Over the last 8 years I have treated more than 1,900 patients suffering from selective eating disorder (or what most people would mistakenly assume to be ‘fussy eating’). When you hear so many stories you begin to pick up patterns behind those stories. People with SED (or ARFID as it is known in the USA) tend to hear the same old judgements about their behaviour not just from parents or other family members, but even from doctors, mental health professionals and even supposed eating disorder specialists. Even professionals tend to confuse SED with fussy eating. Giving advice that is only appropriate for fussy eating to a person with SED is at best useless and at worse it can be very damaging. If a person gets the wrong medicine or anti-biotic for a condition, they will get all of the side-effects with none of the intended benefits.
Coping with a phobia on its own is hard enough without all the unnecessary added misguided advice and judgement which makes an already difficult matter that much harder.
This article is here to help dispel some of those unhelpful beliefs facing so many people out there with selective eating disorder. The top six myths about SED are:
SED is not picky or fussy eating. They are very different things. SED is a strong aversion/phobia around foods which means even if you desperately wanted to try some appetising looking food, you would be unable to do so, or unable to swallow it.
Fussy eating is when a person could eat alternative foods but they want their favourite or most exciting foods most or all of the time, or they are very fussy about food looking perfect or unblemished (e.g a pure white chicken breast and won’t eat chicken thighs or there is a dark spot on a French fry).
‘Fussy eating’ tends to just be a normal conservative stage during most children’s development. Fussy eaters are often merely picky or play on the preferential treatment or special attention they get, but they are not phobic.
SED often gets overlooked and misdiagnosed by doctors and even eating disorder specialists, as they confuse the one with the other and unfortunately give very inappropriate and even harmful advice.
SED is a true phobia that just happens to be associated with foods rather than animals, objects or processes. In simple terms due to an event or phase in the past, pain has been associated with certain foods and the system refuses to venture past its safe foods. The more this situation persists, the greater the belief that one is ‘unable’ to then eat new foods because of the lack of past historical successes.
A person with SED / ARFID may be at death's door, having weak bones, missing out on a social life, and desperate to eat other food but their brain will make them incapable of either eating food or swallowing it. In addition you can bribe them with - an iPad, a new car, a trip to Hawaii (all true bribes) and they will still not eat a morsel of new food. This is because a phobia is present rather than a fussiness.
The American Psychiatric Association has formally recognised selective eating as an eating disorder in its diagnostic ‘bible’ (the DSM-IV). In its latest version (DSM-V), selective eating has been renames Avoidant Restrictive Food Intake Disorder (ARFID). It is a real condition.
Unfortunately without a real understanding of the dynamics of SED, most conventional approaches to therapy such as graded de-sensitisation tend to be ineffective. What is not understood by most practitioners is the concept of ‘safe food’. People with SED are highly specific about their safe foods. It does not follow that just because a person is willing to eat chicken nuggets that they can move on to trying other forms of chicken. Chicken nuggets are the safe food not ‘chicken’ per se. Roast chicken might as well be lettuce. The brain classifies it to all intents and purposes as if it is another food category. The same applies to potatoes. Some clients will only eat one form of potato.
To put it another way – applying this logic of 'If you like this thing then you will like that other similar thing' is akin to telling a heterosexual man "Since you like kissing women, well then just try kissing that hairy man over there, and if you don't like it, just stop it". Even though the act of kissing is the same, it’s qualitatively different!
The assumption here is that a child could eat food but just holds off eating it to get some form of attention. I can assure you that after having heard thousands of stories from clients and from forums on SED I have participated in, clients would pretty much give anything to NOT have this kind of attention.
At school no child wants to be singled out as ‘weird’ or ‘odd’ or an object of ridicule by its peers. The opinion of its peer group means everything to a child’s at this age. No child wants to be left out while their peers go to camp or school trips or other activities where there is food the person with SED cannot join in with and eat.
If going on a date, no young person seeks the ridicule of their prospective date. In fact many people end up avoiding dating and develop a lot of social anxiety as they tend to feel very conscious of their eating behaviour in the presence of others.
Not all attention is desirable.
Moreover, there is another assumption that this is somehow a child or teenage problem. In fact the majority of my clients have been adults, adults that run companies, businesses, teams, households and the like. For the most part they have taken pains to keep their behaviour a secret from others (the very opposite of supposed-attention seeking). Who exactly are they meant to be seeking attention from in any case? Elderly parents?
These same adults have also been desperate enough to invest large sums of money in travel, accommodation, flights and my fee to address their phobia.
Not to mention I have seen a handful of clients with SED who are professional chefs (yes chefs!) and many others who have a keen interest in cooking but cannot taste their own food. They rely on others to taste it or have to go by the look, smell and feel of their cooking. No chef is going to hold themselves back in their career because of some abstract need for attention.
If attention clearly does not figure in the behaviour of the clients, then the behaviour is not happening due to attention. As with many of these myths, upon further inspection they cannot stand the cold light of any minimal scrutiny.
The notion that if you are truly starving you will end up eating anything because of your body's overriding instinct for self-preservation is a big myth. Yes many people in emergency situations have ended up eating things they wouldn't normally consider eating, or even on occasion each other! Despite this, this is another of those myths that is easily debunked with numerous examples to the contrary.
With a little bit of analysis the same people who believe this myth are at a loss to explain:
Putting aside food for the moment, evidence tells us that countless people have been able to override any instinct for self-preservation with any number of self-inflicted deaths. Leaving aside the whole matter of ‘conventional’ suicides (such as people who commit suicide after a relationship breakdown), what about people have even been prepared to set themselves on fire in protest at some action?. If a person is prepared to suffer the excruciating pain of burning themselves to death all in order to merely make a statement they believe in, then clearly the instinct for self-preservation is not the “be-all-and-end-all”.
Let me share one example from my life. By far the most disgusting thing I have ever tasted was a roast tarantula leg dipped in chocolate. As soon as I could taste the actual taste which was too foul to describe, I spat it out. I can assure you that if I was stranded in the jungle and only had tarantulas to eat, I would much rather prefer to go on hunger strike and die from starvation. I have had a good and full life and would simply not be ready to ensure my survival at all costs regardless of the price. I'd rather 'move on'.
I could real off endless heart breaking anecdotes I have heard over the years. Suffice to say here is one moving account from one mother:
“My son is in hospital at the minute very I'll, he's got to have his bone marrow done on Wednesday but before they can do that they need to clear up a very bad chest infection he has, so they need to give him two different antibiotics, one through an IV and the other he has to swallow and of course he's rejecting any meds that has to go in his mouth. We've tried hiding them in his food and drinks but he's twigging on to it and will barely even eat a yogurt a day because he thinks there's something hiding in it. Do people really think I'm fine with my son being like this? No I don't it scares me to death!”
People do grow out of conventional fussy eating but I’m hoping you have realised by now SED is not fussy eating.
Many people remain traumatised or stuck in the patterns of the past and do not expand their diet. Sure over the years some clients have told me that they have managed to add some new foods to their diet. However, a significant proportion have also informed me that over the years they have dropped a food or two and their range has shrunk even more!
The majority of people do not grow out of SED without some sort of formal help. Over time habits, as well know, can just become more entrenched.
This is another myth associated with SED simply because of the confusion between SED and fussy eating. Another myth busted.
Parents can’t win with this one. Either they are blamed for having been too soft or too hard, or too absent or too interfering.
Countless clients have told me that once they started seeing therapists about their food phobias, the therapists start asking the client about the relationship with their mother.
While it is certainly true that in a relatively small minority of cases, the family dynamics led to issue of control around food, in the vast majority of cases, when this approach is applied to cases where the relationship of the parents is actually irrelevant to the problem at hand, then it is not only unjust but insulting.
To put this in perspective, last year I got sick and later on that night I threw up a few times.
As it happens, my last meal was a spaghetti with tomato sauce, one of my favourites.
For about a week after, I lost all interest in one of my favourite meals. My defence system played it safe by developing a temporary aversion to pasta. Because I am an adult and a psychologist and I can ‘reason’ with myself, the aversion was short lived. However, now imagine that instead of this event happening at my current age, instead it happened at the age of two years old. My defence system would have exaggerated the nature of the scare and potentially put me off all pasta, or even all pasta-like foods. Imagine further that my mother takes me to a psychologist and the psychologist starts interrogating my mother about the nature of her feeding habits with me. My poor mother would be made to feel guilty about some role she had in something that happened irrespective of her parenting. She has ended up in a situation of paying someone who has only made matters worse. Many parents of my clients (especially mothers) have experienced this awful event multiple times
Remember that scares are a much bigger deal when we are younger. A medium sized dog barking at me at my current age is not big deal. I tower over the dog, and I don’t feel threatened. The same dog suddenly barking at me as a two year old is the equivalent size of a tiger. It is a bigger deal to the ‘me’ of that time.
I could go on and on.
One mother of a child with SED told me that she was a nutritionist and dietician. She told me “Trust me, if anyone knew about a healthy diet, it was me”, but still her child could not eat the food she various food prepared.
Another very common comment is that if SED is related to the quality of parenting around food, then when all things are equal, it would stand to reason that all the other siblings would develop the same problems around food. As one client of mine mentioned:
“My brothers (three of them) all eat normally. We were all raised together and I'm the middle child, my parents did nothing differently with food when we were born. One difference was that I had severe colic as a newborn”. Colic (or early association of pain with feeding) is a major source of SED.
Here is another account from a parent:
“Being the mum of a six year old that's just started school and struggling with keeping up and really low muscle tone so he's walking In pain is so hard to watch.. I would give anything for my son to have dairy in his diet. He is even scared of junk food so that tells you it runs deeper than me just giving him bad food choices.”
To conclude on this point, you could be 'mother of the year' and still not make a dent in SED because the phobic response has its own circuit that will run regardless of your parenting. In the meantime It is very difficult being judged by others for something you are innocent of.
Always assuming it is the parents fault is another inaccurate myth that needs to be re-evaluated in the light of real evidence.
Yes there are certainly cases where children's weight is far too low and potentially some other interventions may need to be explored. There will always be more extreme cases.
I can only relate to what I have seen with numerous clients which is many parents have brought in their children and told me that the child just lives off French friend and bread or something equally limited. When I enquire the child’s health, it is not uncommon to hear "He/she can get a bit tired on occasion, but otherwise fine. Even their doctor says their health is fine”.
Now when I was brought up I believed this idea that if we don't have a certain ratio of food, we will not function and could not survive. This itself is another myth. Regular feedback from my clients tells me otherwise, and not just with young kids, but often with adults well into their late 20's.
So if these people are not eating veg or fruit, or meat or fish, how can they even survive? Where are they getting their protein, carbs and fat from?
The answer is that ALL food ultimately comes from plants. In every plant cell there will be: carbohydrates, protein, and fats. That's how herbivores also grow 'meat'. Through a concentration of all the basic ingredients already present in all plant cells. Sure, we are designed to be more omnivorous than such animals, but it has proven to be possible to survive, and even be in good-enough health, on a very, very limited diet.
I have quite a few video testimonials of clients who are physically imposing – tall, athletic, sporty looking only to be told that they have lived off 1-3 food items. As one mother told me
“My son is an 11 year old (strapping) boy who had SED from birth. He has only ever eaten:
* dry cereal, sometimes milk (separately); crisps, coco pops bar, Choc pots, popcorn, yoghurt and biscuits”. This is an extremely unhealthy diet since birth and yet she goes on to add “He is of normal height and weight and his health is fine. In fact he rarely gets colds or coughs”.
Theories do not always match up to real life
I hope this article has helped put a lot of unhelpful myths about SED out there to rest where they belong.
About the Author
Felix is a chartered psychologist with a very busy private Practice in London, England. He was the psychologist on BBC3’s “Freaky Eaters” (series 3) working with people with selective eating disorder (or ARFID as it is known in the USA) and has since then been sought from clients around the world for help with his one-session treatment for SED.
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