“If our son is forced to adopt specific eating behaviors, he will definitely become a homemaker,” says Rita Maris (46), an expert on the eating disorder ARFID. Two of her six children have this diagnosis; an eating disorder in which people eat very little or selectively.
The eating disorder is not focused on the person’s appearance, as in anorexia or bulimia, but on the texture, taste, color, smell, temperature or perception of the food itself. “My youngest child has had it since he was a baby. From the moment we started offering solid food, like pieces of bread, it seemed like he was choking. While he could not choke at all on that mini piece of bread, which was also dipped in milk.”
The biggest misunderstanding
“Later our son was diagnosed with autism and things fell into place,” says Maris. Many people with ARFID are also on the autistic spectrum. “It is good that schools are focusing on healthy eating, but then there must first be more knowledge about eating disorders such as ARFID, which has been an official diagnosis since 2013.”
“Schools think: this is a parenting problem. That is the biggest misunderstanding. Parents don’t educate wrong and children don’t act up. Eating is experienced in such a different way by people with ARFID that it can even be traumatic.”
There are now five products on her son’s ‘safe food list’. “Wholemeal bread with a specific chocolate spread, Olvarit with brown bean flavour, Nibb-it chips, one type of biscuit and a specific lemonade syrup. When that lemonade could temporarily not be delivered, it meant an absolute emergency. He doesn’t drink anything else.”
Tips from ambassador Maris
• If in doubt, contact healthcare providers who have knowledge of ARFID.
• A dietician can help by calculating whether there are nutritional deficiencies.
• Be welcome in the Facebook group ‘Attack ARFID!’. There is a lot of recognition and knowledge to be found.
• Don’t feel guilty as a parent: you’re not a bad parent if your child has this.
• Keep explaining to people around you. Don’t keep this eating problem a secret.
Annemarie van Bellegem, pediatrician in social pediatrics at Amsterdam UMC and specialized in eating disorders, takes ARFID very seriously. “Children with this diagnosis are sometimes genuinely terrified of eating certain products, or of choking. For example, they can also have a huge aversion to all food with the color orange.”
Traumatic experience
“In general, this syndrome occurs in children, but adolescents and adults can also suffer from it, often due to a traumatic experience. I have someone in my practice who once choked on a Mentos and as a result has not dared to eat solid food for eight years.”
“Many of my patients are children with autism. They have a different mouthfeel and experience spongy or hard products as very unpleasant, for example. Because the disorder often has to do with fear or negative feelings, it is possible to teach new behavior with behavioral therapy. The main aim is to remove the negative association of food and to link it to new, positive stimuli.”
Enlist help
“ARFID is very often confused with children who have a monotonous eating phase. This causes parents to be misunderstood. Because of the social pressure and the fear that their child will lack nutrients, even more pressure is exerted on the child. This is only counterproductive.”
“It is good to get help in time, so that a doctor can monitor a child’s growth and the intake of nutrients and vitamins. The doctor can also refer you for appropriate psychological treatment. In addition, I think it is important to pay attention to the entire system. So not only for the child with ARFID, but also for the parents and perhaps the younger sister who gets everything at the same dining table.”
Tips from pediatrician Van Bellegem
• Go to the doctor if you are concerned.
• The website firsteetkit.nl offers a lot of useful information.
• My rule of thumb: lovingly limit your child and have a lot of patience.
• Get support. When there is ARFID, you simply cannot solve it on your own. Also provide guidance for the rest of the family.
• You will encounter misunderstanding or well-intentioned opinions. Don’t let this drive you crazy and know that you are not alone!