[Speaker 1] (0:01 – 6:38)
Hello, this is Anna Kennedy, and we’re talking all things autism, being a busy bee as usual and obviously planning for the year. Lots going on within the charity. We’re having a meeting as well tomorrow to talk about fundraising, speaking to so many smaller charities that are really struggling, trying to get funds to help them to keep going.

So if you can help a smaller charity, please do every pound counts. I’ve got a new survey that’s out at the minute because there’s a lot of families that are finding it difficult to get medication. So whether it’s for autism, whether it’s for ADHD, whether it’s for epilepsy.

What’s happening is they are rationing their medicines. I know one particular person that travels something like three hours to try and get their medication. So if you can fill out the forms, it’s all on the charity website.

There’s seven to 10 questions. So one for the individual as in who is actually taking the medication, who are neurodiverse. And then obviously parent carer that’s living with the child or adult.

Please fill out yours if you’ve used an alternative as well, you know, and how is that impacted on your health. So we want to get out as many surveys as possible. And then I will feed back on what the results.

And I have been speaking to somebody that actually was at a meeting on January the 16th about what’s happening with medication. I can’t divulge too much at this stage. And just to remind you as well about our workshops, the charity workshops, they’re free, obviously.

So my husband Sean’s just completed one and we’ve got more. So keep checking on the charity website for the workshops. We’ve got one on pick coming up soon and they will be hopefully now every month.

And they’re free and circulate with friends and family that might be struggling. Also, to remind you about Awesomes Got Talent, it’s still open. We’re still looking for children and adults who are talented singers and magicians.

They might be drummers. They might play the acoustic guitar. They might play the electric guitar.

They can be a band. They can be individuals. They might be into opera.

We want to see all. We’ve had quite a few already, but it’s closing date is not until the end of May. So whether you live in the UK or whether you live overseas, we want to see your talent.

Obviously, Autism Hero Awards, as I’ve said, is not going to be until 2025. But the nominations are now open and it will be happening hopefully February, March. But the nominations, if you want to send in an entry for someone that goes the extra mile, will be closing later in the year.

So one of our guests, Kelly, knows what it’s like to be a judge. It’s really hard to choose the finalists. But there’s various different categories and all the information is on the charity website.

If you want to be one of our guests on Women’s Radio Talking All Things Autism, promoting wellbeing and looking after our own mental health, please do contact me or contact Women’s Radio Station. Again, all the information is on the charity website and please contact me via the contact form that we have there. We can allocate a date.

You know, it’s very, very easy chat. Just talk about anything to do with autism, whether it’s to do with mental health, wellbeing. You might be in a school.

You might be talking about social care, whatever it is that you want to talk about. You might have written a book. I’ve had so many people that have been on the radio.

I think I’ve been doing it for about five years now. I can’t remember. But I enjoy chatting to everybody.

And I’m looking forward to chatting to my guests today. So one of my guests is one of my charity champions and also been on Women’s Radio before. And that’s the lovely Kelly, who is the founder of Born Anxious.

And my second guest is Corinne. And she’s a family of one neurodivergent. And she has sons that are autistic.

And we’re going to be talking about quite a tough topic called an eating disorder called ARFID. But before we talk about ARFID, I want to welcome my guests. And I want them to chat a little bit about themselves before they got into autism.

So welcome Kelly and welcome Corinne. Hi Anna. Hello.

Hello. So obviously I chatted to you recently on Gateway Radio, which is something else that I do. All things autism and Essex with the wonderful Aston.

So first of all, I’m going to go over to you, Kelly. So tell everyone a little bit about who is Kelly. OK, so there’s the question, Anna.

Who am I? So aside from obviously being a very proud charity champion for you and maker of autism awareness clothing, Born Anxious. I’m also a mum too.

I have people, not a lot of people know that I actually have three children, not just one. And I am at the wrong side of 40 now. But, you know, me in general, I love people.

I like fashion. I like socializing. I like sleep and many things.

So I used to have a career of fostering. I was also a child who fostered. So my house growing up was very much like home and away.

There were lots of children. My parents fostered a sibling group of six. And then there was me and my brother.

How was that for you? Was that obviously a noisy household? Well, it’s a very busy, noisy house.

And then when I met Brendan, Brendan and I met again at 18 and moved in and got our own place together. I used to cook these huge dinners because I was obviously, you know, a young carer, I suppose, a child who fostered. You know, in my late teens, I would look after all the children so my parents could go and get a break.

And I would do these big dinners. So Brendan used to say, we’ve got people coming for dinner because I would make spaghetti bolognese for 10 people. Yes, a bit of a feeder.

But I love people. I like watching trashy TV. Just in general, quite sociable, which my husband doesn’t like.

So we don’t go anywhere quickly. I talk to everybody. You know, I see life as being a bit of a reframe on life in recent years.

Sadly, I lost my best friend. I now share the care of my children. So I think you have to find the joy, don’t you, and make the memories and enjoy the moment, living the moment more.

Most definitely, especially with everything that’s going on in the world at the minute, just living it day by day. So over to you, Corinne.

[Speaker 2] (6:38 – 8:26)
Who is Corinne? Who is Corinne? That is a very hard question to answer.

Well, I’m a mum of three young boys, very close in age, six, nearly five and three. I grew up in a very neurodivergent household. My one brother was diagnosed with Aspergis when they used to diagnose Aspergis.

And I have another brother that has got ADHD, autism and learning disability. And I think growing up, I knew a lot about autism, but that wasn’t the case until I had my own children. I then, from having my own children, started my own journey, which is really something that I never really looked into or thought about until I’d say about two years ago in the lovely age of 28.

And I’m now on my own neurodivergent journey to hopefully get a diagnosis soon, but we know how long that’s going to take. And I’m very open about that it’s never too late to have that diagnosis and know yourself. I love music.

I love to dance. I love the theatre. I’m very creative in a very movement way.

I prefer getting up and doing things instead of sitting down. I’m not very intellectual, I’d say. And I met Luke off online dating.

And here we are now for your kids later. We’ve been together eight years and I am very passionate about autism acceptance. Can you see yourself?

[Speaker 1] (8:27 – 8:30)
I was just going to say, can you see some of the traits of yourself in your kid?

[Speaker 2] (8:33 – 10:17)
100%. I think in a way, because my five-year-old, we think he’s got pathological demand avoidance, which is a profile on the autism spectrum. And I see a lot of traits in myself, which I don’t really get spoke about enough because there are PDA adults out there.

And I definitely think I’m one of them. There’s certain traits like I do stim, and I didn’t realise that with stims until obviously having my children, social anxiety, rejection sensitivity. And yeah, it’s a mixture of things, really.

It’s very hard to pinpoint where I realised. What was school like for you? What was school like?

I hated it. I was that type of female that would just fit in. I’d just follow everyone.

I always felt like I was sitting outside the circle instead of in the circle. But then my friends would probably have said, oh, no, you were part of the circle, if that made sense. But it really felt like I could feel that I weren’t the same as them.

And I bottled up a lot of my likes. I dress like them. I used to do the same hair as them.

I felt like I needed to be like other people to fit in, which is something that I’m really passionate about now, actually. And a lot of what I do is that whole dopamine dressing and being who you are and wearing what you want to do. And I’d say, gosh, I’m rambling on, but I’d say for the first time in my whole life for the past year, I have actually wore clothes that I like.

[Speaker 1] (10:19 – 10:22)
So what are the clothes that you like? What does that mean?

[Speaker 2] (10:24 – 11:16)
Just for me, clothes are expression of how I’m feeling on that day, but also an expression of me as a person. So I like, you know, my dungarees, I like, I like beige colours, but I like them to be really baggy. I like things that are a bit sometimes I’ll just rock out in a print, just a random, like crazy print because I feel like it.

And things like, you know, my hair, my hair is very curly. A lot of people know me for that. I straightened my hair the whole of my life, hated it.

And I’m now realizing that that is me and that’s my identity. And I feel I’m very proud actually to be where I am now. I’m very, you know, and I feel like every other woman that is neurodivergent, maybe feeling like they are struggling to express themselves just to let them know that they’re not alone and they can.

[Speaker 1] (11:16 – 20:22)
OK, so we’ve just been talking about clothes, Kelly, and obviously you’ve got born anxious. So from people who don’t know what born anxious is, how did that come about? OK, so born anxious spreads acceptance and awareness messages for numerous things, mainly autism.

And we are online. We ship worldwide and we make everything by hand. We remove the labels by hand.

We use super soft and organic fabrics. And that is a celebration really of our lived experience to where we are now. We’ve been building on the collection.

So it started with be kind, I’m autistic. And basically it was a way that we could communicate with the world because we had quite a lot going on and we faced quite a lot of preset ideas and judgments really, especially when Oscar was smaller. So it was our voice.

It was a visual cue, I suppose, to be kind and think about other things going on. We have tapped into, obviously, that we’re known for quite a famous design of our school, which is be a nice human end, which I think is a very generic one. So we work alongside a designer called Amy Steel and her tag is one tough mother.

She does also have her own shop. So what we like to do, I think our online presence is about all working together collaboratively to improve experiences of people that have autism and their families. And it’s about kindness.

And we donate to charities, obviously, to your charity and a few others. Mind, we donate to, we’re also connected to the Kent Autistic Trust. And, you know, we’re very pro small charities and I think that’s because you can see the results in the community.

We’re very passionate about using local people to help us make our clothes as well, not mass production, remain planet friendly. OK, so we’re going to talk about our food and then we can talk about the collection a bit later on. So we spoke briefly about our food when you spoke to me on Gateway Radio.

It’s an eating disorder. 49% of autistic children diagnosed with eating disorders are not struggling with difficulty in feeding. They need to be more understanding, less judgment.

Most of all, more services for children and families managing this disorder. So what is our food for someone that hasn’t heard of it before? And how did you discover that Oscar had our food?

OK, so our food is is quite complex because it’s very much like an autism assessment. You have to hit certain markers for certain traits of it, which is very hard to diagnose in small children when they’re still in the weaning stages. So basically what happens mentally in the brain is children get stuck in the fight flight scenario of, you know, babies go from being fed to having to explore food themselves.

And that isn’t always a simple transition for all children, especially if they have neurodiversity or they may have had complex feeding to begin with, like tube fed or they may have had a choking incident or some kind of trauma to do with food. So normally children will mirror adults around them. They become curious about food and children want more adults are eating.

And that’s how they explore it because their brain tells them that you are eating it and that is safe and then they want it. Children with armpit don’t do that. So they get stuck in in that stage.

And it is avoid it. And if it stands for avoidant restrictive food intake disorder. Yeah.

Say it again. It’s so it’s avoidant restrictive. Yeah.

Food intake disorder. It is listed in the manual of mental health disorders in the DSM five. So it is a diagnosis on its own in its own right.

It does not only affect children with autism. It affects between one five percent of all people, children and adults. It was commonly known or associated to a different disorder called picky eating.

But our food is actually more serious than that. It is a fear and avoidance of all food and it affects all food groups. You get linked to anxiety.

Yes, because it’s a fear. There’s a fear element of it. Yes.

So it’s linked to anxiety and that anxiety is about food. It’s about all food groups and it affects every choice that you make about food. So it’s very I feel very complicated and something that you wouldn’t want to misdiagnose, you know, there are deaths associated with our food and much like autism, a lot of the elements of our food are very invisible.

It does cause internal damage on the organs. It does present in many ways like anorexia, you know, visibly. But our food is not it’s not about body dysmorphic images or anything.

It’s not about weight loss. Is it associated with sensory difficulties? Because obviously a lot of children with autism have difficulty with smells, taste, touch, all the rest of it.

Do you think that might exacerbate it a little bit more? I think so. And I was doing some research because obviously we’re not medical experts.

We only know our own lived experience. But because my child is diagnosed with it, I wanted to find out a little bit more about it. And as I was reading, it was it states that forty nine percent of all children that have autism do have difficulties with food because of sensory.

Yeah. OK, I thought that might be the case. Yeah.

So the avoidant restrictive side of it, I think, would be determined by what that child sensory profile is. So many children with AFRID, some children with AFRID will only eat spicy foods. Some people, you know, will have dry beige foods.

So the avoidant and restrictive element of it is there, but it is led by what your sensory diet is for that individual. OK, so how can you treat AFRID and how long does it take? Obviously, is it the individual?

No, there’s no treatment for AFRID. It is that there are steps you can take and there is a food journey. So you would I’m in the very early stages of this, Anna, and I’ve only had one session.

But it’s a 30 step tool that you can use to undo, I suppose, some of those messages that are very embedded in the brain about food and fear. And I think it’s very difficult when you have children that have a learning disability to be able to have because it relies on a two way communication. So I think depending on whether or not you are dealing with a child that has co-morbid diagnosis that may, I suppose, have a barrier to their understanding.

So for us with AFRID, his AFRID is very severe. So our approach is to keep calm and provide choice. And the calmer he is, the more likely he is to try some food, different food.

But it is so Oscar is closely monitored by the Evelina hospital in London and he will have yearly checks on his iron levels and visceral facts and things like that. But there are lots of different courses that parents can go on with their child depending on, I think, the level of understanding that’s there. Some embedded messages can be undone, but there’s no quick fix.

It’s a long road. Yeah, I was just reading about the health risks of AFRID. It says weight loss or being severely underweight, nutritional deficiency, anemia or iron deficiency and malnutrition, growth failure, stunted growth or falling off growth curves for weight and height, fatigue or weakness, dry nails and hair, hair loss, trouble concentrating.

That was the thing I was thinking about, trouble concentrating and reduction in bone density. So I’m going over to you, Corinne, because I know that you can’t stay with us for the whole interview. Talk a little bit about how it affects your children and when did you first discover?

So does it affect all three of them or just one of the children?

[Speaker 2] (20:24 – 22:46)
At the moment, I would say two. But I don’t know. My three-year-old has, in fact, he’s very, very restrictive compared to the other two.

But as it affects us in a way where Caleb is beige, is beige diet through and through, and that all consists of chicken nuggets, smiley faces, toast, things that are crunchy, eats pizza crusts and pepperoni on top of a pizza, but it has to be highly cooked. But it’s got to the point with us now where Caleb has always suffered with his eye levels and has to take supplements now three times a day. They’ve always been quite live and they fluctuate with obviously when he’s growing and stuff, but it seems to be getting worse.

Unfortunately, the older is getting, and I think that is because he’s well more aware of kind of his own sensory diet in a way, like he understands what he wants. And yeah, it’s getting difficult. We have looked into ARFID.

We’ve mentioned it to pediatricia. We’ve spoke to other specialists. It’s a very hard diagnosis to get, especially where I am up north.

And I think the more that it’s getting spoken about, it’s kind of slowly each area is getting their own… Oh, gosh. I think each area is eating disorder.

Clinics are getting more understanding about it. But to get someone to listen is really difficult because I think a lot of, I’d say, professionals would still pull it in, you know, it’s picking it in. It’s sensory.

They’re just being fussy and it’s more than that because you, and I’m sure Kelly, Kelly and I agree, is you physically live their, you see the fear, you know, and I’m at that point now where, as long as my kids are eating, I will get them what they’re happy and comfortable with. But I definitely feel that there needs to be more awareness about it.

[Speaker 1] (22:47 – 22:56)
Okay. It sounds like it definitely. So what happens, like, for example, when they go to school and like the break times and lunch times, do you have to take, send food in or how does that work?

[Speaker 2] (22:57 – 23:12)
So for Caleb, he has a packed lunch because he just will not, he just won’t try the food. So first we do the same one every day. So he knows what he’s expecting as well.

[Speaker 1] (23:13 – 23:14)
Who put in his packed lunch?

[Speaker 2] (23:15 – 24:02)
Bread, which he only eats the crust of. He doesn’t have, so Caleb doesn’t eat sauce at all. There’s no, there’s no flavor in his diet.

It’s all beigey. His crisps, which is the one brand that he’ll eat, you know, he’ll eat them to the come out of his ears. They’re the only thing he’ll eat.

And a few snacks, breadsticks. But again, they’re all beige and bland, bland flavors. And yeah, it’s, you know, it’s impacted him.

He does get the fatigue a lot. As Kelly was saying, you know, obviously he has the low iron, which is, you know, which is, this is what happens, you know, when our kids have these restrictive diets and have our fit, it’s really difficult.

[Speaker 1] (24:04 – 24:40)
Have you tried something like, because I know, I remember when we set up Hillington Manor School all those years ago, we used to have children that were very, you know, as you talked about beige foods and so was my, both my sons. And they used to work on a program where you can have your breadstick, for example, if you smell the chicken nugget. And then they’ll keep doing that.

And then you can have your breadstick if you lick the chicken nugget and things like that until they actually had a taste of it. But it could take weeks to get to that sort of stage. Is that something that you’ve tried?

We have. Go on, Kelly.

[Speaker 2] (24:40 – 25:14)
No, go on, you guys. No, we have, we have. And he will, he will sniff.

And this is great because we weren’t even at that point before, you know, it would just be, you know, get it away from the eyes. You know, he sniffs things. But you can still see in his face, he’s still very anxious around it.

And, you know, it’s a hard one. It is. It’s a difficult one, really.

Like you, Kelly.

[Speaker 1] (25:16 – 26:14)
Yeah. Ours is a non-starter, really, because Oscar only eats crackers and bread. So he’ll eat a whole loaf of bread in the morning before he goes to school.

And then he won’t probably eat anything at school until he comes home again. If he does get hungry, he’ll have some more bread, maybe. And he’ll sip water during the day.

Right. But for probably about four years, he definitely wouldn’t eat anything at school. So it’s very important to us to make sure that he does eat and drink before he leaves in the morning, which means we’re mostly late on arrival, which they’re fine with.

And with Oscar, he wouldn’t be enticed by smelling anything. He’d rather not have what you’re going to offer him. Okay.

If you said sniff that and you can have that, he wouldn’t want what you were offering him. So, yeah. I was going to say, Corin, does it impact on, say, for example, things like toileting?

[Speaker 2] (26:15 – 26:52)
Yeah. So Caleb has, bless him, he struggles really bad with constipation. That is another medication that he’s on now to try and help his bowel movements.

Yeah. I’m pretty sure, obviously Kelly will know, because she knows more about Arthur than me, but it does affect their toileting as well. And Caleb, he drinks a lot as well, so he urinates a lot, which is also another part of it, I think.

You know, it’s really hard to explain, actually.

[Speaker 1] (26:52 – 27:30)
If you’re a learning curve, let’s just say about Arthur. It’s all new to you. I am, it’s new, yeah.

And they’re all different from each other. So, yeah. So I know you’ve got to go very soon because you’ve got to pick up the children, as mums do.

So I’m going to be continuing talking to Kelly about Arthur and also about various other things that Kelly’s doing with Born Anxious and also some work with Joe, who’s one of our charity patrons. So we can talk a little bit about that. So I just wanted to say, is there anything else that you wanted to share, Corin, before you went off to pick the children up?

[Speaker 2] (27:32 – 27:58)
Just that if any parents are out there and really struggling with their children’s, you know, with what they’re eating, just research. And obviously people are more than welcome to speak to me and Kelly and, you know, get some advice from us from our lived experiences and also that the range is great. And you should all go and check it out.

[Speaker 1] (28:00 – 29:35)
All right. Well, thank you, Corin. So take care and I’m sure we’ll speak again soon and best wishes to the children and on your journey.

So Kelly, talk to me about the range that you’ve created through Born Anxious about Carpet or even Carpet. Okay. So I’ve known Corin for a few years now, just through I think mutual lived experiences with the boys and caught up with her online and really a lot of what she’s going through really resonated with me with my journey.

So we decided to obviously, we’ve had experiences with Oscar that have sort of accelerated his diagnosis because we ended up in hospital for a poorly. And her journey is that she’s not diagnosed, which I, you know, we lived for many years. So I feel what they’re going through.

So we decided to celebrate I think how hard the children work to raise awareness and to shed some guilt really because you do, you know, when your child does not eat anything, it does carry a level of guilt and, you know, how Corin was struggling to express just earlier in the interview how you put that into words. It’s kind of that all the time, you know, you don’t really know why they don’t eat. You just know they don’t.

And you know that some things that people say, silly things like really would eat if he was hungry.

[Speaker 2] (29:36 – 29:36)
Yeah.

[Speaker 1] (29:37 – 34:30)
So do you ever get criticized from people on the outside who haven’t got a clue what it’s all about? Yeah. And I think it’s like anything, isn’t it?

It’s always more complex than it seems. You know, I’m saying my son only eats bread and crackers and someone might sort of think, well, I bet he’d eat a McDonald’s if he put one down. The facts are he won’t.

I think that’s why it’s so important to have our figures listed in the DSM-5 because it is not a trait of autism. It is a mental health disorder. It is as serious as anorexia.

And there’s always a focus on our kids, I think, to work a bit harder when actually they’re already working flat out as hard as they can. And you know, for children like Oscar, he can’t express to me what that feels like. He’s always eaten in that way.

His body works in that way. You know, some children do suffer with constipation and deficiencies. Oscar doesn’t.

His levels are okay. And you know, it doesn’t affect him like that. But when he does starve himself, he will lose his vision or he won’t be able to walk.

So his body shuts down rather than surviving in a deficient way. But that’s how his body reacts. So when’s it to the stage where you’re thinking, right, he’s not eaten very much now, as in when do you take him to the hospital?

Because obviously you get very anxious. You monitor him all the time. And when he thinks I’ll get to the stage where he thinks, right, we need some help.

Well, I think it’s like anything, isn’t it? When your children are poorly, you are anxious and they pick up on that. And so Arthur carries the level of that all the time.

But it’s so true. When your children are really very seriously poorly, you do know. So for, you know, an average healthy child could probably go about 10 days without eating any actual food because they have enough reserved fat on their organs.

You know, it’s not ideal, but you know, you could survive. And I think an adult is two weeks. So for children with our food, because we don’t really know what’s going on inside.

And we don’t really know what they’re deficient in. And it would really vary. But, you know, in Oscar’s case, he wouldn’t eat or we were giving him water, but he would not eat anything.

And by day five, he could not stand. And we took him. So basically we put him to bed on the Saturday night.

And I was very worried. I was checking him in the night, but he did still drink his milk that night. When he woke up, his presentation was clearly visibly very, very different.

He was very vacant. He could not walk. He was, you know, to me, he, he, he couldn’t see.

He, he was not really responding. He was awake, but not like a zombie. And we put him straight in the car and took him straight to casualty because that’s the only thing in my mind that we needed to do.

And we were told that everything was shutting down. So you can’t really guess it with our thing. You can’t risk it because the strain on the inside of your body is invisible.

You know, a little boy’s just lost his life sadly because he had a heart attack. So if, you know, if their presentation changes anyway, if your child is not verbal and the presentation changes with their health and you’re worried, you always go straight to casualty. You never risk it.

So that’s what we did. And he was accelerated for being seen at St. Thomas’s Evelina and he was seen by a neuroscientist there. And he explained about, you know, he wasn’t able to diagnose ARFID, but he was able to refer us on to somebody, Victoria Ellingsworth, the nurse that we have.

And within half an hour, she was diagnosed with ARFID. But it’s getting there, isn’t it? It’s opening those doors.

It’s hammering on the doors until you get to the right one. Right. Okay.

So we were talking about the range that you have. So what sort of messages are on there? Okay.

So between Corinne and I, she shared her experiences. For her boys, I’ve shared mine and we’ve come up with four designs. They’re a celebration.

They’re label free. They’re organic. And they’re a celebration really of not hiding away from safe foods.

I think when you get into situations like mine, if my child was to eat chicken nuggets, whether or not they’re, you know, a choice, a food choice for your children, I would celebrate. If Oscar had nuggets, I’d give them to him every single day. So they’re nugs and hugs, nug life.

I like, I love bread and I only like two people, which is Oscar’s design. And there’s, I want to say, I can’t remember. I’ve gone blank.

It’s nugs and hugs. It’s nug life. It’s a McDonald’s one.

[Speaker 2] (34:30 – 34:31)
Oh yeah.

[Speaker 1] (34:31 – 53:00)
This is my Mecca. Obviously we’re using the word Mecca as accountable now. And it isn’t a religion in any religious context.

And I think the reason why a lot of children with ARFID, particularly autistic children who have eaten preferences, like McDonald’s is a sensory thing. Because I think if you, you know, if you have McDonald’s chips today or tomorrow, they’re going to look the same. They come in the same packet.

And all their food looks the same and it’s a safe, predictable choice, isn’t it? So it’s not ideal for health. But I think when you’re deficient in fats, that’s okay.

And yeah, so we’ve celebrated the four designs, you know, there’s one for each of Corinne’s children in their sensory presentation. One of her lads loves the chips. The other two is very cuddly and he likes nuggets.

And then the nug life one is Caleb and nuggets are his life. And that’s his safe food. Where can they get them from?

So you can buy them on the website from today. They are straight away. You go on bornactress.co.uk. They’re there in your face. And we are donating to you. We also have connected to SEEDS, which is an eating disorder support service in the UK. They haven’t got back to us yet.

But we are saving some donation for them when they make contact. So we’ve got to pay back in, I think. So we’re really excited about it.

It is a lot of fun. It’s to remove guilt. It’s to remove shame.

It’s to celebrate safe foods. It’s to celebrate children that don’t eat, eating what they want to eat. And open up a conversation, I think.

Yeah, exactly. Because there’s nowhere. I probably think that they’re on their own.

No one else has gone through it. They think probably, oh, I’m doing something wrong. It’s my fault.

It affects everything. It affects socially. It affects how you socialise with your family.

We used to avoid family gatherings because I was sick of people judging him. And trying to give him cakes and turning their nose up because their kid eats curry and all the rest of it. Because there’s so much more to it, I think the mind’s eye doesn’t understand why a small child won’t eat a biscuit.

And we don’t, I think, we overlook how sociable eating is. So you kind of avoid things like that. And then we’ve got a family photo of us last year on holiday.

We found a restaurant in a shopping centre that was divided out by those cloth things. The restaurant’s sort of like outside inside and it’s got a fence, but it’s like cloth. My family are in the restaurant eating and I’m outside with Oscar and his lovely eating.

Because to even go in there, it’s just a place of threat. There’s too many smells and stuff. No, you can’t do work for you as a family.

So I believe just the chef is supporting the collection. She’s obviously supported a couple of our charity events and we’re going to be giving some more work with her. So she’s also supporting your collection because she can associate Vanessa to soon.

Is that right? Yes. Yes.

So she’s been great. She’s shared the collection, kind of said, where am I, Arford Warriors? Where are you at?

And I think she’s a lived experience of having quite severe Arford when she was younger and she knows what it feels like. And she’s educated herself about food and she can work, that’s the thing, isn’t it, with Arford. I think when you’re younger, it owns you.

But as you get older, because there are a lot of adults with Arford as well that are able to manage it better. So, you know, the diagnosis of Arford isn’t going anywhere. I think your tolerances grow, your taste change, your education changes about food.

But she’s been very supportive of the collection and she just said, you know, it is a conversation that people should be having a lot. And there needs to be, I think, people that live it that are able to have that conversation. You know, maybe somewhere there’s a mum that’s where I was three years ago thinking, this is crazy.

I’ve got a handbag full of bread. Okay, so let’s talk about you being and your thoughts and feelings on being a parent of a SEND child. So obviously I know you’ve got strong feelings about inclusion, celebrating all.

So talk to me a little bit about your journey with Doska. Okay, so I feel a little bit like I’m going from, you know, I do advocate for others a lot. And if I believe in something, I don’t back down.

But I have had my own battles with Oskar really to navigate him to make sure that he gets what he’s entitled to and all of that. And some of those battles are ongoing. And I do feel like I’m smashing my head against the wall sometimes.

And I don’t want to share all of that because actually it’s not productive, is it? You know, you can’t go online and say, oh, there’s no hope, it’s all broken, it’s terrible, it’s this. Because that doesn’t help someone else.

So I do like to try and have positive reframes on everything. Because I think it will all be all right in the end. And at the end of the day, if it’s not all right yet and it’s not the end, that’s what I do think.

And I’m not saying it’s all roses because it isn’t. But I think you do have to have an element of being a realistic person. You can’t expect everyone to put you on a pedestal.

You know, I think the bigger picture is, there isn’t enough of anything to go around for everyone, anywhere. So if you’re getting a little bit of something, just have a little bit of gratitude about it, I think. I think we need to be really grateful where we live in the world and what’s available to us.

So I think have some perspective. Just, you know, don’t show vote, you know, because there’s always going to be someone who’s not got as much as you in terms of support and things like that. And if you do navigate a service and you learn something, pass it on.

Someone else, you know. I think it’s important to go around for everyone so everyone should be networking together. You shouldn’t be precious about what you do.

So you’ve been doing some work with Jo. So Jo was one of our first charity patrons and she’s amazing from where she’s come to where she is now. So talk to me a little bit about your journey with Jo and what you’ve been doing.

Yeah, so obviously I get on very, very well with Jo and I’ve been a guest judge with Jo a couple of times. So, you know, I’ve always known Jo and got to know her, but now she’s my boss. So Jo is an absolute genius and she’s created a training course for autistic people and neurodivergent people.

And it’s through Health Education England and it is an autism peer support worker course. And we are basically, we are training people for 15 weeks. I’m one of the trainers.

I had to do the course myself and pass before I could become a trainer. And we work in a group of four. So you normally have two trainers, one tech assistant and one classroom assistant.

Jo is the lead. So if there’s any issues, I rarely, I mean, it’s sad, but I rarely get to be on a cohort with Jo anymore because she’s more in a lead position. Right.

But it’s lovely. And, you know, you just get to share my lived experience with different groups of people every week. And her content is just absolutely fantastic.

You know what Jo’s like. She’s a real one for detail and communicating it in a way that people understand. And the whole thing is just such a movement, I think, to reframe services.

You know, we’ve got people from people really high up in charities. We’ve got people working for the NHS. We’ve got people that want to be peer support workers in the community all doing this course, giving us reflective feedbacks halfway in at the end.

And we work as a team to try and make sure that they’re competent in the framework we’re given. There’s a framework they have to complete to pass. And it’s just lovely because every week, you know, we meet these people and they’re giving you such amazing lived experiences they’ve had.

And speaking about how they would advocate for autistic people. And just think, all of these people are out in the community doing great work. It makes me feel better, like the amount of applicants that are out there working collaboratively towards the same goal, which is to reframe everything really for autistic people and their families.

Is this a specific area? No. It’s across the UK.

See, it’s on Zoom. It’s across the UK. And then I’ve just met a couple of people actually that were really amazing.

And they worked for Barnardo’s. And what Barnardo’s have done is they’ve carved out a job role for families that are on the way to NIST. OK. So these are called family navigators.

And they work with families for a set amount of weeks. And they help them fill out forms and help signpost them. Because the waiting lists can be really big for diagnosis depending on where you are in the country.

And so what Barnardo’s have done is they recruited parent carers that already have their diagnosis to support the people that are waiting for one. Yeah, because it can be quite overwhelming looking at these spots. And you look at them and you just think, well, what are they trying to say?

What are they asking me? I don’t quite understand. Yeah, I just think the whole reframe’s needed of how our children monitored and assessed.

I found that Oscar’s DLA plane, because we had to get a whole brand new one done. Because when he had his neuroscience appointment, he came out with like four different diagnoses. So we had to fill out a new one.

And I just think the whole thing’s very ableist, isn’t it? You just got to list down how many times you find things difficult, which is OK in conversation. But if you’re in the middle of finding something really difficult, then that carries a lot of emotional stress.

And then you have to document it down. They want you to write down how many times your child is struggling with something. And it can be really heavy on people.

So it’s nice to think that people have help with it. And it’s like the ones that have managed to get through the other side and can give hope. They go back and they help the ones that get a little bit lost and they help them.

And to me, that’s what it’s all about, isn’t it? It’s about helping other people working together on stuff to make the bigger changes, I think, really. And I’ve had people that have really, really helped me even this year with Oscar’s DLA form.

And I didn’t know that anywhere white on the paper that you were allowed to write on. I didn’t know that. Someone helped me with that.

I’ve got loads more on the paper because I could write on anywhere that was blank. So there’s so many small things that people can help you that make hard things easier. And the thing is, if you don’t ask, you don’t get a lot of people worried about asking because they think the person’s going to think that they’re stupid or whatever it is.

But it’s just like you have to ask. Don’t be afraid to ask because there’s always somebody out there that is willing to support you. So another group that you’re supporting is Inclusive Sports.

So what’s that all about? What do they do? Yes, I’m really, really excited to partner with Inclusive Sports.

So they’re mainly intent at the moment, but I think they are planning on franchising across the UK. And so they work in lots of places. So they work in the community.

They work in schools. They work alongside social services. They work in old people’s homes.

And basically their ethos is that everybody, regardless of background or how much money you have available to you, that everyone has a chance to be active in an inclusive way that meets you where your needs are. So it isn’t about outlining the elite. It isn’t about going for people that are high achievers.

It’s about everybody who is able to be active. They can seek some way of being active in their communities. And they are for multiple disabilities.

So they have tennis. They have dance. They have football.

And it’s all adapted, reasonable adjustments. That’s good. They have a football team.

So they have a 16 plus disability football team that have entered a league. And it’s about celebrating skills and making reasonable adjustments. So I’m really pleased to be partnering with them.

I think that they’re going to be massive. I think that, you know, they work a lot with community groups. They have a lot for, they put on a lot of camps in the summer for children that have got, you know, low income families.

Needs a lot more of that going on. We definitely need a lot more of that going on. Yeah.

And it’s about everyone being included. You know, Oscar attended some of their sessions. They’re not for children with autism, but he could go along with his PA.

And it’s about getting everyone in the space and then making sure that they’re supported to be included, you know, regardless of your skills or your background. It’s about everyone being healthy and active and included. And they provided part lunches.

You know, they got together with other local businesses and provided healthy pack lunches for the children and things like that. And that ran all summer. And I think, you know, after COVID, community really needed that for children to get out and about and socialise again in a healthy, safe way.

Yeah, I think COVID has a lot to answer for COVID. It’s just, it’s really impacted on a lot of people’s lives and groups and what have you. So something different that you’ve got in your shop are the swear bears.

What’s that? Okay, so I absolutely love swearing. You’re swearing on the radio, please.

No, I absolutely love swearing. And I think the reason why I love swearing and I don’t swear in front of my children is that, well, I’m right under my breath. But I think it is the most expressive form of language.

And I think adults need to maybe not take life so seriously sometimes. You know, we all have an inner child and we’re not care, you know, we’re not care, well, we are carers 24 seven, but we’re all so us. We’ve only been on the planet once with us.

And I like to have a bit of a giggle. So Amy and I created some swear bears, they’re adult therapy bears, where you can give somebody anonymously, if you like, a little message, or send it to your best friend to make them laugh or collect them. And they’re sensory bears, like all the eyes and everything, we’re all saying there’s no choking hazards.

There’s no labels. And they’re wearing a little t-shirt with a little swear word on there. They’re not for children.

They’re only for adults. And it’s just a little bit of fun. And I think we do need that side of it in life.

We do need that. You know, you made me chuckle, you sent me a bear. It’s got something nice written on there, but you know, it comes from a good place.

It’s about positively swearing to express yourself, not about insulting people. So I’ve sold quite a lot of them. Yeah, we sold quite a few.

And there’s only one design that’s really popular at the moment. And that, yeah, so. Okay.

There was something else in the market. Yes, something else you’ve got is fathering autism because there’s not a lot of fathers out there that talk about their experiences. There seems to be more moms, although the fathers are, you know, they’re starting to make waves as well.

So what’s that all about, born anxious and fathering autism collaborating? Okay, so we collaborated with fathering autism a couple of years ago. Abby is an autistic teenager living in America and Asa and Stella, her parents are both full-time parents of Abby and they document her life on their YouTube channel, which is hugely successful.

And the reason why I resonated with them is because they are very, although there’s a lot of difference between what we were doing in the UK, what they were doing in America, a lot of their therapies, ABA-led. It’s, I like how they are as a family because they’re very, she’s able to just choose. Like, I like that for Oscar.

You know, I don’t give him direct orders. I let him choose. So they’re very led by, you know, if she wants to go out in the golf cart and it’s getting dark, that’s what they do.

If she wants to go swimming, that’s what they do, you know, very choice led. And she’s become a young lady now. You know, we collaborated when she was in her late teens and she’s become a young lady now, but she loved RB.

Yeah, because they, how I met them was that actually they just came on my website and bought her something. Oh, okay. Yeah, because she liked the design.

So we ended up making one. So we, they liked the autism army design and they also liked the being nice human. So we made her her own, which is Abby squad on a backpack and they love that.

And we donate to a Catholic charity that she’s part of called Camp I Am Special. And that is a holiday club for autistic late teens, young adults. And they can go there and it’s like short breaks.

They can go there and have a break. And we donate from the sales from that, we donate to there. And that’s a charity in America.

So it’s quite nice to think that our messages are becoming universal because we do ship worldwide. Our messages are becoming quite universal. A big YouTuber in America has decided that he liked our design and he went on the website and bought one.

I thought that was great.

[Speaker 2] (53:01 – 53:01)
Yeah.

[Speaker 1] (53:01 – 59:12)
And it’s nice to do that sometimes, isn’t it? And it’s also still nice to keep your feet on the ground and keep your grassroots as well. So it’s a little bit, it’s preference, isn’t it?

Yeah. So I was just going to say, because we’re a women’s radio station, we’re always promoting wellbeing and looking after our mental health. What do you do for your own wellbeing?

And what do you do for your own mental health? Okay. So I always give myself a little MOT for my mental health.

And I’m very much, if I feel it, I’m going to talk about it. And I’m very honest and open about it. And, you know, our family do sit around and say, what’s going right?

What’s going wrong? How can we all fix it? So it’s always a bit of a group effort.

And I always like to check in with friends and things like that. And also designing swear bears helps me. But, you know, the reality is you’re not always going to get on with everyone and you are going to come across some people that want to challenge you or they don’t like you.

You know, I don’t like that. I’ve recently come across someone who definitely does not like me. And I’ve not had that in a long time, because I’m not saying that everyone does normally like me, but I’m not like that.

So it’s uncomfortable for me. I don’t like that. But yeah, mental health wise, I think I always try and get enough sleep, not that that ever works out.

And I’m sure you can relate. But I do take vitamins. I do try and keep hydrated.

And I just try and keep a balance, really. I always have something on my list that I want to go and do for me or something, a little treat. I always have something, a goal to work towards, to keep a little bit of myself.

I always make sure I watch something on TV that I want. That’s my choice because sometimes it’s been 10 o’clock and I’ve still had kids TV on because I need to see what happens to the turtles. And my husband’s like, they’re all in bed.

And I’m like, I know, but I’ve just got to finish watching it. And so, you know, I like all the midwife. I like EastEnders.

I like what I like. And I make sure that I carve that time out for myself. And what else?

I like to… What makes me all right is if I know everyone else is all right. So I do sometimes get on my phone and I make sure I message everyone just to make sure they’re all right.

I like to feel connected. I don’t like to feel like loads of weeks have gone by and have not checked in, you know? And I like to travel.

I think that you should always, if you can travel, even if that’s within the UK, you should always have at least one slip in the doe to step off the wheel and go and have a break as a family altogether. We’re going to have ours in two weeks. We’re going to Egypt.

I’m really excited. Oh, that’s sad. Is that all of…

You know, it will be chaotic and there will be times where I sit back and think, oh, my God, why have I done this? Because it was booked in an overconfident moment. Does it all look really good together?

Yeah. Oh, wow. Yes, that’s going to be amazing, but it’s only a five hour flight.

Oscar does travel really well, thank God. Touchwood, very lucky there. He does travel well.

He likes us all together. I think it insulates him. He likes the older kids being around and he’s obviously the youngest, so it’s almost like he’s got two sets of parents, which is great because our younger kids can run way faster than we can.

If Oscar is out the buggy, we man exits and things like that. So I just think for your own wellbeing, I think don’t fester. It is valid.

If you’re feeling something and it is bothering you, talk to someone about it. Don’t think, oh, it’s silly because it’s not. It’s bothering you.

So it’s not silly. If it’s bothering you, then… And I always find that’s better.

Don’t sit on stuff and talk about things. And then keep a little bit of yourself. Yesterday, we had a lovely walk.

We went along the beach. Oscar really needed it, but actually, so did I. Connect back to nature.

There’s nothing more real than feeling like you might have frostbite on the beach on Sunday. I’m so cold. I now can’t move my hands.

It’s brilliant. And also, Tim, I want to have a bit of time with you and your husband, if you can. Yeah.

So, I mean, Brandon and I, he’s obviously very busy as well. And we do connect together and just have like half an hour. Like last Monday, it was our wedding anniversary.

We’ve got Chinese takeaway. I didn’t cook. And we sat at the table.

And, you know, that is our going out from here. All the kit, you know, Logan went off gaming. Oscar was asleep.

And we had a good hour. We spoke about stuff. You know, otherwise, you can be a bit like ships that pass in the night.

But I think it’s good to check in. I know you’re still on the same page. I know that you’ve still got the same goals together.

And, you know, be realistic. We’re not going to get a weekend anywhere. You know, like my brother and his wife, they went to Croatia for a few days for their wedding anniversary.

Lovely. But that’s not going to be an option to me. So there’s, you know, there’s different ways.

And what works for you? Absolutely. And I think you just have to be realistic about it.

Be open and honest. Talk to people about how you’re feeling. You know, if I’m having a down day, I’ll say, look, I’m feeling a bit down today, you know, I think I’m just going to eat a couple of Mars bars and cheer myself up or whatever works.

And don’t put too much pressure on yourself. We’ve got a couple of minutes left. I just wanted you to talk about your new podcast.

So we’ve got two minutes. Okay. Well, I’m doing a podcast with four neurodivergent women.

It is on all streaming websites and it’s called Unfilled Heard. So it’s unlocking women’s voices that are neurodivergent that are either diagnosed or not. And it’s a great platform to cover different topics like birth stories or friendship.

So we hope that everyone enjoys reading it, reading it, listening to it.

[Speaker 2] (59:12 – 59:12)
Okay.

[Speaker 1] (59:12 – 59:54)
Just a really good mix. Yeah, really enjoying it. Episode three this week.

Well, thank you very much. Thank you for everything you do for our charity. Thank you for sharing your experiences.

And I hope the range, the ARFID range is going to be a success. And best wishes to you. Best wishes to Corinne.

I know she’s had to rush off for her children. So, and everyone listening in, just take it one day at a time. As I always say, some days good, some days not so good.

And always, it’s always good to talk. Don’t feel like you’ve got to hold everything in all the time. Please speak to others and just sort of, you know, just share your experiences.

So thanks, everyone. Thank you so much, Anna. Thank you.

Take care. Take care, everyone. Bye.