What is ARFID?

A parent’s story of Avoidant Restrictive Food Intake Disorder

The helpful podcast for families with disabled children

Avoidant Restrictive Food Intake Disorder (ARFID) is a complex eating disorder that goes far beyond “fussy eating.” In this powerful episode, Michelle Jacques shares her journey parenting her autistic son Arlo, who developed ARFID from early childhood.

From extreme sensory sensitivities and fear of swallowing, to surviving on milk and yogurt alone, Michelle explains how ARFID affected every aspect of their family life, and eventually the difficult decision to pursue a feeding tube.

Subscribe to Contact’s podcast on your favourite podcast platform or on YouTube. You can also view the full transcript below.

Introduction

Michelle:
My son has never eaten vegetables, never eaten meat, never touched it, and most probably never will.

Harriet:
This is Michelle Jacques, a mum of two autistic children and an ARFID awareness advocate.

Michelle started noticing issues with her youngest child’s eating from a very early age, when he was still weaning.

Over time, his eating became more and more restricted, with his sensory sensitivities heavily impacting what he could eat.

Michelle:
He was very, very sensory to start with. Very sensory across the board. Hated having his hair washed, hands washed. Hated slime and Play-Doh. But as time went on, his diet just got so restricted that I thought, this doesn’t seem right.

Harriet:
What came next were years of worry, guilt and battles to access information and support.

Michelle also had to navigate misconceptions and a lack of understanding about ARFID, even from practitioners.

Michelle:
The GP didn’t even know what ARFID was in the first place. Families aren’t even being heard or understood at the first door.

We’ve been in hospital a couple of times – once for dehydration from a sickness bug, and then again, bless his heart, he had his appendix out. On both occasions, they didn’t know what ARFID was. So I had to spend my time trying to look after Arlo, but also at the same time explaining why he wasn’t eating what they wanted, because his blood sugar was really low.

Harriet:
Today we’ll hear about the impact that ARFID can have on family life.

Michelle:
I think we’ve only been to two birthday parties. The first one we got to, and his energy levels dropped so quickly that he nearly passed out.

Unfortunately, we can’t go abroad because all he drinks is whole milk. And because of the new laws and restrictions, you can’t take milk abroad.

Harriet:

Michelle is also a fantastic ARFID awareness advocate, sharing her experiences with other parents and campaigning for better support and understanding about the condition.

Stay tuned to hear the incredible journey Michelle’s family have been on – including the positive changes that came from releasing pressure around food and focusing on her son’s happiness. We also discuss the difficult decision to have a feeding tube fitted, and the positive impact this has had on Arlo’s health.

I’m Harriet Squirrel, host of the Helpful Podcast for Families with Disabled Children and Head of Family Support Programmes at Contact.

On with the episode.

Harriet:
Hi Michelle. Welcome to the Helpful Podcast. How are you today?

Michelle:
I’m very well. Thank you so much for having me.

Harriet:
Awesome. Pleasure. To get us started, can you tell us a little bit about your family and the journey that you’ve had with ARFID?

Early weaning and sensory differences

Michelle:
Yes. I’m a mum of two. Both are autistic, but it’s my youngest son who has ARFID. He’s now six, but we noticed his eating difficulties most probably from weaning – from a really, really young age.

Going right back to weaning, being my second child, I already knew the process. It was more when we got onto second-stage weaning – foods with lumps and bumps, foods that had more texture, foods that were stronger.

We just couldn’t get past it.

I thought children can be fussy. They can have neophobia. There are all these different things within children’s development. But we never really got past it.

He was very, very sensory to start with. Very sensory across the board. Hated having his hair washed, hands washed. Hated slime and Play-Doh. He was very much, “Don’t touch me.” He rocked a lot. He used to rock his highchair across the room. He was just a very sensory child.

At first I thought, it is what it is. You are just sensory, and that’s it. You’re still little.

But as time went on, his diet just got so restricted that I thought, this doesn’t seem right.

You get that feeling, don’t you?

I started questioning whether he was autistic, but I put that to the back of my mind because the food issues we were having far outweighed his sensory sensitivities. I thought, I can manage that. But we were struggling to manage his eating.

The illness that triggered further restriction

Michelle:

I can’t remember exactly how old he was, but I think he must have been around three. He had tonsillitis and he went off food completely.

He blamed the food and the swallowing for the pain in his throat. He blamed a wafer. From then on, he went about 15 months just having milk and yoghurt.

At that point I thought, this is not okay. This is not you being a fussy eater. I genuinely couldn’t get him to eat. Everything I was trying was backfiring.

Being the second child, I thought maybe you’re just a bit more delayed. Developmental milestones can be delayed. But it got to the point where I thought, no, you are becoming quite unwell.

Weight, growth and iron levels

Harriet:
Presumably he wasn’t really putting on weight?

Michelle:
His weight always followed his centile because he drinks gallons of milk and was having yoghurt.

At one point he was having maybe 15 yoghurts a day, which sounds crazy. They were the small tube ones, so there were no lumps. The amount and quantity he was having was keeping his weight up.

That was where we struggled with flagging it as a problem, because on paper his weight was fine.

His bloods weren’t horrendous, but his iron was low. The milk was stopping his iron absorption. We were stuck in this bubble.

What is ARFID?

Harriet:
For listeners who might not know, can you explain what ARFID is and the common misconceptions?

Michelle:
ARFID stands for Avoidant Restrictive Food Intake Disorder. It was added to the DSM-5 in 2013, so it’s relatively new.

It’s mainly driven by sensory sensitivities – smell, taste, texture, the look of the food, even the colour.

My son has always loved yellow. He has a yellow bed frame. He always wants yellow trainers. Even with food, he’ll choose banana flavour because it’s yellow.

There’s also fear of negative consequences. He had a fear when he swallowed. It could be fear of choking or being sick. There can be a link with emetophobia – fear of being sick.

If you’re that panicked about being sick, it can link into your eating.

Harriet:

You can’t tell a child they’re not going to be sick. These things do happen.

Michelle:

He was so instilled with the idea that swallowing hurt him that he wouldn’t swallow anything other than liquid.

There can also be lack of interest in food – not feeling hunger or thirst cues.

With ARFID specifically, there’s no link to body image or needing to lose weight. That’s how it differs from other eating disorders.

Autism and ARFID

Harriet:
You mentioned that your son is autistic. Can you talk a little bit about the relationship between autism and food? There is a link, isn’t there?

Michelle:
There is a link, and I think there is still so much to learn about it. A lot of the research and data is quite limited, but as time goes on, I think the numbers will increase.

You don’t have to have both. Just because you’re autistic doesn’t mean you’re going to have ARFID, and vice versa.

They overlap because of sensory differences. It can be interoception – not feeling hunger or thirst cues. It could be communication difficulties. If a child struggles with communication, that can increase anxiety, which then impacts eating.

My daughter is also autistic. She’s not a great eater. But the difference is she will eat if she’s hungry, or she will eat an alternative. If she wants one biscuit and we don’t have it, but I offer another, she’ll eat it. She won’t go hungry.

Arlo will starve himself.

That’s the difference.

With ARFID, it puts so much focus on the eating that I ignored the autism at first. I thought I can deal with that later. If I’d done it the other way around and got the autism diagnosis first, they might have put the eating under that umbrella and said it was just an autistic trait.

It needs to be separate.

I think a lot of people are finding that at the moment – it’s being dismissed as autism, when actually it’s ARFID.

Emotional impact on parents

Harriet:
If a child would rather starve themselves than eat, that must be incredibly hard to watch.

Michelle:
It’s incredibly difficult. And I think the biggest battle is dealing with your own emotions and how you feel as a family.

People assume it’s fussy eating. I used to get told, “Give him to me for a couple of days and I’ll bring him back eating.” But he wouldn’t eat just because someone else wants him to.

Everyone said that when he started school, peer pressure would make him eat. It hasn’t.

It’s hard navigating the wider world. Even family members, with the best intentions, don’t always understand.

The older generation especially – there’s that mindset of “You ate what was put on the table.” That’s so instilled that it’s difficult for them to understand this isn’t the same.

You have to have difficult conversations. Even with my husband. Everyone has to be on the same page.

Signs parents might notice

Harriet:
Are there particular signs parents might notice? You picked it up early – does it usually happen that early?

Michelle:
Not necessarily. We were fortunate to get him under a dietitian early because I kept pushing.

A lot of it is where the diet becomes more and more restricted. Avoiding whole food groups. My son has never eaten vegetables, never eaten meat, never touched it.

You might notice their intake becomes smaller and smaller. Very repetitive. The same foods over and over.

The lower their intake becomes, the more panic you feel about losing those safe foods. Because if they lose them, you’re in crisis.

You might notice fatigue. Iron deficiency. Changes in cognition. Food is fuel for the brain.

With fussy eating, it tends to pass. With ARFID, it affects every part of day-to-day life. That’s when you know it’s more than a phase.

Social situations and restrictions

Harriet:
You mentioned restaurants and birthday parties. That’s a whole different level.

Michelle:
It doesn’t just affect restaurants. Birthday parties – at one, his energy levels dropped so quickly he nearly passed out. His body doesn’t have the reserves.

At another, the buffet came out and we left.

Holidays are complicated. If you’re going abroad, can you take their safe foods. A lot of countries have restrictions. We can’t go abroad because all he drinks is whole milk.

Milk abroad tastes different. If he didn’t drink it, the risks would outweigh the holiday.

Even staying at my mum’s house 45 minutes away feels like moving in. I take everything. It’s that safety net as a parent.

Diagnosis and postcode lottery

Harriet:
What does the diagnosis process look like?

Michelle:
It depends where you live. There’s a real postcode lottery.

Some areas don’t even have services. In ours, he has to be eight for NHS diagnosis. He was three when we needed help.

We went privately because I needed validation. I needed people to believe me.

But diagnosis doesn’t necessarily mean support. We moved house four minutes away and got discharged. I thought diagnosis would be a golden ticket, but it wasn’t.

I had to fight again to get services to recognise the need.

Diagnosis isn’t the answer. Support is.

Advice to other parents

Harriet:
What would be your top tips for parents?

Michelle:
I wish someone had told me to stop focusing on him eating.

By focusing so heavily on intake – “eat this, eat that” – I made his anxiety worse.

Switch your mindset. Manage your expectations. Accept that for now, if they only eat crisps and biscuits, that’s okay.

By reducing pressure, anxiety drops. That builds a healthier relationship with food.

Now he sits at the table with us. We stripped everything back.

It’s not easy. It goes against every instinct as a parent. But it makes a difference.

Advocacy and what needs to change

Harriet:
Can we talk a little bit about your brilliant work as an ARFID awareness advocate? What do you think needs to change in the whole system, and how could we get there?

Michelle:
This is a really difficult one, and I could probably talk about it for hours.

ARFID was added to the DSM-5 in 2013. It’s been there a long time now, but it’s still nowhere near where it should be in terms of understanding and support.

I hear all the time from families who go to their GP and the GP doesn’t even know what ARFID is. They’re not being heard or understood at the first point of contact.

Even health visiting teams might not know what ARFID is, or the differences between developmental fussy eating and something more serious.

Training is a huge thing. Understanding across the board.

We’ve been in hospital a couple of times. Once for dehydration from a sickness bug, and again when he had his appendix out. On both occasions, they didn’t know what ARFID was.

I was trying to look after Arlo while also explaining why he wasn’t eating what they were offering, even though his blood sugar was low. They didn’t understand that his difficulties far outweighed what they were suggesting.

There are so many gaps.

The postcode lottery is a massive issue. Age restrictions are another.

ARFID doesn’t just affect children. Teenagers can develop it later. Adults can have it too.

It could develop after school-based anxiety, after an illness, after something traumatic. It can come at any point.

There’s no rulebook that says you have to have it from birth or weaning. It can happen at any stage.

Schools and wider awareness

Harriet:
That sounds similar to the journey people have been on with neurodiversity in general.

Michelle:
Yes. And even in school settings, not all schools understand ARFID.

You have healthy eating guidelines. Some schools say you can’t bring certain foods, or you can’t bring packed lunches from home. But what if that’s the only thing the child will eat?

There are so many aspects that need to change.

When you’re living it, you want things to change immediately. But it takes time. More research is needed. More data.

At the moment, it feels like we’re riding the wave of the unknown.

I hear from so many people daily. Reading other people’s stories sometimes upsets me more than my own, because I’ve processed ours. I’ve accepted it. We’re working through it.

But when you read someone else’s story, it hits differently.

Learning through lived experience

Harriet:
Your advocacy and awareness work is exactly what’s needed at the moment.

Michelle:
My social media and sharing our story came from a place of feeling alone.

I felt like those people who come across my page now – I was that person.

I still have down days. I still cry. I still feel guilt and wonder if it’s my fault.

You have to allow those feelings. Allow yourself to feel guilty. Once you’ve processed it, you can say, no, this isn’t my fault.

You do need professionals for things like nutritional deficiencies. But in terms of understanding ARFID, I’ve learned so much.

At one point, professionals asked if I had a medical background. I didn’t. I just went deep into learning.

I thought, if no one else is going to help me, how can I help him?

I learned about sensory differences. I learned that there are 32 steps to eating. I learned how the mouth works, how the tongue works, how taste changes.

When we explained to him how eating works – how your teeth chew, how your tongue moves – gradually he built confidence.

The first time he swallowed something again, he realised it didn’t hurt. That broke the barrier of fear.

No one told me to do that. It came from desperation.

Parents become experts by experience.

Feeding tube journey

Harriet:
How is Arlo doing now? What does he eat now?

Michelle:
Arlo now has a feeding tube.

It was the hardest and scariest decision we’ve ever made.

He has a lot of medical trauma. After his appendix and other illnesses, he dropped back to just milk. That was dangerous.

The feeding tube has been in for five months now.

The difference is incredible. I’ve got my son back.

Before the tube, he had managed to eat Skips crisps and banana pouches for breakfast. He would sometimes have yoghurt again.

Once he had a banana pouch for breakfast consistently, I built it into a routine. Then yoghurt became part of dinner.

After the tube was fitted, he got poorly again around Christmas and lost everything he was eating for about three weeks.

But because he had the tube, I didn’t panic. I didn’t pressure him.

One day he went to the cupboard and got crisps himself. I walked away so he wouldn’t feel watched. He ate them.

It was on his terms.

He calls them “food lessons”. He’ll bring crackers or something else when I’m distracted and ask to try them.

He has to feel in control.

Family impact and guilt

The feeding tube brought up a lot of guilt. You question whether you could have done more.

It’s hard on your relationship. Eating is such a family-centred activity. Breakfast, lunch, dinner – everything revolves around food.

It consumes your whole life.

But the feeding tube has reduced pressure. His brain is functioning better because he’s getting the right nutrition.

It doesn’t mean every child with ARFID will need a feeding tube. It was necessary in our case because of how long it had gone on and the medical trauma involved.

It’s not the first option. But for us, it was the right decision.

Final reflections

Michelle:
ARFID is a rollercoaster. You think you’re making progress, then you slide back down.

But once you accept that, you cope better.

You stop holding onto small wins so tightly that setbacks break you.

As long as he’s happy, that’s what matters.

If he eats crisps and yoghurt and feels safe, that’s okay for now.

Harriet:
An amazing family on an incredible journey. It’s been such a pleasure talking to you.

Michelle:
Thank you for having me.

Harriet:
Thanks for listening to today’s episode.

If your child has ARFID or is showing signs of the condition, please look at the support links in the episode description. There you’ll also find a link to Contact’s website and our free helpline.

You can hear more from Michelle on her podcast 3 Mums 1 Mission ARFID.

Until next time, goodbye.

Where to find ARFID support

Michelle also shared some links to support that she’s personally found very helpful.

Living with ARFID, support for parents & carers UK is a support group on Facebook with over 25,000 members.

ARFID Awareness UK provides resources and a Helpfinder tool for local support.

BEAT Eating Disorders offers ARFID-specific support, including:

Helpfinder tool to locate services in your area.

Endeavour group support.

Anchor 1-to-1 sessions – access depends on location.

More ARFID support from Michelle 

Michelle co-hosts a brilliant podcast 3 Mums 1 Mission – ARFID, available on Spotify and other podcast platforms.

Michelle also runs face-to-face and online workshops for families in Essex via the charity SEND The Right Message. Here she shares her lived experience and knowledge to help parents understand eating difficulties within neurodivergent families.