“The most frustrating thing about living with ARFID is that nobody knows what it is. It’s a real eating disorder and not a choice, I’m not just being picky and awkward. I just wish more people knew about it.”
We recently asked families who deal with the reality of having a child with an eating disorder for their experiences of how society viewed them and their child. For many of these families, the well-meaning comments from friends, families, communities and even health professionals made them feel judged. Breaking the stigma associated with eating disorders is the focus of this year’s World Eating Disorders Action Day (2 June 2018). While more of us are aware of eating disorders like bulimia, anorexia and binge eating, very few know about Avoidant Restrictive Food Intake Disorder (ARFID) and this is at the heart of much of the stress and challenges faced by families.
ARFID is a relatively new diagnosis that describes the eating patterns of a child or young person with severe selective eating. ARFID is not just a picky eating stage that most children go through, it is an eating disorder that sees a child or young person show a lack of interest in eating or food; avoid foods based on the taste, texture or smell of foods; be extremely selective about foods that they do eat; or are concerned about the consequences of eating like being sick or choking.
I started working in the feeding disorders field in 2009 at Great Ormand Street Hospital in London. Over the years I have met and worked alongside many families who are struggling not only with coming to terms with their child’s severe restricted diet and diagnosis of an eating disorder but also the societal judgements that come as part of that diagnosis. For many families there is also an element of grief with parents often commenting that their child ‘used to be such a good eater’.
The discrimination and judgement experienced by people with eating disorders can make their difficulties worse and make it harder to recover. So, how do people’s judgements affect children and families who live with ARFID?
1. Very few people understand what we’re going through
As a society we communally determine what is ‘right’ and ‘wrong’ and these beliefs are often passed on from one generation to the next. It is unfathomable to many that a child wouldn’t want to eat, that surely if foods are presented enough times a child will eat them, that if they are hungry enough they will eat. These beliefs, while maybe true for non-selective eaters, demonstrate a lack of awareness and understanding of ARFID. More is known today than ever before about eating disorders like bulimia, anorexia and binge eating with a greater understanding that they are not a ‘choice’ but a treatable illness that can affect anyone. However very few people know about ARFID and it seems that unless you are living with the disorder, understanding it seems impossible.
“I think a lot of the judgement comes from the fact that it’s not a well-known diagnosis. When you mention your child has an eating disorder people look down their noses at you. When you say my child is an extreme picky eater people tell you to harden up and force feed them. When you try to educate people, the comments make you not want to educate anyone.”
Based on these widely held assumptions it is little wonder that society fails to see ARFID as an eating disorder, preferring instead to label the child as fussy or picky. While many children will go through a fussy stage, ARFID is not just picky eating. Research released in 2015 estimates that 20% of children aged 2 – 5 years are selective about what they eat. Of those 17% have moderate selective eating and 3% whose eating impacts on their social participation. For children and young people there are frequently other factors influencing feeding challenges other than ‘behaviour’, including gut issues, anxiety, medical, sensory, developmental (such as Autism Spectrum Disorder) or interaction difficulties.
“It’s so disheartening as a parent having all these things said to you especially when you’ve taken the time to open up to someone about your struggles and explain that you’ve tried all the tactics and they don’t seem to listen to you and spout off with those ‘helpful’ comments. It’s maddening.”
Unfortunately for many families, it’s not just strangers whose uniformed comments leave them feeling judged. Wider family members and friends are also struggling to understand ARFID and how they can be supportive. This can be compounded when the child previously ate a wide variety of foods.
“I think family has been the biggest judge. They made it so difficult to the point where my son won’t stay at his grandparents because nana tries to make him eat non-preferred foods. People just don’t get it. He WON’T eat when he’s hungry, he will starve.”
“I often hear passive aggressive comments from other parents like ‘at our house no one is allowed to leave the table unless they eat what they have been given’. Friends of ours told us that our son ate such and such when they were looking after him, but later we found out from our son that he had tricked them by moving his food around the plate when they weren’t looking.”
These strongly held societal beliefs about fussy eaters frequently affects the responses and explanations ARFID families receive when they ask for help from health professionals. Often families feel as if their opinions and concerns haven’t been heard or validated. Being brushed off contributes to their feelings of shame or makes them reluctant to seek further medical help. This may lead to a failure to diagnose ARFID or delay a diagnosis.
“I got advised by a psychologist to go on a parent course. That hurt. They hardly assessed my son for what we were describing. It’s like they didn’t listen to use at all.”
“I was told by a paediatrician that my son’s eating issues were ‘all in my head’ and that ‘some parents look for problems that aren’t there as a way to get attention’, and that ‘if he’s hungry, he will eat’.”
One of the most persistent and dangerous myths about eating disorders is that the person with an eating disorder is extremely underweight or had a dramatic weight loss. ARFID is not about body image. In fact, a critical diagnostic criterion for ARFID is that the child or young person does not have body issues or concerns. Many children with ARFID are within normal growth and weight limits. Younger children with ARFID may not experience weight loss but their growth and development might be out of line with what expected for their age.
“Because my son is not underweight or unhealthy I often get told that I must be making it up or that I’m making it a bigger deal that what it is and it’s not really important.”
2. So many people blame the parents and your parenting style and choices
Because many in society see fussy eating as a controllable situation, there is little empathy for those struggling with ARFID, and their families, who they believe have the power to change the situation by simply force feeding or stop offering the child’s preferred food. All too often the finger of blame is pointed at the parents who many believe have created and perpetuate the problem by pandering to their child’s ‘fussiness’.
“You’re made to feel like it’s your fault and that somehow you created this ‘fussiness’ by not offering them a full range of foods in the first place.”
“I think one of the biggest stigmas is the view that as parents we are being walked all over or manipulated by our children. So many comments I get are ‘oh he won’t starve himself,’ ‘if you serve it enough times eventually he’ll eat it’, ‘don’t let him down from the table until he eats what you’ve served’.”
“People think that we are just ‘soft parents’ and ‘allow her to be fussy’. These comments go hand-in-hand with ‘give her to me for a week and I’ll have her eating’.”
People’s comments assume that parents are happy that their ARFID child has an extremely selective diet and that they haven’t tried every possible trick, tactic or technique to get their child to eat. In reality, families we see at Sprouts OT come to us in tears having exhausted all other options and wanting to know what else there is that they can try.
3. We feel socially isolated
Both people with ARFID and their families report feeling socially isolated as a result of the eating disorder and people’s judgements about it. Families often distance themselves from those who have made hurtful comments or make decisions about what events they go to in order to minimise the judgement.
“I have learnt not to put myself in positions where I eat with people I don’t know.”
When a child has ARFID, the whole family is impacted. AFRID influences what the family eats and limits the foods that are brought into the house. It can limit the family’s participation in social activities such as birthday parties, other ‘kid events’ or school camps and even makes it hard to travel with families telling us they have to carry a suitcase full of their child’s preferred foods.
“I feel extra judgement as we are a vegan family – both of my children have been vegan since birth but only one has ARFID. I hate having to explain when he goes to parties that he is vegan AND has ARFID. I often don’t mention he has ARFID and hope they don’t go to any extra effort to get vegan food for him that he simply won’t eat. It’s happened before and is very embarrassing. They probably think he is rude for not appreciating the special thing they have done just for him. He becomes quiet and withdrawn and looks away when faced with trying a new food so could be mistaken as rude.”
So, where to from here?
As is the case with any illness, increased attention and awareness helps with public understanding. Understanding from family, friends, schools and medical professionals can make a big difference in not only the treatment process but also the day-to-day life of those living with this eating disorder. Even if those around these families still find it difficult to understand or accept ARFID, not passing judgement or offering suggestions to fix the problem can be a huge relief. Unfortunately, there’s no quick fix and sometimes it can take years to change social beliefs. Society as a whole must challenge the judgements surround ARFID and recognise how judgemental comments may discourage those with a child with ARFID from seeking help or opening up. The TVNZ Sunday documentary in August 2017 helped to start the conversation about ARFID, and there are several online forums and blogs that help to share information about AFRID and raise awareness. But more can, and must, be done. Sprouts OT has been educating local General Practitioners by speaking at doctor’s continuing professional development sessions and providing in-services on ARFID. It is encouraging to see online communities being created to support those with ARFID and their families. These are safe places for everyone to share their experiences, vent about their frustrations and ask for advice without the fear of judgemental comments.
If you are concerned about your child’s selective eating, please contact us for more information about a feeding assessment and treatment.
We would like to acknowledge the families that shared their experiences with us and were happy for their comments to be included in this blog.