By Heather L. E. McKay
This one’s a tricky or complicated one, because every ND person has a different presentation of RSD that differs ever so slightly – and how you ‘treat’ the RSD will differ from person to person. One person will need a very specific way of dealing with their sense of rejection, but that will often be the exact opposite of helpful to the next person.
What is RSD? – it’s Rejection Sensitive Dysphoria. It’s mostly been attributed to people being of an ADHD profile, but I can assure you that other people can experience it as well. Most people who have been identified as having RSD have been told it’s related to things like anxiety disorders, trauma or mental health ‘conditions’. But for some, it’s more to do with The Double Empathy Problem (by Damien Milton), or The Uncanny Valley (by Masahiro Mori), or to do with the building of rejection from a young age.
Example: the person is rejected, bullied and gaslit for their entire existence, and then it forms a pattern – where the person learns to pre-empt or understands the signs of forthcoming rejection, and reacts to the rejection before it happens; in a way to protect themselves.
This example is very true of people who are ADHD, and I believe that’s why people who are ADHD are more likely to be identified with RSD than others. From birth, ADHD’ers are told things like:
“you’re so annoying”
“stop that”
“sit still”
“wait”
“no”
“go away”
“AHHHHHHHHH!!!!”
Or…. Their name is screamed instead of said in a ‘regular’ tone.
This occurred to me and two boys in my primary school. One of the parents pointed out to my mother that they’d never heard my name or the two boys’ names said in a calm or nice way – they were always spat out in an angry expletive. One of the boys’ names sounded similar to mine when said in this tone, so whenever I heard his or my name, I came to ‘attention’. My brain/body reflex always went immediately to “what did I do this time?” “My mums going to pissed about having to come to the school again”. “What punishment am I getting this time?” “Which kid in my class is going to bully me again for whatever happened this time?”
This sends the nervous system into haywire, but it also forces us into fight/ freeze/ fawn / flop/ fight/ flex (see my book 4 for an explanation of “the flex”) response of trauma. And if it happens often enough, we begin to look for the signs of a possible threat or rejection approaching.
If we are constantly on the lookout for that threat or rejection, it means we are masking harder than usual; and that our nervous systems are in constant flux and cannot relax or calm. If we miss the signal that we are about to be rejected or threatened; we react with big emotions, words, or actions, because that nervous system was already on red alert. It activates the “Coke Bottle Effect” (see: “That autistic guy” on YouTube- Orion Kelly). We look like we go from 0 – 100 in a second, but we are actually always at 99.99, and that ‘little thing’ that pushes us over the edge into 100 – is not ‘little’ at all, it’s monumental to us, because it’s the thing we’ve been predicting and waiting for. But we missed the cues, and now we must berate ourselves not just for the thing that sent us over the edge (or for the meltdown), but also for the thing that we missed, that we didn’t do to stop the mess that resulted, that we predicted but couldn’t control.
We set ourselves high expectations to try to avoid that 100. We mask and try to set ourselves up for success, but every time we fail, it adds to that coke bottle. It adds anxiety and fear and resentment, but it can also add to our need to control and to fix it.
This is where OCD symptoms often emerge – where we set ourselves rules to abide by, so it doesn’t happen again. We control everything around us in an attempt to prevent it. Because that feeling of rejection or of failure (when we can’t control it) is all powerful. Afterall- it turns into a meltdown. Meltdowns are not fun. They are extremely exhausting and sap all strength and abilities, and the aftermath where you relive what you did/ said or tried to do/not do is replayed in our brains – over and over again, in an attempt to identify where it went wrong and how we could’ve prevented or changed the outcome.
It’s incredibly painful, tiresome, and completely frustrating. But when it occurs – we add it to our trauma/ cPTSD registrars (or memory banks) in our brain/body nervous system. So now, we’ve got one more event to dissect, remember and rehearse/script for. This new event is now fresh and present the next time something resembles it (even slightly). Our brain/bodies are now on high alert and ready for fight/flight/flex etc, if we sense that threat or rejection is about to re-occur. And if we miss the cues, yet again, our reaction will be even bigger than the previous time because we’re trying to fit more into that tiny coke bottle, without first releasing the gas or trying to expand the bottle or get a bigger bottle, or by asking someone else to take some of our coke – and share it between our two bottles (eg: the need for co-regulation).
The way we react to this is what you see as RSD. Everyone will display this in different ways. And everyone will require different strategies, tools or methods to deal with it.
What I’ve come across so far, is usually different types of RSD ‘personalities’ or traits. And each of these personalities tend to display emotions differently – react differently, and need different approaches to help them. Because we are all different and depending on our co-occurring disabilities and on our SPD needs, we will gravitate towards whatever we feel we need in the moment.
Some of us will do what the psychology pages describe as similar to, or hard to distinguish from ‘Social Anxiety’. Where we display symptoms like anxiety, fears and we withdraw from society or have a lot of ‘negative self-talk’. Or even self-harming behaviours or suicide ideology.
Others, like me and one of my kids. Will react sometimes aggressively, or angrily, or need to have a massive meltdown to return to our ‘normal’ state of being. We usually have similar negative thoughts, but they are sometimes outwardly focussed – where we blame the other person or the situation, and we can have an inner monologue where we become stuck in a mind loop of something like: “everyone hates me -I suck, No everyone else sucks, it’s their fault, but if I hadn’t have done X they’d still like me, I’m going to tell them off, no I’m going to hide, no I’m pissing mad I’m going to attack, no they’ll hate me more” etc etc etc. This goes on and on and seems interminable. It’s a backwards and forwards type inner spiel where we are feeling both rejected and sad, but also mad and resentful simultaneously. Whichever thought or feeling ends up on top will be the one that is visually expressed. Eg: either crying or yelling. Both are RSD, both are valid, and both need help, but they need different approaches.
The one method that works for both – is validation. No matter what our external display is showing you- all feelings need to be validated.
The reason that you may see an angry or frustrated response instead of crying or withdrawal is usually due that previously mentioned build up of scenarios that lead to the RSD response. Eg: they are sick of constantly being told off, and constantly being told they are wrong/ broken/ need fixing/ shouldn’t /should’ve or didn’t do -this or that, or they truly feel wronged in this scenario and they feel the need to express that. It could also be because they are so mad at themselves, that they are expressing it outwardly – but they are really just mad at themselves. To figure out which it is, you’ll have to wait till the storm has passed and they’ve calmed. Many people will assume what occurred or guess at what the person is feeling or thinking. Please don’t do this. Everyone’s internal experience is different, and you cannot possibly understand what that person is thinking or feeling from an outward perspective, or from just ‘looking’ at the behaviour.
ND people often have, or display, different emotions and expressions for what they are thinking and feeling than our NT counterparts. Guessing or assuming is putting words in someone’s mouth that possibly aren’t there. Don’t do this – instead- ask them what happened, what they were/are feeling, and what they need from you now, or the next time something like this occurs. Some of us won’t want the subject brought up again, because it sends us on another internal monologue spiral that never ends. But to know this, you’re going to have to identify it. Either set up a system where they can let you know that they want to talk about it, through a communication book, or a signal, or by talking, or anything else that suits the individual. Or don’t bring it up at all. For people with RSD it really has to be up to them. Some of us need to talk about it, to stop us from spiralling, and others need to be silent – to process it, or to forget it and move on. One approach will not suit all, and that approach may actually make it a lot worse.
RSD has been described as extreme reactions to the feelings of being told off, being told no, or from feeling rejected or unloved / disliked. But don’t forget that these are valid feelings for living in a world that literally rejects us, ostracises us and segregates/ bullies us. We have these big reactions, not just because our SPD is often in overdrive, or because of the coke bottle effect, but because – we are reacting in a valid way to an unfair situation and reality. RSD is sometimes explained as an irrational or out of proportion response to something small. But this rationale sees our thoughts and feelings from an ableist perspective of ‘that response isn’t warranted – that thing didn’t hurt that much”. It also sees the RSD response from the ‘fix’ or ‘stop’ mentality of a behavioural approach. We aren’t irrational, our experience is real. We aren’t being ‘over the top’ we are reacting with an equal and opposite reaction to something that has genuinely harmed us.
If you look at RSD from our perspective; you quickly identify that the thing that hurt us was extremely harmful, and the resulting ‘behaviour’, was a direct and equal response of that pain. Eg: if you break your leg, you react in a way that is equal and responsive to that pain. The same as when we react to not having our safe food, or being denied our safe food, or being forced to eat an unsafe food, or having things hidden in our safe foods. Our reaction is warranted because that scenario / behaviour / decision or action truly hurt us, and our reactions are trying to show you just how much it hurt us. Please don’t invalidate us by saying that an RSD response is ‘over the top’ or ‘not warranted’ to that level etc. Our response is an exact representation of our inner experience. We are showing just how much pain we are experiencing. If we hold it in, it can kill us (eg: lead to heart attacks or other heart, stress and anxiety issues).
The way you see or understand the reaction is important for when you look at the treatments for RSD. The number one thing that is recommended for RSD is talk therapy, or CBT (Cognitive Behavioural Therapy). But CBT is actually the last thing that I’d recommend for an ND person. Because CBT is gaslighting to ND people and is the combination of cognitive therapy and behavioural therapy (which is abusive to ND people). It was invented to tell a person that their experience isn’t real, and that they need to change both their thinking and their behaviour. It’s conversion therapy.
CBT mostly says that your feelings and thoughts have been blown out of proportion, that your experience is not real and that you need to adjust your thinking and your emotions to be in line with NT feelings, thoughts and emotions. CBT is often used to tell the patient how to reframe their thinking, so they see their feelings as irrational, not valid, and that’s why they feel the way they do, eg: depressed, anxious etc. The therapist will usually ask the patient about an incident where they’ve ‘overreacted’, and then they’ll explain to the patient how and why their reaction wasn’t warranted and wasn’t valid in that moment, and how it affected those around them, and then how to change their thinking and their behaviour so as not to annoy others. It sees the person at fault for imagining something that isn’t there, or for blowing something up into a bigger thing than it was.
But for ND people, it was real, it was valid, it was that big. Just because the therapist doesn’t understand the ND perspective or experience, it doesn’t mean it’s not real or that they should gaslight us by getting as to believe we are the ones blowing it out of proportion. Please don’t do CBT for RSD. There are better options:
DBT: Dialectical Behavioural Therapy: this therapy is a combination of CBT and a different way of thinking (so it needs to be undertaken by an affirming therapist that understands the ND perspective and experience – so as not to use CBT or behaviouralism). Check out Sonny Jane Wise “The Neurodivergent Friendly Workbook of DBT Skills” for more information on this type of therapy. The biggest difference between CBT and DBT – DBT gets the person to accept their experiences and behaviours – but to make little strategies and use tools to cope and to live happier lives – (if it’s not affirming, it’ll gaslight the person and tell them they need to change).
Four teaching areas of DBT: mindfulness, acceptance & distress tolerance, emotional regulation, and interpersonal effectiveness. Mindfulness, acceptance and emotional regulation are great – chuck the other two (distress tolerance – this is often used to ‘desensitise the person’ and is abusive to SPD and ND people, whereas “Interpersonal effectiveness” is used to tell the person they need to change and aren’t ‘good at being NT'). Another part of DBT which is bad, is that it tries to get the person to accept pain; we shouldn’t ‘accept’ anything – life is what you make it, and we shouldn’t just put up with pain; we should always try to find another way (like Dory says). This is exactly why a therapist needs to be ND affirming, to understand the ways in which each therapy can harm us and do more damage.
The DBT DEAR MAN method for interpersonal effectiveness: (Describe, Express, Assert, Reinforce, Mindful, Appear confident, Negotiate), is highly problematic, as it sees every aspect from the NT lens and NT ability to communicate, relate and express in an NT way.
EMDR: Eye Movement Desensitization and Reprocessing. Don’t jump to conclusions on this one. If done correctly and in an affirming way – it doesn’t ‘desensitise’ the patient. It’s more about learning a new way to deal with emotions and thoughts when they arise. Sort of like reprogramming the brain to take a new direction (but it has to be the patients choice to want to take a new direction – otherwise yes, it’s abusive).
It can be bad. People who have BPD or are non-speaking or have an intellectual disability have said this therapy is a huge NO: as it can actually cause more issues and more trauma! But for some autistic people, it has helped them to stop that inner monologue and to stop the spiral thinking and anxiety.
Another type of therapy that is similar to this, that autistic and other ND people have found extremely helpful is Tapping. Tapping is where you use positive affirmations along with tapping certain places on the body (eg: these places are usually to do with pressure or nerve points – think along the lines of acupuncture points). This method is thought to reduce stress and anxiety and to reprogram the nervous system to gravitate towards positive thinking and can help with emotional regulation – because it is used as/or like a stim. When autistic people stim, we often activate these ‘pressure’ or emotional targeted regions of our bodies without realising it. We sometimes hold the bridge of our noses when angry or frustrated, because it brings focus to the spot just in front of your brain and eyes – it focusses the energy somewhere. Or when we flap or pick our skin, we are activating the arm and finger points. If we pull hair, we are activating finger and head points. When we jiggle our legs or sit in weird poses – we are activating leg or feet points.
The tapping is supposed to be purposeful – where you actively do the tapping and recite a specific phrase at the same time (echolalia). The only difference between stimming and tapping – is that we stim without conscious thought, tapping is done with the explicit purpose of trying to get you to focus the energy to the point while consciously thinking about your inner thoughts at the same time. Tapping is basically formalised stimming in my opinion. And that’s why I believe that it can actually work for ND people.
Other things to help with RSD:
- Identify and Remove triggers
- Find tools that help with emotional regulation (my book 4 has a huge list of things that can help), eg: handheld massage things, deep pressure or proprioception tools, fidgets, weighted toys/ vests/ blankets etc, obstacle courses, movement, breaks and screens.
- Strategies: like tapping or grounding techniques (see my book 3 for more information about good and bad grounding techniques).
- Co-regulation, where a safe person is used to talk to, simply be with, or near, or do something with.
- Sensory rooms or ‘diets’ – where the person rotates their sensory tools and their sensory needs throughout the day – to best activate those ‘points’ on the body, and to relieve the brain/nervous system from overload at regular or irregular times (whichever is needed)
- Interoceptional awareness: getting back in sync with your internal needs and processes. This often takes time and a lot of de-stressing of the nervous system. You usually can’t recognise your interoception needs if your nervous system is sending the wrong, or confusing signals. This happens in burn out, and when we are having RSD type reactions, or meltdowns. We need to drop all demands, all expectations and all actions to reset the system.
- Processing time and understanding. We will often need time and space to deal with RSD. That runaway thought train/loop needs that space/time to slow down, calm and assess and reassess. If we aren’t given that space and time our systems remain in flux and the train steams on.
- Any thing else that the individual finds useful or helpful. Some like a co-regulating pet (a dog or cat to be nearby), others need to immerse themselves in their special interests, others need time to cry, yell or sleep (or be in a dark or cool room), and some need to be active (go running or use a punching a bag), others need to crash and bounce into/ onto things. Others need escapism into a movie, video game or other screen related task. Make sure you’ve identified those things that they need, and make sure they’re available at all times. Do not limit anything!
How does this apply to food or ARFID?
When we’re in our RSD responses, there is no room for appetite or food. We are in the trauma responses (‘f’ responses) and we need the above mentioned strategies and tools to reset so we can ‘feel’ hunger, or want the food again. If the reason for the RSD response is/was food, we may now associate our reaction and that of others with that specific food, or perhaps with all food.
We haven’t gained a fear of food, we’ve gained a fear of being rejected because of food, or because of our SPD needs for specific foods, or for our ARFID. We need to be validated that our needs are real and warranted.
We may not want to talk about the food or what occurred, and that’s fine. But we need safety and predictability that what did occur will never occur again. We need to know that you (our safe people) are doing everything you can to support our needs and our feelings/ emotions/ thoughts – that you have our backs. To stop the RSD from re-occurring, we need to stop that cycle of putting that last RSD moment into our memory banks for future cue finding. If we are looking for: ‘the next time our grandparents are going to tell us off’, or ‘the next time that incident will be brought up’, or ‘the next time that a safe food will be denied or not available’ – we will continue to live in that flux / heightened (fight/flight/freeze/fawn/flop/flex) position. Our systems will be stuck in trying to ascertain the next threat or rejection instead of concentrating on hunger, interoception or happiness. Safety and security is paramount.
A happy child is one that knows they are safe, in a predictable situation or place and are ‘abled’ because the people around them are supportive and nurturing. Happiness and being able to be calm and regulated are the best things to support eating and healthy living. If you have a person in your life that is causing you stress or anxiety around eating, or food in general – then that is not a safe person. It’s OK to tell people to stay away from you, either while you heal, or indefinitely. Your health is more important than their feelings, and if they don’t listen to you about your needs – they are not supporting or respecting you. You do not need disrespectful people in your life. Setting boundaries can help, but if they continue to be disrespectful of you and your life/ experience, unfortunately sometimes removing them is the only option.