By Heather L. E. McKay
TW: for vomit, unsafe food types and trauma.
Many people will talk about their safe foods, and that they are safe (to them) because they are predictable, reliable and meet their sensory needs without forcing them into pain, sensory overload, or overwhelm.
But many therapists will tell you that it’s bad to use the word “safe” in conjunction with the word food- because it infers that other foods are ‘unsafe’ – and therefore it puts the person at risk of not trying other foods just because they are labelled/ or referred to/ inferred as ‘unsafe’. They think that calling something safe/unsafe prevents us from eating. This is complete crap. The reason we call them safe is because other foods literally aren’t safe for us to eat. You don’t need to sugar coat it, pretend, or to find new language in this case, because that’s how we can literally feel about some foods – they are sometimes UNsafe for us.
The phrase “preferred food” infers that it’s a choice, that if we wanted to – we could eat other foods. We can’t, we have a diagnosed eating disorder that prevents us from eating certain foods. Many of us aren’t afraid of food, it’s that we hate and avoid certain smells, tastes, textures because it causes us pain. If you come across something else that causes you pain – you don’t call it “non-preferred” you’d call it dangerous or unsafe. If you see flames coming from inside your home, you don’t say – we should ‘prefer’ to not go inside – you’d say: “it’s unsafe to go inside”, because you could be hurt if you do go inside. The same thing happens with food. Food can be and often IS unsafe for autistic or otherwise ND people to eat.
I can’t eat certain textures of foods because they make me vomit; whipped cream being a prime example. I can’t stop it, it’s my gag reflux hating both taste and feeling of it. I’m not afraid of it – it’s textural for me, and my gag reflux instantly goes into revolt – to protect me from something that my stomach knows always churns and churns and makes me feel ill for hours afterwards. My body is protecting me from something that doesn’t agree with me.
I know some people are afraid of food and/or of choking, but for ND people, it’s usually more nuanced. And just because a bunch of therapists have said ARFID is fear based – it doesn’t make it true. Unfortunately many others have jumped on this ‘fear’ bandwagon without really talking to the person with the ED. They are assuming and making an ‘ass’ out of ‘u’ and ‘me’ (ASS.U.ME). They assume that all ARFID people have a fear of food or of eating, so they wrongly also assume that taking away innocent words like ‘safe’ will remove the fear. Yes, removing fear triggering words may help someone with actual fear based eating issues, but for the majority of us that have ARFID due to sensory aversions – it’s gaslighting, offensive and negating our experience to assume that all foods are ‘safe’. They are not!
I have friends that have IBS, Coeliac disease, Diverticulitis, Diabetes, or GERD (etc)– there are so many damn foods that are not ‘safe’ for them to eat. By removing the word safe from their experience, you are negating their lived experience, you are apportioning a phobia (irrational fear) to something that is totally rational and very necessary for their continued existence. ND people are more likely to have co-occurring digestion issues and other diagnoses that affect eating, bowel and bladder functioning, capacity, ability and daily living skills/ tasks. Please stop telling us that we are irrationally afraid of food or of eating, and that we need to change who we are.
I was often told, when my kids were younger, and even now – that they and I need to change our diets. But to change our diets to a more ‘typical’ one, is not so simple for us, it’d be like changing us from being atypical to typical. It’s not really relevant or even possible. It’s possible to help and support an ND person who wants to add things to their diet, but it’s ableist to assign fear, ‘interventions’, and specifically – ‘evidence-based therapies’ to someone who is ND. Those ‘evidence-based therapies’ are only ever ‘evidenced’ on NT people, and if they are tested on ND people- they are never tested for longevity or long-term harm to ND people.
Exposure therapies for ND people with ARFID are the worst types of ‘evidence-based’ ‘therapies’. They don’t work because they assume fear or behavioural components that don’t actually exist, and they cause harm to the ND identity or sense of self, by inflicting masking and forcing people to endure pain while under that mask. Eg: one of the ‘evidence-based therapies’ for ARFID is family feeding therapy. This one is absolutely terrible for ND people as it has no understanding of the ND experience at all, and another – exposure therapy is ‘desensitizing’ which is known to be abusive to us. More about this in another blog. Some therapy is helpful for some people, but you have to be careful about what the therapy is, how it’s conducted and who delivers it.
I’m not talking about people who need feeding tubes to survive because they can’t eat anything at all, those people do need ‘interventions’ to keep them alive, but if they are ND, they need neuro-affirming supports as well as more comprehensive tools (like feeding tubes), I’ll talk more about feeding tubes and ‘interventions’ in another blog. Here, I’m talking about the average ND person who limits their food due to SPD or co-occurring internal issues or diagnoses that cause minimal functioning issues, interoception issues or have more simple knock-on effects to other areas of their lives. Eg: They are not in life threatening danger because of their ED – it’s just who they are and how they enjoy/ or can live their lives. It may affect certain aspects of their lives (like being able to eat in front of others, or they may need to take supplements), but it doesn’t overtly or adversely hurt them or others – they can live happy lives while restricting their diets – just as many diabetics and coeliacs do every single day.
People need support and tools to help – they don’t need to be gaslit by being told – “you have an irrational fear of eating, and you need to stop – you need to change who you are and what you do – you need to stop having these co-occurring diagnoses and need to stop your neuro-wiring that prevents you from touching/smelling/eating/ things because your senses are on higher alert than a typical person – it’s your fault, you could ‘choose’ to not be ND if you wanted to – it’s just anxiety and fear that’s the issue”.
This is what is called ableism towards ND people and their eating habits/needs, but it’s also part of the Double Empathy Problem (by Damien Milton). Typical people have assigned fault for our unique eating patterns to fear, instead of understanding the ND experience of sensory aversion/overwhelm. They wrongly assume that our senses make us fearful, when most of the time, they cause us pain or extreme joy. Unless you have the ability to feel every sense to the nth degree – you will probably not understand this.
When there’s an incredibly loud noise, it causes me pain – I’m not afraid of it, I’m maddened by it, frustrated by it and often pissed off – but not afraid unless it goes on for too long and I become fearful that my swollen ear tube (I have a hay fever condition that swells the tubes in my ears) will burst/rupture or I’ll become deaf. But initially – it’s not fear – it’s pain and anger. I’m not the only one who experiences this type of thing either.
To say to me – “no, it is fear, you just need help to get over your fear” is truly insulting to me. It would be like invalidating a person with arthritis, by saying “you’re afraid of picking up the pen because you have a fear of pens”. But the person with arthritis (in their hands) doesn’t have a fear of pens, they have a healthy knowledge of what arthritis pain feels like when they use a pen – so they avoid it, to protect themselves from that pain.
When a person with arthritis, is forced to be around pens, hold pens, touch, pick up, look at and trial lots of different pens constantly, then yes – they may grow a fear of pens – but the pens aren’t the issue – the arthritis and the pain they feel when holding/using pens is the issue. Now replace the word ‘pens’ for ‘food’ and ‘arthritis’ for ‘SPD/ARFID’. Now you should see that SPD based ARFID is not fear based and the ‘treatment’ or ‘therapy’ that you use to treat the ARFID/or arthritis will either cause a fear of food/pens (on top of their existing issues) or it will help them to manage their ARFID/arthritis.
In this example, the bad ‘treatment’ would be exposure therapy – where you get the person to play with, touch, lick, smell and try food – this will most likely cause a fear of food for a person with SPD or who is ND. But if you give the ARFID person tools and strategies to work with the food in a neuroaffirming way – then you’ll make progress. The person needs to feel safe, and yes – they need to know what are ‘unsafe’ foods for them. They don’t need to be told that they have ‘preferred foods’, they need to identify for themselves what they find safe and unsafe, and they need to feel safe while figuring that out.
Once they feel safe, their safety circle increases in size and their ‘safe foods’ grow as well. But a specific part of feeling safe is being confident and self-assured in yourself, and in your choices, thoughts and decisions, but especially in your abilities. Part of that safety is knowing decisively what kinds of foods you feel ‘safe’ with and what ones you feel decidedly ‘unsafe’ with – that’s where food chaining comes in. More about this topic in the next blog, on – “Treatments for ND people with ARFID, the good the bad and the ugly”.
But, if you use the word ‘preferred’ (instead of ‘safe’) you may be muddying the water – you may be causing the ARFID person to doubt their decisions and choices and therefore doubt themselves – and therefore causing them to lose confidence in their ability. Strong language helps build confidence and assurance, and that assurance is great at building ability and capacity in ND people who are often gaslit and told we’re wrong when it comes to every aspect of our lives… from what we say, do and like /dislike, to what we eat and drink.
Stability, confidence, reliability and consistency as well as trust, honesty, rest (or relaxing/ comforting/ calming) and true support is what builds capacity and ability in a disabled person – ARFID is no different. It’s not about removing fear, building ‘resilience’ (I hate that word) or increasing one or two foods.
It’s about building ability, and a disabled person can’t build ability if they are being ‘treated’ with ‘therapies’ that increase fear, remove autonomy, or create pressure, in the naïve idea that increasing ‘resilience’ and removing supposed fear is the only answer. We don’t need more behavioural approaches that abuse us, don’t understand us, and hinder us; we need real solutions that build us up, not tear us down.