Cereal Min

Researching Avoidant/Restrictive Food Intake Disorder (ARFID) – A Q&A with Dr Terry Dovey

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 to find out more about what research is going on in this area.

Image by Providence Doucet on Unsplash 

Terry:  Hello! Thank you for inviting me to this interesting project. I am a psychologist specialising in childhood feeding problems and disorders. I work at Brunel University London.

Q: Hi Terry, we know that ARFID is a pretty new term. Before it was defined, what were children who suffer from this extreme selective eating diagnosed with?

Terry:  Good question. About a million different names. It all depended on who was doing the diagnosis and what group of people they preferred or what school of thought they came from. Most were given the name picky eater, feeding disorder or infantile anorexia. Other names were selective eater or sensory sensitive.

Q: Terry, we’ve seen the criteria for ARFID in the DSM-V (Diagnosis and Statistical Manual – 5th Edition). How easy is it for diagnoses to be made using these criteria?

Terry:  Pretty straight forward actually. This is because the criteria are very heterogenous. If it looks like ARFID its given the diagnosis. The difficulties come with the co-morbidities. If there are any neurodevelopmental disorders or ASD then it may be a little harder to diagnose.

Q: Do you have any insight or thoughts into why the psycho-social aspect of ARFID criteria being optional? Wouldn’t the relationship between parent and child be an important piece of both understanding ARFID and consideration of treatment options?

Terry:  Hi! The answer to this one is yes and no I am afraid.

There are two competing schools of though. One is the psychoanalytic that effectively say everything including the cause is in this relationship. The other school, the behaviourists, suggest that it could be, but the fix is with the child.

In the DSM (Diagnostic and Statistical Manual), if the child’s eating is overly impacting on the parents, that can be enough for diagnosis, but often these criteria are not used alone.

Q: What is the current process for a child to get a diagnosis in the UK? Is it a psychologist who has to make the diagnosis or can it be any health/medical professional?

PSG B: Thanks for asking this – I’d also would like to know the answer.

Terry:  Typically it will be a psychologist or a psychiatrist. Usually the actual diagnosis of ARFID is not given until all other potential medical reasons have been ruled out.

Most people with the condition don’t actually get it though (in my opinion). Most of the time, in the past, families or parents were blamed. It has only been very recent that people have started to listen.

PSG C: Any thoughts on where the people who don’t get the diagnosis end up? With a diagnosis of something else? Or discharged without any diagnosis?

Terry:  All of the above. They mostly get ignored with or without as the expertise to deal with it is limited. I can invite all the people in the world with the skills to my house and they would fit around my dinner table.

The reason is that it’s being diagnosed more and more is that eating disorder clinics are doing much of the diagnoses.

Q: Neither myself or my husband would be very selective eaters, however I do remember my siblings being very selective and some still are. Does it tend to run in families?

Terry:  Yes it can. We do not know the genetics of it. I spent this afternoon with a colleague trying to map the genes out. At the moment it is likely there is a large link (roughly 70% inherited) and that this is probably related to genes on the taste.

PSG C: Wow! Could you tell us a little more in layperson’s terms?

Terry:  If I did, I would have to kill you!

Only kidding. Sure.

So if you want to map a gene you have to first find it. To do that we need to have large samples of people and then link the genes back to dietary variety. We then isolate those people with a low dietary variety and look at which genes pop out. We then see what proteins are coded by those genes and what the gene is used for. So it could be a gene that codes the bitter taste receptor on the tongue and hey presto, you have your genetic cause.

It’s a while off yet, but I am making progress. I am hoping to isolate the genes over the next couple of years. It does take a lot of time with me in a room on my own!

PSG C: Oh wow! That sounds both totally straight forward (therefore a great description) and totally impossible!

Terry:  It is. Maths is hard!

PSG D: Sometimes it’s not just the taste but the texture of the food that either of my children won’t touch. How does that fit into that research?

Terry:  This is classic. We call this texture fading techniques. This falls under sensory sensitivity or more accurately oral sensory sensitivity. The technique to deal with it is relatively straight forward and is called texture fading.

Q: I’ve heard hypnosis can help with eating disorders/selective eating disorder. Could it help with ARFID?

Terry:  Hypnosis? I would not be too convinced by this. It might work by lowering anxiety, but it wouldn’t directly address the problem in my opinion.

PSG D: What about cognitive behavioural therapy?

Terry:  To help a child with their diet takes a very structured, patient and well worked reward system. Most of these children are likely to be sensory sensitive or have some aspect of taste hypersensitivity. All jargon for they get too much stimulation from food

Great Ormond Street Hospital use this school of thought. CBT usually involves CBT for the parent AND CBT for the child.

They have some success with their programme, but the only evidence base is in the BT (behavioural therapy) element.

PSG B: What reward system would you use please? I try to be a natural parent and don’t use sticker charts/naughty step etc.

My son (5yrs) is definitely sensory sensitive- affected by loud noises; loves bright colours and needs to be in control. We’ve tested for autism/ASD, all clear. Still struggling with eating though.

Terry:  There are some horror stories on the internet about BT, but there are mostly false or in the US. For us, we are definitely not into force feeding here. I use BT (basically, non-verbal techniques to help children eat)

Q: I have a question about preventing the development of ARFID – for example, in toddlers who start showing signs of picky eating that is outside of normal expectation – are they any early interventions that can prevent them developing ARFID later on?

More specifically, for toddlers who have had repeated negative associated with eating (due to reflux, delayed oral motor skill etc) – is developing ARFID almost an inevitability?

Terry:  All children will go through the developmental phase of food neophobia between 18months and 6 years. It is hard to tell the difference. Usually if a mealtime takes longer than 40 minutes or less than 5 minutes there is a problem.

Terry:  Early interventions? They are the dream, I am afraid. Most of us are buried dealing with the extreme cases where the child is tube fed or in a bad place nutritionally.

For those with reflux and delayed oral motor skills the risk is very, very high. It’s a perfect storm. For these children both need working on separately.

PSG G: What do you think early intervention would look like? If you had a magic wand?

Terry:  I think that it is highly likely that this disorder has a strong genetic component to it. So I think it is likely once we identify the gene we can drill down on its impact.

Early intervention would be around expectation and removing the blame and the speed of acceptance from the process. For ‘normal’ children it will take less than 7 attempts to get them to try a new food. For an ARFID child it takes upwards of 30. They can get there, it just takes a lot more time and effort.

Q: There is currently a great emphasis on achieving health through the consumption of certain foods. When children are struggling with food acceptance, do you have any general words of nutritional / psychological wisdom for parents?

Terry:  YES!

Calories are king, nutrients are nice.

Focus on one thing at a time in one meal.

During mealtimes go for calories and give them what they will eat. Set up snack times for trying new things in.

Don’t try and do two things at once. It will fail.

Expect it to take a month of trying the same new thing before it’s even tried.

PSG B: How do you explain to grandparents that ARFID is a medical condition? They think it’s soft parenting & fussy eating.

Terry:  Is there an eye rolling emoticon on here?!

I get this a lot. I also get one parent (usually dad) blaming the other parent (usually mum) for it too

I try to explain it to them in a way like this: some people say they cannot handle spicy food -something like “It’ss too spicy, I cannot taste anything”. Others will say “I cannot taste it without the spice”.

Q: Something I have heard (too) often is that it takes x number of tries to like a food. I can tell you there is nothing in the known universe that will change my mind about olives.

Where does one draw the line between giving the eater [children/teens/adults] the privilege of not liking a food because it just doesn’t taste good to them, and trying a specific food x number until the eater finally surrenders?

Terry:  I bet you have had the wrong olives? There is a Terry theory about olives. May be for another time……

PSG D: I love olives, but I cannot stand celery and I never will

PSG C: I have a theory about olives too. Took me a couple of years, but I love them now…….

Terry:  I bet you were roughly 27 when that happened…..

Terry:  If their diet is sufficient and they are nutrient replete then they can have a diet they like. Ultimately, as with all disorders it is more about the distress, danger, dysfunction and deviance of their diet, but this is wondering into the theory of diagnosis rather than specific to ARFID.

PSG F: I’m 30+ and pretty certain olives and I have an understanding ?

Q: How would you approach researching the link between social anxiety and selective eating? Do we talk about control? Fear? Pressure? Mindfulness? Family patterns?

Terry:  As in argophobia? Typically, these types of links are done by association. You get two psychometric questionnaires and you then see if they associate or not.

PSG A: In my daughter the fear is more about people than places.

Terry:  Sounds like anxiety is the issue and that it manifests in different places. This is true of all psychology. Effectively, all difference or disorder in psychology is underpinned by anxiety.

33% of people in an anxiety clinic have an eating disorder about 66% of adult eating disorder sufferers qualify for clinical anxiety. There are a few other areas this may manifest too, such as selective mutism.

PSG A: Yes she had that when she was younger.

Q: Does ARFID affect children of older mothers (say 30 years plus)?

Are we introducing too many foods too soon to babies & young children?

I and other members of my family were brought up on basic, traditional food (potato, milk, cheese, a little fish/meat, fruit & veg). Now we are encouraged to offer a much greater range including chilli, spices, food that wouldn’t be grown in UK. As humans are biologically cavemen, should we be weaning onto plain, local food and then as teenagers/ adults exploring other options?

Terry:  That is a massive question…

Firstly, the older mother thing. Nope.

There is a window that most people don’t talk about, which happens at 4-6 months. However, the guidance to eat is not until 6 months. You can wean children earlier and it is a little easier, but this is dependent on several key milestones and usually reserved for children who fail to thrive on milk only diets early one.

You just need a replete diet. No matter what that looks like. You can survive happily on not a lot in terms of variety.

The caveman thing is a little weird as an argument. It also does not make sense. You are born able to be adaptive. Otherwise we wouldn’t be here. So saying we should be like our past is like saying we shouldn’t adapt.

PSG A:  My other son is surviving happily on peanut butter, milk, cheese, nutella and cheerios with the occasional bit of fruit thrown in. He’s 5, is he able to get the nutrients from such a limited diet?

Terry:  Cheerios are fortified by law. The ultimate argument is in his blood work. But potentially yes. A lot of people go on about specific foods or food groups, but if you have bread or cereals you potentially can survive.

PSG C: So many parents are worried that their children’s (with a feeding disorder) restricted diet is going to result in long term damage to their health. Does research suggest that this isn’t necessarily something to worry about? Or is there a need to find out more about how low on some nutrients this group of children are?

Terry:  If you could get that data I would be very happy!

We don’t know about the long-term impact. However, we do know they end up as what used to be known as atypical anorexia in some cases. There are definitely impacts of having a poor diet, but equally, fortified foods is a bit of a game changer.

What research shows is that we can slowly turn it round, but it takes a lot of effort and often the blood work is ok in terms of nutrients.

PSG C: I’m guessing that getting blood work done on kids for research purposes is fraught with ethical problems……..

Terry:  It is yes. Best to let medics do that. They should if they suspect a bad diet.

PSG B: We were told by a dietician to keep an eye on protein & iron levels. but nothing was followed up as dietician said my son’s eating behaviour is psychological rather than physical.

Terry:  Is there a shake head emoticon?!  I need to talk to that dietitian. What is their job???

Protein comes from anything that was once alive. You get that as long as you eat something that was alive. Typically that’s everything we eat.

Iron is a problem for all people in the world. Unless they eat offal.

Along with zinc, vitamin A and dietary D and E. Everyone (at a population level) has difficulties with these

PSG B: This was 2 dieticians on separate occasions (one from Harlow & another plus a paediatrician from Addenbrookes in Cambridge). Like many parents of ARFID children, I’ve been to many professionals and still no help other than prescription for Movicol (a laxative) which is reviewed yearly.

Terry:  So the answer to not eating is to give him a laxative?!

Does he even have constipation? That can be a problem, but a lot of children who go to a Gastroenterology get Movicol.

PSG B: Yes, it’s a quick fix answer or blame the parents!!

We’ve not been to gastroenterology. We’ve seen dietician (x2), GP, health visitor, paediatrician (x2).

Terry:  Sometimes they know the answer, but the work is too much and they don’t have the availability or the funding. There are laws you can work and the CCG can be lobbied too.

Generally, though if his diet is good and he is medically stable they will use the opt out of “It’s your problem”.

PSG B: His diet is getting better: breads, cakes, biscuits, chicken nuggets, chips, fish fingers, Bear Yo Yos apple, orange juice, cereals.

Q: Terry, what led you to research this topic please? Are there any others working with you or alongside you? Can we follow your research?

Terry:  You can follow me here: https://scholar.google.co.uk/citations?user=tzcCxLkAAAAJ&hl=en The google thing is automatic so it makes mistakes. I haven’t been at Loughborough for 6 years! Alternatively, you can just email me. I am always happy to help where I can.

What got me into this? Pure luck. I am an eating behaviourist by background. I just followed where I though people needed me after my PhD.

There are a few others working on this area. I work a lot with Clarissa Martin at Midlands Psychology, Markus Wilken in Germany and a few others.

PSG B: It’s interesting there’s research in Germany. Shows that there isn’t a UK environmental/ social etc link.

Terry:  Sorry, I am not following there…..

I agree in terms that the underlying cause is genetic, but the ‘treatment’ would have to involve an adaptation of the environment or social interaction. That pesky gene-environment interaction thing

PSG B: Sorry, trying to think & type quickly so using short hand!

If ARFID was only in UK, then treatment might be looking at local pollutions, diet, water supply. As research is in Germany, it says to me that ARFID is a human condition rather than a national one.

Q: Terry, where do you think the most important gaps in the research are right now – the research that, if it were done might make the most impact on families.

What research is missing? What should happen next?

Terry:  For me I am working on the genetics at the moment, but we need to work out what is going on in the mealtime more than simply the duration being an issue.

One thing that is difficult is that professionals cannot see it when they visit. Because the child’s behaviour in mealtime is often benign.

We need to know about the lived experience of the ARFID family, its impact and most importantly the cause.

From there we need to know what works. And I mean works in terms of increasing dietary variety and intake.

There are so many people with theories, and they sometimes say they have fixed the issue when they never measure the real problem in the first place… the eating.

We have so few families that are interested in research too. They have often been treated badly by ‘professionals’. So trust is often very low.

PSG C: So what is the best way of investigating this? Setting up observed meals in the lab? Diaries from parents? Surveys?

Terry:  Yes to all of those.

Most clinics are reliant on their own clinic and they cannot say what doesn’t work as that would be seen as failure.

We really need a good large group of people to systematically work through the questionnaires, provide swabs for genetic analysis and also provide interviews. Desperately.

Unfortunately, most research organisations don’t want to fund this research. They are more interested in dealing with weird and rare genetic disorders than they are with this problem that so many people face. Usually, this is because they say you cannot get the sample.

Therefore, you as a team are very well placed. You have about 100 people here. That would be the biggest sample I would be aware of. I would happily help you with this.

PSG C: That’d be amazing, thank you!

PSG A: I’m totally in!

PSG B: Would hidden cameras be a good way of recording a home meal? The child wouldn’t know any difference and the scientists could see for themselves what was happening?

Terry:  I do that a lot. I have a paper coming out shortly on just that. We learned a little bit this way and answered how the anxiety presents during a mealtime.

PSG B: Brilliant! and congratulations on gaining enough data for a paper.

Terry:  If you want the papers they are all available online. However, you probably just want the highlights and the outcomes.

You’ll probably read those outcomes and say “D’oh, yeah!” – they are obviously to people who are living the situation, but we need that evidence documented to build on it.

PSG E: I’m happy to help with surveys/ video!

Thanks so much Terry for your time tonight and all your answers – we’ve learned so much, and I think we’ve all got a whole new set of questions!

Terry:  Please do get back in touch. I love this idea of a project. Happy to help where ever I can. Citizen science!

Good night all and good luck!

Curious about selective eating? Why not read our other Q&As on the subject:

You can read all our Q&A sessions, on loads of different parenting-related subjects on the website.

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