By Heather L. E. McKay
The DSM 5 introduced ARFID (Avoidant Restrictive Food Intake Disorder) in the 2013 update of the manual. It was new to everyone. For years people called it Selective Eating Disorder (SED), but that didn’t sit right with anyone, and it didn’t help anyone either; as the advice was outdated and behaviouralist based for treating other eating disorders like anorexia, bulimia and binge eating – and they recommended the same treatment for ARFID; which is actually the exact opposite of helpful for this unique eating disorder (more on this later).
The DSM was updated to include information about the ‘disorder’ and changed the name. But little was really researched or understood about ARFID, until after this update.
After SED changed its name to ARFID, researchers took more of an interest in the topic. Not just because there are more and more people being diagnosed with it, and that neurodivergent (ND) people are more likely to be diagnosed with ARFID than the general population – but also because it’s an interesting topic. I myself find it interesting, because all my family members qualify for the disorder. We’re all also ND, so going into a deep dive of researching it and understanding more about it is a natural ND instinct for me.
I began researching and writing about ARFID when my kids were being hospitalised years ago for dehydration and eating/drinking difficulties. Both my kids were diagnosed with ARFID, and then I was as well. But the problems really began when my kids began kinder and then school.
Unfortunately, schools don’t know much about ARFID, in fact – I couldn’t find one teacher, aide or support staff in any school in my area that had even heard about it. It was up to me to educate them about it, in order to advocate and support my children in those environments. But I was ineffectual at best for my eldest child, the damage had already been done. A couple ignorant (but well meaning) teachers and aides decided to take it upon themselves to educate my ARFID child about “healthy” food. If you’re a parent of an ARFID kid, you might know exactly what came next.
- My kid was traumatised and developed even more issues
- I hit the roof
That’s the short version. The long version involves my child stopping from eating any of his ‘safe’ foods, because all of his safe foods were deemed ‘unhealthy’ by his ignorant teachers. He dropped even more weight, and gained a body dysmorphia diagnosis, and developed Anorexia Nervosa – on top of his ARFID diagnosis. They ran co-currently. No doctor disagreed that he had both, because it was damn obvious, and he was hospitalised. He was treated for both because that was the only way he was going to recover. To treat him just for ARFID, or just for Anorexia would’ve been stupidity and neglect in the extreme. He had both – end of story!
Let me dispel this right now – FED IS BEST! And that goes for anyone of any age – not just breast-fed babies! If a child is already struggling to eat the required calories, and struggling to intake enough foods and liquids to be able to grow and thrive – then forcing them to drop the only foods they do eat is child abuse, but also negligence and torture.
What these unsuspecting teachers didn’t know, is not an excuse – as I’d warned them many times, and it was not forgivable in my book either. As my child nearly died. Never ever tell a child that food has intent, because it doesn’t, all food has value. Just because you don’t understand what value that food holds for that person doesn’t make it right, doesn’t make it ‘bad’ or ‘good’ food, and doesn’t mean you have any right to interfere.
As I’ve said many times in the past; ARFID is covered by discrimination law, and to interfere is to breach the law – but it also causes tremendous damage and sometimes irreversible harm. If you don’t understand what harm you could do to a person with ARFID by saying or doing certain things – either learn or keep your mouth shut.
What teachers do and say to innocent, vulnerable disabled children matters too much to that child. Very young and impressionable children are especially vulnerable to listening to ignorant and biased people; and those uneducated opinions can do more damage than you know.
The reason a ND child has ARFID, is often SPD related (check out the listed articles at the end to find out more about the reasons for ARFID), but it is more often than not also hereditary. Researchers have found that in a twin study; a whopping “79 per cent of ‘the risk of developing ARFID’ can be explained by genetic factors”, and ARFID is the most heritable eating disorder out of all the ED’s. Karolinska Institute. ScienceDaily (1 February 2023). This would equate for a huge percentage of ARFID people and might explain why you are born with ARFID, but can also later develop or be ‘at risk’ for other eating disorders on top of your ARFID.
Now, there are other people who develop ARFID, other than ND people I mean, and those who are born with it. Those people usually make up the non-SPD reasons for ARFID, eg: fear of choking, food related trauma, non-food-related trauma, lack or no interest in food (or lack of or no interoception, or low appetite) and others. The population of ARFID people are made up of these many reasons. You can have more than one corresponding reason for ARFID, or just one. The number of reasons that you have ARFID will also impact how you recover and how/what treatment you receive. Eg: if you have ARFID due to SPD, but also have a trauma event that caused you to be fearful of food, and you also have limited interoception – you will need a multipronged approach to healing.
Researchers believe about 1 to 5 percent of the population have ARFID and of those; each person has a differing reason for having the eating disorder. Within my family, the most predominant reason for ARFID is SPD, and I do believe that to be somewhat representative of the ND community as a whole. The number of ND people that report SPD (or sensory aversions to food) being the number one source of their eating struggles is staggering. Unfortunately, this is not representative of the whole cause or problem with ARFID in ND people… because….. researchers have so far left out a huge component within ARFID research – The Executive Dysfunction Factor! In none of the research I’ve found, did I ever see anything to do with burnout, executive functioning, or capacity ever being mentioned. Which is quite horrific, since those are my biggest barriers to dealing with ARFID as an ND person, and the same issues occur in my ND family and friends. This is what I would call a glaringly obvious misstep or omission in both the DSM and in more recent research into this field.
Research has also been performed on the co-occurrence of ARFID and other eating disorders within the one patient. And the results are truly conclusive – that yes- you can have both ARFID and one of the other eating disorders; even though the DSM 5 says you can’t. Please remember that the older version of the DSM also said you couldn’t be both autistic and have ADHD- but once they updated the DSM to be in keeping with the actual lived experience, they realised that AuDHD is one of the most common and frequently co-diagnosed things. They are now entering into research to figure out if ADHD and autism are actually linked and possibly inseparable. So – just because the DSM says something today – does NOT make it a fact, true or even remotely correct in the slightest – it’s just the information that they had at the time. The human species is constantly learning – and from the current research on ARFID we can safely assume we know almost nothing.
The researchers who have undertaken this work on ARFID have asked this new information to be considered and added to the new /next update of the DSM 6 – when it is finally undertaken. See Becker et al (26 Nov 2019).
“While the DSM-5 does not allow for ARFID to be diagnosed concurrently with AN or BN, the emergence of the Restraint/ARFID-Mixed profile is notable and supports prior work suggesting that ARFID and restraint motivations can co-occur” Abber et al (27 May 2024). This research also proves that people with ARFID are likely to have co-occurring bulimia or anorexia, and the following statement from the same research supports the DSM changing to be more in line with what ARFID people are actually experiencing. “Future research should also consider whether DSM-5 should allow for a diagnosis of ARFID concurrent with AN and/or BN. It is possible that incorporating relevant treatment modules may be beneficial for individuals with overlapping motivations.” Unfortunately, their recommendations for what therapy should be used is next to useless for ND people, as they recommend CBT (cognitive behavioural therapy) – which is known to be gaslighting to autistics.
So, the proof is in. Yes – ARFID people have been shown to have other co-occurring eating disorders and actually may have a predilection or tendency towards them.
Where to from here? Come back and check out updates for new blogs on this topic where I discuss appropriate ARFID treatments for ND people that are neuroaffirming, trauma informed and help with co-occurring issues like executive dysfunction, interoception and other issues.
Articles and research to check out:
- Becker KR, Breithaupt L, Lawson EA, Eddy KT, Thomas JJ. (26 Nov 2019) National Library of Medicine, Pub Med Central: “Co-occurrence of Avoidant/Restrictive Food Intake Disorder and Traditional Eating Psychopathology”. ncbi.nlm.nih.gov/pmc/articles/PMC7380203/
- Lisa Dinkler (2 February 2023) The Conversation “Arfid: genetics a major factor in this little-known eating disorder – new research” theconversation.com/arfid-genetics-a-major-factor-in-this-little-known-eating-disorder-new-research-197324
- Abber SR, Becker KR, Stern CM, Palmer LP, Joiner TE, Breithaupt L, Kambanis PE, Eddy KT, Thomas JJ, Burton-Murray H. (27 May 2024) Psychological Medicine (Cambridge University Press) “Latent profile analysis reveals overlapping ARFID and shape/weight motivations for restriction in eating disorders”. cambridge.org/core/journals/psychological-medicine/article/latent-profile-analysis-reveals-overlapping-arfid-and-shapeweight-motivations-for-restriction-in-eating-disorders/1F69A9A15C14179F354AA2EB589811D8
- Karolinska Institute. ScienceDaily (1 February 2023). "Serious eating disorder ARFID is highly heritable, according to new twin study." sciencedaily.com/releases/2023/02/230201134150.htm