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Beyond picky eating

dish-ARFID

Imagine eating only chicken nuggets, French fries and plain noodles for every meal, every day, with no exceptions. While that may sound like a picky toddler’s dream, the majority of us would quickly find that pretty bleak. (Or beige, as it were.)

But for some people, that diet is their reality—and not by choice.

Avoidant-Restrictive Food Intake Disorder (ARFID), also known as Selective Eating Disorder (SED), was recently added to the newest version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013. Unlike picky eaters, who are choosy about what they eat but can and will eat a variety of foods (at least in certain situations), individuals suffering from ARFID limit themselves to a very small number of foods—usually less than 20. Given its very recent addition to the DSM, Avoidant-Restrictive Food Intake Disorder is still very poorly understood. It is also very different from the two most common eating disorders, anorexia and bulimia, in that it is not rooted in issues with weight gain or body image.

“It’s a fear-driven, kind of an obsessive approach to food,” says Beth Murray, a registered psychologist and eating-disorder specialist who has treated many people for eating disorders in her 16 years of practice. Those with bulimia and anorexia account for the vast majority of her patients; while she has treated people with similar symptoms of ARFID, until the DSM-5 officially recognized it, they were classified within the catch-all diagnosis of Eating Disorder Not Otherwise Specified (EDNOS).

“It probably is one of the lesser-experienced or lesser-known eating disorders, and some of that could be that people just seeing it as, ‘Well, I’m just picky,'” Murray says. “They might not see it as a problem. The difference is, a picky eater can be flexible, whereas someone who has a selective-eating disorder, they’re very rigid. Someone who’s just being picky can still find something to eat, whereas someone who has definitely got that selective-eating disorder, they will have just a handful of foods that they allow themselves to have.”

ARFID individuals tend to gravitate towards typical comfort foods that are high in carbohydrates and will often completely reject entire food groups (commonly fruits and vegetables, as well as meat). While ARFID’s origins are still unknown—it’s often linked to food-related trauma and/or obsessive disorders—the key difference is that while the majority of children grow out of being picky, having ARFID means maintaining very rigid dietary restraints.

“[ARFID individuals] probably have some rules about eating that would be very much eating-disorder-driven,” Murray notes. “It would be the kind of thing that would end up affecting social things, too. The food would basically be an issue that would lead to less social events, less hanging out with friends and stuff, because you feel like, ‘I can’t do that in front of them, or I can’t eat with them, or I can’t eat what they’re eating.'”

Of the many people who have reached out to the Eating Disorder Support Network of Alberta (EDSNA), an agency that provides programs and support to people suffering from eating disorders, only one person has ever contacted them for support for ARFID.

“Because it’s not well-known, people just don’t understand it,” Kathy Bell says. She got in touch with EDSNA earlier in the year for support for her 12-year-old son Zachary, who has been diagnosed with ARFID and who has had a troubled relationship with food since he was a baby.

“They just think that he’s just a picky eater and I’m just catering to his needs—I’m being a short-order cook when I shouldn’t be; I should just be laying a meal out and if he eats it, he eats it and if he doesn’t, he doesn’t,” she says. “But it just doesn’t work that way.”

Bell’s son only eats a handful of foods: fries, buttered toast with peanut butter, pretzels, cinnamon buns, cookies, garlic bread, ice cream, McDonald’s chicken nuggets and Cheerios in milk (though he won’t drink the milk). As one might imagine from that menu, long-term sufferers of ARFID become malnourished, sometimes severely so. Bell’s son takes a multivitamin and three liquid nutritional supplements every day, but he is also very underweight and his pediatrician warned that he might not experience the usual growth spurt for a child his age.

Bell has tried innumerable strategies to get her son to expand his diet. Friends and family have also tried various tactics, and he has visited a horde of psychologists, psychiatrists, hospital clinics and occupational therapists—all to no avail. EDSNA doesn’t have any programs designed for such individuals, but Bell notes the organization has been very keen to work with her in revising its support tools and programs.

Their latest avenue is hypnosis: this week, Bell’s family will be talking to a London-based hypnotist who specializes in treating individuals with ARFID. If it seems like a good fit, they will either travel to London or do a Skype session.

“In the beginning we were just told by so many people that he’s a picky eater and that he would grow out of it—and he never did grow out of it,” says Bell, who believes that her son will not overcome ARFID without intervention of some sort. “So I think it’s just laying off of him and stopping the pressure; we just let him guide himself into what he wants to eat and whether he wants to try it, giving him more power and more control.”

People with ARFID often find themselves increasingly cloistered in adulthood. Food is so integral to our daily schedules and everyone seems to have such strong opinions on diet that individuals with ARFID often become social pariahs. Additionally, the little mainstream information that does exist on the subject is often a disservice to affected individuals, such as the television show Freaky Eaters: the name alone reveals that the show is focused on exploitation, not healing.

Bell is very open about her son’s situation in the hopes that the stigma and misinformation about it will disappear and that individuals will be able to get the help they need. In the meantime, she encourages people to educate themselves on the subject and to not dismiss unusual eating habits as merely being picky.

“Sometimes you can do more harm than good by forcing these people to eat,” she says. “And by putting such pressure on them that you’re making it worse, and they’re miserable.”

 

10 Comments

  • Thank you so much Mel for highlighting this Eating Disorder. I think you covered the topic very well. I have already had people reach out for support, and I think the article will help out a lot of families. I have started a Facebook page called ‘ARFID group of Alberta’ in hopes that others in Alberta can find support from one another and help our loved ones.

  • Thanks for the great and informative article. My 8-yr-old daughter is very picky, to the point where we have major conflicts getting her to eat fruits and vegetables. While her range of acceptable foods is wider than Zachary’s, she very much likes all of the foods mentioned in his list, with the exception that peanut butter is replaced with honey (possible mild nut allergy). Although knowing that her pickiness might be more than just a personality quirk is helpful, we still lack strategies for dealing with this problem. Any suggestions are welcome, and a follow-up article in the future might also be a good idea.

    • You should follow my FB page for ARFID. I can also point you in the right direction for other supports. I know what your going through.

  • Hi. Thank you very much for all the info. Our daughter is 5 years old and eating was always difficult. We ‘ve been seen by the hospital in UK and had her testes for autism and of course she came back as back as being just fine. The dr recognised that her eating is problem indeed and she is not just a fussy eater, is unable to help and there is nothing in place for families that are experiencing this kind of problem. I know my daughter is stuck and I have no tools to help her .
    Are you aware of any support group or dr that could help us?
    I will Defo follow the fb group but I would like to know if there is any support locally as well .
    Many thanks
    Alina. X

  • Hi. Thank you very much for all the info. Our daughter is 5 years old and eating was always difficult. We ‘ve been seen by the hospital in UK and had her testes for autism and of course she came back as being just fine. The dr recognised the eating is a problem indeed and she is not just a fussy eater, is unable to help and there is nothing in place for families that are experiencing this kind of problem. I know my daughter is stuck and I have no tools to help her .
    Could I have a consultation online ?
    Are you aware of any support group or dr that could help us in UK?
    I will follow the fb group but I would like to know if there is any support locally as well.
    Many thanks
    Alina. X

  • Kathy – I’m from BC and my son has been diagnosed as having Extreme Food Aversion, basically ARFID but just different wording as it was before ARFID was added to the books. He is 6, nearly 7. I’m joining your facebook group as I have so many questions to ask others dealing with this! Thank you so much for your article.

  • Update: Our son Zachary who was featured in this article. We have since seeked out a specialist in London England who works with people with ATRFID. Global News Edmonton did an update piece on our son’s rare eating disorder. We’ve has many people across Canada reaching out who think they may have the same condition but were never officially diagnosed. Here is a link to the broadcast. Hope this may be of some help.

    http://globalnews.ca/video/3252852/avoidant-restrictive-food-intake-disorder-update

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