By Heather L. E. McKay
This blog is a quick intro to ARFID in Neurodivergent (ND) people, how it presents differently to some neurotypical people, and some of the topics I will be discussing in this blog series soon.
So, what is ARFID?
It’s a relatively new addition to the DSM 5 and to eating disorders, but it’s been around for centuries – it’s not new to humans, it’s only new to modern day diagnosticians. There are reports of people eating in predictable avoidant and restrictive ways for generations upon generations. Within my own family I can recognise ARFID within multiple generations; so yes – it can be genetic, but we’ll discuss that later.
ARFID stands for Avoidant Restrictive Food Intake Disorder. It basically says it in the name; we with ARFID tend to restrict and avoid certain foods or even whole food groups. But there’s more to it than that. ARFID is a complicated eating disorder, but I think it’s important to start out by defining what it is NOT.
- ARFID is NOT picky eating
- ARFID is NOT behavioural
- ARFID is NOT a fear of food (for all people with the disorder)
- ARFID (for many people) is NOT necessarily curable
- ARFID is not necessarily anxiety related
What ‘it is NOT’ is important because how you view and understand ARFID is how you treat it. And if you view it as picky, behavioural, fear based or anxiety – then you may end up treating it the wrong way and making it worse. Eg: doctors that do not understand ARFID at all, will usually recommend removing all ‘junk’ food until the people is hungry – they literally believe the person will eat if they are hungry enough – but the truth is, that people with ARFID will starve rather than eat a food they deem ‘unsafe’ to eat – even if it’s junk food or any other type of food. Other very bad treatments for ARFID include; desensitisation, exposure therapy, ABA, and rewards charts for eating. All these methods immediately identify the therapist as knowing nothing about how to treat ARFID.
ARFID for Neurotypical (NT) people (or for people who don’t have SPD or co-occurring disabilities) often is curable or at least sometimes (seemingly) easily treatable. Many NT people with ARFID have stated that their food aversions were brought on by a singular event or trauma. It started because they choked on something, threw something up, or experienced a trauma that affected their eating and association with food.
If this is the case, a psychologist that is trauma informed and neuroaffirming can help you to deal with the trauma; and therefore with the eating disorder. Many people with a relatively simple fear of food or of eating are often ‘cured’ through psychology – through hypnoses, through exposure therapy or through other (more simple) means.
But for ND people, it’s much, much more complicated, and those things recommended for NT people are the exact opposite of ‘helpful’ for us – those of us who are Intersectionally disabled (have multiple disabilities) struggle even more with ARFID, and it is often incurable – it is ‘treatable’, but we will have ARFID for life. And that’s ok, because a person with SPD has SPD for life – it is a part of us, and many of us love SPD for different reasons, and wouldn’t want it to go away, others hate some aspects (or all aspects) or SPD and need more supports, because the struggle is real, and extremely intense for those people.
We are autistic or ADHD for life – it is how we are wired, we are born with a different neuro-wiring to typical people – it’s not curable and it’s not ever going away. And part of being autistic or ADHD comes with certain abilities and inabilities – one of those things is often SPD, and depending on how intensely we experience SPD will depend on and cause other issues like ARFID. We can’t cure our SPD – and therefore can’t ‘cure’ our ARFID – they are inextricably linked to our neuro-wiring. We can manage it and help it, but please get rid of the idea that it is curable for someone with SPD.
SPD may cause us to struggle in certain areas – like eating food, but it also causes positives and great things in us too. Like the ability to feel / experience/ taste / smell and immerse more than the ‘typical’ person – and sometimes that’s a truly wonderful thing. But if we are struggling with SPD, we need supports and tools to cope, to eat, to live.
So, what is ARFID and what is it for ND people? ARFID is different for every person, not one description of ARFID describes all people with the eating disorder. You can be underweight, overweight or the perfect weight and still have ARFID. For me, I’m overweight and have ARFID because I’m autistic/ADHD with SPD, but for others they may be severely underweight because they are extremely limited in their foods, and fearful of foods, or because they have experienced trauma at some stage, or because they have a combination of all, and for others – they may not have a weight problem at all, but still restrict their food because of OCD or trauma or another reason. The treatment of ARFID depends on the cause of ARFID. Without knowing the cause – treating it blindly could be the worst mistake you ever make.
The difference between ARFID and anorexia is mostly down to body dysmorphia. People with ARFID don’t control food to lose or maintain their weight or to control the look of their body – they control their food due to other reasons, predominantly as mentioned above. But don’t forget, a person can have ARFID and anorexia simultaneously; which makes treatment even harder- more about that in another blog.
Reasons for Controlling Intake of food for people with ARFID:
- Fear of choking or throwing up
- Fear of the actual food or food type
- Fear of what it does to your insides, or to your body (this one is the main cause for co-occurring anorexia)
- Trauma that caused restricted eating
- Disgust of the type of food (eg: disgust of the colour, the flavour, texture, smell, site, feel, etc) – basically an intense SPD reaction to certain foods that makes you “sensory avoidant” of that food. This is the main type of ND ARFID (most commonly known ARFID with ND people).
- Obsessive-Compulsive Disorder (OCD), Executive Functioning Issues (EFI), or Pathological Demand Avoidance (PDA) around food and food preparation. This one is also common in ND people, and if the OCD, EFI or PDA symptoms are strong enough or have become completely disabling – the person can develop a more temporary form of ARFID. Or if these issues remain untreated - ARFID can become permanent.
- Burnout that leads to being completely unable to feed yourself, go shopping for food, or prepare or even eat food.
Which type of ARFID do you identify with? Or do you fit into multiple categories? Do you both fear strong smells, and dislike the taste? Or do you have OCD, EFI or PDA that affects eating? I have a mixture of Burnout, EFI and SPD that leads to restrictive eating AND an inability to decide on food, prepare or cook food – or to even shop for it. It’s truly debilitating, but it’s not just about ARFID for me, I have to ‘treat’ my other disabilities in order to become ‘able’; when it comes to food. I don’t have any fear or anxiety around food at all – but that doesn’t mean that other people don’t; we are all different and need different things when it comes to helping ourselves and our co-occurring disabilities.
To help with ARFID I will be presenting a new topic (hopefully weekly) depending on my burnout and my executive functioning abilities that week. The topics I hope to cover include (and in no particular order):
Anxiety and its role in ARFID
ARFID and introducing new foods
Medications and Supplements for eating disorders
ARFID: The importance of bland foods or predictability
SPD and ARFID
Complications of Anorexia and ARFID combined: body dysmorphia & dissociation
APD and misophonia and its effect on ARFID
Executive dysfunction increases ARFID symptoms
No Food is Junk Food for an ARFID person
ARFID & Language "preferred vs safe"
ARFID and a fear of food
Controversial therapies
ARFID and gentics
Food chaining and other great methods
OCD and PDA and how it affects ARFID
Trauma and anxiety in eating
Medical Issues that may affect ARFID
ARFID and co-occurring incontinence
Specialists and their roles
Routines don’t work for all
Predictability and safety in eating
And many more….
Thanks for reading this very first blog about ARFID, I hope you enjoyed it and come back to read more in the upcoming weeks, or perhaps look at my book series: Autism: The Big Book Set of Help! Available in bookstores, libraries and Amazon (book 2 has a huge section about ARFID):
For amazon: use your countries amazon address followed by: /dp/B0DB6268PP (as exampled below.
USA: https://www.amazon.com/dp/B0DB6268PP
Canada: https://www.amazon.ca/dp/B0DB6268PP
UK: https://www.amazon.co.uk/dp/B0DB6268PP
Aus + NZ : https://www.amazon.com.au/dp/B0DB6268PP