It weighs heavy on my mind, the negative comments from those who don’t live with Selective Eating Disorder (SED). One would think that someone who didn’t know anything about the subject might choose to ask questions instead of offering ridiculous suggestions. Unfortunately, logic escapes many who seem to have an uncontrollable urge to wedge their foot firmly into their mouth. Oh, the irony; reading words from someone with a mouthful of shoe about people who can’t eat but only a handful of foods.

SED is not picky / fussy eating. Picky eating is a temporary childhood phase. SED usually has an underlying cause. There is always a reason that explains why a child refuses food. Despite what the ‘sole’-seeking, armchair critics might like to think, shipping a child or adult with autism or a digestive disorder to a third world country isn’t going to fix their diet any more than it will change the qualities of the food they cannot eat.

Trying to explain that SED is not just picky eating is hard. Not everyone shares the same medical history. Not everyone eats the same foods. Not everyone answers “yes” to all the points on the chart that follows this paragraph. There is, however, a distinct difference between picky eating as a typical phase of childhood development and someone with SED.

The shoe chewing crowd could argue that SED is not really an eating disorder, after all, it’s not in the current version of the DSM. I say, “Keep munching away on that sneaker.” I have yet to speak with anyone who has SED that doesn’t struggle with eating socially to some degree. At a restaurant, the garnish (often an offensive pickle) is leaking juice onto their food; a repulsive sauce has contaminated part or all of their meal. Family gatherings are often dreaded for the overwhelming smells, and the food that is expected to be eaten. Adults with SED learn creative ways to bear the relentless teasing, and the remarks about what isn’t on their plate.

Any event that creates a pattern of behavior that significantly impacts social interaction and/or creates distress for the individual experiencing these symptoms meets the criteria for a disorder. Just because it has not been added to current or previous editions of the DSM or any other medical textbook, does not make Selective Eating Disorder any less real. What it does mean, sadly, is that those with this particular eating disorder have a great deal of difficulty finding treatment for it. Parents, like me, depend on advice and suggestions from other parents of kids with SED, and adults who have grown up with it. Many adults with SED never had anyone take their disordered eating seriously. They have just learned to live with it, a strategy that often involves hiding their limited diets from others by avoiding situations that involve eating socially.

For all the quirks that make it so difficult to describe, there is one unifying truth among people with SED. All of them … Every. Last. One… would, if they were able, willingly choose to eat normally.

UPDATE Added July 5, 2013

Selective eating disorder was officially added to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders in May 2013, and renamed Avoidant/Restrictive Food Intake Disorder.

At the time of the original post, the group of parents and adults that collaborated to create the above chart were aggravated and incensed by the lack of available information on selective eating. Parents, like myself, were fed up with being placated and dismissed with “he’ll grow out of it” while Duke University’s adult picky eating study had heard from over 30,000 respondents. This post continues to attract adults who had no idea there are others who also struggle with eating socially, avoid entire food groups, and often live off a diet that often consists of 30 items or less.

This same post has also attracted knowledgeable feeding professionals who have contributed significantly to the conversation about selective eating.

Speech Language Pathologist, Jennifer Hatfield from Therapy and Learning Services in Indiana describes picky eating as a spectrum, rather than a comparison between extremes.

“A selective eater will NOT “eat when they get hungry.” If you implement a technique designed to “wait them out” or “exert your parental control,” if you alter one of their 10-20 foods, you risk having that food drop out of their food list forever. That. Can’t. Happen. because that would mean lower intake which then would translate into weight loss, nutritional concerns etc..and MORE stress for the child and family.”

Ellyn Satter, Registered Dietitian Nutritionist, Family Therapist and internationally recognized authority on eating and feeding describes eating in general as a spectrum. Developing eating competence is a progression of sequentially satisfying one’s food needs at one level before addressing the needs at the next.

The foundation of Satter’s Hierarchy of Food Needs rest on getting enough food to eat (extreme poverty), followed by having access to acceptable food (unspoiled food, food you are not allergic to). Only after achieving reliable access to food (able to acquire a food stash, and plan for subsequent meals) can people start to consider food selection in terms of taste and appearance.

How does this work with adult picky eating? Consider popular parenting techniques of the 1960s, 70s and 80s and how a parent would be advised, even encouraged to respond to a picky eater. A child who is repeatedly sent to bed hungry for not touching anything on their plate, declining the vegetable, or gagging on the chicken is not learning that there is a constant and reliable access to food. Despite the full pantry, this particular child is growing up with food acceptance skills at the very bottom on the food needs hierarchy. As a result, the need to satisfy hunger is commonly met with energy dense, low nutrient carbohydrates.

Once people learn they can readily access enough, acceptable, reliable, and good-tasting food, only then are they able to comfortably consider novel food and finally, choosing what to eat for instrumental purposes (calories, specialty diets, etc).

It’s common for the adult picky eater to refer to eating as “a chore.” Adult PEs at the lowest levels of food acceptance tend to see food in terms of “edible” and “repulsive”, often wishing all their caloric and nutritional requirements could be met with a supplement to avoid eating all together. With this in mind, adult picky eating is less about being stubborn and hard-to-please and more about living in a food-focused society with under-developed food acceptance skills.

In terms of helping the adult picky eater embrace or expand what they can eat, Satter offers:

“To help yourself, begin by addressing your attitudes about eating. You are entitled to like what you like and to feel good about eating what you eat. Once you learn to be kind to yourself about eating, work on protecting yourself from food pressure. Be matter-of-fact and unapologetic about saying ”yes, please,” and ”no thank you.” Don’t complain and don’t explain.”

What anyone eats is nobody else’s business. If someone else is offended by what is or isn’t on your plate, that is their problem, not yours. It is, and always has been, the eater’s responsibility to choose how much to eat, and that includes the right to say “no thanks” to offerings of anything you don’t want, especially when it’s served with judgement, ridicule, stress, pressure and guilt.

Please continue to add to the conversation.