My son Joseph has three staple foods: red seedless grapes from Asda, McVitie’s digestive biscuits and KP dry roasted nuts. It’s brand-specific - if it came in a different packet we could lose the food entirely.

They’re his neutral. When he’s doing really well, he can manage meat, potatoes, crisps and chocolate. When he’s struggling, he can limit the amount of his safe foods, so he’ll only eat a handful of grapes or nuts or two biscuits, and when he really struggles he might just eat grapes. 

He can struggle to eat something if it is presented differently, he struggles with the sounds of others eating, he avoids eating anything that’s sloppy, mashed or wet, or any foods that touch on the plate. 

Prior to lockdown, we had issues with food but nothing major. After Covid, his school restricted lunch options to sandwiches, pasta pots and salad pots. This is where the trouble started.

He doesn’t eat carbohydrates, and no vegetables apart from potatoes, so there was nothing he could eat. Staff were trying to persuade him to eat and it got to the point where he was coming home with cheese paninis hidden in his sweatshirt sleeves or tucked in his socks.

He ended up in crisis three times and lost 10lb in a short space of time. We were going through CYPS for his autism diagnosis and we had him assessed by an occupational therapist, and while they were very good there was no mention of ARFID in any of their reports.

I’m a counsellor, I work with neurodivergent people of all ages and I had never heard of it. A CYPS duty manager just happened to send me an A4 sheet about ARFID after I emailed because I was desperate, and it just clicked. In fact it explained all of us and our relationship to food.

A year or so ago, Joseph began to dip again and our GP referred us to a new ARFID support unit run by CYPS at Cleadon Park. He received therapy based on cognitive challenging. It was nice to have that validation that we weren’t the only people experiencing this, that we weren’t crazy – but there wasn’t a solution. It is what it is.

What really helped us was a cooking group I was leading with the Kayaks charity in South Shields. Joseph had to come with me, and he loved it. He prepared food and cooked it, and while he wouldn’t necessarily eat it, he stepped out of his comfort zone a bit. He now wants to be a chef and has started his own recipe book.

At home, we just make all of his safe foods available, all the time, and we prepare it how he likes it. We’ve moved our dining room next to where he talks online to his friends so we’re kind of together. We have to have other little things going on at the same time to take the pressure and the focus off the food.  

He’s home schooled now and he’s thriving, but his mental health can still impact on his ARFID. We all feel it’s dynamic and linked to how well our mental health is, and the level of sensory input and overwhelm we’re currently experiencing.

In our experience, ARFID is not like an eating disorder in that it’s not binge/purge, it doesn’t withhold food, it’s not around control or body image or weight loss. But it can’t be resolved like other sensory issues such as sound when you can wear ear defenders. There’s no resolution and no quick fix.