WHEN Jodie Morris’s little boy started refusing food, doctors told her he was just being “a fussy eater”.
But the mum from Wales was horrified to later learn her six-year-old son Jae, was actually battling a life-threatening eating disorder that has no cure.
Jae before with mum Jodie[/caption]
Jae only had issues with food after a stomach virus[/caption]
“I was so worried as to why this was happening,” Jodie, a university student, said.
“I tried [all I could] to get to the bottom of it.”
The problem began after Jae caught a stomach bug last year, which left him unable to eat for a week.
When he returned to school, he still felt nauseous at the sight or smell of food.
Teachers even let him eat lunch in the classroom to help ease his anxiety, but nothing worked.
“Parties became very stressful as Jae would stay clear of the area that the food was in,” Jodie said.
“And I was [completely concerned] about his health.”
Worried her son would fall ill, Jodie started giving him supplement drinks to keep his strength up and pushed for medical help.
He was referred to child and adolescent mental health services (CAHMS) and a paediatric dietician, but, according to Jodie, neither could offer the specialist support he needed.
“They didn’t have enough specialist knowledge to deal with eating issues related to trauma,” she explained.
“That’s why he needed specialist help from CAHMS. But there was a waitlist.”
As Jae’s eating problems worsened and he began falling behind at school, Jodie decided to act on her own and went private.
After paying for a private paediatric dietician, Jodie finally got the answers she’d been desperate for.
In June 2024, Jae was diagnosed with avoidant or restrictive food intake disorder (ARFID) – a rare psychological condition often mistaken for simple fussy eating.
Experts believe his case was triggered by trauma linked to his stomach illness.
“He’s being seen by mental health and eating disorder experts to help him overcome this,” Jodie said.
Jae now struggles to eat and has to take supplements[/caption]
Jodie fought for Jae to be diagnosed with avoidant or restrictive food intake disorder[/caption]
‘Fussy eating’ vs ARFID
ARFID is more than just ‘picky eating’.
It’s normal for children to go through a phase of selective, called neophobic stage – the fear of trying new foods or refusing foods because they look different or wrong.
From about the age of two, you might notice a child avoiding foods they had previously accepted, or rejecting foods based on perceived flaws, like spots on a banana skin or a broken biscuit.
Most children grow out of this by age five though, some children can remain extreme fussy eaters into adulthood.
ARFID is a complex condition as there can be many different and overlapping reasons why someone may avoid or restrict their intake.
Things you may notice in a loved one who has ARFID include:
- A very limited diet, often fewer than ten foods and struggling to accept new foods. In a child with sensory specificity (meaning restrictive eating based on the sensory properties of food) these are likely to be of a similar texture / appearance / smell / temperature and / or with significant brand specificity (e.g. will only eat one brand of chicken nuggets)
- Struggling to eat sociably or flexibly including eating similar foods in different environments.
- Struggling with the food environment such as with noise levels, smell of other food or other people eating food around them.
- An extreme reaction to the sight/presence/smell of a new food. This is known as a disgust response and can include gagging, retching, extreme anxiety, and running away from the table.
- A sudden and extreme avoidance of many foods/fluids, sometimes resulting from a choking or vomiting episode.
- Intense and increasing avoidance of foods due to concerns such as contamination.
These signs or symptoms might look like a slow and persistent elimination or removal of foods, or a more sudden and rapid avoidance.
Source: Beat, eating disorder dietitians Sarah Fuller and Clare Ellison
“And we’re still using supplement drinks for nutrients.”
As a parent, you know your child best
Jodie Morris
Life remains a challenge for the family.
“I can’t take him to the supermarket, as he hates being around food, and he’s very isolated,” she explained.
“Right now, it’s about calming his anxiety and working on redeveloping a healthy relationship with food again.
“It will take time, though I know he will get there.”
Jodie is worried about how the condition will impact her son in the future.
“[I fear] this will have an impact on his anxiety around sick and being sick.
“And currently, he is unable to attend school due to his issues with anxiety.”
Jodie is now calling on parents to “not give up” until your child has the support they need.
“As a parent, you know your child best,” she added.
Jodie is worried about how the condition will impact her son in the future[/caption]
What is ARFID and how to get help
Avoidant restrictive food intake disorder, more commonly known as ARFID, is a condition characterised by the person avoiding certain foods or types of food, having restricted intake in terms of overall amount eaten, or both.
People can have ARFID at any age – from childhood to adulthood.
They might be very sensitive to the taste, texture, smell, or appearance of certain types of food, or only able to eat foods at a certain temperature. This can lead to sensory-based avoidance or restriction of intake.
Others may have had a distressing experience with food, such as choking or vomiting, or experiencing significant abdominal pain. This can cause the person to develop feelings of fear and anxiety around food or eating, and lead to them to avoiding certain foods or textures.
Some people may experience more general worries about the consequences of eating that they find hard to put into words, and restrict their intake to what they regard as ‘safe’ foods.
In some cases, the person may not recognise that they are hungry in the way that others would, or they may generally have a poor appetite. For them, eating might seem a chore and not something that is enjoyed, resulting in them struggling to eat enough.
Sometimes it’s not clear why someone has ARFID, or there may be many overlapping reasons for it.
ARFID can be present on its own, or it can co-occur with other conditions like anxiety disorders, autism, ADHD and a range of medical conditions.
Children and young people with ARFID may fail to gain weight as expected and their growth may be affected.
When a person does not have an adequate diet because they are only able to eat a narrow range of foods, they may not get essential nutrients needed for their health, development and ability to function on a day-to-day basis.
In some people, serious weight loss or nutritional deficiencies may develop, which need treatment.
Possible signs of ARFID include:
- Eating a reasonable range of foods but overall having much less food than is needed to stay healthy.
- Finding it difficult to recognise when hungry.
- Feeling full after only a few mouthfuls and struggling to eat more.
- Taking a long time over mealtimes/finding eating a ‘chore’.
- Missing meals completely, especially when busy with something else.
- Sensitivity to aspects of some foods, such as the texture, smell, or temperature.
- Appearing to be a “picky eater”.
- Always having the same meals.
- Always eating something different to everyone else.
- Only eating food of a similar colour (e.g. beige).
- Attempting to avoid social events where food would be present.
- Being very anxious at mealtimes, chewing food very carefully, taking small sips and bites, etc.
- Weight loss (or in children, not gaining weight as expected).
- Developing nutritional deficiencies, such as anaemia through not having enough iron in the diet.
Get help for ARFID
If you think you might have ARFID, you should make an appointment to discuss this with your GP.
If you are concerned that a family member or friend has ARFID, it is important to talk with them to support and encourage them to seek the right help and support.
You can learn more about ARFID through information pages on the Beat website.
You can also visit ARFID Awareness UK.
If you need support now, Beat’s helplines are open from 3pm to 8pm Monday to Friday.
You can also use their one-to-one web chat or send Beat an email at help@beateatingdisorders.org.uk
Source: Beat
