Mealtime Hostage Parenting Science Gang is looking into the issues that affect families where a child suffers from a selective eating disorder. We chatted to Dr Terry Dovey for a second time, to start to explore how our citizen scientists parents might start to explore their own research.
Terry Dovey: In our last session we covered basically the feeding time and mealtime difficulties
I understand that some people have some more questions about doing a study on mealtime experiences and I am happy to help and listen to what you want to do and hopefully help you do it
PSG A: My understanding is there’s not a lot of research about the experiences of families at the table, with a child with ARFID, is that right? Or, is it with a child who’s a fussy eater in general (i.e. no diagnosis, or a different diagnosis?)
Terry: There isn’t much period. There are some studies looking at experiences but most will focus on specific issues
For example, I have looked at techniques to intervene mainly, but you can also find some things about problem solving etc…
What’s going on with the parents?
PSG B: When I read literature on feeding struggles within the family, there is an obvious sense of tension… parents are using pressure, children are resisting. Also keeping in mind that an ARFID diagnosis results when another condition does not better explain the eating disturbance. There is a lot that isn’t included.
How can we capture what’s going on with the parent that places emphasis on the child’s eating. Is the parent anxious, depressed (PPD?), is there some social expectation for parenting competence that involves the inclusion or avoidance of specific foods or food group? In Facebook groups, it’s interesting how often a post communicates isolation and a sense that *my problem is worse that everyone else’s (which is probably related to anxiety). What else is missing from the parent perspective?
Terry: In terms of the parent, we know quite a lot. The stress and anxiety is related to the feeding experience and not wider issues. This tells us it is specific rather than something the parent is bring to the table. We also know some characteristics about parents with children who don’t eat, but my belief is that these are a consequence not a cause.
I would say (and always do) lets focus on the person with the problem. That’s the kid!
PSG C: Couldn’t agree more as these issues cross the whole socioeconomic groups. As someone who works at the cold face of these issues parent biggest complaint is not being listened to when they raise concerns about their child’s feeding and then being given variable often inappropriate advice and taking ages to get referred to appropriate services.
Terry: Oh the stories we could share!
PSG C: I’d love to be able to do more!!
If you had a magic wand, what would you like to know about children and their eating/ or not as the case may be?
Terry: I guess at this stage it is a little difficult to make the next step. Perhaps if I could hear from you about what it is you find difficult.
PSG D: The ultimate magic wand would be to get my child to accept a wider variety of foods and get pleasure from eating them.
PSG E: For me it would be to cook at least one family meal that everybody would eat and enjoy together.
PSG F: To be able to eat with others without having to plan a picnic for my son. to not worry about daily feeding such as packed lunch.
Terry: So from this I can see you are after family experience and how to get there. You are all interested in the end product rather than the reason for it. These would be all great clinical outcomes, but they are difficult for research.
PSG E: I suppose if we know the reason for it then we know how to manage it. The end goal is the holy grail!
PSG C: Is it possible. It’s a multi pronged appropriate approach that is needed but it takes time… first it’s the right team and then the right approach.. there is no magic wand but the right team with the right skills mix is the key.
PSG F: I’d would love to know, is my child’s eating difficulties genetic (his dad’s side of the family has quite a few health problems), is it a stress coping mechanism (dad is an alcoholic which causes me stress)? is it a physical problem such as an inability to digest food properly? We’ve struggled since birth getting my child to eat – no known allergies, he can chew & swallow well.
Also I’m interested to know why eldest sons seem to be affected more than other groups?
PSG D: There was a discussion last week where the ‘expert’ confirmed that a genetic link is highly likely.
Also, am interested to know more about the thought that it affects eldest boys mostly. This could be another quick poll we could do.
Terry: Hi it is likely that ARFID is a genetic disorder yes. I may have been that ‘expert’ but the inverted commas sadden me.
PSG D: Sorry, it wasn’t meant with any offence! It was more to give a title (to separate you from us parents) as I couldn’t remember who said it! I’m very bad with names.
Terry: Ah… You misunderstand. You are the expert of your child. I am just good at putting answers together than might help you. You’re definitely the expert too. You have more knowledge of the lived experience than I do. I get it all from hearing it rather than living it
PSG C: Just because he chews and swallows doesn’t mean he’s able to feed age-appropriately. I see a lot of these kids and have done with 20 years. Stress puts up adrenaline and as a result appetite is decreased. You always start with physiological function in other word out rule the obvious possible medical issues and remember things change so sometimes repeat testing etc is warranted. Any child that struggles from early on is a red flag to me.
PSG F: He does eat a smaller amount and reduces his range when he gets stressed. for example he fell off his seat at school dinner hall and refused to eat more lunch. He also restricts his range down to one main food at a time- currently bread roll.
PSG C: This may sound strange but you don’t learn to feed asleep. Dream feeders are an instant red flag or parent who say only one person can feed the baby.
I commonly hear what you are describing it’s like:
Child:I fell off the chair eating sandwiches with ham so now I won’t eat ham.
Adult: Why ham?
Child: Well yesterday I’d cheese and I didn’t fall off the chair.
Next day nearly fall off chair eating cheese sandwich so no cheese now… this is why I’m wondering about an ABA type approach being a possibility for these kids.
PSG C: Just spent 2 days at a feeding course and learned lots but again I feel this needs a team approach and time… listening to this American therapist it was obvious why see gets results. It’s input it’s consistency and it’s being able to access services in a timely fashion!! She was shocked with what we told her. Reason she can do what she does is it’s all private!
Terry: That is true. Time is the key. Private always get results or they don’t get paid. In the NHS the professional always gets paid, but then more people get seen.
PSG C: Interestingly this therapist was using an ABA approach type… found it quite interesting.
PSG A: Isn’t ABA quite a controversial approach? Or have I got it mixed up with something else?
PSG C: That’s what I don’t know but I’m wondering that as feeding is a learned behaviour for whatever reason is it behaviour change that will improve it. ABA or a modified version of could work for some. I’m a dietitian so not a psychologist or a certified ABA person but if all is medically well is it an option/possibility??
ABA approach??? Something I’m wondering about more and more with these kids? Anyone looking at it in the non Autistic population for feeding?
Terry: the ABA approach is not an approach per se. Work with ASD is always on going and feeding is the hardest thing to work on if you believe the hype. See ABA like a set of tools. Think of it like a shed. You then select from the shed when you want to get a job done.
PSG F: My child has been assessed for autism spectrum disorder and discharged as “normal”. Parenting was blamed; I was told to take better care of myself & stop trying so hard. But our health visitor is using techniques with us that are used in families with ASD
My child does chew his muslin cloth at night; i’m trying to discourage that as it’s affecting his teeth
Terry: That makes sense. ASD also have sensory issues
PSG C: Terry I agree I’m wondering if some of the ABA tools are a rung on the ladder??
Terry: ABA tools are just reward routines and techniques to get kids to eat. Some are pleasant others less so.
PSG C: Terry: I see a lot of ASD kids rewarded with food becoming overweight so I completely agree! It’s a hard one to undo!!
Could you explain dream feeders?
PSG F: I’ve never heard of the term .
PSG C: Dream feeder are those babies who happily feed asleep or semi asleep but are not awake. Interestedly they are the ones I end up seeing in clinic with issues with solid introduction and subsequent feeding problems?
Terry: Never heard of that association before. But sounds plausible. One of the other studies I am working on at the moment is the development of jaundice
PSG C: Terry: it’s more an SLT thing but I’ve a feeling if you look at it many of these kids were dream feeders… you don’t learn asleep!!
I’ve a feeling a key red flag in some of these issues is these kids that dream feed…. the more I see they more I’m hearing “well they were a good or not so good feeder but the dream fed a lot”
PSG A: Are you talking about dream feeding as in breastfeeding?
If so, it’s interesting to see here described as a “red flag” as our breastfeeding groups would certainly see it part of the normal breastfeeding relationship.
I wonder what the context is, do you mean people simply breastfeeding their children at night on demand (perhaps they cosleep) or dreamfeeding to a schedule – or something else?
PSG C: Dreamfeeding where the child feeds well when awake is perfectly normal. it’s where kids only dream feed I’m wondering as a red flag be it breast or bottle… they are the ones who stop at the 30-60mls if that or refuse when awake.. look at it as can you learn to drive asleep? If you read about early feeding behaviour it’s reflexive behaviour and then babies learn more to feeding becoming voluntary.
I’m not an SLT but I know that babies who feed only asleep are red flags… why won’t they do it awake??
PSG A: Oh, interesting you’re talking about kids who ONLY feed when asleep.
What kind of research do you think we, as families, can do, that would be hard for a researcher?
Terry: Anything you like. We are not that different you and I. The only difference is I have spent 3 years in a room working out something. The real issue is what question you want to ask. and then make that specific
PSG D: Are there any specific studies going on at the moment that we could feed into? I think there’s a lot of us here who would be happy to have mealtimes filmed or food diaries kept if it would be useful.
Sorry, no pun intended with the ‘feed into’ comment!!
Terry: Getting participants is always hard. It can take many years to get enough people. I am working on a couple of proposals at the moment and would love if you would like to take part. I am very interested in sensory processing in children with ARFID as well as the emotional reactivity. That is where I am working at the moment. But first you have to get the funding and that can be even more difficult.
PSG D: We don’t have an ARFID diagnosis. I’m very reluctant expose my child to the medical profession as we keep his selective eating a very low key issue in our house and if I started taking him to see anyone, I fear it would get worse. I do believe his eating is very much linked to sensory issues.
Terry: It is difficult to help without the diagnosis. If he is surviving then great. but if it is an issue for you or your family I would suggest talking to the GP about it. It is nearly always a sensory issue in my experience.
PSG F: Terry: In my experience, there is a definite sensory link. My son can use cutlery but chooses not to. He decides if he’ll eat the food based on its look then smell then texture.
Tonight was the first time we’ve been able to properly brush his teeth; thanks to an unflavoured toothpaste. Also he is growing out of disliking strong smells and loud noises.
Terry: Winner for ten! You got the first clinical question I ask. Never ask about food. I always ask about teeth brushing. It is not always the issue but you have just hit the nail firmly on the head. This is oral sensory sensitivity. You could test this as a group pretty easily and that would be an example of a quick study that would give you a reason for not eating
PSG A: Terry: do you mean we could poll the group to see if our kids have problems tooth brushing, then maybe use one of our other non-fussy eating groups as a control and look for a correlation?
Terry: That would be an easy test to do. Now you have an hypothesis. Does oral sensory sensitivity cause AFRID. You test for the oral sensory sensitivity and the amount of foods they eat.
PSG I: Is this something which hasn’t been tested then? We don’t know whether oral sensitivity is the cause of (all? some?) cases of ARFID?
PSG D: Oh that’s interesting! We don’t have tooth brushing issues anymore but we used to.
He does however gag if we use normal minty toothpaste but OK with the aloe vera flavoured one.
Terry: It’s not gone away. it’s just changed topography (issue is the same but looks different now)
PSG F: Hi, try Oranurse. it’s unflavoured & non foaming. I got some from Amazon for about £5
PSG D: The Green People spearmint and aloe one is acceptable and if there’s one thing I’ve learned it’s not too change anything! They did change the tube recently and it took a bit of persuading!
PSG F: No, no keep going if it’s working! 🙂 we had to negotiate when Innocent changed their packaging. they were great, sent us a little book explaining why the smoothies looked different.
PSG F: Terry: oral sensory sensitivity- does this mean that my child tastes food much stronger than most people?
Terry: No it means he finds it offensive. Taste is a genetic issue. I could show you a simple test for that using food colouring. You are after the amount of taste buds he has to work out the rest
PSG F: That’s it! Food is “disgusting, smelly or yucky” or can be “yummy”.
PSG D: Would be very interested in this test!
How could research detailing the experience of mealtimes for families with ARFID kids help the overall outcomes for them?
Terry: If we can identify the cause or function we can devise a solution. In psychology we are not interested in what it looks like, rather we come up with ways to work out why they are doing it. If we can then you have the target. Each child will be different. If you get the function you are 99% way to the solution.
PSG G: So is there an assumption that something is going “wrong” in terms of the interactions at the dinner table then? I worry very much about “blame the parents” culture.
How can we capture the child’s point of view?
PSG B: Children communicate well through their responses and actions – how can this be recorded? Are we looking for any specific diagnostic criteria in the child?
Terry: Now you’re cooking on gas! Yes. This is what I am interested in. The issue is getting them to take part in experiments in the lab to do this. You cannot ask children about it. Emotional reactivity and sensory processing is very much of interest. So is disgust sensitivity too. You can test this either through experiments or questionnaires.
You have to choose between quantity and measuring things or quality and talking about them. Qualitative studies are always difficult with children
PSG A: Can this kind of thing be tested in the home?
Terry: Most of what I have done has been tested at home
ARFID is a bit of a catch-all as a diagnosis
PSG H: As a researcher, are you interested in characterising the experiences of families handling a specific “type” of ARFID (e.g., picky eating, limited volume intake, etc.), or are you interested in characterising the entire spectrum?
Terry: The categories detract from the problem. They don’t eat enough. Like obesity there are many ways to get there. Most are a little bit unique. I am interested in the rules that govern all types rather than just one.
I am a behaviourist. I am interested in fixing problems. We are like the A-Team of the psychology world.
I am a behaviourist. I am interested in fixing problems. We are like the A-Team of the psychology world.
PSG H: I appreciate that! Do you think it’s realistic to identify behavioral approaches to feeding and mealtimes that can address all presentations of ARFID, or do you think that these approaches need to be informed by underlying causes?
(As an aside, I’m curious about this issue because my son is not picky and does not have sensory aversions, but does have very limited intake just in terms of volume.)
Terry: There a variety of reasons for not eating volume that isn’t necessarily ARFID.
EDS for example. True behaviourists would never say things are generalisable. All interventions have to be written specifically for the child
PSG H: You mean Ehlers-Danlos Syndrome, or a different EDS?
And by the way, thank you for taking the time to talk with us.
Terry: No worries. I will always talk to people who ask. and yes. You EDS ehlos. It’s one of the hidden criteria to diagnosing it. Early satation, it’s called.
PSG H: What are your views on the three subgroups proposed by Chatoor, in that case?
Terry: I wrote my reply to that Chatoor thing in a paper that was used to create ARFID. I think we are all looking at the same thing and spending too much time on what to call it. It’s just eating disorder. So lets accept it as that and work on some solutions. We have been arguing about what to call it for 20 years. I am gonna say we cannot agree. But that is because she is a psychoanalyst and I am a behaviourist. It’s like Sharks and Jets in Westside story
PSG A: Please could you tell us a bit more about sensory processing and what you’re working on?
If we passed the magic wand over to you, what would you want to find out?
Terry: Sure, so I have a theory that children with ARFID are sensory sensitive. They find insult in experiences and sensations that other people process as benign or ignore. They over attend to the sensory information that results in a large emotional reaction. This in turn means they develop inappropriate associations with food and becomes disgusted easily.
At the moment I am working on this theory.
PSG F: Yes! definitely in our case. My child has a strong liking for bright colours, is sensitive to smell & sound, finds jumpers difficult to wear (too itchy). yet he loves his muslin cloths that stink & are stained – I have to wash them for hygiene but he hates when they’re clean. Interestingly, he prefers them to be dried outside rather than tumbled
Terry: Look up desensitisation protocols or training that is likely that may help
There was a suggestion that eldest boys are more likely have eating / sensory issues.
PSG D: Is this something that we could look at?
PSG A: If you mean is it feasible, I don’t see why not. It sounds like a relatively easy thing to find out.
PSG E: Terry, back to your research, are there any questionnaires, polls etc that we can particularly help with?
Terry: I don’t have any studies set up at the moment. Currently the studies I am running are on tube weaning. But I think we can arrange something. I am currently applying for funding to do a project. the other thing I am working on is genetics at the moment.
PSG I: Just wanted to clarify, in case anyone reading hadn’t twigged we could do our own research:-)
PSG A: You mentioned upthread that children can be difficult to work with for scientists, sometimes.
Is there research that we could do, as citizen scientist parents, that scientists would find hard to do?
Am I right in thinking, that if we were to investigate the link between sensory issues and ARFID, and we did a set of tests or observations in the home, that’s playing to the strengths of our group, and doing something that we might find easy but actually scientists might find quite hard to set up?
Terry: Yes. We find it hard to get you all in. The difficulty would be the standardisation process there. So we would need to work that out. It has to be the same or similar for everyone. Otherwise people will just say each person did it differently.
PSG H: Would you see value in families dealing with ARFID forming sort of virtual cohorts or registries? There are certain basic types of data that all could contribute at baseline (e.g., demographics), and then registry could serve as a recruitment tool for researchers.
Terry: I would. But you need to work with the right researcher too. One that is going to work with you rather than do their thing and forget you as a group.
PSG E: Thank you Terry, a great insight into an area that is in need of research and support
Terry: Any time. Always happy to help. Would love to hear from the group in the future and hopefully come up with a workable idea for you to answer.
I understand you are talking with Prof Blissitt. We all know each other and please don’t feel you have to choose. If you want us to work with you together I am sure we can work something out
Curious about selective eating? Why not read our other Q&As on the subject:
- Researching Avoidant/Restrictive Food Intake Disorder (ARFID) with Dr Terry Dovey
- Extreme Picky Eating with Jenny McGlothlin
- Fussy Eating with Dr Claire Farrow.
You can read all our Q&A sessions, on loads of different parenting-related subjects on the website.