My son Toby is now 7, and he has always had challenges when it comes to feeding and eating. I hope this blog post can help other parents to learn more about extreme picky eating and ARFID (Avoidant/Restrictive Food Intake Disorder) and the support that is available.

About Toby – Extreme Picky Eating 

When Toby was born he had a tongue-tie, a poor latch, and he was intolerant to many foods which hurt his tummy. I think this was probably the trigger for his extreme picky eating. When it came to weaning he was not very interested, and would only eat 2 types of puree pouch. Then as a toddler, just small amounts of plain pasta, plain bread and crackers, and luckily some fruit. It was so hard seeing other families with kids eating ‘normally’, I thought I must be doing something wrong but I couldn’t work out what it was. It was a very lonely and stressful experience.

We saw nurses and GPs, who gave us what I now know to be poor advice: “keep distracting him to get something in”, “he’ll grow out of it”, and “he won’t starve himself”. But he was stubborn, and he would not eat food he didn’t want. It often ended in tears for all of us. We kept him on toddler formula, and he would accept smoothies and protein shakes, so he got nutrition that way. But still, I dreaded mealtimes every day, and I’m sure he hated it too. It was such a battle to get him to eat anything really.

Ellyn Satter’s Division of Responsibility

We went to see a dietitian when he was 2, she was lovely and understanding, and she explained Ellyn Satter’s Division of Responsibility to us. This means parents decide when, where and what the meal is, children decide if and how much they will eat. The idea is to:

  • Stop pressuring the child to eat – to reduce stress
  • Eat with them – so that they see you modelling eating a variety of foods
  • Allow them to serve themselves – so they can interact with food, even if they don’t eat it
  • Present everything deconstructed, family style in the centre of the table, with each food in its own bowl and with 1 or 2 ‘safe’ foods (e.g. bread or fruit for my son) – so they can always find something to eat

This worked well to destress our mealtimes, and we still eat like this now. But by itself, this didn’t result in my son choosing to try new foods, he stuck with his safe options.

Extreme Picky Eating

Sometimes Extreme Picky Eating Can Occur with ASD

When Toby was 3, I had the good luck to hear about an Occupational Therapist near us who was trained in feeding therapy. Toby loved her, he thought going to see her was this great hour of fun where we played games and he had all the cool OT equipment to try out! She was able to assess him for any other factors which could be contributing to his eating habits. Sometimes extreme picky eating can occur with Autism Spectrum Disorder and other developmental challenges. She noticed in Toby some sensory sensitivities and some under-developed oral-motor skills (the way he used his mouth) and core strength issues. So we worked on improving those, in conjunction with the feeding therapy itself.

The therapy she used was play-based and the psychological term would be ‘systematic desensitisation’. In other words, we played with food! We had sword fights with carrot sticks, we gave sausages napkin-capes to make them super-sausages, and we played soccer with peas! We created fun memories with food, to counteract all the negative associations in his mind. We took small steps, from being able to sit at a table with a new food, to touching it, smelling it, kissing it, and eventually tasting and trying to eat a very small amount. We did this for a year, and then we carried it on at home.

Extreme Picky Eating

Learning About ARFID & Seeking Help

Through my own research I learnt a lot about the eating disorder ARFID – Avoidant/Restrictive Food Intake Disorder. There is some level of picky eating which is developmentally appropriate from around 18 months to 3 years old. ARFID is more than regular picky eating, and usually needs help to overcome. Kids with ARFID usually don’t eat much variety, only eat small amounts, take a long time to eat, have an intense fear of new foods, and can be reliant on supplements for nutrition. It’s also important to know that ARFID is different to other eating disorders in that it is in no way related to body image.

To get treatment for ARFID or extreme picky eating you might see an Occupational Therapist, Speech Pathologist, Psychologist, Dietitian or Nutritionist. Some private health funds will cover part of the costs, and you don’t need a referral from the GP. But to get the diagnosis and rebates from Medicare you do need a referral from your GP to see a psychologist first. ARFID only became known as a mental health diagnosis in 2013, so some GPs may not be aware of it. We’ve spoken with several specialists now, and they have agreed that Toby has ARFID but is now in recovery. We haven’t kept pushing for the formal diagnosis, as I think we have the right support, but I know many parents who have found having the diagnosis has been helpful to get on the right track, and also to help explain to schools and others outside the family.

Extreme Picky Eating

He Isn’t So Scared Anymore – Extreme Picky Eating 

Now following the therapy and changing the way we eat and talk about food at home, he’s doing so much better. He doesn’t like everything and he still sometimes needs foods prepared in a certain way, but he isn’t so scared anymore. He’s happy to learn about food. I think that because he’s learnt how to explore food and he knows he doesn’t have to eat it if he doesn’t like it. He’s able to go to a friend’s house and eat lunch with their family and it’s not such a big deal. 

We were lucky to find our OT, but I know for some families it can be hard to access therapy, there are often long waiting lists or no-one available locally.

Extreme Picky Eater

Nicki is working with her therapist to create online content and an app to help other families learn the approach she used, and to help with homework in-between food therapy sessions. Nicki also wants to keep raising awareness of ARFID and extreme picky eating, and let other families know that they can get support, and they are not alone in trying to help their child through this.

Check out her wesbite: https://learnplayeat.com or follow Learn Play eat on social media. 

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