Let's talk about ARFID! And NO it is not picky eating...

I like to blog about issues both big and small that parents are struggling with, especially topics that don’t seem to get a lot of attention and that often leave parents suffering in silence or feeling confused and alone. While Facebook (and all social media) definitely has some serious drawbacks, I also find certain aspects to be super helpful for parents, myself included, and it’s actually where I got the idea for today’s blog. A few weeks ago, a mom in a moms’ Facebook group (called UES moms with over 30K members) posted a messages asking if anyone knew an ARFID therapist. Since I am an eating disorder specialist, I am familiar with ARFID and also know several people I was able to connect her with to help her child. After the exchange, I was inspired to write this blog because several other members in the group contacted me saying that reading about ARFID and what it is helped them identify what their child has and led them to get the right support for their family.

One of the moms, who wants to remain anonymous, called me following the ARFID post and shared the following: “For the past nine years, my family went through so many challenges related to my daughter’s “food issues” that I now understand are not just about the food…” She told me that since her daughter was a baby she has struggled with a variety of challenges, and between the occupational therapist, speech therapist, numerous visits to the pediatricians and many sleepless nights full of stress and anxiety, there never seemed to be a real solution. She said that when she read about ARFID and what it meant she knew right away that was what her daughter was struggling with all this time. She felt a sense of relief, and after researching the various types of treatments, decided to take an active role in helping her daughter. Obviously, a diagnosis doesn’t change everything immediately, but being able to put a label on something that is plaguing your child and affecting your whole family is the first step in taking a strong course of action and finding the right treatment.

A lot of the moms I talked to were curious as to why ARFID isn’t discussed more and why a lot of professionals don’t seem to be familiar with it. The fact is that ARFID is a relatively new disorder in the DSM 5 (the “bible of psychology”) and can often be dismissed as picky eating or labeled as some other type of eating disorder.

Below I’ve compiled a list of the most common questions regarding ARFID to help you learn more about it and how you can seek treatment if you think it might be affecting your child. I hope that you find this overview helpful, and if you have any additional questions or want a referral for someone who specializes in treating ARFID, don't hesitate to email me at limor.w@limorweinstein.com.

What is ARFID?

ARFID, or Avoidant Restrictive Food Intake Disorder, was added to the DSM 5 in 2013 and was previously referred to as “Selective Eating Disorder.” ARFID is similar to anorexia (which more people are familiar with) in that both disorders involve limitation in the amount and/or types of food that the individual consumes, but unlike anorexia, ARFID does not involve any distress about the body shape or size, or fears of ‘fatness.” While many children go through phases of being picky or selective eaters, someone with ARFID does not consume enough calories to grow and develop properly, and later on as an adult, to maintain basic body functions (National Eating Disorders Association). There seems to be a genetic component involved with picky eating or extra sensitivity toward internal and external stimuli, and those who are diagnosed with ARFID often avoid food because of a dislike to color, texture, smell or taste. Some individuals might also develop a fear of choking, gagging or vomiting. While there are shared characteristics with picky eating, ARFID is much more serious.

Most people seek help when they realize that having ARFID results in problems at school and other areas of a child’s life. Therefore, professionals who treat children and adults with ARFID, or any kind of eating disorder or disordered eating for that matter, highly recommend that parents consult with a professional during the early stages, as early intervention is paramount. It is quite important to distinguish ARFID from picky eating, which is relatively common among children (20-30%). It is only a small subgroup of picky eaters whose behavior becomes more persistent, leading to either malnutrition and weight loss with medical complications similar to anorexia nervosa and/or impairment of psychosocial functioning.

The avoidance of eating may also be caused by traumatic experiences related to consuming food, such as a personal or witnessed episode of choking, gagging or vomiting. Some studies have identified incidences of ARFID occurring in between 5% and 10% of children. In comparison with anorexia, patients with ARFID tend to have a longer duration of illness and a higher proportion of males are affected. There are also higher rates of comorbidity with anxiety disorders (up to 75%) as well as higher rates (up to 55%) of comorbidity with functional gastrointestinal conditions like bloating, nausea, heartburn, irritable bowel syndrome, etc.

How can I tell if my child has ARFID?

According to the DSM 5, ARFID is defined as:

Disturbances related to feeding or eating (ie. lack of interest in food or eating, avoidance based on sensory characteristics of food) that is being manifested by persistent failure to meet appropriate nutritional and/or energy needs associated with one (or more) of the following:

1. Significant weight loss (or failure to achieve expected weight gain)

2. Significant nutritional deficiencies

3. Dependence on enteral feeding or oral nutritional supplements.

4. Marked interference with psychosocial functioning.

5. The disturbance is not better explained by lack of available food or by an associated culturally sanctioned practice.

6. The eating disturbance does not occur exclusively during the course of anorexia or bulimia, and there is no evidence of a disturbance in the way in which one’s body weight or shape is experienced.

7. The eating disturbance can’t be attributed to any other medical condition and can’t be better explained by another mental disorder.

Risk Factors Associated with ARFID

As with all eating disorders, the risks of ARFID involve a range of biological, psychological and sociocultural issues. This will clearly differ from individual to individual depending on the experiences and symptoms. You might also wonder who is at risk to develop ARFID. So far, this is what is known according to research:

• Children who are extremely picky eaters and don't outgrow it are more likely to develop ARFID. This is clearly not to say that if your child is a picky eater he/she will develop ARFID, but it is saying that it is a risk factor.

• Children with autism spectrum disorder, ADHD and intellectual disabilities are much more likely to develop ARFID .

• There is a comobirty between children with ARFID and anxiety disorders.

Are there any physical consequences that can result from ARFID?

As a mom of three girls, one of whom is an extremely picky eater, I find myself thinking about the physical consequences of being a picky eater and wanting to make sure my daughters are eating the right kinds of food so that they grow and develop healthily. ARFID is a whole other story, however, because there are definitely more severe physical consequences for children (and adults). While ARFID doesn’t share all the criteria with anorexia, it does share the inability to meet nutritional needs, which can result in difficulty concentrating, abnormalities such as anemia, thyroid problems, low potassium levels, low blood cell count and lower heart rate. With young women, this can also cause menstrual irregularities and missing periods altogether. People who are diagnosed with ARFID sometimes also experience stomach cramps and other gastrointestinal complaints such as constipation, acid reflux, etc. These individuals might also experience dizziness, fainting, feeling cold all the time, sleep problems, dry skin and thinning of hair, as well as muscle weakness with impaired immune functioning.

What are the treatments for ARFID?

While this is a relatively new diagnosis and there is not a lot of evidence to inform best treatment practices, there are some proven treatments that are geared toward restoring weight and correcting nutritional deficiencies, with ways in which to add new foods to your child’s diet in order to increase the variety and at the same time address the anxiety and other relevant comorbidity of the disorder. One form of treatment that has been modified specifically for cases of ARFID is called family-based treatment. It is usually used for people with anorexia, but the focus is on young people presenting with low weight and it has been found to be helpful to treat those with ARFID as well. Treatment includes coaching around behavior strategies to help manage meal time, and includes exposure to new food. Another important component is to help with the symptom management of the anxiety that can either be a direct consequence of this disorder or caused by something else entirely. Biofeedback was also found to be helpful with anxiety management as well as other symptoms related to ARFID. When an individual is diagnosed with ARFID or experiences symptoms related to this disorder, it is important that the entire family is included in the treatment, as they are all affected in one way or another. Treatment will emphasize the importance of not just developing new eating behaviors but also understanding the related emotions and their effect on the disorder.

What Should I Do if I Want to Know More?

As with any problem you are dealing with in regards to your family, it’s always best to ask questions and not be afraid to speak up. Whether you find Facebook mom groups helpful or other outlets where you can talk to other parents who might be experiencing something similar, researching and opening up dialogue about these things is a great first step. Now that you do know more about ARFID, if you think this is something that applies to your child, it’s best to contact a professional. Don’t hesitate to reach out to me with any additional questions or for a referral to a professional who specializes in the diagnosis and treatment of ARFID.