The Untypical Parent™ Podcast

BDD: What is it? Early Signs, Misdiagnosis, and How Parents Can Help

• Liz Evans - The Untypical OT • Season 3 • Episode 5

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I sit down with Sam Milburn to unpack body dysmorphic disorder (BDD), what it is, why it hides in plain sight, and how parents can spot early signs. We share practical next steps, from navigating CAMHS to using scripts that break reassurance loops without breaking trust.

We cover:
• BDD defined 
• Early signs in teens including checking, avoidance and reassurance seeking
• Why shame and lack of insight delay help and fuel misdiagnosis
• The impact at home, school and with friends
• Is there a neurodivergence overlap
• How to approach schools, GPs and CAMHS with evidence
• Parent scripts to step off the reassurance treadmill
• And resources from the BDD Foundation and Sam’s support group


You can find information about BDD and the support Sam offers here:

https://bddfoundation.org/

https://www.beyondbdd.co.uk/

Instagram: https://www.instagram.com/beyond_bdd/

And Sam's Facebook group Body Dysmorphic Disorder Support for Parents and Carers: https://www.facebook.com/groups/bddcarersupport/

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I'm Liz, The Untypical OT. I support parents and carers in additional needs and neurodivergent families to protect against burnout and go from overwhelmed to more moments of ease.

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SPEAKER_00:

Sam, thank you ever so much for joining me on the Untypical Parent Podcast today. It is lovely to have you with us today.

SPEAKER_01:

Thank you. Thank you for having me. I'm very excited to be here and talking to you today. It's been in the works for a little while, hasn't it?

SPEAKER_00:

It has, it has. And I think we've had issues, as probably most parents do in neurodivergent families of trying to get together and timings and organisation and who's busy and who's doing what, where, when. We have finally got there, Sam. We have got there. I'm really delighted to have you here today. I'm really looking forward to today's conversation because it's something that I don't know a lot about, and I really want to know a bit more. But before we do that, Sam, tell us a bit about you. Who are you?

SPEAKER_01:

Yeah, so I'm Sam Milburn. My pronouns are she, her. I'm 42. Um, I'm a late diagnosed ADHD. I was diagnosed ADHD at 41, just over a year ago now. Um, did what most ADHDers do and like deep dived into it, create my own podcast, started interviewing loads of other people who were in their 40s of ADHD. Um, hyper focused on that for about a year. Um my day-to-day job is that I'm a digital marketer, so I do a lot of um a lot of that's around sort of SEO um and websites and all that kind of stuff, getting people found on Google. Um, I have a teenage son who's just finished his GCSEs. Um, and um I'm married with my husband, two dogs who, if you're watching on YouTube, will no doubt see feature on here because as soon as I start talking to someone, they just suddenly appear thinking that like they're gonna miss out on something. Um, I've also got, yeah, two cats, three guinea pigs, and work from home. And I work from home for myself because that typical nine to five that most people do, just like most them parents just haven't been able to do.

SPEAKER_00:

Yeah, yeah.

SPEAKER_01:

Um, so yeah, that's that's me in a nutshell, really.

SPEAKER_00:

Perfect. And I ask everyone that comes on the first question that all the listeners are very used to by now, Sam, is Sam, are you the perfect parent? Am I the perfect parent? Um, absolutely not. I am waiting for the day when someone goes to me, yes. And then I don't know what I'm gonna say.

SPEAKER_01:

So I feel like I feel like I am doing perfectly fine.

SPEAKER_00:

Yes.

SPEAKER_01:

I I've I've come to uh a kind of acceptance. It it not every day, some days I do beat myself up, but I beat myself up far less days now than I used to. I have I have acquired over experience and over time more acceptance around I am doing just enough, I am doing my best, and that is good enough. That's how I see kind of perfect parenting.

SPEAKER_00:

Yeah. It takes a while to get to that point, doesn't it? It's taken like my kids are I've got two boys, and one's 13 and one's 15. And it's taken me up until quite recently, I think, to have said, you know what? Jug on everyone else. I'm doing what I can, the best way that I can, and I'm doing all right, but that's taken a long time. I've absolutely beaten myself up a lot about it.

SPEAKER_01:

Yeah, yeah. And and yeah, and there's there's things that I look back on, especially when he was younger, and go, my god, why did I do that? Why did I do that? And and all of those, all of those things are because society expects you to parent and talk to your children and discipline them in a particular way, and you think you're just following those rules and it's not working, and it's only later on that you come to those realisations yourself. Um, and yeah, and then there's like guilt and shame, and you have to forgive yourself, and there's oh my god, there's a whole big mixing pot of stuff going on. But I think, yeah, mine's 16 as well, and that seems to be like a fairly common age for you know, I'm in my 40s now as well. That seems to be a common thing, like, okay, I think I think I'm all right now.

SPEAKER_00:

Do you think I'm really interested in that? Because when you said you're in your 40s, I've hit my 40s, and I think I've got to a point in my 40s where I just thought, I don't care what other people think anymore. I used to in my 20s and 30s, it was all about kind of was I doing the right thing, but now I've hit my 40s, I've just kind of hit a bit more of a whatever. If you don't like it, go somewhere else, don't look.

SPEAKER_01:

I think I think it's that mid-age thing where you just think, I'm like halfway through my life now. Do you know what? What is the worst that's gonna happen if I say no, or if I question that, or if I go, actually, I don't agree with that. What's gonna happen? Like, what is the worst thing that's gonna happen? Because do you know what? Lots of really shitty things have happened to me last 15 years, it's been really hard work. Yeah, there's nothing else you can really throw at me now, so give it. That's how I feel.

SPEAKER_00:

That's how I just it's quite a nice feeling at times, isn't it? To be able to be whatever. And I've decided I think I'm going through a bit of a midlife crisis that I think I've learned to ride a motorbike, but just suddenly thought my partner rides as well, so it's not totally out of the blue. But I just thought, I'm gonna ride a motorbike, of course. I've got yeah, arthritis and all sorts of conditions. I'm gonna ride a motorbike. Like I said, I don't care. I'm 40 and I'm gonna just prove I can do it.

SPEAKER_01:

Yeah, why not? I think that's it. That's when you hit 40 and all these like hobbies that you always wanted to do, and you know, dreams that you always had, like, well, it's now whatever, let's do it.

SPEAKER_00:

Yeah, it's quite a nice feeling.

SPEAKER_01:

It's a lovely bit.

SPEAKER_00:

Anyway, I've gone off on a tangent, which probably might happen. It's gonna probably happen. But what I wanted you to come on, and I would I've reached out to you, Sam, to bring you on and have a chat with you about was something that I know is really, really close to your heart, and you're doing a lot of work around. Is something called BDD. Can you explain to us? Tell us what BDD is.

SPEAKER_01:

Yes, I can. And yeah, um unfortunately, as you say, it's not something you know much about because it's not something that is publicised very well. If I said to you, do you know what OCD is? Yeah, you'd have a fairly good idea of what that is. You probably even know children who have got OCD diagnosed or undiagnosed or OCD symptoms. If I said BDD, it it's not so clear. Um, BDD is a subset of OCD. So when you look up in the DSM 5, BDD comes under OCD. And the easiest way to think about BDD is OCD that is focused around a particular body part. So the OCD behaviours that you would normally get, the repetitiveness, the intrusive thoughts, um, the the rituals and things, those things you associate with OCD are around a body part.

SPEAKER_02:

Yeah.

SPEAKER_01:

So it might be your hair, your nose, your chin, um, your legs, your muscles. It can be a combination of things. It doesn't have to just be one thing either. Um, with BDD, a bit like OCD, it kind of can spread, you know, when it's unmanaged, it can spread into other areas. And there are certain criteria that you have to meet to get a diagnosis of BDD. So you've probably heard of body dysmorphism, so BDD, first of all, the clinical definition is body dysmorphic disorder.

SPEAKER_02:

Okay.

SPEAKER_01:

But you've probably seen in the media body dysmorphia come up. And a lot of people are saying, well, what's the difference? So body dysmorphia is kind of a term that came up in the media. It's a little bit, it rolls off the tongue a bit easier. Sometimes when people say body dysmorphia, they do mean body dysmorphic disorder. Sometimes people say body dysmorphia, and what they're referring to is just a general dislike about your appearance. So just having a general, you know, low confidence around your appearance isn't BDD.

SPEAKER_00:

Yeah.

SPEAKER_01:

Um, it's it's not nice equally, it's horrible and it can be debilitating, um, but it it has to meet certain criteria for it to meet BD. So one of the first things is that it is either the the the thing that the person's concerned about is either um completely invisible to you. So for example, if you said to me, like, it's my my nose is really big, isn't it? I'd be like, Well, no, it's kind of normal. Um, or maybe you've got a slight upturn to your nose or a very, very slight difference to your nose. Um, for someone with BED, it's huge. It's it's massive. They almost see it completely differently. Um, and what they've seen in research recently is that in their brain, they actually have a visual distortion. We're seeing more and more that there's actually a visual distortion. So it's actually part of the processing, like the visual processing is almost like there's a glitch in there, or um, I expect it's something to do with, and you know a lot about this as an OT, uh, that kind of like the hypersensitivity kind of side of things. There's like a hyper kind of you you you can't see the big picture, you can only see the smaller details, so they become really, really big. Yeah. And so what happens then is um over time, then that stops that person from being able to function day to day. They, you know, they spend lots of time trying to hide it, camouflage it, get treatments for it, stop leaving the house, spend long periods of time, you know, getting ready, um, unable to leave the house, and it completely interrupts their daily life. So that's like the second criteria. Is this doing the upsetting to the extent that it's stopping you living your life?

SPEAKER_00:

And quite a lot of hiding of that. Because what I'm really interested in is that I've worked in CAMs for a long time. And I was just before we kind of went on to record, I was thinking, I don't remember coming across anybody, and I must have done, but I don't remember coming across that and I don't know anybody that says I've got BDD. I don't know anybody, so that's why they're interested in it.

SPEAKER_01:

Yeah, the the so the the the the the I I think the reason for that is that first of all, there's like shame in it, like people are not gonna say. Um, secondly, people who have BDD don't know they've got BDD. In fact, you could tell them they've got BDD and they won't even entertain it because to them it's not a psychological problem. To them, they've got a real issue. Yeah. They just need to fix this thing and everything will be fine. If they can just get it fixed, it'll be fine. So do you find that most people don't kind of then know there's there might be help out there? No, no, so they don't know. So what happens? So um in children, what happens? It's up to the parent to recognise it and the parent to go and get them support. Um, and the whole beginning part of that support, um, ideally through CAMS, and I'll talk about that a little bit more in a moment, um, is is the awareness piece for them. It's the psychoeducation, it's even just getting them to a point where they at least just kind of understand what's going on and are open to the fact, okay, maybe you might be wrong here. Maybe there's a very small chance that actually this thing isn't going to go away no matter how much you try and fix it. And how about we try this route?

unknown:

Okay.

SPEAKER_01:

And we'll you know, and and so that's the way a practitioner should, in simple terms, be coming at it with a child. Um, it's estimated that about 70% of cases are onset before the age of 18. It usually happens in adolescence, it starts in adolescence. So this is why I'm an advocate for it, because if you can spot it early on, you can treat it early, and it doesn't take so much of a hold, and you've got a better, quicker chance of success because you can go from very quickly thinking your child's displaying awkward teenage behaviours about their appearance, and you might not even know what it is they're worried about. They might not be sharing with you that it's about a particular body part, you might just think, oh, they just keep getting upset about how they look as teenage behaviour. Um, to suddenly them not leaving the house.

SPEAKER_00:

So I was going to say to you, how as a parent, how did how did you recognise it, Sam? Because I presume until this happened for your you know within your family, yeah. Did you know about that?

SPEAKER_01:

Yeah, for me, yeah. So for me, so I do so this is where I believe it's linked to neurodivergency because someone in my family has have does have it. So I already was kind of aware of it, but they were never diagnosed with it when they were younger because it was quite a long time ago and it's even more wasn't known about it then. Yeah. Um, when my other family member um displayed it, didn't didn't really recognise it. I I thought it was more sort of OCD things going on, but you treat OCD and BDD differently. They have similar treatment plans, but they are very different, they are still very different too. Um, so I only really recognised it once that person became housebound.

unknown:

Okay.

SPEAKER_01:

And by that time it's quite serious, yeah. Um, which is why I'll try and make people more aware of it. So I've got a book coming out um sort of later this year, very, very small one. It's only four chapters, nice and neurodivergent friendly, very easy to read. Um, which shows a parent's journey of not really understanding what's going on with their child to that realization of actually this is BDD and how they find out about it. Sounds amazing. Yeah, so it's got all of those. Um, hopefully at the end of this year, I'm literally just halfway, I'm just right in the last chapter at the moment. It's it's emotionally exhausting getting it all out, as you can imagine. But it's just trying to, from my lived experience and lots of other people's lived experiences, pulling in all those really early signs in a really easy to understand why in a storytelling sort of way. And I've got an excellent writer helping me. He's he's he's writ I write it and then he makes it sound amazing.

SPEAKER_00:

Oh my god, I need one of those in my life.

SPEAKER_01:

He's so good. Generally, he's amazing, he is such a good writer. Um, so I kind of come up with a storyline and I put it all together, and then he just like sparkles his magic all over it. So it's like a really nice, easy-to-read story, and it really sort of gets you emotionally and it really gets you thinking about looking for those early signs. Um, so yeah, obviously I wish I could go back in time and go, okay, that's what I knew it was, and then I could have got the help sooner. But then it therein lies the problem, like with most services, right? Like, where do you get help? Is there enough expert help out there? And where'd you get help for like four years? Exactly. Which you can't because it's such a dangerous condition. It's it's it's got worse, more worse outcomes than ACD. Has it? Yeah, in terms of yeah, not very nice things. Yeah, yeah. So it's it does need recognising. And there is um an amazing um hospital in London called the Maudsley, which you probably have heard of, yeah, um, at King's College, and they're the specialist centre for it. They're the specialist center.

SPEAKER_00:

Everything, yeah. Amazing. Okay. Yeah. But we need more of that, I would imagine.

SPEAKER_01:

We need more of that, yeah, because it's not that's not up and down the country.

SPEAKER_00:

Yeah.

SPEAKER_01:

Um, so local cam services from all of the people I've spoken to up and down the country, the clinicians there have got very, very little experience of it, if any at all. They tend to give them kind of blocks of okay, we'll try eight weeks of therapy, and then they kind of try and go, they seem to go through this timeline of the how the therapy works, whereas it can take a year or more. Like it, you need to go at the person's pace, like where they are in terms of what they understand about it. Um, and then yeah, it it it's out of the box watered down, it's an out-of-the-box watered down version of what they should be getting. But they also get misdiagnosed, Sam. Yeah, yeah. So um, yeah, agrophobia, obviously, because we're not in the city. Yeah, yeah, because we're gonna because those people um who you speak to first, usually when you speak to CAMS, you're not directly on the line to a psychiatrist, right? You're normally talking to someone else who doesn't know this stuff. So they're almost kind of going down the route of, yeah, it sounds like agrophobia, or yeah, that sounds very OCD or whatever. So um, and and I know that some parents find it really, really difficult just to get an appointment with a psychiatrist because CAMS, I've got I've got parents in my group who have got children who don't even have a diagnosis yet. They're like, I'm screaming at them, telling them this is BDD. Yeah, it's gonna be four months before they even get a diagnosis with a psychiatrist. I've got a psychiatrist appointment for four months, so they're not gonna get any treatment, they're not getting any medication, I don't know what to do. And then four months is a long time. People, kids can really spiral in that time.

SPEAKER_00:

Yeah, and that's really scary as a parent, isn't it? When you sit in that bit when you're like, what do I do? And I've still got this child and I've got to keep them safe. And absolutely, I don't know actually what it is I potentially could be dealing with. I think this is what it could be, but we all need that kind of recognition, don't we, from a professional that comes along and says yes, tick, that's what it is.

SPEAKER_01:

Yeah, um, yeah, and then you know what to do once you know what you're dealing with because there could be there could be other things going on, and you need to be aware. Um, you know, eating disorders can be very closely linked with it. And I think generally um try and eat them, clinicians will try and eat treat the eating disorder before they come onto the BDD side of it, and you know, and as a parent, some of the things that you think are helping them are actually making them worse because all we want to do is protect our babies and look after them and make things easy for them. And and like with OCD, like if you think of it from an OCD point of view, you'll probably know that you know feeding that you feed those behaviours by constantly giving them what they need, that OCD, you make that monster bigger, right? By giving in to all of those things that that person's asking you to do to help them with their OCD. Um, but then if you don't do that, then it's very traumatic and stressful for them too. So you're stuck in this middle of like, I know I'm making it worse, but I don't know what else to do. Um so there's no support for parents either. Because as a parent, you become the therapist, you become their 24-7, okay, I'm in charge, you know, I I have to navigate this situation. All they do is go and see someone for an hour and then they come home and you have to do the rest. So yeah, there's a there's a lot out there. The good news is at the moment, um, they are completely revamping the nice guidelines for ACD and BED. Okay. Yeah, because they're quite old now. So there is a committee and a group together at the moment who are completely reviewing them, and this committee and groups made up of um not only clinicians, you know, and some of the most amazing experts, but it's also made up of parents and people with lived experiences as well, all going in there. Um, I applied for it and I didn't get on it. I did get shortlisted. They should have had you in then. No, I got shortlisted. Um, and then I went through to interviews as well. Um, and they did, they were so lovely. They can they told me that I did really, really well, and it was a really, really hard decision um because they had so many amazing people in there. And I was like, well, obviously not because you haven't got me in there. But um, but there are there are other forums and things that I can get involved in to give my opinion forward. But as part of the process, I was able to tell them like what did I think were the top three things that needed fixing in the system? So all of that's gone in there. Um, and that included, you know, that support for parents is paramount. You know, when when your child's diagnosed with autism, one of the first things they do is throw an autism course at you. Um why isn't that why isn't there something like that for ACD and BDD? Something that parents know very little about. Parents need a step-by-step framework of when your child does this, you need to do this. Like, and you know, it they need very clear instructions, not a a page on Google.

SPEAKER_00:

And I think naturally, as parents, we tend, maybe I'm talking for myself here, but we tend to turn it inwards when there's something wrong with our kids. What have we done wrong? Was it something I did? Was it something I said? Was it something in some way that I was with them that that has made them like this? Yeah. It's really hard. And actually, like you say, it is about that support for parents. I mean, you know, a bit about what I do as well. Is that I'm a big voice for supporting parents because, like, exactly as you said, even when we do get the help, these people all go home. We're the ones left at night with the kids when they're really struggling or when they're really struggling to go to school and they're crying their eyes out, and you're thinking, I don't know what is the best way forward for my kids. Yeah, there's no, you know, and you I always think back to we know when we have like I didn't do NCT, but I just did that the local one. I couldn't afford the NCT one, so I actually did the local one. But you know, when you think about having your baby, they're talking about uh, you know how much breastfeeding you should do and all that kind of stuff. Um, but actually there's nothing in there, um I mean there wasn't 15 years ago, but anyway, um, about parenting and what parenting might look like and feel like and be like and the stresses and where you can get support. And actually, I think there's a massive area that's missing. That's not even when we get down the roots of our kids having very specific needs, then it becomes even more challenging and even more lonely as a parent and scary as a parent.

SPEAKER_01:

Yeah, definitely, definitely. And you know, when I've I've got a Facebook group um that people just, you know, parents obviously out there looking for information, looking for other parents in the same same boat, find us on Facebook. And um, you know, some of them worry that like, did I did I create this? Did I did I how what how why did this start? Why has this happened to my child? Like, why? Um, and the really important thing to remember, especially if someone's listening to this, thinking, oh my god, this sounds this sounds really familiar, um, is it's not you, it's not your fault. There's not one thing that pinpoints it. It's like, it's like with most things, it's a big melting pot of stuff. So, of course, there's probably some susceptibility there to having those kind of repetitive, intrusive thoughts that then turn into the OCD or BDD, whatever we're talking about. Um, and it can be that someone said something about their appearance when they were quite young that then stuck in their mind and became intrusive and went over and over and over again. But some children are teased about certain things and it never turns into BDD. So it has to be like it's almost like this perfect storm, and it's obviously not a perfect storm, um, of things for it to happen. So it's never just one thing that you did. So that the yeah, that's the hardest thing to come to terms with. There is a lot of you you get you give yourself so much blame for it. It's hard.

SPEAKER_00:

We just naturally do that, don't we? Or we do with everything, don't we? Yeah, no one warns you about that bit before they're born. I'm thinking about having kids. Well, can I just let you know?

SPEAKER_01:

It completely changes your brain makeup, your DNA, everything about you becomes about this child, and how to make sure their life is perfect forever. And if it's not perfect, it's all your fault and you're a terrible parent. Yes. That's how you feel.

SPEAKER_00:

Yeah, and if that gets way into your 40s that you start going, hang on a minute 20 years' time, you'll be absolutely fine. Oh, that's sad, isn't it? Thinking about it then, Sam and thinking about BDD. Are there kind of any specific things that a parent kind of uh could look out for? Like I suppose I'm linking into your book a little bit there. Yeah. We put links for Sam so everyone can find that as well on the group as well, yeah, um, in the show notes. But I'm just wondering if there are any kind of like if there's a parent out there listening and they're thinking, Oh, I'm I'm not sure. Um markers that you think actually these these would make you think go and have a look at this and have maybe research this a bit.

SPEAKER_01:

Yeah, absolutely. So I think the first thing is, you know, when you're when your child starts to become a little bit, so this is without even noticing that they're they're they're they're checking things, is are they are they acting strange? Are they slightly withdrawn? Are they starting not to see their friends again? That's usually the first step. You think, well, what's going on? They're they don't want to go and play out with so and so. Someone's come and not for them, they don't want to leave the house. Um, and often our immediate thought is, oh, what's going on at school? Like are they being bullied? Like, what's happening? So I think the first thing, the first most subtle thing is like they just seem a little bit depressed, and you don't know why. Because all those other little things they're gonna hide from you, that they're they're not really going to share that immediately. Um, so look out for that. Um, the next thing is that that kind of hiding away and spending a long time in the mirror. If you're catching them, like spending a long time doing that, you might not see what they're doing or notice what they're doing, um, looking in reflections everywhere they go. Windows, car windows, um you'll you'll notice that, you'll start to just notice them keep catching themselves. Um and then and the next one, which it it seems obvious, and not everyone experiences this, but this is when you start to think, oh, it's just teenage behaviour. Some children will be constantly asking for reassurance. Yeah, does my skin look okay today? Does it look clear? Can you see those spots? Can you see them? No, okay. And and then coming back an hour later, can you see them now? Like, are they got like and just that constant asking over and over again? And you'll be constantly saying, Yeah, it's fine, it's fine, it's fine, it's fine, it's fine, you're beautiful, like you're beautiful, don't worry, it's fine, it's fine. Um, and that will start to escalate. So just watching out for those constant those those asking for reinsurance about certain things. Um, and that's tricky because that can just be completely natural and normal, like I do it, like we all do it, you know, um, but it's when it's just starts to become a little bit unusual, a little bit repetitive, yeah, then keep an eye on it. Um and then I guess the next thing after that is if if that becomes more repetitive and you notice that they're they're stopping doing things because of it, then I'd I'd seriously consider, okay, we're probably in BDD ter territory here. Maybe there's more going on here than they're actually letting on about. Um, because some people some children could be really, really hiding about it. You know, they might have, especially if they're a teenager and have they have access to their own money and stuff, they might you might notice that they've been buying every single cream on the market, you know, or they're asking you for really expensive things. Um, or they start asking talk start asking questions about cosmetic surgery, or you see that they're researching cosmetic surgery and things like that. Yeah, that's when it could be, yeah, could be BDD. Okay. Um, so look out for those things.

SPEAKER_00:

That's and that's hard as well, isn't it? Because some of those cross over into other additional needs that that people might have and other diagnoses. So trying to tease that out when we're parents, yeah, is really hard. So I suppose it's getting more and more information. It sounds like maybe your group can do that, and there's some there. Absolutely.

SPEAKER_01:

And I think if you're if if you're concerned about any of those kind of behaviours around your child, then and then the first step is always to to sort of get a referral to CAMS, right? Either through the school or through your GP, um, and say you're concerned and what CAMS will be looking for, and you you'll probably be able to advise on this as well. But I always say to people, just make it very, very clear that this is really disturbing their life, their social life, their school life, you know, even if they've only missed a couple of days of school from it, that's still something to be concerned about. Just make it very, very clear because that tends to be the one thing that they'll then action and take more seriously.

SPEAKER_00:

Is there kind of like um an you know, like you get like the associations out there that um is there one for BDD?

SPEAKER_01:

There is, it's called the BDD Foundation, so it's the oh. Charity that is completely dedicated to BDD. It's based in the UK. They've got very close links with the Maudsley as well. Their website, you know, I've got a website, but their website is just absolutely jam-packed with information. So it's got downloads for teachers. So if you're a teacher listening and you want to look out for this in your students, it's got downloads for parents, it's even got pages for children as well. So it's got pages for youth. So if you have got to the point where your child is saying to them, saying to you, like, this, I can't stop thinking about this. I think there's something wrong and they're open to it. You can, you know, they can go and have a little read up on it. Um, one thing I'd say is like when you suspect your child might have BDD, just confronting them about it and saying, Oh, I think you've got BDD and then shoving a load of stuff in their face is good is gonna like cause some friction.

SPEAKER_00:

I was just gonna say to you, Sam, how do you have these conversations with the kids?

unknown:

Yeah.

SPEAKER_01:

So the conversations around BDD, I'm really info-dumping everything on you, aren't I? Today, we need it. Yeah, the conversations around BDD will always start with, especially when obviously, you know, they're not they're not self-aware. So there's different levels of self-awareness. So you think they've got no self-awareness of anything's wrong. They think that this is all them. Um is you're more focused on what um this thing that's happening to them is stopping them from doing. Like I can see that what's happening right now with this whole you spending lots of time here in the bathroom, you you you wanting me to buy you all these different things to try and make this better. I can see it's really upsetting you, and it's stopping you from going to your dance classes or seeing your friends or having your sleepovers and stopping you going to school. And I know you really want to go to school, and I know you're getting really upset and you really want to leave. Um, you know, I think there's something deeper going on here, and I would love if we went and explored that together. Like, I think I know what it might be, but like we can talk about that if you want, but maybe we should just go and see somebody and see if we can figure out what's going on.

SPEAKER_00:

And I think there must be a big bit in there as well about reassuring them that it's not their fault. It's not anything, there's nothing wrong with you. Yeah, then you're not weird or anything like that, which lots of kids will throw at you, and we can our own self-talk as well. Yeah. This is you know, this isn't anyone's fault, but I think this is where you know we could go and get some more information, or you know, how do we go about this and I can support you through it?

SPEAKER_01:

Yeah, yeah, absolutely. It's about doing it together and holding their hand and making them feel safe.

SPEAKER_02:

Yeah.

SPEAKER_01:

Um, and that no one's gonna try and tell them to do anything that they don't want to do, no one's gonna try and convince them of anything. It's literally just a bit of an exploration to see if we can find out what's going on, um, and and try and, you know, with the purpose of making them feel better.

SPEAKER_02:

Yeah.

SPEAKER_01:

Um, because they will keep pushing for the thing to be fixed, yeah. You know, um it's the answer. Because they think that's the answer, and they will keep pushing for reassurance for you to tell them that they look fine. And and the trouble with that is when they're constantly going, does this look okay? Does this look okay? And you're constantly giving in and buying all those things for them, you're kind of feeding it. That's the really sad thing. So we just want to say, but you're beautiful, you look amazing, and they're just like, No, hey, you're lying to me, you're just saying that to make me feel better. That's just what goes on. Like, that is just the argument over and over and over again. So the advice, the general advice from all the you know, from me, practitioners, experts, is kind of like, look, we've we've been here before, we've we keep we keep covering this ground over and over again, and me keep trying to convince you of something is just not working, it's just not making you feel better. So let's take a step away and let's go and do something else. Do you want to? I can see you're feeling really shit right now. You look really up, just come here, come and have a cuddle on the sofa, let's watch a film together. Yeah, like what what do they love doing at home? Just to it's really hard in the moment because you want to fix it, but what you actually want to do is just get some serotonin back in there because they are really low on it, they are really down and depressed. Yeah, yeah. So you really want to try and just just get them feeling good again away from that.

SPEAKER_00:

Um do you often find with the with the BDD it coincides alongside other diagnoses, or does it sit very much on its own?

SPEAKER_01:

And yeah, so I had interestingly, uh the last so there's like a national BUD conference, like a worldwide one, and I was at it, um, an online one. I was at it um a few months ago, and I spoke to one of the clinicians in her in her group there, and I said to her, I said, um, I've spoken to the Maudsley, um, spoken to one of the clinicians at the Maudsley, and um they said that they see like 90% of the cases are like neurodivergent children. Well, that's high. Yeah, and I said to the America, the lady over in America, do you see that with your cases? And she has adults. Um, and she said, interestingly, no, I haven't really noticed that correlation. But I wonder if that's because they're adults and perhaps undi undiagnosed. Yeah, possibly. Um, whereas with children, we're a little bit more, yeah.

SPEAKER_00:

Yeah.

SPEAKER_01:

Um I think there is.

SPEAKER_00:

Yeah.

SPEAKER_01:

It certainly is in my family.

SPEAKER_00:

Okay.

SPEAKER_01:

Um, and I see a high prevalence of it in the families that I speak to as well.

SPEAKER_02:

Yeah.

SPEAKER_01:

So that's why I tend to talk a lot in neurodivergent groups as well, people with neurodivergent children. My my my own opinions on this, I have no research on it whatsoever. But from what I see, and my opinions on it is like hyper hyper-focus. I feel like it's a hyper-focus visual, sensory processing. It's all about processing, that kind of stuff.

SPEAKER_00:

That's so interesting. I think it's all mixed in with that. Well, you could get quite a lot of OTs that might listen to this and go, I need to listen to them. My brain's going, this is kind of making a bit of sense. Okay. Yeah, yeah.

SPEAKER_01:

I'm sure, I'm sure with OCD, it's very similar. So, yeah, it's yeah, I I honestly think that's there. Um, and when I spoke to the um the keynote speaker, the Americ, the American lady, I forget her name. I'm terrible with names. Me too. Um, she said like that would be a really interesting um research if you were prepared to do it. So it's like it's on my list.

SPEAKER_00:

When are you gonna do that in your spare time? In your spare time, surely you can squeeze in a research project.

SPEAKER_01:

I don't even know how to do it properly, so it's all above board and legit. I need to research that first. Although I do know I did used to have a client actually who is a scientist who does scientific research, so she will know all of the like I don't know, thresholds.

SPEAKER_00:

You've got your guy that's sprinkling magic on your writing. Yeah, you can get someone that could sprinkle some magic on your research. Yeah, on the research, yeah.

SPEAKER_01:

Because I want if I did it, I want it, I'd want it to be, you know, watertight. Yeah. Um, so it'd be good research to maybe, yeah, do with the Maudsley, and you know, I've obviously got contact with other um BDD therapists all over the world and just get some feedback from them.

SPEAKER_00:

How amazing.

SPEAKER_01:

Yeah, that would be really interesting.

SPEAKER_00:

I'll be looking forward to hearing about that, Sam. So keep an eye out and see when you're gonna get that done. Yeah. If if there is a parent out there, Sam, that is thinking, do you know what we're having a really hard time at home? I'm quite worried about my my young person at home, and I I don't know what to do, and I possibly could maybe think it this is BDD. What would be your piece of advice to them?

SPEAKER_01:

So I would say my my first piece of advice is is um go to the BDD Foundation. Um there's a screening report on there, screening that you can do. Okay. So fill that in and it will tell you the likelihood. Um print off the information from there, go to see the GP. Um, if they're under CAMS already, through, you know, maybe you've had other diagnosis with CAMS and you've got a connection with CAMS, you go to CAMS. If you've never been to CAMS before, go to your GP so that they can refer you. Um, or even your school, actually. I think your school can still refer you to CAMS as well. Yeah, I don't it keeps changing.

SPEAKER_00:

It used to be, and then I thought it changed, but I've no idea now.

SPEAKER_01:

It would still, it would still be, I would still it would still be useful to go to the school as well. I would go to fact I would go to both. So go to your CEN leader at school, whoever's in charge of CEN, and go to your GP with all the stuff printed off. Tell them that you think this is what's going on with your child. Um, don't take your child with you. Um, I would do this yourself in the first instance. Um, tell them you're concerned, reiterate the fact that they're missing seeing their friends, they're depressed, they're withdrawn, um, and that you've done the screening and you're, you know, you think it's this, so that you can get that initial referral to a psychiatrist. You want to get to see a psychiatrist so you can get that diagnosis.

SPEAKER_02:

Yeah.

SPEAKER_01:

Once you've got the diagnosis, they can go on medication. Um, and the reason I say like medication so quickly, and I know a lot of people are like, what medication straight away? What don't you do therapy first? The the recommended route for BED is medication alongside therapy.

SPEAKER_00:

Okay.

SPEAKER_01:

Because it's such a severe condition, the medication, um, it's usually like SSRI. So anxiety to it just takes the edge off to allow them to access the therapy. Yeah.

SPEAKER_00:

Yeah.

SPEAKER_01:

Um, and it's a personal decision for everybody. I'm not saying you have to do it. No one is gonna, your child's not gonna be forced to go on it, you're not gonna be forced to go down that route, it's completely up to them. Um, and when they do go on it, they titrate them on it very slowly, they keep a very good eye on them. Um that is the that is the recommendation. So they will probably um, but again, it depends on the severity. So your psychiatrist might not recommend that straight away. Um, depending on how severe the BDD is, they might first recommend some CBT. But essentially, what tends to happen in my experience is that BDD is usually never really just mild, it's usually it's usually quite severe. Um, if a child's not going out and not doing things, it's it's really impacting them. Um and so it when when CAMS offer you a therapist, ask all the questions. And again on the BDD Foundation, there's a really good page that says to you that tells you what questions to ask your therapist.

SPEAKER_00:

Amazing.

SPEAKER_01:

Because you want to know that they've got that BDD experience, and if your child is autistic, make sure they've got that combination of experience because CBT with an autistic person needs to be accommodated and adapted.

SPEAKER_00:

Liz is nodding her head like so big time, but it's scary, it's scary how many people still out there say CBT for autistic people, and it's not in any way adapted for them. And just come out and go, What? Yeah, my son was given CBT, but it was just he just didn't get it. It was just like what what are you talking about?

SPEAKER_01:

Yeah, just does not no, it does not compute, and you can completely understand why. That's another whole podcast. Um and then the other, the other, the other one's called ERP, and this is the thing that most CAMS clinicians are not qualified in.

SPEAKER_00:

ERP never heard of it.

SPEAKER_01:

Are exposure response prevention.

SPEAKER_00:

Okay.

SPEAKER_01:

So they use it with OCD and B D, and that's where you basically expose yourself to the things you do not like.

SPEAKER_00:

Yeah.

SPEAKER_01:

So for example, if you think about an OCD, we talk about OCD for a minute. So think about an OCD hospital. Um, I saw one recently, they would use maybe the toilet as part of their therapy.

SPEAKER_00:

Yeah.

SPEAKER_01:

Like, can you touch the toilet? And how is that gonna feel? So they feel the anxiety and then they feel the anxiety leave.

SPEAKER_02:

Yeah.

SPEAKER_01:

And they understand that actually those intrusive thoughts and anxiety, they're not going to be forever, they do dissipate.

SPEAKER_02:

Yeah.

SPEAKER_01:

Because they're constantly avoiding, avoiding, avoiding, avoiding, avoiding. And so either again, so that's that sounds like that could be quite traumatic, right? And that and it could be in the wrong hands.

SPEAKER_00:

Incredibly, yeah. Incredibly, right. And there'll be a lot of parents out there, probably, that have got maybe autistic kids that have been told, and Heidi Maver talks about it, doesn't it? Come and touch the gate. Yeah, yeah, not gonna help.

SPEAKER_01:

Yeah, exactly. Exactly. Yeah, you can't when you get to that, so ERP is like one of those later stages when they've got the under they've got the awareness of what's going on, um, and then with though they feel safe and supported with their therapist, then they start ERP.

SPEAKER_00:

And I suppose as well in and around that kind of coping strategy, so that when your anxiety goes up is how you manage that. And it's not just a case of we just flood them with a horrible experience. It's not flooding that eventually that happens to do that, is more sensitive.

SPEAKER_01:

They're gonna have to shut down. Absolutely, they're gonna have a ladder, you know, of stuff that they're gonna agree with a therapist of like, okay, this is where we're gonna start. How does that feel? Okay, I think I can probably manage that. So, you know, and that and they'll there's a very specific process, and it'll be different for all of them, be completely different for all of them, it should be very tailored to that child. Um, and this is so this is why we have the Maudsley, because they are hugely specialists in that, you know, just anyone listening to this can, I'm sure, understand how complex and nuanced and how um specialist that area is. I know so I know psychologists, clinical psychologists who are trained in this, who don't actually provide that and won't provide it because they've done it and found it it can be very stressful to psychologists as well. You have to be a very certain type of person to do this therapy, um, carry out this therapy. So you can see and understand why CAMS have trouble doing this because what they tend to do is give the children CBT, and that alone isn't usually enough. It might make them feel better for a bit, but the BDD's never actually really gone, and they end up relapsing and they end up adding Maudsley. So you might find, sorry if you can't bargain, you might find that um your local cams will tell you that your child has to take part in some therapy with them before they will do a referral to the Maudsley. Because like in an ideal world, every single child will go straight to the Maudsley. That would be my ideal world. Yeah, yeah, there's already there's already a waiting list of nearly a year. So my recommendation is like, can we just get on the waiting list? I know the waiting list is about a year, so while they're undergoing like three months of CVT with you, can they get on the waiting list? Because if they get to the top of the waiting list and everything's fine, that's fine, they can just come off, surely.

unknown:

Yeah.

SPEAKER_01:

So I would try and have that conversation with Cam just to get them on the waiting list. Um, because then even once they've been assessed, there's still probably about four or five months before they can start therapy with the Maudsley. So it's quite a long process to get them with the Maudsley because they deal with the most severest of cases and like say they're overloaded. So again, hopefully these nice guidelines reviews are gonna are gonna, I would hope, I really want the government to put in place the you know, having more trained BDD clinician experts at the Maudsley that can then go out to CAMS up and down the country. I mean, how amazing would that be?

SPEAKER_02:

Yeah.

SPEAKER_00:

Um like you said, I think right at the beginning when we first started talking, it's about that education, isn't it? And getting people to know more about it, understand more about it, and know what to do about it.

SPEAKER_01:

Yeah and when you get that education, things become you just look at ADHD. Once you have education about a certain um, you know, a diagnosis of something that people have been struggling for for years. You know, my family member struggled with BDD for years, didn't know what it was, and has been diagnosed with depression, anxiety. Now they now they know what it is. As soon as you get understanding, services become overwhelmed. It doesn't keep up, the services don't keep up with the level of understanding that we have. Um, and that isn't over-diagnosis. It just means we understand better, we're more aware. So now we need more services to meet up with demand so that we can help people. Yeah, yeah.

SPEAKER_00:

Sam, thank you ever so much for coming on. Uh, just so much information. I said to you I was interested in this, and I know I've grilled you with about a hundred questions. Oh, it's been great. I've been thinking about it. Yeah, well, I hope as well, it's kind of questions that you know, parents or other professionals maybe that are listening in or anyone that's listening in might have been thinking, oh, what's that question, Liz? If you've got more questions, yeah, I'm gonna put all of Sam's contact details in the show notes. I'll also put in um for the charity as well and their support because it sounds like they've got loads of resources in there that will help. Thank you. And they've got their questionnaire that you can use and things that you can take to school and the GP and all that kind of stuff. So they sound amazing. I will put all of that in there, and I'm sure Sam won't mind you reaching out to her if you've got more questions. Absolutely. Also, we've got her Facebook group, which sounds like could be an amazing support as well. Yeah, there is one of those links on my website as well.

SPEAKER_01:

Is um I've created a little download on how to deal with reassurance syncing. So if you are at the point where you say, Oh my god, my child is doing that, and they're asking for reassurance all the time. It's the question that most people ask, how on earth do I deal with that? Um, I've created a download for that. So it gives you loads of different scripts that you can kind of use with your child on how to say that you don't feed it.

SPEAKER_00:

Oh, that'd be really helpful. I'm gonna put all that in. All that leads me to say though, Sam, as I say, is thank you ever so much. Thanks for coming on and chatting so openly about it and about something that I think probably most people will go, I've never heard of that, or I didn't know enough about it. So thanks for coming on today to that. Thank you. You're welcome, you're welcome. Um, and thanks, and I will see everybody soon. Thank you very much.