ARFID – What Every Parent Needs To Know
ARFID is not picky eating. It is a real and serious phobia or phobic aversion. Picky Eating is a normal phase for most children. They CAN eat foods but don't want to yet.
ARFID is based on a mini-trauma experience creating an aversion – the child WANTS to eat foods but CANNOT regardless of incentive. In fact the child would rather starve than eat something 'unthreatening', so starving your child, threatening it, bribing it, guilt tripping etc, will not work and is actually counter productive.
Recently I asked members of the Facebook 'Selective Eating Disorder' forum (over 400 members) what advice or responses would they would have really appreciated right from the beginning that would have made the biggest difference for them growing up.
Certain themes popped up time and time again. The following are replies copied and pasted from members. Parents take heed: this is from people with ARFID who have been through it and found out the hard way. You can spare your child and yourself a lot of frustration by listening to the experience of others.
ARFID themes, in no particular order of importance:
- "This isn't you (the parents') fault. Most health professionals don't know about ARFID and you're made to feel like it's something you've done to make your child like this". – I would also like to add here that you could be 'mother of the year' and still not make a dent in ARFID because the phobic response is by definition emotional not intellectual. It is very difficult being judged by others for something you are innocent of.
- "Cut out the pressure!" – "Don't pressure your children about food! It does more harm than good. Don’t make food an issue, let them have the ability to choose (within reason) rather than tell them what they can eat. Less pressure equals less anxiety". – Time and time again members have said how pressure from those around while they were growing up made things worse. People who develop ARFID tend to have headstrong personality traits where pressure is the worst approach for getting them to change. "Do not starve your child because the Doctor said they will eat when hungry its just a guilt you will carry with you for the rest of your life. Get angry at the disorder not your child"…. And "Give up the mealtime fight its just going to make you both cry. Do not force food on your child". In addition "always have something on the table that your child can eat along with food you, the parent would like to see your child eating. Let your child eat as much as she wants from what you offer. Don't expect immediate miracles. Focus more on creating a relaxed mealtime atmosphere and being well behaved at the table. Your child won't want to try new foods, or even eat at all when they feel stressed".
- "You are not alone" (for the child) – a child going through ARFID does not understand their reaction let alone be able to articulate it to their parent. In the absence of information a parent or others may jump to the conclusion that they are just being difficult. In the words of one member: "I would certainly encourage parents to explain to their children with ARFID they are not if fact "the pickiest person in the world" and there are lots of others who share their thoughts and feelings. I think it would have also been helpful to me to have met or at least talked to another person with ARFID as well".
- "You are not alone (for the parent) – "My advice for any parent is to make sure you push for the right help from your health professionals and join as many groups to do with this topic to get advice and help from other people who live with ARFID". – Find out what works from those who have tried by trial-and-error.
- “Don't be bullied by doctors or other mental health professionals” – it is pretty difficult to find a health professional who KNOWS about ARFID. Most will think it is just normal picky eating and that the child 'will grow out of it', and may advise depriving the child of safe foods until it caves in. Others will chase red herrings with lengthy referrals to ear-nose-throat specialists, learning disabilities etc. Unfortunately, you may have to educate your doctor about the reality of ARFID.
- “Prepare for a long fight for your rights” – Sorry there is no easy way to say this: you will be judged… judged by the people you trust the most in the world, doctors, teachers, religious leaders, friends and worst of all family. They will call you lazy, tell you, you are letting your child control you, tell you that your kid is just spoiled. You will hear so many "If that were my child's" you will start to believe the lectures and judgements. You know your child, only you know the tears and struggles and the real state of affairs'.
- Respect your child's difficulties – "don't put foods on plate that aren't safe, don't talk about them being fussy when they're right there, no force feeding, no pressure, all things that make it bad. If eating out anywhere, organise to have safe foods provided, pre-order, places have made me food that was not on the menu when given a phone call in advance. Eat as a family together at a table otherwise your making a deal about, as is talking about it though!!" Your child did not ask to be traumatised by some experience lost in the mists of time. If they had a choice at the time, they would have chosen an easier life than a potentially life-threatening, socially awkward option that ended up making some socially anxious as adults and pass on job offers and relationship offers.
- Put ARFID into its proper context – Your child has a phobia. It just so happens to be about food. You wouldn't blame your child for a spider phobia. You would sympathise and realise it got a fright or shock from a big spider appearing out of nowhere. Your child got spooked about some connection or association with food. Explain to your child and others about the fact that it's just a phobia in action, that 30% of the population have serious phobias, and this one just happens to be about food. Helping to 'normalise' ARFID for your child at a young age prevents them becoming self-conscious, self-blaming and socially anxious later on as an adult.
- PATIENCE Baby steps!- Just trying new foods, even if your child does not like them, is still a success. It is a sign that your child is still taking steps to overcome their fear.