Episode 5: A Mum's Bold Choice: Autism, Stem Cells & Hope

In this episode of Beyond the Spectrum – Conversations with Parents on Autism and Beyond, we take an unexpected journey from fishing in Oman to discussing autism and alternative treatments.

Meet Claire, a boat captain in Oman, whose son Leo is autistic. When mainstream approaches didn’t give the results she was hoping for, she explored the controversial but intriguing path of stem cell therapy. In this candid and thought-provoking chat, Claire shares her family’s experience, the challenges they faced, and what led her to give this treatment a go.

This story is a little different from our usual episodes, but definitely worth a listen. Could stem cell therapy open up new possibilities for autism intervention? Tune in, keep an open mind, and let us know your thoughts.

If you'd like to get in touch with Claire, let us know and we’ll pass on her details. And if you ever find yourself in Oman, make sure to book a fishing trip with her - it’s an adventure you won’t forget!

Don’t forget to like, share, and subscribe to help us grow and support more families on the autism journey.

If you enjoyed listening and found this content valuable we'd appreciate it if you could provide a positive review and to share this with your network to potentially reach and help more parents and families 🙏

Transcript

Autism & Beyond (00:09.262)
G'day and welcome to episode 5 of Beyond the Spectrum Podcast, conversations with parents on autism and beyond. So this episode came about in a strange way. It's our first international guest and I met Claire actually when I was on holidays in Dubai and my brother and I flew over to Oman for a fishing trip there. knew Claire, she was the boat captain that we went on and fishing was a little quiet so we got...

having conversations and I found out her son Leo has autism and she went down the track of stem cell treatment and I thought that was quite an amazing story. Definitely worth sharing with you guys. have a listen. It's a little bit different to the normal stories that we share but definitely worthwhile. Hopefully you'll get something out of it and may open up a couple opportunities.

Claire is keen to chat to you. If you would like to reach out to her, let me know and I can pass her details onto you. And if you're ever in Oman, hook her up for a fishing trip. It's an amazing time. Please share and help us grow. Cheers. G'day all, Clint from Autism and Beyond here, joined with another special guest for our Beyond the Spectrum podcast. Welcome Claire. Give us a rundown of who you are, job, children and all of that. I'm Claire King.

I live in Oman, which is in the Middle East. I've got two children, Leo who is five and he's the one with autism and my daughter Isabella who is seven. We have a fishing company here so I take tourists out fishing for big game. That's right, when I was on my trip with my brother Lee we went over to Oman and went fishing with you didn't we? We did, yes.

Lots of misbehaving. I could talk about fishing all day, but that's not what the podcast is about. But you're our first international guest. So welcome, welcome. A bit of a time difference. So I may look a little bit ragged and a bit slow tonight or this morning. Tell us, was it Leo? Was that right? Yeah, Leo. So obviously we met fishing and the reason I wanted to get you on our podcast is because you told me quite an interesting story of

Autism & Beyond (02:23.712)
what you've gone through with Leo. I thought it would be super interesting to share with our listeners. Tell me what you've done for Leo and obviously is he diagnosed and is he aware of his diagnosis and all that sort of stuff. How far back do you want me to start from? Up to you. Well I'll try and do the first bit quite briefly. So when he was very first born, he was my second child.

and I could quickly tell that there was something that wasn't quite right. Fast forward through about the first three and a half years, everything was delayed. Nothing quite seemed right. No one had any answers. They had done a sort of rough genetic test on him. And then at about, I think about three and a half, they suddenly rang me and said, look, we've got this very in-depth genetic test that they're offering in the UK that is obviously is free because it's under the NHS. They took my blood, my husband's blood and

my son's I ran all of it and came back with a genetic diagnosis for him which is called CDK13 which as far as we know there's about I think there's about 400 people that have been diagnosed officially with it so and it ranges from both sides of the spectrum a child that could not even eat or breathe on their own to some people that have lived with it their whole life and don't know.

So that was very broad. In between all of this, he was nonverbal. being in Oman, especially where we are in Salalah, it's nigh on impossible to find any help or support. And I think the hardest part as a parent has been trying to find the right type of support and people that understand. And I think that we get loads of words thrown at us that we're not prepared to take in. I remember them throwing autism at me and I freaked.

And then when he got the genetic diagnosis, I was like, okay, I'll take the autism. Because I just didn't really understand it. And I didn't really understand how it was going to affect me, us in general. Anyway, we sort of worked through it and I just basically put my time into trying to find the right therapists, the right people that could help him. And that was another thing that I have found really difficult is that

Autism & Beyond (04:46.145)
I didn't find the therapies that they offered here were like the westernized countries. in the UK and I guess in America, just isn't those options. So that's been a huge challenge to us finding English speaking speech therapists and occupational therapists and physiotherapists. So that sort of happened later. And we're now at a point where he is five and a half.

I have managed to find a lady here that started a Montessori school and she has him at the Montessori. A lot of wrangling. So she's growing this great Montessori school in Salala that's sort of come off the basis of my desperation for Leo. And I found a fantastic occupational therapist in Kenya who has come to live with us, or not live with us, but to be here. And she works with him.

on a 24-7 basis almost. Not in the evening, in the evening it's me, but every day she goes to school with him. So that's been amazing, which obviously I feel very, I feel lucky in some ways because a lot of people wouldn't have that option. You know, they have to do occupational therapy for an hour every, you know, a few, like three times a week. But he missed five years of any of this because we didn't know what was wrong with him and we didn't know how to help him. We couldn't find someone. So.

We put that in place and then as I think I told you when we were on the boat and we were talking about earlier, I came across one of the ladies on this Facebook group for CDK 13 started to talk about stem cells for autism. And obviously it sparked my interest because a lot of people were talking about it giving speech and because my son has babble and he says a couple of words.

I feel like it's there, but he can't manage. I started looking into the, to the stem cells therapy, basically route of things. that enough background for you? no, no, that's, that's, that's good. So, so you then went down the stem cell track and we spoke before I was recording that you noticed massive differences, is that right?

Autism & Beyond (07:00.481)
Yeah, it originated with me being a very punchy parent, finding that there's a place in America called Duke University, and they are supposed to have one of the best stem cells for autism options. And with a of a lot of pull from various people, I managed to finally get the doctor on a WhatsApp call. She didn't really have much of a choice. That was another story in itself.

And she was like, you must know some people, which I really don't, but I was just quite determined. So I got her on this call and unfortunately Duke only, in America it's not FDA approved stem cells for autism treatment. And Duke can only do it as like a trial course. So they've been running trials for decades now. And for anyone that doesn't know, and this is my very basic knowledge.

the stem cells can be taken from varying ways. So they can either take it from your bone marrow, take it from the cord blood of the child or a sibling with a match. Or some of these places can actually cultivate their own stem cells that they, from various methods, a lot of it is from donated cord blood and cord cells. And then they extract the stem cells out of it, which

From my very basic understanding, they don't have to be matched to a person. Obviously, some of the places that use their own stem cells for various things do, but for this particular. So Duke couldn't do it and Panama from researching were the equal. And so after about nine months of pestering and begging, I got on a call and the woman said to me, we can't guarantee it. And I said, I don't care.

I think with any parent, we don't care. just like, as long as there's not any major side effects, I'm very willing to give it a go. So we did. We went over there in September. Quite the journey to get there. Hell, yes. With a five and a half year old autistic child that doesn't understand much. the time he was this lovely, gorgeous

Autism & Beyond (09:24.463)
He's the smiley side, huggy, but away with the fairies. He would lie on the floor and clap for ages. He would sit and just turn pages of a book for hours. Not so many tantrums and not the typical autistic traits. would go off onto the... If you take him out, he loves people, so he'll run up to people and he'll stare at them and he wants to touch them.

We obviously in an Arab country, we have lots of covered people and he loves women that are covered. I'm sure it's his naughty side. He just wants to rip it off and have a look. So anyway, I traveled over and they do a blood test the first day and then it's four days of a really super fast. They inject into the vein these stem cells and I think it's about 40 million cells over four days. So it's practically painless and

It was dead easy for us anyway. He's not afraid of needles and he's got a high pain threshold. So it was super simple. And I started seeing things different immediately. On the second day he picked up a toy car and he started using it like a toy car, which he'd never done. And then since we've been back in Oman, it's been however many months. And obviously this occupational therapist then came and worked with us and everything has changed.

full on concentration. He is trying desperately to say more words as different kinds of babbling. The understanding is completely different. He focuses on you, he answers to his name, he'll come over and take your hand and take you to something to say that he wants it. know, to open the fridge or open a cookie pot or whatever it might be.

His interaction with other children is much more meaningful. His play is more meaningful. He started to understand shapes and colours. We asked him to sort them. But almost in the funniest way, he can't be bothered. Leo, look, look, it's a circle. And he's like, yep, goes in that box. Duh.

Autism & Beyond (11:39.951)
So he's got bit of attitude as well, didn't Yeah, he's just got this like super labour and he's like, he's kind of attitude-y when he's doing it. So yeah, for us, it's been phenomenal. And the stories on these Facebook groups about it have been phenomenal. yeah, we are signed up to go back again. So we will go back.

in June to have another round. Yeah right. So I think my plan is as long as I see what they call gains then I will do it this time and then I will do it one more time. Yeah okay. And I really think it's still doing something I don't care if I have to go back you know for the rest of his life. If anyone ever asked me what you know I've got a child with autism I would just say to them try it. Yeah yeah okay. There's nothing to lose in my eyes.

We have the NDIS here, so the government funded disability support. don't know if they would be on board with that sort of stuff. Getting money out of the NDIS for parents is like getting blood from a stone sometimes. yeah, and that's the hard part. There's a lot of these parents, you know, that... I mean, we're fishing guides. It's not like we have the money, but it's a sort of case of, I'll sell my kidney if I have to.

And I'll make it, you know, make it work. Obviously being Omar, your challenges are, you you touched on them a lot different to parents in Australia. So are there any more sort of challenges that you face that are generally like out in the community? there sort of people accepting or are they a bit more, because I mean, my limited time over there was, I got the vibe that everyone was very friendly and quite calm. Yeah, but that was.

my limited time over there? No, I know you're completely right. The Amanis are the most amazing race of people. I broke down once and a guy gave me his car and took my car and I drove home with the kids because I had the two kids in the car and he the next day bought my car back washed with a brand new battery and a new, there was something wrong with the starter.

Autism & Beyond (14:02.799)
and that she gave me the bill and would only take money for the bill. I can't tell you how amazing they are. Due to the fact that it's, and I'm not really sure how I put this, it's been commonplace that there is marriage within a closer side of your relations. There are, and I don't know if it's any higher percentage, but there are...

of a large number of children that have got disabilities of differing descriptions. from talking to some of the locals that I understand, some of the families can be quite sort of not ashamed, but shy of it and the child stays at home and others are very open about it. And it would be widely accepted if any child had any disability that I've never seen anyone bullied or

picked on because of it. So for us, no is the answer. The expat community is very small here and they all know me because I've been here for 10 years. So they've all been amazing. I don't talk about it. I found it very difficult to talk about it. It's taken me to probably meeting you guys to be one of the first to actually discuss.

what I've been through because I just couldn't couldn't really take it in and I couldn't I Don't yeah, I just I couldn't deal with it very well, which is really unlike me I was very surprised at myself if I look back But it's your child at the end of the day and you just want the absolute best for them But no everyone's extremely accepting and Yeah, you know his schooling is great The schooling is gonna terrify me because he's got basically another year that he can say at this Montessori

Yeah, first experience of Oman, I got off the plane and getting into across the border was one interesting experience. the funniest thing I got into the cab and was just back seats were just covered in thick plastic. I just sort of got in and there were no seat belts. I sort of like, my God, no seat belts. do I do? No, they say inshallah, which is God willing inshallah you will be fine.

Autism & Beyond (16:25.919)
On the way back in the cab again, Lee gave me the front seat, he was like, the seatbelt's at the front, like, you'll be okay. That's almost love from a brother. That's the closest I think I saw you the whole trip. Yeah, well, yeah, we had some interesting times. It was either that or he figured it's more likely you're gonna hit a camel and it's gonna come through the windshield and gonna get you first. I don't know if it's a good thing. Funny you mention that because, yeah, when we're driving back they were like...

20 camels or something on the roads. was wow, this is, here it's kangaroos on the road and over there it was camels. He's definitely trying to kill you off. Well, he didn't succeed. had his chance.

Now I think he does care for me. won't say that. It's on public domain now. yeah, so back to the real reason we're chatting. I guess you touched on, I mean, you pretty much covered everything, but you would definitely do what you've done again. you know, if it was achievable for parents, again, obviously being in Australia is different to over there. But if it was a track that

they could go down you would definitely recommend the whole stem cell. a hundred percent. A hundred percent. They'd have to look outside of country. Everyone does. But the first thing I would say to them is go onto Facebook and it's called Stem Cells for Autism. There's two groups and just just read through the comments. I mean, you could spend hours reading through the comments and there's all sorts of places that do it and all different types that do it. But

Literally 90 % of them go to Panama. I don't know why, but Panama, the guy's written this amazing book. I can't remember what his book's called, but if you look up Panama Stem Cell Institute, the guy, I think he's called Riordan, has written this fantastic book, and that's what he's studied for decades now. he's, their own personal lab has made these what they call golden cells. So when they take the cord blood from varying donated places.

Autism & Beyond (18:38.575)
they only select certain ones that have got what they deem to be the strongest cells. basically the stem cells sort of go into the body and it takes about a month for them to sort find their little place of whatever they're going to fix and then they start to fix. So it fixes a lot of gut issues which obviously is linked to autism. Gut issues, behaviour, varying other parts around things that autistic children

the problems that they have. So I think definitely that side of things for me has been really helpful and I think for any parent that finds out or gets to the point, because most places don't test till two a half, three, it's just not to freak out because I think it's such a difficult word as a mother to hear.

because you don't understand it. And really what I wanted someone to say is, no, your son's amazing. He's going to be a little bit different than this one. But neurologically, he's got this fascinating, he'll probably have this fascinating ability to do this because that's really what we're talking about. It's children that, they might be different than us, but God, they're probably a hell of a lot more interesting than the average person is. And I'm definitely on the spectrum.

After seeing my son, I now realise I'm probably down the high functioning side of things with a few other little things thrown in there that we won't talk about. But yeah, I think any parent that has to go through it, if they have to get their child tested, fine, but I think it's the beginning part that is very

the lack of support and understanding. you give birth to this child and you think it's gonna have boyfriends and girlfriends and drive a car and, you know, get married and maybe have children and then suddenly that whole bubble gets just crushed. Not crushed, but you're like, okay, now you're telling me that that might not, you know, it might not have happened anyway.

Autism & Beyond (21:04.555)
at least they've explored it and now what is it? No one has answers and it's very frustrating as a parent. There is no answer. Why? Why is Leo like this or why is your child like that? There's no one size fits all but I think around the world we're all becoming a lot more understanding especially in the education field of each child is different. Yeah, definitely.

and has to be supported differently. I still see some horror stories of schools, I'm just like, oh man, what are they doing? Generally, think it's starting to be commonplace and the realisation that people are different. The whole testing thing, I've seen a picture of a card and it was like a fish, they should test the fish differently to the monkey.

Today we're learning to climb and the fish are like, I can't climb. But in their own way, they've got their own brilliances and things like that. If I look back at the struggles I went through at school and not thinking I was particularly good at this or that or whatever, I went through school, university, got a degree in business and economics. I've done

Absolutely, well, okay, fine, international business economics. so technically I've used international business, but really everything that I've got to at this point is just basically learning how to shout at clients and tell them they're useless and they must cost more and cost further. And, you know, a bit of banter on the boat, but I don't see, you know, too many major things. So now when I look at my kids and, you know, the teachers, well, you know,

she's not very good at her division. I'm like, well, she might have to use a calculator for the rest of her life. Oh, no. I wish more parents were told, OK, cool. Well, that might be a challenge. And if you can support it at home, but otherwise, unless they're going to become an aeronautical engineer, I wouldn't worry because this is their strong point. Let's focus on their strong point. And you know, what makes them happy?

Autism & Beyond (23:24.355)
Because all of us at the end of the day want to do something that we're happy. Mm-hmm. That's right. So if, you know, if my son decides that, I don't know, he wants to become a fishing guide like me, then great. And if he never manages to do his times table, I don't care. Mm-hmm. If he never manages to learn how to write, that's fine, because there will be something.

Yeah, yeah, that's strong point. Technology's not going away, it? No! There's always workarounds and yeah. Yeah, it's, it's, it's, I think we put so much stress on ourselves that our child has to conform to this box and why, why is he not reading? All of his friends are reading, who cares? Yeah, that's right, they sort of pick it up at their own time, a lot of the times, don't they? Yeah, yeah, I think definitely the stress factor.

I wish someone had been there that was five, ten years on from me and just said, don't worry about it. Isn't that so easy to say as well in a position? And it's taken me a long time to get to that position. But I'd love to say to other parents, you've got this special little person that is, promise you, going to teach you some things that you didn't even know and is going to bring something really amazing to the world.

It's funny you said don't worry about it. One of the little boys I see, he's got a bit of fear around challenging things and one of them is going high on the swing and I'm always pushing kids outside of their comfort zone. my latest thing is he always says to me, he's like, Clint, read my body language. I want him to say something to me. Yesterday he was like, Clint, I'm really disappointed in you.

Autism & Beyond (25:15.72)
on the swing, I'm always checking in and he's like, that's high enough. I'm like, are you holding on? He's like, yep. I'm like, are you safe? I'm like, yep. And I'm like, well, don't worry about it. And that's become a thing now. So we're on the swing. He's like, it's too high. I'm like, you're holding on? Yep. Are you safe? Yep. And I don't even have to say, don't worry about it. Just sort of, I look at him and he just knows, but yeah, okay. yeah, don't worry about it is the motto. So a couple quick questions.

I guess my big thing working with families, obviously we work with the children, but the big thing I see is the parents. You obviously have gone to the other end of the world to support. What sort of supports do you have in place? How do you put the oxygen mask on first? Have you got supports in place to help yourself or are you still just taking it every day and doing what you can?

to be brutally honest, see a therapist every, maybe every two weeks. And I just talked to her because, which I'm sure actually probably a lot of other people have gone through. So I will describe it without too much detail, but recently got divorced because, well, for varying reasons, but on the side of my son, there was just no support there. You know, I was obviously falling apart.

and not understanding and you know all the emotions that go through when you first hear about it and he just well he doesn't have any empathy so he just was like it's going to be fine which actually i do understand you know it is going to be fine and my son's not dying so i'll you know the the fact that i was taking it but it's a huge shock so i found it very difficult i didn't want to talk to my friends my parents you know

they didn't understand, they're old, they don't understand it. So no, I didn't find there was a very much of a support structure and I think that's really difficult for people unless you are in a large community where there is like almost a dedicated, you know, autism support or you you go to the school and they go, these are the other parents or this is the whatever you should go on and plus with genetic diagnosis as well, you know, I was trying to talk to people on this

Autism & Beyond (27:41.666)
Facebook group about what their children, how they were dealing with different things. So I think definitely I would say to any parent that was really taking it badly, having just a counselor of some description really gives me a chance to talk things through to a person that actually wants to listen, probably because I'm paying them. They have to listen. They have to listen. not you again. Jesus has been two weeks already.

I know, this poor woman, she's like the fifth one I've found. Let me refer you to somebody else. Yeah, they're still not telling me what I want to hear. No, But that's, think that, and then I have now got one or two very good friends that I have slowly learned to open up to. So having people to talk to and just push it back and forth and I think

Funny enough one of them is a client whose son, I don't think he's autistic, he's got lots of other issues, but it's really brought me out to be able to speak about it. And when you speak about it, you learn so much. Yeah, I think, you know, when we were on the boat, you know, when you found out what I did, your eyes went up, like, somebody I can talk to without judgement. Well, it's experience. You don't know who to speak to with experience. you're like...

Any ideas how I should deal with this? no, no, no, no, he's never gonna grab that. Good luck. Thank you very much for your time. Obviously you are very busy with with all your guiding and stuff. But if people want to reach out to you and connect with you, are you okay with that? Or what's the best way? my god.

As any parent that yes would like to hear my mad ramblings I'm 100 % happy they can find me on Facebook or on Instagram if you want to put the links to those like my personal ones then yeah absolutely if they've got questions about the stem cells or just want to know where to be pointed in the right direction then yeah 100 % and if they want to book a fishing trip same same oh yeah then and then I'll put them onto my company one

Autism & Beyond (30:05.432)
Well I might have to make another trip over. Yeah, no, yes, you're definitely invited. Yeah, thanks very much for your time and yeah I'll let you wind down and get ready for your next day, make those lunches and your usual little packed lunches that you bought. But I think yeah, really loved hearing your story and that's why I was keen to get you on because...

I personally hadn't heard of any of the stem cell research stuff and I think great for other people to hear it. Obviously it's not achievable for everybody, I think seeing that there are opportunities out there outside of people's normal view, it may sort of lead them down different tracks, which may open up different doors and find more experiences. So I appreciate your time and you didn't cry once.

No, no, I almost I've held it back It certainly was worth getting up at 2am to chat with you so Oh, it's so nice to chat to you as well But also, you know, if you need another person just to chat to or you know, to your ramblings or whatever, you've got my details so definitely reach out and give me a chat as well anytime you want so Thank you, I will do Too easy, thanks for your time