National Eating Disorder Awareness Week: What its like to live with Arfid

Arfid is characterised by an avoidance of certain foods or types of food and having a restricted intake of food. Unlike other forms of disordered eating, people with Arfid do not avoid or restrict food based on beliefs about weight or body image.

There are sub-categories of Arfid, for example, sensory-based avoidance refers to when a person will avoid certain foods or even entire food groups because of a sensitivity to certain textures, flavours or both. It is often seen in autistic or otherwise neurodivergent people and can be mistaken as an autistic trait in and of itself. Not hard to see where I might be going with this, then.

I have always been quite fascinated by food. How we have managed to cultivate the most brightly coloured foods that you can find from our own ground. How we have managed to envelop the entire world in flavour and intertwined the various cultures of the world so expertly into the dishes that we serve and eat. I hear often about the textures and flavours that define the delicacies of the world, but I have never known them. When it comes to food, my world is as bland and beige as it gets. I admire, but can’t enjoy. I wish I could.

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I have never, in my almost 27 years of life, experienced the simple pleasures of a fresh salad or a particularly juicy piece of fruit on a hot summer’s day. My brain, quite literally, will not allow it.

When I travel, I don’t get to experience the local cuisine like everyone else. In fact, when I go anywhere, I have to pack safe foods in case there is nothing that my brain will sanction as edible. When I go for lunch with my friends, I am the difficult one who has to ashamedly ask the waitress to accommodate my special requests. It’s become a recognised, and often teased, part of who I am.

In a world quite literally bursting with flavour, all I have ever known is the bland and the boring.

For me, my aversion to food is very much sensory based. It’s a relief even just to finally have the language to put that into a sentence. For most of my life, that wasn’t available to me. I had no idea why I’d rather go hungry than eat a vegetable. Why the feeling of a grape in my mouth could make me gag so viciously my eyes would water. It was just my normal – and had been for my entire life.

One of the biggest and most transformative revelations that has come with my autism diagnosis is Arfid. I don’t avoid foods because I am fussy or childish or because I don’t like them, I don’t have a choice. Another penny drops.

It’s funny because exclusively eating chicken nuggets or other similarly beige foods is almost a universally understood autistic trait. One of the most understood and accepted hallmarks of autism is a penchant for the chicken nugget-esque cuisines of the world. Yet, when I displayed it and remained committed to it long into adulthood, I was just a fussy eater. It was another reason to be labelled an inconvenience.

Another glaring opportunity to identify that I am disabled missed by a chronic commitment to the misunderstanding of who I was. Shocking. It’s almost as if that’s my life story and the life story of every late-diagnosed autistic person.

It was easier and more palatable, explainable even, for me to be a problematic child and a fussy eater than it was for me to be an autistic person with disordered eating patterns. Me being a mere annoyance was more comfortable for everyone else than me being a disabled person with support needs. The uncomfortable truth.

People often wince when I talk about my disabilities, or even roll their eyes. “What’s not wrong with you?” is a phrase I’m met with often. But I think it unintentionally uncovers the reality. Every single one of the so-called labels or diagnoses I now have are linked to each other. If I wasn’t autistic, I probably wouldn’t struggle with Arfid.

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If I could eat a balanced diet, I probably wouldn’t have the deficiencies that have rendered my immune system about as useful as a chocolate teapot. If I didn’t have ADHD, I probably wouldn’t also be autistic.

Arfid is a frustration that is difficult to communicate, particularly as an adult, when the excuse of being a fussy child has grown somewhat inappropriate.

Quite unexpectedly, it was my dad who first recognised and vocalised his concerns about my poor eating habits. Though a self-proclaimed daddy’s girl, I am relatively alien to my dad, especially so when I was a teenager. I find it quite funny.

A deeply neurotypical man with no family history of autism, trying to parent an undiagnosed autistic teenage girl must have been quite the learning curve. But he picked up on this. Albeit he assumed I was anorexic or bulimic, had there been more awareness of Arfid at the time, he might have been on to something.

While weight doesn’t come into the diagnostic criteria, and isn’t a defining factor of Arfid, it does lead to difficulties with body image that can often compound and make it worse. Restrictive patterns can result in extreme weight loss, and the over-consumption of unhealthy foods can lead to weight gain.

With no choice but to eat foods that are often processed and unhealthy, or to eat nothing at all, we can have little control over what our own bodies look and feel like. That lack of control can be the catalyst for some really unhealthy patterns and risks worsening the food restriction.

Engaging actively every day in a practice that harms your body and your wellbeing, against your own will, is like physically and metaphorically digging your own grave in full consciousness. And the distinct lack of awareness directly correlates with a lack of support.

My experience with Arfid can be summarised perfectly by one example at a Thai restaurant with friends, when I decided to try a dumpling for the first time.

It threw me into a food aversion so severe I ate little other than burnt toast for weeks. I lost more than a stone in weight. Me and my friends have laughed about in the years since, because it is very nearly encroaching on absurd. A grown adult whose entire life can be turned upside down by a dumpling. I’m actually laughing writing this, I can’t imagine what it must look like to those who don’t live it.

And that is exactly the problem. Avoiding the one thing you depend on to live seems childish. It is often the butt of the joke. It seems like a choice, and a relatively simple one to overcome. It’s easy to ridicule and pass off as trivial. And so it is ignored, ridiculed and explained away, while those of us contending with it do irreversible damage to our health – and suffer in the process.

I have no answers. Twenty-seven years in, I haven’t found a single solution that works or that is sustainable. But this much-needed awareness can only be positive, and gives me hope for the future. If this resonates with your experience, or someone that you know, please visit the Beat website for more information on Arfid and how you can help.