what do you do to take five to help you recharge your batteries? I really notice, actually, I take 60. I have to do… I like that one.

Yeah, I have to have about 60 minutes a day of exercise of quite a high intensity. That seems to get me like feeling good, sleeping well, being happy. Is that in the morning, the afternoon, or just when you can grab it? I’m relatively structured.

So usually, yeah, I do get up really early. So quite often that, like this morning, I’ve done a, because I couldn’t leave the house, the boys were asleep, but so I did a Zwift session on my turbo trainer in the garage and then a kind of online gym session. So that took an hour and 10 minutes or something.

But yeah, I love running. That’s so quick. You just put your shoes on and go out or… Do you know what? I’ve tried running, it just doesn’t do it for me.

I’m a bit older now, but it’s just for me, it’s dance. I just like the fun of dance, the music motivates me. But I have tried running.

And my sister, she’s very fit and she teaches classes and what have you, but even she finds running, she finds it hard. But jumping up and down and on cycles and all the rest of it, she’s great. But she finds that her stress buster, her happy place, if you like.

No, I just don’t like that thud, thud. I don’t like that feeling that you get in your body. What kind of dancing do you do? Well, when I was a kid, I used to do tap dancing.

I used to love that. I loved all the rhythms of it. And then I used to do modern.

Then I went, when the disco shows my age, age, I used to do disco. I liked doing exercise. I liked doing Zumba.

And then I liked doing things like learning, like the Charleston, the Samba and stuff like that. So I’m done so much lately, but I always make sure in the morning at nighttime, even if it’s only five minutes that I do something, I track. And what I do is as well, so I’m quite busy.

So when I park the car, I’ll park it on the fourth floor, the fifth floor. So I have to walk up and then walk back down again. And then I fit things into my routine of whatever it is that I’m doing.

Even like, say, for example, when you fold in the clothes after they’ve come out of the washing machine and they dry, you’re not very good at ironing. But what I do is I’ll take one pile up at a time. So that means I’ve got to go up and down the stairs and then I’ll get another small pile.

And that’s how I fit exercise in because I’m 63 now and I want to keep as fit and healthy as I possibly can. And I’ve shared this before. And the reason as well is, you know, obviously it’s great to be fit and healthy, but you worry about your children, like who’s going to look after them when you’re no longer around.

So I just want to be as fit and healthy for as long as I possibly can. It’s really good to try and mix it in, isn’t it, with what you’re doing in your everyday life? Yeah, definitely. Yeah, especially when you’re super busy.

Yeah. And, you know, I know people, you know, I like watching Netflix as well, but that’s just sitting down, isn’t it? So, but it’s just like you need to. Yeah.

And plus with my life and with Angelo, you can’t sit and watch a programme. I have to keep stopping and starting it because if you’re going into the kitchen or you might run outside or whatever it is, because he’s got no sense of danger, I have to sort of keep an eye on what’s happening. So, yeah.

So sometimes an hour’s programme will turn into two hours. Oh, but it’s it’s been really lovely talking to you. And yeah.

So if people, again, are interested in your crowdfunding, let’s see if we can get you some more money. Where can they find you? I know it’s going to be on the website, but are you one like social media or anything like that? No, I’m really rubbish at that kind of thing really at this stage. But if you go onto Crowd Thunder and type in, let’s get James his autism app in brackets number two because it’s our second one.

You should be able to find us there. Let’s get James his autism app or our autism app. Yeah, his autism app and in brackets number two.

Number two. OK, so and how much money are you looking to raise? Oh, I’m hoping to raise fifteen hundred pounds again because that would that would really help push us along a bit further. And it would kind of get match funded with with our grant through the Good Growth Fund in Cory’s house.

So it would sort of double it. But yeah, I mean, anything is is amazing because every bit can go straight to kind of buying a happy monkey or all pay people that are kind of giving us some feedback for their sort of type of thing. OK, so when you do launch it, I hope you’re going to keep in touch with me so I can keep updated with how are you getting on.

So I always like to know how people are getting on and how far they get and all the rest of it. And then I can help you publicize it as well on the charity website. I’d be happy to do that for you.

Oh, thanks. Thank you very much. That’s great.

Thank you. It’s been lovely talking to you. And I hope you have a great summer holiday and get rid of some of your excess energy that you’ve got with your 60 minutes.

Oh, thank you. Well, yeah, good luck to you. Yeah, thank you for everything that you’re doing.

Charities like yours and things do make such a big difference. Thank you very much. Thank you.

So just to remind you, if you want to check out the charity website, it’s www.annakennedyonline.com. If you want to follow me on social media, it’s at Anna Kennedy OBE on Twitter, Anna Kennedy Online on Facebook, at Anna Kennedy OBE on Instagram. And I’ve just started that other thing, which I forgot what it’s called now. Just to try and keep everything updated.

Threads, that’s it. Threads. I’ve started threads.

So, yes, it’s all about raising awareness and acceptance. So, everyone, please do the best you can just to keep going. I know it’s tough, but we will get there in the end.

So, thank you very much, everyone, and goodbye.