7 things you should know about ARFID

“Why don’t you just stop buying goldfish crackers?”

So many families that have a child with a diagnosis of Avoidant Restrictive Food Intake Disorder (ARFID), have heard this comment, or something similar, from friends, neighbours and strangers a million times over.  

I want to give humanity the benefit of the doubt that when we say things like “just don’t buy goldfish crackers and they’ll eat something else” that we don’t mean harm. Rather, we are simply trying to help out a fellow parent in the trenches of raising tiny humans. Perhaps, with a very simple solution, that may have worked like a charm for you.

The thing is, the parent you’re talking to isn’t stupid and they’ve already tried that and a million other strategies. Goldfish crackers may be one of only three foods their child eats. Take that away and they simply further starve their body and the stress levels escalate for everyone.

They’ve also likely spent a lot of money buying books, online courses and googling until all hours of the morning.

ARFID is not a well-known eating disorder. Clinicians and researchers are only starting to understand the complexities of this eating disorder and the best treatment path for families. So needless to say, your neighbours, friends or co-workers likely have no idea what you are dealing with either.

It’s my goal that with more awareness around this eating disorder (and other pediatric feeding disorders), that we can start to break down the stigma that parents and children currently face. Because there are no positive outcomes with feeling stigmatized or shamed.

Did you know that this week is national eating disorder awareness week in Canada? It’s a fitting time to share with you 7 things you should know about ARFID.

7 Things you should know about ARFID

#1 ARFID is an eating disorder and mental health disorder.

ARFID was added to the DSM-5 (Diagnostic and Statical Manual of Mental Disorders) in 2013 and it is classified as an eating disorder. It is diagnosed by a physician or psychologist when a child cannot eat enough meet their nutritional needs. This is because of many potential reasons (or combination of reasons), including lack of interest, avoidance based on sensory aspects of food, or concern about what might happen if they eat a food. This feeding disturbance also has to be linked with one of the following:

  • Significant weight loss (or failing to gain expected weight or faltering growth in kids)
  • Significant nutritional deficiency
  • Dependence on tube feedings or oral nutritional supplements
  • Marked interference with psychosocial functioning

What’s different about ARFID from other more commonly known eating disorders is that the lack of eating is not due to a poor body image or a desire to shrink their body shape or size.

#2 There isn’t a cookie cutter prototype for a child who is at risk for ARFID.

Any child can develop ARFID. Full stop.

There are some factors however that can act alone or all together to make a child more likely to develop this eating disorder.

  • Neurodiverse children with diagnoses such as autism spectrum disorder (ASD) & attention deficit hyperactivity disorder (ADHD) are more likely to develop ARFID
  • Children who don’t outgrow picky eating, or if picky eating is severe, are more likely to develop ARFID
  • Many children with ARFID have a co-existing anxiety disorder and are at a higher risk for other psychiatric disorders

#3 It’s not normal picky eating.

Picky eating exists on a spectrum and ARFID is on the extreme end of that spectrum. It’s not just about a child avoiding all of the veggies at the dinner table. It is intense and crippling fear of foods or whole food groups. Sometimes this fear is due to the sensory aspects of a food like the texture, smell, colour etc. Other times, it’s brought on by a traumatic event like choking. For one child I (Rosanne) worked with, it was brought on by hearing a story about a pet that choked on its food and died. This brought on such intense fear for this little one that they refused all food and fluids, requiring hospitalization.

For many with ARFID, the physical pain of hunger is NOTHING in comparison to the fear and anxiety they experience around trying a new food. They would choose hunger any day.

#4 Signs that what your child is experiencing is more than “just picky eating“.

I put “just picky eating” in quotes as I don’t believe that picky eating is “just” picky eating. Picky eating is a real struggle for many families and not something to be diminished or devalued.

As shared by NEDA, here are a few things to look for if picky eating is starting to teeter into potential ARFID territory:

  • Dramatic sudden weight loss or sustained weight loss or failure to gain weight (without any body image struggles or fear of weight gain)
  • Complaints about being cold
  • Digestive issues like constipation, tummy pain, feeling “full” around mealtime
  • Only eats very specific textures or types of food
  • Fear of (or currently) choking, gagging, vomiting in anticipation of eating or with eating
  • No appetite or interest in food
  • Older girls may have menstrual irregularities (e.g. missing periods)
  • Feelings of dizziness or fainting
  • Results of blood work may show abnormalities (e.g. low iron or hormone levels etc.)
  • Weakened immune system and poor healing of cuts and wounds
  • Inability to eat with others, even own family  due to disgust of their food  

#5 It’s not the child’s fault. It’s not the parent’s fault.

A child who eats three foods and cannot tolerate eating at the table with anyone else is not trying to be bad. They’re not trying to make their parents’ lives miserable. They’re not trying to be difficult. It’s not their fault.

I practice by the motto that a child’s behaviour always make sense. Their behaviour is a form of communication. It’s up to us to figure out why it makes. For instance, a child with ARFID might appear to be defiantly avoiding coming to the table for dinner. If we look closer, it could be that they are avoiding the table because of a negative association they have with it. The table to them might be a place of fighting, yelling and feeling inadequate because they do not eat. Better to avoid it then feel shame and guilt.

ARFID is also equally not the fault of a parent’s actions or inactions. No parent wishes an eating disorder on their child. All parents try to do the best they can to feed their children well, with the information they have.

#6 The parent who is struggling with a child with ARFID has tried everything you are going to recommend … and then some.

We all desperately want to help each other (at least that is my naïve belief!) and so our tendency when someone shares their struggles around feeding their kiddo is to try to fix it. A parent who has a child who only eats three foods doesn’t need you to fix it. They need you to listen to them without interrupting, to give them a shoulder to cry on, to send them for a massage while you watch their kids.

The only advice I would ever recommend that you give a parent who is struggling with a child with diagnosed or undiagnosed ARFID is to reach out for help from a team of health care providers (including a pediatric registered dietitian, pediatric occupational therapist, and child psychologist) who are trained and who specialize in this area.  

#7 Having a child struggle with ARFID is just as debilitating as having a child struggle with an eating disorder such as anorexia nervosa or bulimia.

It is well known that caring for a child with an eating disorder (whether it’s ARFID or another eating disorder) is hard work, and it’s been especially difficult during the COVID-19 pandemic. The sheer stress of it all can tear marriages and families apart. The role of caregiver for a child with ARFID is a stressful one. It’s difficult to balance caring for a child who does not eat easily/at all while trying to acknowledge and attend to your own needs.

Here are a few suggestions for supporting someone whose child has ARFID:

  • Offer to be a part of their support team and get to know how you can support them best  
  • Provide empathy and validation of their lived experience. Don’t try to fix things.
  • Invite their kiddo to come and play with your kids for a couple of hours so that the parent(s) can have some time for self-care

Working through an eating disorder requires a team-based approach. There are various treatment modalities for a child who is struggling with ARFID. We help to support families who are struggling with this condition alongside the support of an Occupational Therapist and/or Psychotherapist trained in eating disorder support. Contact us to learn more.