ARFID: an Autistic eating disorder?

A conversation amongst some autistic friends on twitter about eating issues, reminded me that this blog post is long overdue. These are just my personal thoughts into the links between autism and ARFID, as there hasn’t been much research in this matter, though there is an ongoing study into autism and eating disorders at Kings College London. (And if you’d like to take part, you can find the survey here)

Though you will find studies linking anorexia and bulimia to autism, not much has been written about those of us who are autistic and have eating issues unrelated to fear of weight gain. That said, it is common to find many of us with such issues. A Twitter poll I ran last year had over 200 respondents, 86% of whom said they had such issues. Obviously, a Twitter poll is in no way scientific but I do find them useful for seeing if I’m on the right track with an idea.

There are many eating issues that autistics have that fall under the umbrella of ARFID. If you need a reminder of what ARFID actually is, I wrote about it here.

One of the issues, often mentioned by parents of autistic children as being of concern, is the subset of ARFID that is known as Selective Eating Disorder. This is where the individual only eats a very limited range of foods. Obviously, many adults also have this issue, but some have been able to expand the number of tolerable foods over time. The reason behind this eating issue is often sensory. We intensely dislike certain tastes or smells or textures. It’s more than just being picky or not liking it very much, we will often choose to starve rather than eat the food in question.

Another subtype of ARFID is that caused by an “apparent lack of appetite or interest in food”. This is an issue that I have not really seen written about but that comes up time and again when autistics talk amongst ourselves. Quite often it is in the context of our special interests, when we are so focussed on these that we simply forget to eat, or don’t realise that we are hungry. This can happen at other times too, like when we are stressed or anxious, or often for no discernible reason. We often don’t have strong hunger cues until it is too late and blood sugar issues are what finally remind us to eat.

A lot of the autistics I speak to don’t have a diagnosis of ARFID, and most don’t realise they may have an eating disorder. They simply have “food issues”. I don’t necessarily think a formal diagnosis is needed or particularly helpful as it is not clear if the newly-developing strategies for ARFID are helpful for the autistic population. We often don’t react in the expected way to psychological therapies that help non-autistic people. It is certainly an area where a lot more research is needed.

I want to end this little piece by saying that if you’re autistic and have any of these food issues, you are certainly not alone. Although not talked about enough, I do think the issues with eating that autistics have are finally getting some recognition. I’m guessing that most autistics struggle with eating at various points in their lives. Not all of them will struggle to the extent required for a diagnosis of an eating disorder. But it can be a problem all the same. And I think that we autistics will be the ones to develop strategies that will help us to eat in a way that is healthy for us.

And the first step towards this is by talking out loud about it.

[image of a child with elbows on a grey topped table, with their cheek resting on one fist, looking glumly into the distance. Beside them is a pile of raw, whole vegetables such as tomatoes, peppers, lettuce and kale.]

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One thought on “ARFID: an Autistic eating disorder?

  1. You probably know this already, but I get frustrated about people not taking me seriously because my eating issues are not connected “to a concern with shape or size”. Can I have sensory issues, habitually restrict food and be particular about it without an intent to lose weight? It’s endlessly frustrating. Anyways… I hope that in the future, ED communities will try not to assume everyone with an ED is automatically trying to change their bodies and that’s the only reason why they can’t/won’t eat.

    I know I wasn’t taken seriously because I had no fear of weight gain/ preoccupation with body size. I was told to suck it up and eat even if I felt sick by the one psychologist I saw (also, told i was “spoilt” for having sensory particularities to textures or even utensils). I am kind of glad I was rejected from ED services though despite being a meagre 85 pounds, because I think it would have made me feel more alone for ‘not fitting in into another box of pathology’.

    Amy G.

    Like

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