​More Than "Picky Eating": Why I’m Raising Funds for ARFID Awareness

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Firstly, I’d like to clarify that I am not an ARFID expert. I am a parent carer of a child with ARFID, I have attended courses, workshops, peer-support groups and I have read as much as I could on the subject. Anything I write here is based on my lived experience, backed up with facts from officially recognised organisations, and stories from the ARFID community. I only share stories that I have permission to share.

If you think your child has ARFID, consult a relevant medical professional as soon as possible. The internet has a lot of answers but it’s not the place for a diagnosis. I’m happy to signpost to organisations that may help you, and I’m happy to talk about my story - however I am not a qualified medical professional, and I do not offer advice for your person with ARFID.

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When my son was 6 years old, we finally put a name to the invisible wall that sat between him and the dinner table: ARFID.

​Now he is almost 13, and we continue to navigate the complexities of Avoidant/Restrictive Food Intake Disorder that has plagued his whole life. While other parents worry about their kids eating enough vegetables, we have spent years managing genuine fear, sensory overload, and a short list of "safe foods" that can change without warning.

The challenges for our family are many: the limited calorific and nutritional intake, medical advice that supports anorexia recovery but has nothing to do with ARFID at all, the ‘blaming and shaming’ parental culture in today’s society, to name but a few.

I could write whole essays on the attitudes of those who try to help, and then blame me when their unrealistic expectations aren’t met.

The overarching issue we face is the lack of understanding.

ARFID is a relatively new term, born in the same year as our 13-year-old, although the condition itself has been around as long as humans have. A webinar I once attended posited that ARFID could be an evolutionary trait linked to survival - the person who didn’t eat the poisonous berries because they sensed something was off, survived.

​The Invisible Struggle

​ARFID is often dismissed as "just a phase" or "extreme picky eating." But it is a serious feeding and eating disorder that can lead to malnutrition (and the associated issues that come with that), stunted growth, and intense social anxiety.

​Unlike other eating disorders, ARFID isn’t driven by body image. Each presentation is unique, although there are similar traits

ARFID can be driven by:

- ​Sensory sensitivity (textures, smells, or colours).

​- Fear of aversive consequences (choking or vomiting).

- ​A lack of interest in eating altogether.

​The Knowledge Gap

Despite ARFID being a recognised diagnosis, many health professionals are still completely unaware it exists.

​We have sat in offices where doctors have told us "he’ll eat when he’s hungry" or "just keep offering it". There was one truly awful experience with a new health visitor who said, “Come back when you’re ready to accept help” after I had refused to sit on, and hold down my 2-year-old and force-feed him.

For a child with ARFID, those "solutions" don't work, they only increase the trauma. When medical professionals lack training, families are left to navigate a complex disorder in the dark, often waiting years for the specialised support they actually need.

Our son’s primary school made mistakes with him because they didn’t listen to me. His high school are learning the hard way. He doesn’t take part in food tech lessons; I had to fight for that. I had to learn how to speak the right way, use the correct phrases, advocate for him in a way I shouldn’t need to do.

In Year 7, he was sent home after a maths lesson where images of a popular fast food restaurants food and nutritional values were used, causing him to become physically ill. He loves maths, he just wasn’t expecting to see photographs of his worst nightmare presented to him in one of his favourite lessons.

From September 2025 to January 2026, he did not attend any Welsh or Spanish lessons because the topic in both was food.

We’ve had apologies; they’re learning slowly that I wasn’t wrong when I said he can’t be confronted with food like that. He needs notice, he needs choices, and he needs a way to access education in the same way a wheelchair user needs a ramp - consistently, and with understanding.

I know others who have withdrawn their child from school because the school won’t work with them.

Eating disorders are misunderstood and numerous. Only a small number of them are recognised socially, and supported medically. If ARFID were more recognised in the UK, if his schools had a true understanding, if the medical professionals we saw knew about ARFID, our family would have had a much easier ride and maybe even some proper support.

​What is really needed?

Education, research and community. There are people and teams in the UK working on this, new initiatives are popping up, NHS clinics are being provisioned.

What we really need NOW is:

​Educate Professionals: Developing training programs for medical professionals, ALN/SENco, teachers, and therapists.

​Support Research: Funding studies into better treatment protocols for children and adults.

​Build Community: Providing resources for families who feel isolated by a diagnosis the world doesn't yet understand.

As with everything, all of this takes time. Parents and carers need support now.

Why Your Donation Matters

​I am asking you to donate to ARFID Awareness UK because no parent should have to explain their child’s medical condition to their own doctor, and especially a dietician.

​Your contributions help ARFID Awareness UK…

​My son has shown incredible bravery since his diagnosis. Now, I’m asking for a little bit of that bravery from you.

We were fortunate enough to be able to pay for a private assessment for our son. Not everyone has that option. Let’s make sure the next family doesn't have to fight for a diagnosis; let’s make sure they find help instead.

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