Living with ARFID: Nicole Bateman chats with Michelle Jacques

In Season 3 episode 8 of Conversations with a SEND Mum, Nicole Bateman dives into the complex world of restricted eating and ARFID (Avoidant Restrictive Food Intake Disorder) with expert Michelle Jacques. Together, they discuss:

1. What is ARFID?
   Michelle explains the everyday realities of ARFID, a sensory-based eating disorder. They explore how ARFID differs from other eating challenges and its impact on families.
2. Practical Strategies for Supporting Children with ARFID
   The discussion includes tips and tools to support children with ARFID, including sensory-based considerations, patience, and creating a low pressure environment.
3. Michelle’s Personal and Professional Journey
   Michelle shares her experiences navigating ARFID with her own child and how this inspired her to support other families facing similar challenges.
4. Raising Awareness and Reducing Stigma
   Nicole and Michelle emphasise the importance of understanding ARFID and advocating for increased awareness and support among professionals and educators.

Follow Nicole on www.instagram.com/conversationswithasendmum for exclusive peeks to weekly episodes. Please do send feedback and rate this podcast to help it reach those who would benefit.

Check out our Season 3 sponsor Rachel's 3 R's Subscription Box: Dedicated to helping SEND mums feel calmer and more relaxed by providing a box of products and online support for self-care. Follow on www.instagram.com/rachelsthreerssubscriptionbox and use the code NICOLE10 for 10% off your first order at https://rachel-s-three-r-s.subbly.me/

Check out our Season 1 and 2 sponsor The Super Sensory Squad who support kids in understanding the eight sensory systems and emotional regulation using their penguin squad at: www.thesupersensorysquad.com and www.instagram.com/thesupersensorysquad

Transcript

2:08

Hello and welcome to Conversations with an SEND Mum with me as your host, Nicole Bateman. Today I am joined by Michelle from Arfid Life UK. welcome, Michelle. Hello, thank you so much for having me. You're very welcome. So Arfid, This is something that we haven't really fully discussed yet on this podcast. I connected with Michelle on Instagram and I was like, right, you need to come on this podcast because she does loads of great things to advocate for kids and spread awareness. So Michelle, first of all, can you tell me what, you neurodivergent community is? So yeah, ever since a young age my son's eating, it's never been ideal. It's always been very sensory led, hated anything in his mouth, even down to hated having his hair washed, didn't like it being brushed. He was the rocker in the high chair that would go from one side of the room to the other. He always had them sensory issues. So when kind of the food started to get introduced. He was fine with the purees, wasn't too fussed about touching them because that was wet, but as soon as we started to sort of introduce that whole lump and bump and texture, it just kind of went downhill. And then, yeah, gradually over time he had a lot of complications at birth. He was quite poorly when he was young. So he was thankfully under a pediatrician who referred him to a dietitian, I think he was only about 18 months old. So we'd kind of had that early on fussy eating recommendations, which I think now looking back, I knew now it's definitely not going to work, but obviously you give it a go back then. during all that time we moved house and a dietitian did mention Arvid. I said it quite vaguely, he was, a lot of children have it, but there's not much help out there, you know. Diagnoses are quite hard and I thought, well, it's going to give me a push to have a look into it. And from that, and then over time, I suppose, he's eating drastically dropped. Having blood tests and stuff, his iron levels is very, very low. And it has been for, I don't know, it must be coming up to three years now. Like it's just not getting any higher, even on medication. where he's lacking so much variety in his diet, his levels are just hanging in there, his weight's been faltering. He's kind of hovering along the line. all the markers are there for Arfid. we ended up having a private diagnosis, and at the same time they diagnosed him with sensory processing. they do come hand in hand, if you've got general sensory issues, Anything in your mouth, even kids brushing their teeth, you know, still struggling now to brush his teeth, but he's getting better. my son gags a lot when he brushes his teeth. It was the taste of toothpaste as well, isn't it? It's quite strong. That sensation anyway, Isn't pleasant. And I think. All them triggers were there, and then as time's gone on, he's also been diagnosed as being autistic. It was just trying to get them all slotted together so that we could go, right, this is your little bubble. But his ARFID outweighs everything. Yeah. absolutely. It's great that you understand him, how he works, how he processes, why these, these things that you've seen throughout from right from young age have come about. So it's really good to, I'm a massive advocate for getting informed and understanding why. I think that's it, isn't it? It's looking into it. On a deeper level, so I think people go, Oh, they've got sensory issues and it's like, well, in what context has he got sensory issues? You know, he's, he's very, I don't think he can understand, he's like, he's thirst and he's hunger cues. He's always hot but actually he's freezing cold. his temperature gauge is completely out. It's taken me a very long time to work that out and we'd been out before and he's been wearing shorts and he's like, I am so hot and it's snowing. So then I have to flick what I'm saying to be able to get a pair of trousers on him so he understands that the trousers are going to make him hot. he just works backwards and it's taken us such a long time and a lot of research. A lot of time and effort to be able to be like, okay, so how does your brain work? And how can my brain work? So that we can connect on a level that I understand. Definitely. And that is absolutely key. That is so key. there's a lot of kids, that find their interoception, their inner body listening to all of those things, super tricky. And also, the sensitivity, sensory sensitivity to food is very common, where this is, my question is, restricted eating kind of due to sensory, where's that? Where's that line? Can you, first of all, I should have asked you this at the start probably, but Avid, what does AVID stand for? And then also where's that line do you think? Like differentiates, between, autistic eating, I suppose, and ARFID. ARFID stands for Avoidant Restrictive Food Intake Disorder, which is to do with sensory issues. It's like the taste, the texture, the smell. It's also having that fear of food, so it could be, like with my son, he blamed his throat when he had tonsillitis, so that's triggered a fear response to swallowing. And also, they have zero interest in food. Absolutely none. Like, I could have a whole table full of food, from sweet chocolate. You know, anything, anyone, a kid would dream of, he don't care, he doesn't care there's food on that table, he just sees it as nothing, doesn't see it as it needs to be consumed, he thinks I'm strange for eating, one of the criteria is to do with like the nutritional deficiencies. It is, you know, they're normally low in iron, you might find their B12, at one point his B12 was really high. Their vitamin levels are really up and down. But then I know children actually, that their vitamins or their blood levels comes back okay, which you think, well, how does that? Yeah, in your head you think, well, you're cutting out all of these food groups. How can you have a good result in your blood? But people do have it. And also it's the weight as well. although with that, I do wonder if over time, the criteria will change. I think there is a lot of kids it's normally if they're underweight. They'd be like, oh, you know, they're underweight because they've got ARFID but my son's kind of just carried on on the centile He's kind of hovered up and down. He gets poorly, he drops, he puts weight back on, he drops. It's just like a complete zigzag. So I do think it is with, I suppose really the difference with it is how restricted are they? How restricted are their food groups? Have they really just gone down to? only crunchy food or crisps, biscuits, really stuck to one thing. kids we've offered in general don't tend to have fruit and veg because fruit every day, every hour, changes, a strawberry changes so quickly and a grape they all look different throughout different times of the day. Whereas a Pringle looks exactly the same when you put it out of the tub, anything coming out of a packet, that packet looks the same, nine times out of ten, and the food inside's the same. So it's that sameness, it's that safe aspect of it. I do think it's really hard to tear apart if it is just restrictive eating or ARFID. if they've already got an autism diagnosis, it does seem to be that it's got to be like the extreme end of the scale for them to say it's ARFID. at the minute there's not really much research, no guidelines, there's not really much out there. at the moment, unfortunately, they're jumping at the fact it's autism. Because if they diagnose you with ARFID, you're then going to start, okay, so where's my support? There isn't any. There's hardly any. So I think at the minute, it's quite unknown ground. And I think they're holding back most probably diagnosing people because they know there isn't the support out there. You know, there's families crying out for help. Like me, I'm crying out for help. And I'm still here trying to battle it on my own. it's intense. At the moment it does seem to be that they're just pinning it on autism, but actually there is children out there that are so restricted, so extreme, that it is offered, but I think they're just really wary of actually giving it a name. Yeah, that's so sad, isn't it? Families need that support and there's different ways, of because the traditional view of society for kids, we've got to eat all the things on your plate. Otherwise you can't go to bed. you've got to have your dessert. That piling pressure on kids who have a restricted diet or, ARFID is worse because if we put pressure on kids, they become more dysregulated and their sensory sensitivities increase Their nervous system is on high alert. Therefore, they're not going to be able to eat as much as. if they were regulated. So it's trying to bash through some of those things of those typical, oh, they're just being fussy no, like literally they need that predictable same food, like you said, that particular. texture, or taste, or smell, like you said, all of those different sensory things play apart. And with support, so you said there's not really support. Yeah, very, very little. what support do you get when you get that diagnosis? So for us, we paid privately in the end. I think because we've moved house, we fell into this loophole of we got discharged from one service rather than transferred. So we were just stuck in no man's land. And that was when I did the whole research and was like, if I can get a diagnosis before we go into a pediatrician appointment, I can go in armed. But actually it backfired. We had, referrals to speech and language refused because he had ARFID. Tried to get, yeah. So the problem we was having was because he was diagnosed, instantly they were saying no, because they know that they don't know what to do. So part of me does think, should I have actually got the diagnosis or should we not? I suppose it's too late now. He's got it and that's it. And now it's to the extreme where it's obvious. But you know, for us, he is under a dietician and they do keep an eye on his weight at the moment he is on supplement shakes. And he's on a lot of vitamins and minerals and medication for his iron and constipation I think the poor child's got more medicine in him than anything else, but I think the biggest thing that's helped us is, and it's the hardest, is stripping back, like you just said earlier, stripping back that pressure, stripping back the anxiety levels. It's taken me a very long time to not say to him, what do you want to eat? And it is hard. Like now we go by, he's got like one of these little car plates that's got the sections in it. at the minute, he licks a lot of food, which I think is part of the autism. He likes that feeling, which is a good thing. He's getting taste. feeling for something. He just won't physically eat it. So I put it on his little car plate and we have a laugh and I drive it to him. When he was eating yoghurt before, I'd always put a yoghurt on there and then some snacks, whereas at the minute, we're completely off yoghurt. But they are dotted around my house. They're kind of here, there and everywhere, just in case he changes. it is stripping back that pressure, and I think that is the hardest thing. even sitting up for dinner, like last night with my husband and my daughter, who's older, on the tip of my tongue. I was going to say to her, make sure you eat all your dinner or you're not going to have dessert because it's so hard not to do it. But I didn't say it. My husband did instead I gave him massive daggers and was just like, we spent all this time not saying it to our youngest. What are we doing? It is so hard trying to change your mindset around food and I think bringing up a child or, just being around your family in general, Everything sociable is food. You go out for dinner, you go out for the day, you're going to have lunch. it's a birthday, you have a birthday cake. he picks a birthday cake he likes the look of, blows the candles off and then he can't wait for me to get away from him. it's all the little social situations that you don't even realize are massively impacted. Yeah, that's a really good point. Like you said, a lot of our social interactions are linked around food. Yeah, and I want to come to the point of siblings. So, you've got your youngest, and he's diagnosed with ARFID. But then your older one is not. She's on the pathway for autism. I don't know if she's autistic and got ADHD. She does display both. but she is very sensitive in her mouth. absolutely hates brushing her teeth, which obviously she will let me do it, but doing it herself, you can see she's just really funny with that taste of toothpaste. Quite funny with the taste and texture of things. It's very hard because we did go through a period of time where I was a bit like, is she trying to follow suit through her own choice rather than it being an issue of her own? And you could see she was copying his behaviors and it was kind of like, how can I explain to an eight year old that although, my son's eating isn't what it should be. And yeah, I think if she wants to go down that road, knowing now what we're going through anyway, she's a restrictive eater. She's always been very choosy on what she eats. but she does have food groups, you know, she eats fruit, veg, whatever. She'll eat what I cook for dinner. But it is really hard. Because she does. But it's trying to strip it back from her as well. And I think even she might have a bit of PDA, which obviously is quite hard. The demand problem we're having at the minute with that is really hard, and I think that's why a lot of the time she won't brush her teeth, because she knows she has to do it. So that puts up massive barriers. But equally, she is also being quite handy with his eating. She's been drinking smoothies, and as of last week, he actually started drinking one. That's only because he's mirrored her. And he never would sit up the table with us for dinner. I've never asked her to. We set the table up. I always set him a space still, knowing full well that he ain't gonna sit there. I put a knife and fork there and I put a yogurt. All of it goes back in the drawer and the yogurt goes back in the fridge. But, she started saying to him, you know, Oh, dinner's ready. Are you gonna come and sit with us? And lately, he said yes. And he comes and sits next to her. He plays on his Nintendo, which I know a lot of people are gonna say, No screen time with eating food. But if he goes in my house, he can look at the screens, he can draw, throw stuff at me if he wants. I don't care if he's up the table, that's a big win, But actually, he's getting more comfortable being around food. Because of his sister. And I don't think she's realised, the only reason why he's set up the table, is because she's asked him, it's not come from me. So it has, it's really hard, because then, equally, he is set up the table, and then in my head I'm thinking, you really need to eat your dinner. But then I can't voice that, because obviously that's pressure. Yeah. I hold my hands up. I am great at giving zero pressure to my son. The anxiety level is completely gone. It's fine. But with my daughter, it's funny. I'm finding it hard to mirror that and I don't know why. I've only really noticed it in the last month or so and I think, why am I finding it so hard to do with her? But I think it's because when she's getting older, obviously, there is other eating disorders around and she gets very anxious eating at school. School scenarios with food is a whole Another ball game, isn't it? You know, there's holes and all stuff like that. Echoey holes, sensory overload, yeah. Yeah, and that's what she has at school. Whereas actually, considering he's got AFID very extremely, he actually manages all right in school. Goes into the lunch hall, he's not bothered about the smell. One of the teachers has started taking him off so he can play Uno, a couple of days a week. But actually, he doesn't struggle in the lunch hall. They are polar opposites and they always have been. They're the complete opposite end of the scales, which is the same with Arvid. Not one child is the same. we're unfortunate at the minute, he physically doesn't eat food. But you can find someone else, the kids might eat, five or six different things of the same variety, but they won't drink milk, they'll only drink water. every single kid is so different. And the same with autism, isn't it? Same with anything. No one's the same. No. and that's why, it's all those individual needs that we've got to work out. with the super sensory squad, we tell people we've got to work out, I can't just say, get this and this for your child, because you've got to know, you've got to understand what are they seeking? What are they avoiding? where are the sensory sensitivities? What regulates them? And then you can work out what things will support them with their sensory needs in general. Think individually. And like you said, when you have kids that are very different try to not put the pressure on, my son, will spit out food if the texture is not what he's predicting. we don't tell him off because we understand that he's got sensitivities in his mouth. it's a sensory thing that he's spitting food out, not just to spit it out. But then when my daughter does that yes, I think she's got some sensory issues, but not necessarily the same. is she just copying him? Is that actually something? it's so hard as a parent, To navigate how you parent. Every day is so different. even with what my daughter eats. One day she might eat hardly anything for dinner and I think, oh well, you might not be very hungry. Other days, like one day last week, she ate all her dinner and then started eating mine and I was like, I'm hungry. You know, and it's the same with my son. When he was having yogurt, sometimes he was having like 15 yogurt tubes a day. And I was like, why are you eating so many? You're going to explode. And then the next day I'd only have two. It's your mood, isn't it, if you don't feel very well. It does knock it all completely. Definitely, that fluctuates and changes. Yeah, everything does change. your sense of smell can change when you don't feel very well. I think it becomes very heightened. Everything around you, isn't it? It all becomes quite a lot. Yeah, and to navigate that as a child and then try to work it out as a parent who Trying to work it out on the go as well, I think, is the hardest part. Because, there can be like a light switch. he can be absolutely fine one minute and then he flips. Yeah. Got to adapt. Hang on a minute. We need to calm you down first. We need to come back down to a level to be able to get the food tray out so we can do some sensory play with food. We can't do that if he's not in the right mindset. And sometimes he wants to do it off his own back, which is perfect. But it's not always. if we're not regulated, then we're not going to, this is what I say about at school, for example, if kids aren't regulated, they can't learn, or they can't access certain things, their sensory motor things, they can't use a knife and fork if they're not regulated. So regulation, generally, in society. in life. is key. As a parent, you know, I get on with it. I get dysregulated and I don't even realise, I get to I think I feel like I'm a firework. I feel like someone's going to start blowing me up outside. you can feel it boiling, for most probably no reason. absolutely. You just get so overwhelmed I think it was Saturday, I was eating dinner and my husband was out he sat at the table with us and did absolutely nothing wrong. He just sat down to eat dinner. She sat down with him. Kid you not, I burst into tears. I was sobbing. My daughter was like, Mum, what's wrong? And I was like, I actually don't know. And I think because he sat up at the table was such a happy thing. But then in my mind, I'm thinking why are you so scared of food? Why is it so scary? Why are you so scared of swallowing food? And it was like my heart, half of it was so happy because he was up the table and then I was heartbroken. I was eating my dinner sobbing sometimes you build everything up, you hold everything in, you don't voice anything and you pop. unfortunately that was me at my dinner on Saturday. I exploded all of this emotion through I'm so proud of you for sitting up at the table. Yeah. Someone help me get rid of this trauma. Oh, if I could just get rid of that fear of swallowing food. I think over time, I think he would eat. His trauma and his fear is so strong, I can't get rid of that. That must be, I mean, I'm sure people listening will resonate with what you've just said massively. And it comes out of nowhere, you know. I've even walked around a supermarket and there's parents buying their kids this food and, what do you want, what do you want? I would love to cook him dinner. I would love to cook him, even if it was a slice of toast. I would love to cook him a meal. I couldn't tell you the last time I cooked him something I don't think most probably ever have because it's just not ever been there. I can't remember the last time he ate, oh he's never had fruit or veg, only when he was being weaned and even then he hated it. Pictures and stuff as you started progressing through weaning, he hated it. the silliest little things that people take for granted. are huge. I can't go on holiday, can't take him abroad because he ain't gonna eat. people don't realize the implications of that unless you live it like yourself. we have been through a phase. He'd only eat if I was at home, which obviously isn't ideal because then I can't go anywhere. So that was becoming an issue, but he's getting better. if we go out for days, he won't eat. Unless he feels really, really safe. we've had a conversation as we're wandering around maybe walk past the picnic area to be like, shall we eat there later? To prepare him for where we could be going. he might drink his milk. a lot of the time it's that forward planning. It's the, where are we going? What restaurant have they got? Is it going to smell? Is it going to be busy? Can we sit outside where it's windy, where there is no smells? All of them things are a massive build up. So from the outside, I look fun, you know, I look fine, I look like having a great day out. But inside, my chest is pounding, I feel like I'm going to throw up. and you've got all of those things that you're holding and that you're planning and that you're thinking about, no wonder you cried on Saturday at the table. Like, I think it's fair enough. It must have been a couple of years ago when he was eating a select amount of food, which was dry, all in packaging. So we took it to Disneyland because we knew we could drive over, load the car up with safe foods. I was so stressed and so panicked. And obviously it consumed my life so much. As soon as we stepped foot into Disneyland, I was really ill and my body just went, hang on a minute, shut down mode. And I felt so sick. I nearly passed out waiting for a princess because the stress had built up so much it was horrible. We had a fantastic time, but the buildup of worry like, what if we run out of this safe food? Like, what's going to happen? Like, yeah, it was a bit like, where can you buy in France? Yeah. He was at the time, like eating wafers. I think I've got a hundred of them in the car. Wow. There's no way he's going to eat a hundred, but You never know. And if I run out. There's nowhere that's going to buy them. It's bonkers. well done for getting those 100 wafers over there and all that prep. all that prep and all of those things that people don't have the prep. I do think it's that. It's the background work of preparing everything so that you can go out, Everyone says, the older your kids get, you take less stuff out. And I'm like, I have ear defenders, sensory fidget toys, flasks of hot water, refrigerated bag with milk in it, bottles. all the foods that he would lick. I have a backpack full. Yeah. I thought, Oh, maybe one day I'll go out with a handbag. I haven't had it yet. No, you're still waiting. I'm not there yet. No, so for those that are listening, I'm sure this is a super helpful conversation for many. I'd like to finish with a bit of hope what is something you want to, just, just end with and then where they can find you to connect with yeah. Just remember that you're not alone. There is so many people out there, even if it is just, you think is restrictive eating, talk to someone. I have found the biggest thing out of all of this is the community that I've built from having that conversation with someone who understands, to a friend I've known for years, if I say to them, Oh, I just had a sip of smoothie, they're going to be like, really? They're just going to look at me like I'm crazy. Whereas I'll tell someone else whose child's a really restrictive ETA or has got ARFID, they celebrate that win just as big as I do because they know how much that means. And it is, it's that. I think it's just don't feel like you're alone. Fight for your child. Don't take no for an answer. I definitely haven't. It's been a long hard road and a lot of services around here know I am, just because I'm not backing down. good. I've seen them hard and I think it's starting to annoy them a bit, but that's fine. You've just got to advocate for your child and I think because there's so little around with ARFID, the more we all stick together and share stories and raise awareness and even just The simplest of conversation with someone can make such a difference. You know, someone sent me a message on Instagram and was like, Oh, someone's going to the doctor's. What do I do? And I was like, well, take this with you. Take that. Take a food diary. Write everything down. She was like, I didn't think of doing all of that. sometimes asking someone who's been down that road will just give you that one thing that could make such a difference. And I do think a lot of that is most probably the best advice you could ever have from anyone is just talk to someone. Find someone who understands whether they're miles away up the country or they live around the corner. It doesn't matter where they are, everyone's got phones and social media. I'm on social media, you can find me on there. It's rfidlifeuk and my inbox is open to anyone. I get messages all the time and I don't mind. I think at the end of the day, talking is most probably the best thing for anything. And yeah, you're not alone in this journey. Thank you so much, Michelle. I've absolutely loved chatting with you and thank you for sharing so honestly and openly because I'm sure this is going to help so many people not feel alone. Thanks for a lovely chat. It's been great. remember that each Wednesday there is a new episode of Conversations with an SEND Mum podcast. You can find it on all the podcast channels. Remember to like, review and share it. I will see you next week.