Treatments for ARFID in autistic and ADHD people. The good the bad and the ugly. Part One

November 5, 2024

By Heather L. E. McKay

Part One: behaviouralism- the bad and the ugly

I’m going to run this three-part blog series in reverse order and start with “The Ugly” and “The Bad” therapies for ARFID. Mainly because I want to end with something positive – “The Good”.

TW: this blog contains information about ABA and other traumatic types of therapies. Please, if you have been through traumatic therapies and have cPTSD or other mental health issues, or suicide ideology because of those direct experiences, please either consider not reading this blog (and skipping to part 2), or be considerate of yourself and take care. Some of what I have written may trigger you and your trauma. I apologise in advance for anyone that may be triggered by what this blog contains. But you often cannot know about or understand what is bad/ugly and what to avoid, if you don’t know what those things contain or do – and why they are considered bad/ugly.

This blog is about shining a light on those things that cause harm to a person with ARFID, but before I do, I have to get a few warnings and basic information about behaviouralism out of the way first; please bear with me, but if you already know everything there is to know about ABA/ PBS and behaviouralism– please feel free to skip to Part 2: “So how does behaviouralism apply to ARFID specifically?” OR….

If you’d like to know more about ABA and the alternatives – please read my book- “Autism: The Big Book Set of Help: Book 3 ABA and Alternatives”, available from bookstore, libraries, online and Amazon (in eBook and paperback formats). https://www.amazon.com.au/Autism-Big-Book-Help-Alternatives-ebook/dp/B0DB7V4177 (remove the au if you are in the USA, or remove .com.au and add .co.uk for the UK). If you want to see the list of do not’s (for ARFID) please see Book 2: Co-occurring Disabilities in this series.

What is ABA you ask? It’s an abbreviation for Applied Behavioural Analysis. Some countries (notably the UK, Australia and New Zealand, and some others) renamed it to PBS (Positive Behaviour Support); PBS is the same as ABA and is just as abusive – please don’t be fooled by people who try to convince you otherwise. People who keep saying that there is nothing wrong with PBS (or “new” ABA) are not listening to the autistic (or gay) community. If anyone tries to explain or convince you that it is not abusive; either walk away or (if you have the spoons)

ask them: “Do you listen to the people who this ‘therapy’ is being used on?”.
They will either reply: “Yes”, that they do listen – in which case
you reply: “No, you’re not!” – and walk away
OR – if you want to educate, you can say something like: “No, you’re not listening! If you were then you’d know that by arguing for PBS/ABA– you are not only arguing for conversion therapy, but you are also invalidating and gaslighting the autistic community and treating them like you believe they have no idea what they’re talking about, or you think they are incapable of rational, reasonable, coherent, or valid thoughts or feelings. And that you believe that they don’t have a right to a say in their own lives, or that they don’t deserve respect, dignity or even basic human rights. If you defend, explain or argue the benefits of conversion therapy or try to minimise the harm that ABA or PBS does – to any community, then you are an unsafe person – anyone who tries to justify conversion therapy is a sadist” and then walk away.
If they answer “No, we don’t listen” – then they have proved the point entirely. Only people who aren’t listening and aren’t willing to learn will praise or defend behaviouralism ABA and PBS.

There is no point arguing with cults – and that’s what ABA is, it's a cult that has turned into a multibillion-dollar operation that refuses to listen to us and continues to do harm.

If a person says that they are a ‘behaviour therapist’ but says they don’t use ABA/PBS or behaviouralism – Please be extremely wary and careful and ask them something along the lines of: “Then how are you qualified to help? Because your whole ‘behaviour therapist’ course is only about learning how to use behaviouralism, and if you don’t use behaviouralism, then you have nullified your qualification, and therefore invalidated and misrepresented your expertise and your ability to be paid as a ‘therapist’. You must have a secondary qualification to be paid as a therapist of something other than ‘behaviouralism’. If you have no other degree or qualification, then what am I paying you for? I can’t pay you as a ‘behaviour therapist’ if you don’t do behaviour therapy, so how are you legally receiving money?” This is fraud, plain and simple. Either they are using behaviouralism and being paid as a behaviour therapist (not fraudulent, but it is harmful), or they are not doing behaviouralism and pretending to be a ‘behaviour therapist’ which is fraudulent – they are misrepresenting who they are, and what they are doing.

Warning: there are some therapy offices around that tell the government and insurance companies that they are performing ABA or PBS, but they are not. These people are usually trying to be neuroaffirming and give families options instead of having to use abusive ABA and PBS therapies. But if the family or the businesses are caught – both entities could be in a lot of trouble. If you have been court ordered to do ABA, but it turns out you are not – it could mean jail time, fines, or possibly having your children removed from your custody. If you are defrauding your insurance company, they could sue you and ask for all the money back plus damages or other penalties. If you are a company deceiving/ defrauding families or insurance companies – you could be in a lot more trouble. I know many people feel this is their only option, (and it might be) but please be fully aware of the risks before pursuing anything like this.

ABA was invented by Ivor Lovaas (in the 1960’s), based on the behavioural animal training work of Ivan Pavlov and BF Skinner. Lovaas took the animal ‘conditioning’ training research those other psychologists and scientists had performed, and started using it on innocent and vulnerable disabled autistic children and the LGBTQ+ community. Yes, he invented one form of gay conversion therapy – which is exactly the same as ABA (completely indistinguishable from gay conversion therapies) as he used the exact same techniques in both ABA and gay conversion ‘therapies’.

The exact same techniques in todays (2024’s) ABA/PBS is used in today’s gay conversion therapy – there is no difference whatsoever!!!! Except they interchange the words gay for autism, and conversion therapy for behavioural analysis or ‘behavioural’ anything (eg: behavioural plans, behavioural support, behavioural therapists, behavioural technicians). Please – if anyone wants to disprove that ABA/PBS isn’t abusive – please first prove that ABA/PBS isn’t the exact same thing as gay conversion therapy – if you can prove that (which you can’t, because it is), then you may have a chance of convincing people that it shouldn’t be outlawed and completely washed from the surface of the earth and beyond.

Lovaas didn’t stop at using animal ‘conditioning’ training techniques used by his predecessors. He added electro-shock treatment for human autistic children, because the previous work on animals apparently wasn’t harsh enough. The original animal ‘conditioning’ training methods he tried had little to no effect on converting or conditioning autistic people into ‘typical’ people, so he upped the ante. The ante was usually to do the therapy for longer and more intensely than animals are treated with the same ‘therapy’ (today’s ABA is recommended for children to spend upwards of 40 hours a week in clinic).

Dog trainers don’t actually use those techniques anymore; as they were found to be inhumane and cruel, but Lovaas and his disciples continued -and still continue with it today in 2024 clinics. Dog training is now heavily controlled, supervised and monitored by legal requirements and registrations and audits etc – but ABA is not.

BTW: Electro-shock is still being used on autistic children at the Judge Rottenberg Centre in the USA to this day. Gay conversion therapy has been banned across many countries, but the exact same ‘therapy’: (but differently named) ‘ABA’ or ‘PBS’ is still being used globally to the detriment of all autistic children. I will not pull any punches here, and I won’t lie or manipulate the truth like ABA does. ABA research that says that it works has actually been disproven, check out: https://therapistndc.org/aba-is-not-effective-so-says-the-latest-report-from-the-department-of-defense/ The ABA research itself has also been shown to have a complete conflict of interest; some of the people involved had a vested interest (invested money into its success) to provide any sort of ‘evidence’ so they could exploit children and make money. There is no ‘evidence’ or proof that ABA actually works and does no harm, because every piece of research that originally inferred that it did work- has been disproven, pulled in for ethics and rights violations, or called into question for conflicts of interest. And no research has appeared to prove that it does no harm. That’s the most damning part I believe – that they can’t prove it doesn’t do harm, is the thing that all medical professionals that take an oath ‘to do no harm’ should be paying attention to.

Please don’t get hung up on the technical name of ABA or PBS – behaviouralism is behaviouralism – no matter what you name it – it is the same thing and it is everywhere. It is in workplaces, schools and the home or even found in relationships – it’s not just in ABA/PBS centres across the globe. It is worse in those centres, don’t get me wrong – intensified and specifically aimed abuse is usually always worse than indirect or subtle abuse.

I experienced the indirect/direct behaviouralism throughout school and I have massive trauma from it. I didn’t have to be diagnosed as autistic as a child to have experienced it and be harmed by it.

People that ‘apply’, ‘teach’ or ‘use’ behaviouralism in centres are the ones that call it ABA or PBS and package it into an expensive torture chamber, in order to make money from an autistic child’s pain and suffering. Because ABA and PBS are usually exclusively used on disabled, or specifically autistic children, it’s not something that’s used on NT children in a centre or as a focussed therapy. But it still exists outside of these centres, it’s just not usually focussed and timed. The rest of the world call it something different, like: classroom management, rewards, praise or incentives, or discipline, or something else entirely – but it’s all behaviouralism. And when you use any sort of behaviouralism on someone to make them something they are not, or to invalidate a person’s identity or their personhood, or their sex, disability etc – it’s conversion therapy.

Don’t be fooled that you can escape it if you simply don’t send your child to these “ABA” named institutions, or that they’ll never be traumatised by ‘ABA’ if they don’t attend them. Behaviouralism is in many therapies (including some OT, most dietitian clinics, and in speech therapists’ businesses), it’s in all schools (as teachers are taught at university level to use behaviouralism for ‘classroom management’), and many parents also use it to ‘control’ or ‘discipline’ their children.

You can learn to fight it and avoid it, but you’ll need to know what it is to be able to achieve this. We don’t have to live in a world that uses behaviouralism – it is not the be all and end all – there are other ways (better ways) to achieve a desired goal – without abuse. I’ve left behaviouralism behind, and removed it from all parts of our lives, and my kids are finally thriving. When they eventually enter the workforce, they will be better equipped to fight it and to self-advocate against its use – because I’ve been teaching them how.

Basics of behaviouralism: at the very core of behaviouralism -is its goal. The goal to change or control the behaviour of others (whether dog, human, fish or unicorn). The goal is the whole point of the billion-dollar industry that includes not just ABA/ PBS, but also includes parenting books, courses and instructionals – which are usually heavily laden with behaviouralism. If you take away the goal of changing the person or their behaviour– it is no longer behaviouralism. And if you take away behaviouralism -you finally have a happy healthy person that is free. Free from manipulation, coercion, and harm… free to be themselves, free to grow, learn and progress and free to enjoy, and reclaim the benefits of intrinsic motivation instead of damaging extrinsic motivators (which is what behaviouralism makes you dependent and reliant on – look up RDS – Rewards Deficit Syndrome). You don’t need to change the person or their behaviour to gain ‘respect’, or to get something achieved. We’ll talk about how to achieve this in part 2: “The Good” – without the use of any behaviouralism.

There are many techniques that are used in behaviouralism, the most famously used are praise, rewards and motivators to gain control and to coerce the person to do what you want. Other techniques vary between locations, therapy disciplines, and the type of environment (eg: school vs work, sports groups vs camps etc). Each environment will employ something slightly different that appeals to the person running it, and they believe has the best success rate.

Examples of behaviouralism being used in different places:

A school may use a shame board – where children have their names written on pegs – the pegs are attached to a board with scores from lowest to highest. The child’s peg is moved lower when they become unable to do something, and moved higher when they are able. This is called a shame board because it publicly names and shames kids that are falling behind and are disabled by the task.
A school might also have an awards day – where the same children, year in and year out are given awards for being ‘better’ than their peers. This demotes kids who are unable and creates boredom and disinterest for the rest who consistently are able.
A dietitian’s office might use a reward or an ‘If/Then’ motivator to get a person to eat something specific. This is invalidating of the person and their eating needs and blames the ED as a behavioural issue, instead of a mental health issue, or gaslight a valid SPD or other issue. An If/Then motivator also invalidates the person – if/then should only ever be used as a schedule of events – never as a: “if you do this hideous thing, we’ll do something you like to do”
A workplace may have an employee of the month program, where the same person is rewarded and acknowledged every month and the rest of the staff end up not bothering because there’s no way they’ll ever be able to compete. That employee of the month is usually eventually promoted, and then is not allowed to be considered for the employee of the month program ever again – and therefore loses the motivation to try, or to perform as they used to. BTW: a paycheque is not a motivator or a reward– it is a recompense for hours worked and tasks completed.
An OT might withhold a certain activity or toy until the child has performed like an obedient monkey. This is abusive as that activity/ or toy/ or thing might be a regulation tool, or a disability aid/tool, or have a specific need for that child. Therapy is supposed to be fun and engaging, if you have to use a manipulation or coercion tool to get a person to do something in therapy – you are not a good therapist – you are not moving at the patients pace, or using the correct tools or strategies to suit the individual – you are treating them as a square peg trying to shove them into a round hole. You are the one who needs to adapt – not the patient. Causing a person to become distressed or hit meltdown is a sign that you are not helping – you are causing harm. Good therapy should never involve the person becoming distressed or upset.

There are many more examples of behaviouralism in action; please see my book about ABA for more information.

So, how has ABA changed since the 1960’s???? It Hasn’t!!!!! Other than getting a new name – PBS. But “a rose by any other name would smell as sweet” …… and if you know your history, you’d know that the “Rose” that Shakespeare was referring to, was the Rose Theatre that was situated next to a foul smelling factory area, so the line in his play always received uproarious laughter – and so should ABA for changing its name to PBS, but not changing any of its methods – but especially for not changing the goal.

Conclusion about behaviouralism:

ABA/PBS and other forms of behaviouralism haven’t changed since Lovaas invented it and it turned into a human rights violation. Because the goal hasn’t changed! The root of the process and their techniques hasn’t changed in the slightest. Their goal is still to change the child and the behaviour – and that’s what is wrong with behaviouralism. It does not holistically or even kindly look at the child or the child within.

The same goal was made for the gay community when homophobic people invented gay conversion therapy – the goal was to change the ‘behaviour’ to be ‘not gay’ – to ‘behave’ in a ‘straight’ or heterosexual way. To make sure that the gay person was indistinguishable from a heterosexual person, by stripping away any ‘behaviours’ that were considered (by the homophobic community) to ‘seem’ or ‘look’ gay in appearance, sound, or in any other way infer that the person might be gay.

But a gay person is not a heterosexual person and never will be or could be. They are who they are. And to use any sort of behavioural techniques to achieve that goal is wrong. It’s sexist, phobic and traumatic and especially abusive. And that is the same goal of ABA/PBS or behaviouralism.

The goal of behaviouralism (and especially ABA) is autistiphobic (an irrational fear of autism or of autistic people) and ableist, and it is used to change the autistic person’s behaviour to neurotypical behaviour. To make an autistic person use NT behaviours to make them appear NT – when we are not NT and never could be and never will be, no matter how hard you try to convert us. What they see when they ‘think’ ABA is working, is actually causing masking. We can learn to stop showing some of our autistic traits on the outside – but it’s only a mask, it’s not true conversion. To truly convert us, you’d have to remove our brain/neuro wiring – throughout our entire bodies – which would kill us, and we’d no longer be us, even if anyone could survive that – which they can’t.

Some behaviouralists now say they no longer trying to change the autistic person in an attempt to make parents and others believe that they are now neuro-affirming and actually trying to help. But the whole premise is still to change the behaviour. A behaviour that they see as wrong/ broken or need ‘fixing’ (because it’s not a NT behaviour) and they fear what they don’t understand. But that behaviour is indicating a need, and to ignore the need and only ‘fix’ the resulting visual behaviour of that need -is not just neglectful, it’s downright abusive. As that person still has a need, but now they have no way of displaying, communicating or showing anyone that they have an unmet need. It causes a person to hide their very really and very necessary needs. It gets them to hide that they are autistic.

The person performing behaviouralism never ever think – that the autistic person is fine the way they are, they just need assistance to understand the world around them, and to continue doing what they’re doing. Or that they sometimes may need assistance to find adaptable tools and solutions that allow them to continue being themselves – but without the barriers that were causing pain or problems for them.

They always blame the patient – they never see the environment, or the task, or the expectation as the issue. They only ever see the resulting behaviour as needing to be addressed and changed – to the detriment of the patient. Because they don’t understand what it is to be ND, and how our experience differs to that of their experience.

If you don’t understand the behaviour in the first place, how could you possibly understand how to help. And when you apply your own NT logic to that of a person with a different neurological experience, you are very likely to cause harm, because –

you are assuming things that aren’t true, and
You are using tools/strategies that work for NT people without realising those tools/strategies are what cause the issue for us in the first place. And
Because understanding stems from empathy, and since autistic and ADHD people often show empathy in a completely different way to that of NT people (and vice versa), how could you begin to experience, feel, understand or identify with us or apprehend what those feelings and experiences are like and what they need in any given moment. Eg: you cannot come up with a good solution if you don’t understand the problem in the first place. This is why many autistic and ADHD people usually try to find autistic or ADHD therapists – because understanding and strategies usually are better when they come from someone with the lived experience of that thing.

There are other issues with behaviouralism that I won’t go into here, please seek out my book on ABA or the other links I’ve provided here, to find out more about the specific techniques used in behaviouralism. For now, it’s enough that you understand that the root of behaviouralism is the biggest problem – the actual GOAL is to change the person – not to support the person, or to find ways for the person to cope or make adaptions for themselves.

And that is the difference between ‘neuro-affirming’ and behaviouralism. Behaviouralism, at its core- is to change the behaviour/ change the person. Whereas neuro-affirming care, at its core, is to support the person and the person’s needs. And that’s why behaviouralism is not redeemable in any way, and why it can NEVER be called ‘affirming’ because its goal is the exact opposite of ‘affirming’ of the individual or their needs. If you take out the root goal of behaviouralism – and stop trying to ‘change the behaviour’, it’s no longer behaviouralism.

If you are neuroaffirming; you have removed any need for the person or their behaviour to change – instead, you have identified the person and their needs and found a way for them to live happily – so that ‘problematic behaviour’ doesn’t appear.

“Problematic behaviour” is usually either of two things:

Distress signals that come from fight/flight/freeze/flop/fawn and flex (see my books for information about ‘The flex’) responses to trauma – that are communicating that something is wrong and causing pain/ fear etc. and doesn’t need to be ‘changed’ because it’s the cause of the behaviour that needs changing – not the resulting communication that needs changing.
A display of ‘behaviour’ that is different from your own, that you do not understand. Eg: autistic stimming – which does not need to be changed – because it’s who they are, and what they need to do to become regulated and happy.

So – hopefully you now see why behaviouralism is never needed or required – but also why it’s abusive to use it.

PART 2:

So how does behaviouralism apply to ARFID specifically?

As I’ve stated previously; there are many techniques used in behaviouralism to force compliance/ conformity. ARFID is not about conforming or compliance – so behaviouralism has no place in it.

For some people with eating disorders that include a body dysmorphia element, where the patient is trying to learn new habits and rid themselves of old or poor habits -some people turn towards behaviouralism. And I suppose it could help some – but only if it is their choice, their decision, and they have complete control over it. Honestly, I wouldn’t use behaviouralism in this scenario either – because, as I’ve stated previously – behaviouralism has never been proven to actually work long term – or to do no harm.

I’ll list a couple behaviouralist techniques used in ARFID treatment here, for you to be aware of and to avoid.

The first is Exposure Therapy or otherwise known as Desensitisation Therapy:

No matter what you call it, the technique and the outcome is the same.

The technique is to ‘expose’ or ‘desensitise’ the person to the thing they find painful or abhorrent – and those visual cues that tell you that the patient is experiencing pain or find it abhorrent will come to the fore when they are exposed to or forced to confront those things. But they don’t call it painful or abhorrent, they instead call it a ‘behavioural problem’ (or ‘problematic behaviours’ that need ‘fixing’). Or they’ll call it a ‘phobia’ (irrational fear), or call it as something they ‘don’t like’. As I’ve said previously in other blogs – these things don’t apply to autistic or otherwise disabled people because our ARFID is usually not behavioural based, and it definitely isn’t irrational or simply down to ‘not liking’ something. Please read the blog about SPD for more information about this, if you haven’t already.

The behaviouralist (or possibly NT) view of ARFID is that it can be fixed by ‘exposing’ us to food and drinks. I’m sorry but I don’t know anyone who hasn’t experienced some sort of trauma from being ‘exposed to’. The behaviouralist view is that the eating ‘behaviour’ is a behavioural ‘issue’ – because their only education is in behaviour.

A behaviour therapist’s education is 40 hours long. In total – they don’t study disability or autism, or neurological differences, or actually anything at all, except how to use manipulation and conditioning methods to control and change behaviour. They don’t have to undertake a degree or have any background or knowledge in dietetics or disability to use their 40-hour certificate to abuse children for 40 hours a week (40 hours is the current recommended timeframe for a child to attend ABA/PBS per week). And in many of these ‘therapy’ sessions these ‘technicians’ use behavioural techniques to work on a child’s eating disorder.

Horrifically, parents actually agree to this in the ABA contract- that eating more, or eating a variety of foods is one of the ‘goals’ of the therapy – and the techniques used will be behaviouralism based. This actually scares the crap out of me, that the medical profession isn’t up in arms or screaming for these people to be arrested for performing medical treatments for medically diagnosed eating disorders (that also contain a psychological component) without a licence or a qualification in or even adjacent to that eating disorder or diagnosis.

Behaviour Therapists have no business dabbling in dietetics or in the ‘treatment’ of the disabled, as they have no education in ED’s or in disabilities. Unfortunately, most dietitians that have actually studied eating, food and nutrition etc, also haven’t studied autism or neurology or disability, and many are taught within their degrees that behaviouralism is how you treat all eating disorders. Because ED’s like anorexia have predominantly (and traditionally) known to be psychological or perhaps behavioural based. And to treat something that is behavioural – they have traditionally used behaviouralism. And to treat something psychological you used a psychologist or psychiatrist (depending on the need) – but that psychologist has traditionally also used behaviouralism or ‘talk therapy’ to ‘change the behaviour’.

A dietitian would approach the ED from the behaviouralist framework, and the psychologist/psychiatrist would approach it from their area of expertise. The patient would receive a multi-disciplinary team approach to the treatment of ARFID, but traditionally it would’ve been ‘behaviour’ based.

NOTE: ‘talk therapy’ often doesn’t work for autistic or ADHD people, because it’s often based on the assumption that the patient has blown their thoughts and feelings out of proportion, or they are ‘imagined’ or ‘created’ falsehoods that don’t really exist. But for the ND person – their lived experience is different, and those things do exist, are real, and haven’t been ‘blown out of proportion’. Basically – traditional therapy like CBT is gaslighting to ND people.

In traditional ED therapy: The psych would look at why the person developed the ED and would help them overcome their psychological issues to heal the brain/body and overcome the mental issue that was preventing them from healing – mentally. Or to overcome the fear of gaining weight, or of having a certain ‘appearance’ when eating too much or too little- or when eating certain types of foods. The psych would look at the person and how they came to have an eating disorder and what the ‘motivation’ was for keeping the ED – or continuing the current ‘behavioural’ patterns. They would use methods to ‘condition’ the person to stop the ‘problematic behaviour’, as well as use talk therapy to help the person air their issues and learn to cope with them. And some of this is still valid and usable today. But for an autistic or ADHD’er, or a differently wired person – the ‘talk therapy’ needs to be adapted to a more affirming DBT therapy – or to things like tapping or EMDR. And the ‘motivation’ or inclination towards ED’s often stems from different areas.

Motivation for an ED: for me- my motivation for ARFID is to stay clear of smells, textures and flavours that cause me actual physical pain (things that activate my SPD). For another ND person – they may be avoiding things that activate their other diagnoses (diabetes, coeliac, IBS, reflux etc). And for another ND person it may be OCD and/ or control issues. Many ND people feel the need to control smaller things in their lives when they find bigger things to be uncontrollable (eg: their job, their schooling life, their burnout). That’s why eating is often the first thing to be controlled or limited.

OCD can also influence other ED’s in ND people – like people with Anorexia often have very significant OCD symptoms. They might start exercising profusely to control another area of their life, or to ‘fit in’ with the society that shuns us. Many autistics especially find bullying a strong motivator to control food and exercise. Where they find they are bullied less if they fit into societies thin and ‘pretty’ conformities and expectations. So, the ‘motivation’ to continue to not be bullied is very strong – and therefore the ED is very hard to shake. And to treat the ED – you actually have to work backwards and find the cause – treat the OCD – but make sure they understand they won’t be bullied – but to do that – you need them to feel safe and to actually remove those people who bully them. In some cases, this can be family members who also exercise and eat to ‘stay slim’ or inadvertently put pressure on them to look a ‘certain way’ or maintain a certain status in society.

Another reason to exercise and limit foods can stem from our ‘special interests’ or our hobbies. Because dieting and exercising is seen (by that toxic society) as being socially acceptable behaviour. But because we tend to hyperfocus on our special interests or hobbies – sometimes we take it to the extreme. We need other ‘special interests’ to move to, or to focus on. Check out my “book 4: tools and other information” for more help on Hobby Depression and how to help with this.

There are many reasons why we might develop an ED. For autistic people, we are born with co-occurring SPD – so it’s likely we are born with ARFID – that we don’t actually ‘develop’ it as such. To figure out how to approach the ED – we need to look at ALL the co-occurring disabilities of the patient, and then we need to address the things that can support or help those co-occurring things, and then we need to look at the underlying ‘motivators’ to continue certain eating patterns….. and how we can support and redirect some of those things. Again- We don’t need to change the behaviour – we need to understand the reason for the behaviour and then remove barriers that are causing those behaviours.

The dietitian in traditional ED therapy: would slowly and gently ‘expose’ the patient to the foods they had stopped eating, once the psych had made some progress with the mental area. They would work simultaneously (with the psych) to help the patient to regain ‘healthy’ eating patterns. But they would use behaviouralism to achieve that end goal along with exposing them and trying to cause new habits…. Please read my blog about “habit forming for ADHD’ers” to understand why that also doesn’t work for many ND people.

“The Ugly” of the old/traditional methods: if a person was placed in a hospital or institution to overcome their ED, they were/are still sometimes put in terrible conditions and treated very badly indeed.

In some eating clinics, the patients are tied down at night, so they will not try to remove feeding tubes. Or their hands are bandaged to prevent movement of fingers – so they can’t remove tubing at all (during day or night).
They are paraded around in their underwear (totally without dignity or respect) to ‘get them used to their body’.
They are force fed food.
They are punished if they don’t eat at certain times or eat certain foods.
They are pathologized and treated like Inhumans, or they are treated like ‘imbeciles’ or intellectually incapable of ‘doing’ or ‘being’.
They have to weigh themselves nude because there is no trust or dignity for the patients.
They may be strip searched upon entry to the facility, to make sure they aren’t concealing diet pills or ipecac.
They are followed to the bathroom and watched 24/7 to make sure they aren’t throwing up after meals.
They are rewarded with praise and actual rewards when they do well and punished when they are unable.
They are given strict routines and schedules – which is often harmful to the ADHD’er or to people with executive dysfunctioning issues. And they are not allowed to deviate.
They have their phones removed, so they cannot have support – which is harmful to people who need co-regulation with specific ‘safe’ people.
They have technology removed – so they have no outside world contact, and everything is controlled. This is abusive to autistic people who rely on screens to regulate their emotions and to stop the inner monologue that can actually increase anxiety and fears and decrease good mental health.
The strict schedules they are set - actually decreases interoception awareness of hunger and the internal need for food… and it stops them from accessing foods in between ‘feeding times’.
All of the above actually increases anxiety, fear and bad mental health, and decreases appetite, the ability to eat and the ability to heal.

None of this is conducive to having a good or healthy appetite. None of this is kind or respectful or dignified. None of it is good therapy. Good therapy occurs when the patient feels safe, feels supported and feels they can be themselves. Yes, some Anorexia and Bulimia patients can become sneaky about doing certain things and they need completely different supports to AFRID patients – but that doesn’t mean that they don’t deserve respect or quality care. And none of the above (in my opinion) is conducive to the healing of any sort of ED – because these types of techniques cause the patient to enter the “Flex” response to trauma (see my Book 4 for more information).

How does the above hurt the ARFID patient: You cannot treat an ED patient with disrespect and complete control and abuse.

For starters, ARFID people don’t throw up because they want to (like bulimia patients), they throw up because they either have a fear of swallowing or digesting the food, or because they hate the texture, and it involuntarily comes back up. An ARFID patient wouldn’t hide the fact that they’ve thrown up, they are more likely to be honest and tell you about it.
ARFID patients want to eat but can’t. Whereas Anorexia patients don’t want to eat – so they don’t. By only eating at set times – you actually cause an ARFID person to eat less – not more.
ARFID patients usually want to get better, so a feeding tube will usually be accepted, and actually welcomed – if it’s not accepted it’s usually because they have SPD and the tube is causing sensory difficulties – to fix this, ask the person what about the tube is causing distress, and find a way together – how to fix the issue, or at least make it less distressing.
ARFID is not related to body dysmorphia, so parading the patient without clothes or weighing them constantly may actually cause more eating disorders to be added or may cause complete distress. As the SPD person may have terrible pain walking without socks/and or shoes, or they may have to wear certain things to feel safe and regulated. Or even the temperature being too hot or too cold will stop them from being able to eat.
ARFID patients don’t conceal food/medications etc – unless they are force fed, and then they will be forced to try and hide the food you are trying to force on them. Give them their safe foods – and you won’t have a hiding problem.
You do not need to follow an ARFID patient to a bathroom or monitor bowel/body movements unless they have co-occurring constipation – and if they do, they are likely to tell you directly and honestly about their movements (unless they are withholding faecal matter – if they are, join my incontinence Facebook group for more information and guidance– “Neurodivergence and Incontinence Support”. Withholding is a separate matter and is very dangerous if left untreated).
Rewards and punishments don’t work on ARFID, because it’s not behavioural, and behaviouralism is toxic to all people.
There are many more, I’ll try to address in part 3 – “the Good”.

The Ugly and Bad of exposure/desensitising for ARFID:

This method starts out by getting the person to lick, touch, smell and look at food that is actually detestable to the ARFID patient. And they build up to licking and biting it – without any thought to the reason for the ARFID. If it’s sensory based, no matter how often you do this technique the person will forever (lifetime) still hate that texture/ smell/ look/ taste etc. They will never really not like it, because our senses are usually heightened from birth – and you cannot change our sensory wiring. We can mask it in small bursts – but masking our SPD long term will only end in burnout and trauma.

Eg: The temperature that we like our showers will usually remain that way for life. It may increase or decrease ever so slightly throughout time, but we will always prefer a bath to a shower or vice versa, and the water to be a certain temperature, and we will always prefer a certain brand or type of shampoo or soap – whether we are NT/ ND/ alien or horse – because that’s the way we are born – with instincts and preferences for certain things. To desensitise a person with SPD is complete nonsense. We are born with SPD, with our preferences and our likes and dislikes, yes, we can gain and lose certain things over our lifetime due to our experiences, but if they are forced experiences, like exposure therapy – then NO! – we are only ever traumatised by forced experiences that don’t honour our way of being and living. To gain more foods with our SPD, we need to do food chaining…. Neuroaffirming food chaining, where we are only chained to foods that will not activate our SPD or other co-occurring disabilities.

Part 2: the Good is coming soon – please be on the lookout.

NOTE: I am aware that many people in countries like America have had their “choice” of therapy taken from them, (as they are court ordered or forced into doing ABA) which is against the UNCRPD – but we won’t go into that here in this blog. No therapy is better than ABA or any other Behaviouralist therapy. Please take care of yourselves, and know that the autistic community are working to have behaviouralism – but especially ABA and PBS banned and outlawed worldwide. Please support us in this effort, it’s vital for the happy and healthy future of all autistics.

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