In this podcast series ‘Autism, a parents guide’ freelance journalist Jo Carlowe speaks to experts about autism.
Episode 6 with Dr. Vicki Ford looks at food sensitivities and proclivities, how to build a healthy relationship with food whilst understanding the challenges for many autistic children.
They discuss some difficulties that may arise including ARFID (Avoidant, Restrictive Food Intake Disorder), tips and advice for sensory difficulties and strategies to diffuse conflict at mealtimes.
We are delighted that this podcast series for parents is supported by the Autism Diagnostic Practice at Clinical Partners. Working nationwide with only the most experienced consultants, Clinical Partners ensures you get the best ASD diagnosis and help tailored specifically to your child, as fast as possible. Discover more.
A great website and free app aimed at supporting parents’ understanding of children’s feeding behaviour, along with lots of practical advice about improving mealtimes.
- “Food Refusal and Avoidant Eating in Children: including those with autism spectrum conditions” by Dr Gillian Harris & Dr Elizabeth Shea
A very accessible new book which explains well why some children find eating and mealtimes so challenging; lots of practical advice and helpful suggestions parents can use to improve their child’s feeding.
- “The division of responsibility in feeding” developed by the Ellyn Satter Institute
Lots of helpful information and advice around making mealtimes a positive and stress free experience for the whole family. She has lots of practical advice to help parents reflect on their own relationship with food and to empower them to foster lifelong positive attitudes to food in their children.
A charity dedicated to raising awareness of ARFID and promoting current research and resources. They host two online support communities, one for parents of children with ARFID and one for professionals working with children with feeding difficulties.
Other Podcasts in The Series
Vicki is a Clinical Psychologist a specialist in ASD and part of the complex feeding team at Evelina London Children’s Hospital. She’s worked in both community teams and hospital settings now she works in a multidisciplinary team taking referrals from paediatricians primarily in the south-east of England.
Interviewer: Hello, welcome to the latest instalment of the special ‘In Conversation podcast series for the Association for Child and Adolescent Mental Health, ACAMH focusing on autism spectrum disorder. I’m Jo Carlowe, a freelance journalist and specialism in Psychology. Today I’m interviewing clinical psychologist Dr. Vicki Ford who is a specialist in autism spectrum disorder and part of the Complex Feeding Team at Evelina London Children’s Hospital. This podcast is supported by clinical partners. Today we’re focusing on food sensitivities and proclivities in autistic children looking at how to build a healthy relationship with food whilst understanding the challenges for many autistic children, Vicki, welcome. Thank you very much for joining me. Can you start by introducing yourself?
Dr. Vicki Ford: Yes, hi, and thanks so much for asking me today to talk about feeding difficulties in children with autism. It’s definitely an area I’m really passionate about, really working to improve the experience of young people and their families. So I think we realised how tough things can be for them actually with feeding. So I’ve been working as a Clinical Psychologist specialising in autism spectrum disorders since 2012 and in that time I’ve worked both in community teams and also in hospital settings.
So as you’ve mentioned I’m currently the Clinical Psychologist in the Complex Feeding Team at the Evelina. So I’ve been there for the last three years. We’re really lucky in that we are a multidisciplinary team. So that means we’ve got a paediatrician, psychologists, speech and language therapist, occupational therapist and of course dietitians in our team and we work really closely together. We take referrals from paediatricians primarily across the southeast of England but sometimes we see children’s sort of from right across the UK. Yeah, so that’s me.
Interviewer: It sounds very busy. Now food overlaps with many aspects of life that challenge the coping skills of individuals on the autism spectrum. Can you talk through some of the difficulties that typically arise?
Dr. Vicki Ford: Yes. I think that’s a really good observation actually. I think probably one of the biggest factors is around the difficulties and flexible thinking for children and people with autism. So for most of us a piece of toast is a piece of toast. However, for some people on the autistic spectrum that’s genuinely just not the case. So when you stop to think there are so many ways one piece of toast can differ from another. For example, is it made with white bread, brown bread, 50/50 bread.
You know, has it been lightly toasted? So it’s only beige in colour or has it been toasted until it’s sort of dark brown. You know, we might think oh it’s fine. I’ve cut the toast into quarters just as the person likes it or just as the child likes it, but they might be having a really hard time actually recognising that these four triangles in front of them are even the same food as the four squares of toast that they’re familiar with.
So I think that this is something that some of the parents listening will really be able to identify with and it’s important for people around the child to really appreciate that this isn’t them being fussy or difficult or, you know, being sort of challenging to, kind of, annoy people. This is actually really linked to their tendency to focus in on the detail. So they would sort of tend to see the specifics rather than sort of being able to make sense of the whole picture and perhaps a way that are neuro-typically developing person or child would be able to.
Interviewer: Is that the different then because lots of young children can be fussy or faddy about food? Is that kind of the level of detail the thing that differentiates a child with autism who has some issues around food as compared to a kid that’s just a bit fussy?
Dr. Vicki Ford: So becoming more selective about which foods they will eat is a completely normal developmental stage that most children will go through. So it’s called developmental food neophobia, and that simply means that children become more wary of eating new foods and sometimes a bit, sort of, start refusing foods that they’ve eaten happily before.
So I’ve heard it referred to as new means no actually which is quite a good way of sort of thinking about it, and it’s s fear-based response and it tends to occur most commonly in toddlers. So it’s at its peak at around 18 months to two years old and I think it really starts to occur as children become more aware of the sensory properties of food.
So they’re sort of becoming more sort of aware and interested in the appearance, the smell, the texture, the taste of a food and this is a response that evolved to keep us safe when our ancestors had to forage for food. So obviously there weren’t any supermarkets. There weren’t any best before dates and so it really made sense that if a food was unfamiliar, so come across some berries on a tree that you haven’t seen before, you know, to be a bit cautious or perhaps if a food looks similar to a food you’d eaten before and that had made you ill or even a food that perhaps had a bitter taste which can be an indicator that food might not be safe to eat it.
You know, it did make sense for people to sort of be a bit hesitant before sort of eating a lot of that new food and also there’s quite a social response. So we’re more likely to eat a food that we sort of see others in our kind of social group eating on the whole because that indicates that it’s a safe food to eat, but with repeated exposure over time to a range of family foods most children will sort of gradually, you know grow out of that sort of response and they’ll broaden their diet.
By the time they’re sort of starting school, kind of around age five they’re usually more willing to give new foods a go, but for children with autism it’s much less likely to happen without considerable, sort of, hard work by parents and sometimes by professionals and I think really that’s probably for several reasons.
So the children with autism, that sort of concrete, rigid thinking style will persist and makes it harder for them to sort of broaden out the categories of foods they eat as we’ve sort of talked about. Also children with autism might be less able to learn from copying others eating behaviour and in some cases they can find the social aspects of mealtimes incredibly stressful. So means they’re sort of actually motivated to avoid eating around others at all.
You know, we often work with young people who can’t come to the table at all and the family are eating particular meals or they can’t go into the kitchen when, you know, parents are preparing certain foods or they have to eat in their bedroom, because that’s the only way they can keep their anxiety low enough to be able to eat at all. I think it’s important to say here that’s sort of typically developing children, you know, will tend to gradually sort of lessen over time, but for some children their difficulties of feeding will be so severe that they meet criteria for a diagnosis of ARFID.
So ARFID stands for Avoidant Restrictive Food Intake Disorder and that’s actually a relatively newly recognised condition. So it was first defined in 2013 and what our food means really is it’s a description of feeding difficulties. So might be an apparent lack of interest in eating or food. A sort of avoidance of food based on some of the sensory characteristics or a concern about some of the negative consequences of eating.
For instance, may be a fear of choking or a fear of being sick, and in order to be given a diagnosis of ARFID the feeding difficulties must be severe enough that they’re impacting the child’s ability to meet their energy and it’s and or their nutritional needs. So what does that look like in sort of reality? So typically either weight loss or perhaps for a child because it might be faltering growth, so they’re not kind of growing as you might have expected really.
The nutritional deficiency a lot of the children we see because of the sort of types of foods they might be quite low in iron, which can then obviously be having an impact on their development and having an impact physically. In sort of severe cases the ARFID could mean that the child is dependent on a sort of alternative source of feeding. So sort of tube feeding if their intake is so limited and the other sort of thing that’s really, I think ARFID is a really helpful diagnosis in that it recognises that feeding difficulties also cause difficulties in psychosocial functioning.
So in practice that means everyday functioning. So we often see families they can’t go out to restaurants to eat because their child just wouldn’t eat anything on the menu. They can’t, kind of, go to family celebrations at family member’s houses because the child wouldn’t eat any food or perhaps couldn’t even cope with the family eating other food watching that, and we often see families in clinic who are sort of taking whole suitcases of their child’s safe and preferred foods away with them when they go on holiday because, you know, they’re just terrified that they might spend two weeks in another country without any food that their child would eat.
Interviewer: To get that diagnosis presumably the first port of call would be your GP, would it?
Dr. Vicki Ford: Yes. Exactly. So I think for parents sort of listening today who sort of feel like yes, that sounds like my child. We are really struggling with this. I am concerned about their nutrition. I am concerned about their growth. Yes, we would absolutely say talk to your GP and they should have a good understanding of local services. So in sort of recent years since I started working in this area there had been huge positive development in local feeding teams.
So often local feeding teams they might be led by dietitians. Children’s dietitians who would have a good understanding of whether children are meeting their needs and would be able to support and offering advice about supplements or monitoring growth, but often these local feeding teams will be multidisciplinary. So they’ll have occupational therapists who can advise around, supporting around sensory properties of food and sensory difficulties around meal times as well.
Interviewer: That’s really helpful. I want to look at the advice that you have for parents or carers who find aspects of this frustrating or upsetting. So you’ve talked about that level of detail. My understanding is that children on the spectrum might also be extremely sensitive to flavours, colours, smells or textures of food or perhaps a very narrow selection of food which you’ve already implied. What advice do you have for parents or carers who are coping with this or trying to cope with this?
Dr. Vicki Ford: Yes, definitely. I think as many parents and people who work with children on the autistic spectrum will just be only too familiar with research really recognises that up to 90% of these children will have sensory difficulties and that can make eating really challenging with food texture probably being recognised as one of the main factors that foods are rejected. So, you know, we often see children who are so highly sensitive. They even find watching others eat food distressing.
So ones that a father described his daughter going completely pale and being terrified because her brother was eating porridge which she finds the texture of very difficult, even though there was absolutely no expectation that she would have to eat any porridge. So that’s just how sensitive and I suppose an example of just how sensitive children can be. So as a parent I completely understand how frustrating it can be when you’ve spent a long time preparing a nutritious healthy meal and your child refuses to even try a little bit, but I think my advice for parents and carers would really be to try and think about the situation from their child’s perspective.
So some children will actually be able to tell parents what it is they find difficult about a particular food and usually in my clinical experience it’s sort of foods with mixed textures. So that means things like lasagne or a fish pie, a sort of spaghetti bolognese sauce, and it’s sort of really thought that because the textures are mixed up it’s very hard for children to be able to pick out individual ingredients within that food and then to decide whether or not those ingredients fit into their safe categories or not.
So how can they trust that a food is going to be okay to eat if they can’t really work out what’s in it. I think that’s sort of part of the reason that children can become so stuck on processed foods because if we sort of think about it one McDonald’s chicken nugget is pretty much exactly the same in sort of appearance, taste, smell, texture to another McDonald’s chicken nugget in a way that parents often say, but I’ve made chicken nuggets at home and I just don’t understand why they won’t eat them, but often it’s because each chicken nugget will sort of be so different from another one.
So I think for parents my advice would also be really to consider the sensory properties of foods that their child can happily eat. So a considerable proportion of the children we see in clinic are beige eaters. We’ve sort of described them as. So they like dry crunchy foods.
Foods without any sort of bright smells, sorry bright colours or strong smells and I’ve worked with quite a few children who are really sensitive to temperature as well. So one of the first children with autism that I worked with, sort of, well over 10 years ago now he would only eat cold cheese sandwiches and his mum very much understood that not necessarily because of around the temperature of the food, it’s because the smell of a food is much stronger often when it’s heated up.
So I think for parents it’s really important to sort of work out what it is that their child finds difficult in relation to the sensory properties and what it is they can cope with. I think the other thing that’s really important as well is so parents have a good understanding of the sort of external senses we use to take in information about the world around us. So our sense of sight, our sense of touch, for example, our sense of smell, but also we have senses that help us to understand the processes and information from within our body.
So one of those is the sense of intraception which includes being aware of sort of feelings of hunger, feelings of fullness. The sensation of needing to go to the toilet and a lot of children with autism actually seem to have real difficulties with their sense and actually very poor sense of their own intraception and what’s going on within their bodies and this can mean that, you know, they perhaps just wouldn’t eat without external prompting. So they understand that they’ve got a kind of uncomfortable feeling in their tummy, but they can’t make that link with eating and feeling better. So I think it’s really important for parents to think about that as well.
Interviewer: So the parents sort of have to regulate[inaudible 15:54]?
Dr. Vicki Ford: Yes, exactly. These children often wouldn’t eat without either prompting from a parent or a caregiver or from sometimes external cues in the environment. So perhaps the bell ringing at school. They understand means time to eat.
Interviewer: I’m wondering for parents who have children who have perhaps these strong preferences for processed foods as you’ve mentioned and the rejecting nutritious options should a parent try to help their son or daughter to eat a more balanced diet or is that a battle too far?
Dr. Vicki Ford: Yeah, I think that’s a question we’re often asked in clinic. I think it’s a really difficult balance that parents are sort of trying to tread really. I think my message, my main message to parents would be to always enjoy each and every mealtime and snack time their child is presented with at least one familiar food. So something that they feel really safe and comfortable to eat. So I know that that might sort of seem counterproductive to broadening their child’s diet.
Sort of always offering something familiar, but actually I think parents, you know, when we talk to parents they’ve got such a good understanding of their own children and they’ve received so much sort of, you know, very well-meaning advice over the years about oh, well just you know, don’t sort of offer them anything else and they’ll eat it. You know, they’ll eat when they’re hungry and I think the parents of children with genuine feeding difficulties really know that that’s actually not the case and that sort of, you know well intentioned advice but just isn’t going to work for their children and I think the risk of withholding preferred foods is that the child just refuses to eat and then they become quite unwell or dehydrated and we know that children with feeding difficulties find eating at meal times incredibly anxiety-provoking anyway, and by taking away their safe or preferred foods you’re only going to increase that anxiety level further. So we also know that in a very stressed state there is physical chemical changes that happen in your body to reduce appetite and switch off your digestion.
So it sort of makes this sort of anxiety, higher anxiety level makes it harder and even less able to eat then as well. So we often talk to parents about that. We sort of say think about a time you’ve perhaps felt very stressed out, you know job interview or being late for something really important and, you know, if someone offered you a meal, a big meal even something you’d really normally look forward to like a roast dinner would you be able to eat that meal and parents say definitely not.
I’d feel really sick. I’d have butterflies in my tummy. So we kind of get them to think about again the experience of the sort of anxiety level at mealtimes from their child’s point of view, but having said all that we do, we completely understand it’s really important to help parents. Hold on to the hope that they can help their child to make some changes. So as we’ve sort of talked about earlier the key to sort of introducing a new food is really to do that kind of very gradually, playfully and really without any pressure to actually eat the new food or taste a new food.
So, you know, thinking about the sensory properties one of the children who eats mainly dry crunchy, beige foods a parent could start thinking about introducing sort of dried apple crisps. You know, if they eat crisps happily. What sort of foods that are very similar, but perhaps would get more fruit and vegetables in. So a parsnip crisp.
The really important thing is not to trick children and I think again parents of children with feeding difficulties completely understand this. They’ve often tried this in the past perhaps out of necessity. They’ve ran out of the preferred brand of bread. So they’ve bought some new bread and put it in the old bread bag and children absolutely know at a hundred paces that bread is not the same.
So we would always sort of say when parents are introducing a similar food with sort of similar sensory properties to be really open and say this is like the food you like but it’s not the same and really for parents to think about the possible risk of contamination there because what you don’t want to do is contaminate the safe food with the new food. So parents would be aware of their own child’s level of sensitivity., but you know for some children you might be able to introduce the new food on a plate next to the plate with the preferred food on. Whereas for other children you might need to actually introduce it at a different time of day to help them make that distinction.
Interviewer: You mentioned a different time of day. I want to look at routine. How does the need for, or might, the routine play out in terms of ASD in a child’s relationship at mealtimes?
Dr. Vicki Ford: Yeah.That’s a really important point I think. So many parents are really well aware that children with autism often find transitions and change really difficult, and this sort of need for routine and structure can sometimes have a positive and a negative impact on their relationship with food. So, for instance children, as we’ve sort of said can be really stuck on eating and a particular food at a certain mealtime or they can become really fixed on the visual appearance of a foods packaging even.
Then this kind of causes huge anxiety when that particular packet, you know food isn’t available or the packaging is updated even. We’ve had children reject food based on the updated packaging when they haven’t actually changed the recipe of the food at all. I think that’s something parents definitely will recognise, parents listening, but parents can also use the child’s need for routine in a sort of positive way. So one example we often use with parents and families that we work with in clinic is to set a sort of beginning, middle and end routine for mealtimes.
So depending on their child’s age and abilities the routine might look something like wash your hands, come to the table. Help set the table. Things like that. The middle would be sort of eating. Serving the food and eating and the end might be sort of to encourage the child to throw away any leftover food because we’ve noticed that actually children can be much more willing to interact with the food at the end of a meal.
So, for instance, they’ll pick up their broccoli. You’d be getting parents to encourage the child to pick up their broccoli and put it in the bin with their fingers, because then you’ve sort of got them sort of getting used to the sensation of the broccoli and them looking at it and things in a way that you know children will do it then, because I think they don’t think their parents are suddenly going to go oh you’ve touched it and throwing it in the bin. Great.
Let’s get it, you know get it out and you can eat it now. You can taste it. Whereas I think sometimes children, you know parents understandably are just excited that their child has shown any interest in the broccoli. So will then sort of perhaps get too enthusiastic and the children can back off.
Interviewer: This is a real logical sort of trajectory to it in a sense.
Dr. Vicki Ford: Yes and also I think with mealtimes and eating it’s often an experience that children find really, sort of, difficult and it can go on and on and I think children with autism can struggle with a sense of time anyway. So I think you know to have a clear beginning, middle and end it sort of helps teach them that this activity is going to stop, you know, or even a sort of first then routine. So first we’re going to do eating.
Then we’re going to play or something like that and it’s not a conditional thing. So it’s not you’ve got to eat in order to kind of get down and go and play. It’s just helping them to realise that there is an end to this activity.
Interviewer: No parent wants to make food a source of conflict and as you’ve said occasionally change will happen and it would be outside of the family’s control. The change of packaging was an example you gave. Can you talk through some strategies that parents or carers cause to help defuse conflict when it does happen at meal times.
Dr. Vicki Ford: Yes, definitely. Conflict at mealtimes is just so tough on the whole family. So it impacts on the child. It Impacts on parents and of course it impacts on any siblings as well. I mean, sometimes mealtimes can just turn into such a battle that the whole family ends up dreading the next meal and I think the difficulty is that, you know, when your child struggles in other areas, perhaps they’re scared of travelling on public transport.
You know, to a greater or lesser degree you can just avoid that situation or you can minimise their exposure. You can travel at quieter times of day. You can, you know, walk instead of taking the bus but with eating it’s just not that optional and I think where we sort of really emphasise things with parents is that along with ensuring the access to familiar foods at every meal we sort of really support them with the need to reduce pressure on their child to eat.
So we completely understand that it’s a parents number one job to feed their child and if their child is either refusing healthy foods, only eating small amounts of food or perhaps not even eating at all it’s just so anxiety-provoking for parents and parents want to do their best for their children. I think sometimes that can sort of lead to them really without meaning to putting quite a lot of pressure on the child to eat.
So sometimes the pressure can kind of come in the form of a sort of coaxing. So just one more bite. Go on just just try little bit. You know a little bit more. Go on. One more spoonful and I think we’ve all done that and sometimes it can take more of a form of bribery and punishment. So perhaps you can’t get down and play until you’ve finished your dinner or come on hurry up and finish your dinner and you can have your pudding.
I think probably a lot of us were raised with that one or you know, when you finish your dinner you can watched telly, but I think in some cases the parents can actually become, you know, in some severe cases really frustrated and stressed about how little their child is eating and this can lead to them force-feeding.
So for instance physically putting a piece of food in the child’s mouth and I think we understand that this really just comes out of the sort of sheer desperation for their child to eat and the understandable worried about the long-term consequences of their child not eating but I think the difficulty is that whilst some of these approaches so, you know whether that’s the coaxing or right up to force feeding they might seem to work in the short term, but what the child has actually learned or what the child’s actually taken away from this is that mealtimes are sort of unpleasant and that can be either an emotional sort of distress, like feeling anxious or it could be an unpleasant physical sensation like being too full or even a sensory, a negative sensory reaction to a food texture. Then we often see families when they’ve become sort of trapped in a bit of a negative cycle. So the child is reluctant to eat.
The parents are understandably anxious. The parent tries harder to get the child to eat. The child experiences that as sort of pressure in a negative experience at mealtimes and becomes more anxious and more reluctant to eat. So then the parent becomes even more anxious because the child has restricted further and needs to apply even more pressure to get the child to eat at the next mealtime.
Interviewer: If someone is locked in that sort of vicious cycle, how can they get out of it?
Dr. Vicki Ford: It’s a really good point. So this is where the division of responsibility and it’s devised by someone in the States called Ellen Satter and it’s when that comes in really. So in clinic we teach parents that they’ve got certain responsibilities for their child’s eating. So parents are responsible for choosing what food will be served. Choosing when mealtimes and snack times are set.
Choosing where the food will be offered but the child has their own responsibilities that they come to mealtimes with. For instance it’s the child’s responsibility to decide whether they’re going to eat at that meal or snack time and how much they’re going to eat. So it’s a really, really nice approach actually because it, sort of, really encourages parents to understand mealtimes from their child’s perspective.
So for instance one of the things she talks about is being considerate of your own child’s lack of experience with the new food and it really supports parents, to sort, of learn to trust over time to learn to trust their child to actually eat the amount of food that they need, and I think often, you know, with children the pressure to have one more bite. I think a lot of us were probably raised with the, you’ve got to finish your plate. Otherwise, you can’t get down but actually what that’s doing is it’s overriding a child’s natural ability to listen to their, we call it listening to their tummy and deciding whether their tummy is full or not and stopping eating.
Interviewer: I’m just wondering here about we’ve talked about the impact on the family and I’m wondering about other siblings. If you’re all sitting around at mealtimes is there any role for other sibling or something parents should think about if they have other children around mealtimes when there’s those kind of conflicts and considerations that arise?
Dr. Vicki Ford: Yeah. I think it is tricky and we often sort of hear concern from parents that are worried, understandably that a sibling,sometimes a younger sibling is copying the sort of food refusal or they’re copying some of the sort of challenging behaviours around food and mealtimes.
So, yeah, definitely and I think it’s also hard for a parent sometimes to explain to siblings why one child might need to eat in front of the telly but they’re not allowed to eat in front of the telly. They’ve got to be sort of up at the table. So I think what we would sort of say is that these approaches around reducing pressure, reducing coaxing, teaching children to sort of learn about food gradually are actually all really good approaches to use with siblings as well.
I think the tricky thing for children perhaps with autism is that they’re sort of perhaps as we sort of mentioned earlier less able to learn from a social model. So often where you have typically developing children, a younger child can be sort of motivated to eat by watching a an older sibling enjoy a particular vegetable or a particular food, but that’s perhaps less likely to happen in a child with autism.
Interviewer: Vicki, what other tips and advice can you share for parents who have children on the spectrum with food sensitivity?
Dr. Vicki Ford: Yeah, I think we’ve sort of just briefly touched on it, but I think it’s really important to mention distraction here. So for the majority of children with only mild feeding difficulties we’d really encourage parents to try to avoid a reliance on distraction to get their children to eat. So I guess we all know that experience and at the cinema with a massive box of popcorn. Then you look down and suddenly realise you’ve eating it all and not really noticed because you weren’t engaging with it and I think some parents, you know, the tendency can be to notice that oh the child has eaten so much better in front of the telly. Let’s just let them do that every day and for children with mild feeding difficulties we’d, sort of, say ideally not to do that really because while they’re distracted they’re not engaging with the food in front of them.
So they’re not learning about the sensory properties of the food. They’re not learning from eating. You know, watching others eat and eating as a family and learning the sort of social social behaviours and things, but on the other hand we’d say for some children with severe feeding difficulties we completely understand that their anxiety levels are so high at mealtimes that the only way they are able to eat anywhere near an appropriate amount of food would be to be completely distracted say buy an iPad.
So in these cases we would never advise parents to withhold the distraction because I think they know we know that the child just won’t eat. So instead what we do in that situation we’d gradually support parents to reduce the reliance on distraction over time.
So, for instance, we might work with them to think about what’s the most difficult meal of the day and often that’s perhaps tea-time at dinner time after school because the child’s just really worn out from school and, you know, being kind of coping with all the challenges of being at school all day so we would say for that meal absolutely use the iPad, but then we would say perhaps start thinking with them okay, maybe at the weekend when there’s less demand to get everybody out of the house quickly. You know, could there be a meal there where the child didn’t have the iPad, so that kind of thing.
Interviewer: What about for older children or teenagers on the spectrum for whom food is difficult? Can you suggest some ideas and coping strategies for them?
Dr. Vicki Ford: Yes, definitely. So when I meet with older children and adolescents in clinic I’m really interested to talk to them about their own experience of the feeding difficulties. It’s so interesting how often they have a really different perspective from their parents and it’s really important to find out how food and meal times are causing stress for different members of the family really.
So for example, some of the young people I talked to they only eat a handful of sort of preferred foods over and over and they’re actually reasonably happy with that because that’s their way of managing their anxiety and it’s working for them, but for the parents it’s a huge source of anxiety and stress because they’re worried about the sort of nutrition and the longer-term consequences of limited diet and it’s causing huge conflict in the family, but for the young person themselves it’s not actually something that they necessarily want to work on changing, but then I talked to other young people who are so bored of eating the same foods and they’re sort of really frustrated. They can’t eat the same foods as their friends. They do feel they’re sort of missing out on not being able to go out to restaurants and things.
So often it’s not until they’re a bit older that young people who are really aware of the social sort of impact of their feeding difficulties. So I worked with one young person who the only source of fruit and vegetables in their diet was the sort of ready-made baby food sort of pouch. The fruit pouch and they’d previously all through primary school being very happy to have that fruit pouch in their lunchbox, but as they were going to secondary school they were worried about being teased for eating baby food.
So they stopped eating the fruit pouch and then obviously that meant that there was no fruit and veg in their diet at all. So we sort of worked with that young person to think about how they could be a bit more flexible and maybe have the fruit pouch for breakfast instead before they went to school or I’ve worked with other young people who are incredibly worried about going away on a school residential trip because they’re just not sure they’re going to be able to eat any of the food available.
So in that case we sort of suggested to the parents that they kind of sat down with school and got the menu in advance and then really worked out with their young person to think about what adaptations they might need to be able to go on the trip. So I think also when I’m working with a young person I always try to think with them about their motivation to change.
So what do they want to be different? I often say, you know, if we had a magic wand what’s one thing you would change and then what are some of the good things that would happen if we could make that change? What’s been holding them back so far, you know so far like this point why haven’t they made this change yet and who can support them in making this change happen, but I always take time as well to think what else is going on in their lives.
So is this the right time to work on their feeding really because, for instance, children might be going through a transition at school or they might have exams coming up and those sort of times of increased stress it is likely that their food intake will restrict even further.
They might become even more reliant on familiar foods to sort of manage their higher levels of anxiety in the rest of their life everything, sort of thing. So I think it’s really important that any goal is really collaborative and meaningful for the young person.
Yeah, so I would also just say that I think what I find sort of really enjoyable about working with older children is they’re actually more able to articulate what it is about food they find difficult. So for example the smell or how the texture might feel in their mouth and we can explore some of the predictions with the young person and then together we find ways of testing out these predictions in a way that feels manageable for them.
So, you know, one young person I work with said I can’t eat vegetables. They feel slimy. I’ll be sick and they were sort of very, very sort of black-and-white about that. So we might in that case start by just looking at photos of vegetables and sort of talking about which ones might have a dryer texture and then we’d sort of move on to actually sort of exploring a range of vegetables by getting the young person to touch them and smell them.
Sort of lick them and things and then we always sort of talk about why it makes sense for us to be cautious actually about unfamiliar foods and how the only way to train your mind to recognise the food as safe is to make it more familiar by, sort of, lots and lots of opportunities to kind of learn about it really, and we always say to parents and young people that for neurotypically developing children with no particular sensory issues it can take around 15 to 20 exposures to a new food before they feel happy to put that in in their mouth and taste it.
So for children with a background of feeding difficulties and autism it can take obviously considerably more sort of exposures for them to get to the same point and I think that’s really important because I think often, you know, children will try something once and then parents say it’s almost the second time is the hardest. Parents kind of work them up to trying it once and then that’s it. They’ll never try it again.
They’ve tried it and they didn’t like it. So they don’t see the point in doing it again, which makes sense, but I think with older children you can explain that, you know, they’re going to need to try it over and over and over and you can also get them to rate their feelings about it over time as well and they can sort of notice any changes in it.
Interviewer: You see all the children broadening the range of food that they’re willing to try and eat.
Dr. Vicki Ford: Yes, definitely but it does take a huge effort from some of them, you know to over-ride. You know, I recently worked with a teenage boy who had the same limited diet of a handful of a few food since a since the toddler. Then it genuinely very scary then to start thinking about eating other foods, but he really understood the rationale of why it was important to do that from sort of a nutrition point of view and he was really motivated to do, that as well.
So, he was prepared to sort of put himself. I think we explain to young people that they’re going to have to put themselves out of their comfort zone a little bit to, kind of, learn about some of these things but that actually that will pay off, you know in terms of achieving some of their goals, but I think it’s really important to link any work that you’re doing to their goal so that they can see what they’re doing is taking them a step closer to where they want to be.
Interviewer: The techniques you’ve described are quite sort of specialised. They involve some expertise on your part. I’m just wondering are these things that parents can do themselves or should they be seeking professional help and I suppose if so at what stage should they be looking for professional support?
Dr. Vicki Ford: No, absolutely, but I think feeding something that happens multiple times each day and in a range of settings, so actually it’s really important that everyone close to the child has a really good understanding of their eatings and their mealtimes and things, but I think it’s definitely not something that you need a sort of high level of expertise to get started with the tool.
I think what’s really helpful is building an understanding and a consistency across different settings. So, for example, you know, if a child knows that the lunchtime support staff at school are aware of their difficulties around food then the child is going to feel safer to eat their lunch at school, you know without sort of suddenly worrying that a teacher or somebody is going to come up and say oh you could just try that or oh, you’re not going out to play.
You haven’t finished everything. So I think that’s really important and we really often work in partnership with teachers, schools and families just to think more generally about the impact of feeding difficulties on children. So this doesn’t take any sort of expertise at all, but, you know, just thinking about how does some of the general school policies, so things like having a healthy packed lunch policy or only offering fruit at snack time, which is obviously great for the majority of children, but, you know getting sort of families and schools to think together about what sort of reasonable adaptations they might need for children, for instance like offering bread-sticks as well as to eat at lunchtime.
So just small changes like that can make a huge difference. We also know that from clinical experience children can be lots more receptive to trying a new food in a new context.
So actually is often easier to introduce a new food in a new environment like school and also children understand that they go to school to learn. So they can be more open to exploring and learning about new foods at school, compared with how they would be at home.
So I’ve definitely worked with some amazing teachers and teaching assistants who have just made such a difference to the children’s feeding and who have been able to use school lunchtimes as a sort of really regular opportunity to do that sort of gradual exposure and kind of decrease children’s anxiety around mealtimes.
Interviewer: I’m just wondering whose job is it to have that conversation with schools, if that’s not happening in your child’s school should prepare and be approaching the school and trying to give them some kind of psychoeducation. Whose role is that?
Dr. Vicki Ford: Yeah. No, that’s a good question. I think yes in the first instance it can be really helpful for parents to have that conversation with their child’s teacher. Especially for the teacher to pass that information on to the staff who kind of support at lunchtimes because parents obviously have the best understanding of their child’s feeding difficulties.
So they know what their child can manage and what their child really won’t be able to cope with. So, you know, we work with lots of sort of schools where they’re very flexible and they really want to support these young people.
So they’ll sort of work with parents and saying okay, one day a week on the school menu it’s chips and we know this child can eat chips. So they can have a portion of chips alongside their packed lunch, you know, just to sort of kind of include them in lunchtimes. We’ve work with schools where perhaps the child can’t cope with the noise of the lunch hall and the sort of busyness and sometimes the kind of mess and chaos that goes with a busy school lunchtime.
So, you know schools have been really understanding and said why doesn’t that young person and perhaps a sort of a trusted friend why don’t they go in at the start of lunch time when it’s a bit quieter so that they can be done and coming out as it gets busier. That’s definitely something that we would really support parents to start having those conversations with schools. Yes.
Interviewer: Those listening to this podcast where can they go for more information to find helpful resources on the issues we’ve talked about today?
Dr. Vicki Ford: No, definitely. There are some really great resources out there. So I’d say one of the best is the Child Feeding Guide. So it’s a website, childfeedingguide.co.uk and it also has a free app and really is sort of developed by Loughborough University and there’s sort of a Specialist Team there. So it’s all sort of evidence-based and all the guidance is supported by research.
It’s got lots of great practical advice to sort of help parents to understand their child’s feeding behaviour and really to improve mealtimes as well. So it’s a really good starting point for parents of all children, not just children with autism who would be keen to learn more and what I like about it is it’s actually got a whole section devoted to encouraging your children to eat more fruit and vegetables, which I think probably most parents are sort of tearing their hair out about that at one point to another, but for parents who are really struggling with their child’s feeding difficulties or who may be concerned that their child has ARFID Gillian Harris and Elizabeth Shea who are both psychologist with huge experience in this area they’ve got a great new book called Food Refusal and Avoidant Eating in Children, including those with autism spectrum conditions. It’s really accessible and it explains really well why some children just find eating so difficult, but it’s also got lots of practical sort of strategies and sort of ideas. Suggestions for changes parents can make at home as well.
Dr. Vicki Ford: I mentioned earlier the Ellyn Satter’s website and her division of responsibility theory. Her website is ellynsatterinstitute.org and that has loads of helpful information and advice really focused on making mealtimes more positive and a stress-free experience for the whole family.
So she’s got lots of practical advice about how parents can reflect on their own relationships with food and then really to empower their children to have more positive relationships with food. You know, really developing a positive relationship with food that’s going to last their child a lifetime and then I’d also like to mention ARFID awareness which is arfidawarenessuk.org.
So it’s a charity actually set up by parents and dedicated to raising awareness of ARFID and promoting current research and resources. So what’s really helpful is they also host two online support communities. So one for parents of children with ARFID. One for professionals working with children with feeding difficulties. So yeah, really good resources.
Interviewer: Vicki, is there anything you want to add that might be important or helpful to our listeners?
Dr. Vicki Ford: One helpful strategy we talk to parents a lot about is offering the easiest food at the most difficult time of day and really this sort of strategy gives permission for parents to, sort of, break those quite sort of rigid rules we often have about what sort of foods are acceptable at what mealtimes or what time of day really. So, for example, if the evening meal is the biggest struggle then it could be okay for parents to offer a bowl of cereal if the child might otherwise be unable to eat anything at that time of day.
So perhaps parents would have been resisting doing that because they feel like cereal is a breakfast food, but actually if it means the child eating something before they go to bed and then having a better nights sleep because they’re not waking up hungry we’d be really supportive of parents in doing that. The other thing I just sort of wanted to mention briefly. We’ve sort of talked a bit already about children with a very repetitive pattern of eating and often we see children who do what we call food jagging.
So that just simply means eating the same food on repeat before suddenly dropping it, and one young person I work with had a sort of good explanation of it. They said my mind just flipped me off of it. So and I said, why don’t you want to eat the popcorn, chicken or whatever it was anymore? My mind just flipped me off of it. I think it’s really we also sort of think about it in terms of sensory specific satiety.
So that’s the kind of way of basically saying bad if we eat the same food over and over we get sort of full up on it, and I think everybody would have that experience of feeling very full on their main course, but then sort of went off at a pudding or offered the pudding. So you suddenly found more room for the pudding, and that’s because it’s a different taste or a different flavour. So we’re kind of able to eat more of it and for children who only eat the same flavours over and over their body almost kind of kicks in and moves them on to something else.
So to, sort of, support parents in managing that what we would say is it’s really important for them to aim to maximise the variety within the children’s safe foods. So, for instance, if a child ate popcorn chicken, chicken nuggets and chicken goujons and that was all they ate for dinner then we’d say rather than offering chicken nuggets every night for a week and risking the child, or every night for three weeks and risking the child then dropping chicken nuggets from their diet we’d say offer those three foods on rotation.
I guess can seem a bit silly sometimes because they’re sort of almost to us identical foods, but actually quite a lot of clinical experience and evidence is now showing that as much variation as possible within the limitations of the diet can be really helpful. Keeping what kind of variation there is in that diet there.
Interviewer: Excellent. Thank you. Vicki, finally what is your takeaway message for those listening to our conversation?
Dr. Vicki Ford: I would want them to know that help is out there. It is really difficult, you know, managing a child who finds feeding at mealtimes difficult. I think for lots of family it’s really hard to get your head around because eating is something that most of us really enjoy. You know, eating is sort of something that most of us really look forward to and to have child in your family who just finds it the absolute opposite experience can just be really tough on everybody.
So I would say don’t feel like you’re the only person struggling with this is. This is actually a really, really common issue. It’s a really common issue especially in children with autism, but we’d really encourage you to sort of seek help. So as I sort of mentioned there’s lots of great free resources and each of those resources I recommended have great links to other resources, sort of very reputable resources.
Access to resources and if you feel like you really are struggling then definitely talk to your GP and request a referral. You know, in the first instance to a local feeding team or a local paediatric dietitian and they should be able to then put you in contact with perhaps other groups in the community that are sort of supporting parents in a similar position.
Interviewer: Vicki, fantastic. Thank you ever so much. That’s been really helpful. For more information on ASD and the issues covered in today’s podcast please visit www.acamh.org or Twitter at acamh. For more information on Clinical Partners visit www.clinical-partners.co.uk.