Case study - preschool RSD infused Pathological Demand Avoidance- It's story time: I am at home recovering, when my mobile rings and I look at it with dread of what might come. I want to ignore it, push the responsibility away but instead I answer the call with shaking hands. “Hello. Is everything okay?” I croak, fingers tense around my phone, trembling against my cheek.
“Hi Joely. I know you’re not working today, but I have *Jack with me, and he would really benefit from talking to you right now.” She says, voice urgent and lowered, a whimpering child could be heard in the background.
I know those cries. He’s anxious and overwhelmed, and nearing a meltdown. Worse of all? He’s anticipating rejection, even when it’s not certain. My body sags. I feel rotten today, and have been fighting with my body to stay conscious and seizure free. but right now, adrenaline is coursing through my veins. My 121 needs me.
“What do you need from me?” I ask, already deciding to give it my all.
“Please, just tell him it’s okay for him to go into the play room and play with his Art therapy toys. Please. He thinks he’s in trouble and is refusing to. Please”
“Of course” in my head I can already envisage what happened - another child did something that needed a slight different tone of voice for mindful discipline and my 121 couldn’t tell this wasn’t aimed at him and now he’s shutting down and anticipating rejection and worries he will be seen as ‘being naughty’ for doing anything at all - even something routine or a demand. The aftermath of Autism and ADHD that so few recognise.
*Jacks face comes on screen, he is red and puffy, clutching his teddy bear to his face between white knuckles, his teary eyes down cast. He is usually is very happy to see me, and I know that even through his fear, he is relieved to know I’m on the phone with him, his sad eyes glance at me making the tiniest of eye contact before looking away and my heart just about breaks. It’s a three call system, and on the other screen, is his mum, calling from work and consenting to the video call, she looks pale and worried, stress lines tensing her features. She’s been considering getting a job working from home to be there for these moments with her son for months now. “Hi Jack, it’s nice to talk to you” I say, brightly and smiling in my usual way, so he knows that I’m safe. Consistency in your normal neutral happy self, is key to dealing with RSD and negative emotions, here. “It’s okay for you to go into the playroom and play with your art toys. I like art and art toys always make me feel better.” I say, evenly. Tone as bright and even as I can manage. The slight flicker that sounds like a demand will make him feel like he’s being rejected at not doing as he’s told. If I tell him I want him to go into the playroom and do his art, its all over, because its a demand that doesn't remove the injustice or perceived rejection. Of course he is not doing as he is told because he doesn’t feel safe, and in so many situations, he is blamed for this, worsening the horror of rejection and demand avoidance.
*Jacks face is distraught but as I talk he begins to process that I’m not mad. My face is even, and looks how I usually look when I am happy and calm. I look and am behaving the same as when we play. So is my smile and my tone. This consistency makes it a lot easier to read me. I’m safe. Maybe he’s safe? His eyes flicker up and he sees me smile and his lips twitch into the tiniest of smiles that vanished the moment it appeared. “It’s safe to go into the playroom and play with your art toys. Which is your favourite art toy? You’ve done so well to paint and draw and it’s all because you tried your best! we are so proud of you for trying. You’re very good for always trying. Do you want to do your art? It’s safe to do your art in the playroom if you want to.” Hesitantly he nods and I can see his brain whirling, 'what if I’m too naughty to do art?' He’s still anticipating a rejection even with it not being certain at all. Then it clicked, he needs to see the activity is safe by witnessing an adult do it first because to him – adults can do no wrong. I clear my throat, pushing away the thoughts of pain and discomfort that I would later experience as a consequence for being on the phone working longer than is safe right now. “I’d like to do art too. Why don’t we do art together? You could show me the pieces, and we could put the art toys into lines, and think about how to make the picture together” *Jacks face flickers and brightens and he nods slowly. “I do it art with Joely?” He’s still uncertain but hope is blooming his features. He’s so desperate to be good that he never realises that he is actually good- so used to thinking everything he does is wrong because he thinks every adult irritation is aimed at him, internalising to this heartbreaking result. “Id like to see your art toys, can you show me your favourite art toy please?" I ask, after much thought over how to say a demand that leads him closer to something therapeutic and routine, without being perceived as a demand. My demand, is not perceived as such, and he flickers, I could see him working it out, 'I can show her my art...I don't have to do art. I can still be good' he's thinking, and he looks at my face and then the face of his current care giver, who nods and smiles. They walk slowly into the play room and he hesitates, thinking carefully, as to which art toy to show me. Finally, he hold an art toy up. I say brightly "wow! that's a good one, you can paint in all the colours and make good marks. its a lot of fun!" and he brightens, nodding minutely, still uncertain if he is allowed to react or allowed to be himself yet. His face turns to his caregiver, who has a smile plastered on their face so forced and frustrated, that I knew I had to make sure he didn't look at them. quickly I say, "Ohhh! I have a good idea of something good we can do!" his favourite word, good. so desperate to be good. if I'm saying its good, then it has to be good. "We can do the art together if you want to! It’s safe to do our art in the playroom right now” I say, making sure to empathise that we would do it together, so he knows that no rejection would come from me, if he does this demand. His face is brightening, and slowly he is nodding, without even needing to be asked, he is reaching for his other art toy, and his paper. Holding it up to the camera for me, no longer as hesitant. Finally, he is beginning to feel safe again. I look from his screen to his mum, and she is choking back tears. Her son doesn’t usually interact like this but also, he doesn’t usually escape the spiral of rejection sensitivity dysphoria before he reaches a meltdown or shutdown. "This one do art" he says, and I smile and say "wonderful! where shall we put the first mark? show me" and within a minute we were happy and laughing mark making with his art toys, via a camera, in the playroom and he is back to his usual self.
The only thing that happened to cause this severe reaction of emotional distress, was a slight change in his carers tone. That was enough for his anxiety and RSD to spiral and cause a huge shutdown. If the shutdown was met with more injustice or actual rejection a meltdown would surge. But today, there was none of that, because when they needed help, they rang me. I hang up from the phone with an endless to do list, and in so much pain and dizziness and yet… I was happy, beaming at the progress we had made together because he was finally with someone who understood him.
In this scenario - what would have been the best way to react to *Jacks behaviour? His vocal screams of "no!"?, his incompliance? his cries? his meltdown? his fear? his needs? and what would have made things worse? Would it have been better to ignore him? To tell him off for refusing his routine? to get frustrated and reject him further? The problem is that, in a child so young, rejection sensitivity is so misunderstood, that most people would assume this was manipulation or demand avoidance or simply a tantrum, when in reality, they could help the child so much more if they seek to understand the root of the behaviour and the communication.
We should never forget how helpful it is to have a support network but also, just how much helping others can make you forget your own symptoms.
Progress is different for us than it is for non disabled healthy neurotypical people. Other people wouldn’t think a child not screaming or just saying basic words was an achievement, but for us in the know, it’s a major achievement. Progress that he could consent and communicate and also feel emotionally safe. Other people may have just seen child screaming and assume they had issues relating to personality disorders or behavioural issues or even worse that it was discipline and someone’s fault. He doesn’t. He has autism infused RSD. He literally just needs to feel emotionally safe and those behaviours melt away.
Not all behaviours are obvious. We should always seek the root of behaviours to work out how to help. Rejection sensitivity is so common in Autistic children and then we turn into autistic adults who mask against our better judgement to people please and fawn and put ourselves in direct danger during our trauma defence modes because we have not been taught to listen to our own safety warning, bending our consent to do what other people sit fit all the time. RSD is common in Autistic people and studies show that an autistic or adhd child will receive 30% more negative feedback and rejections every day compared to neurotypical counterparts. When you combine that with shutdowns and not being able to read context clues, body language or communication issues, it’s a recipe for rejection infused disaster.
Today’s case study and story time, is made up, but based on many children, I have worked with before in my 20 years experience of being a 121 for autistic, chronically ill, disabled or traumatised children. This story and this character, *Jack is a mix of hundreds of children and their experiences that often matches, the over all theme - todays theme is Rejection sensitivity - and so the story and case study reflects the experiences and showcase of many children I have volunteered and worked with, for empowering educational purposes. From this description, can you see the RSD, that his 121 carers, can clearly see?
Jack is 44 months old, and has a dual placement. A busy loud big nursery 2 days a week for a full day, and a small 121 childminder with only 5 other children, 2 days a week, for a full day.
Upon arriving into the child minding setting he is noticeably hyper vigilant to avoid rejection - people pleasing in an extreme manner-only touching things an adult has touched. Only playing with a toy an adult interacted with. Only playing in the same way as the adult. Only talking when an adult spoke and mirroring their words. All his life, professionals have said that he just doesn't know how to play, but its much more than that.
This rigid 'play' mirroring adults, for an entire hour, as he processes what is safe and what he’s allowed to do and observes the adults intently to work out what we want for him to be good. This takes an hour before he starts to process the transition of home to setting, and actually start being more himself.
However, in that hour, another child attempts to climb on a toy. “Get down you’ll hurt yourself if you climb on the toy and we don’t want the toy to break because we can’t play with a broken toy!” Our tone is serious at first to get their attention and then it goes into playfulness so they can bounce back with a cheeky smile and move on to never do it again.
Not Jack though. He’s on the other side of the room and yet he has frozen. Sat still as if too scared to even breath or move a muscle. For minutes, if left unattended he would sit there not moving. I sit next to him and put my hand into his line of focus, not so close to him that it represents a communication demand, but close enough that he can see my hand (his 121) playing gently with a toy he was interested in on prior days. “You have been very good Jack, I like how you always try to be good. You can play with any of the toys if you want” he ignores me, too shutdown and overwhelmed from the potential rejection that he can’t process anything else other than his fight flight freeze defence mode.
He’s in active freeze mode. He can’t hear or see me right now. So I make his senses know that he is safe. Motions neutral I make my hands go into butterflies, something I often do to distract children and make them feel emotionally regulated. I’m quietly sitting there a meter away rolling cars towards him and fluttering my hands into butterflies smiling and being my usual calm self.
It’s so important to maintain your usual energy when they anticipate rejection, even when you have disciplined them they need to know you’re safe again. No one learns how to be safe if they’re learning through adrenaline so they have to see you behaving in your usual normal safe way fro them to learn from the discipline or realise they were not rejected.
Eventually he processes me and sees my happy face and calm quiet words. I talk to my self “flutter flutter up high! Flutter flutter down low!” Repeating myself. Eventually he joins in. “Futter up high! Futter up down low!” He copied and then he smiles at me hesitantly and I smile back. Again, he is mirroring, in an effort to be good, because he is still people pelasing to avouid being rejected.
I move the butterfly to do something different to see if he felt safe yet to transition to new thought structures and connections - or maybe even - spontaneous, mirror free play. I make my hands land on a toy tree he likes to play with “flutter on top of the tree” “flutter under the tree!” Flutter around the tree!”
Pretty soon he’s not just copying for safety and to avoid rejection, but he’s now finding new and mirror free spontaneous ways to flutter “futter on the train! Futter on the car!” “Futter to the house!” Even when I have not specified (in his eyes) that it is safe to do so. He is usually so vigilant and doing exactly what an adult does- not a finger or toy or theme or movement or word out of place. But this? This was all him beginning to shine…and it was wondrous to see. he was beginning to feel safe, from here, he can progress.
I smile as he smiles and engages and feels safe enough to break free from the rejection sensitivity hyper vigilance of people pleasing and actually feel safe to do something different to what an adult explicitly said or showed him he could do. To anyone else, it would be unnoticeable that he didn’t need showing that this was a safe activity or words to say or do.
He felt safe enough to do it even in the aftermath of rejection and transition because he was validated and understood - and importantly the role modelling of parallel play allowed him to regulate and understand that he is not in wrong because adult is also playing and doing what he’s doing, and the adult behaves and communicates to avoid further injustice. An injustice would be “for goodness sake just play!” Or “play with something” or "say Flutter, not futter" (there's a time and a place for corrections) or “jack you’re not in trouble!” (Saying the word trouble or naughty becomes the only words he processes and so he thinks he IS naughty and in trouble).
A further injustice could be creating a demand to distract him “Jack do this thing!” Or approaching on his space “Jack, Come here!” Or getting too close to him. Or reusing your voice. Or not being gentle enough with his teddy bear who he’s loved so much like a real person and it makes him sad that you’d hurt his teddy bear by throwing it carelessly to the floor or fling it over to him. Any fast or dramatic movements or waving of arms or unusual facial expressions that can be misunderstood. So many hidden injustices that are so hard to avoid when you don’t know what those injustices mean or what they are. So many carers labelled him a hopeless child who had never ending meltdowns.
He was never hopeless. They were.
When it comes to rejection and sensitivity and fawning people pleasing with hyper vigilance and fear, his adrenaline takes over and he freezes, shutting him down entirely so that anything else unjustified or new or unexpected or rejection like creates a meltdown.
He is so scared of rejection that he anticipates it even when it’s not certain. In that aftermath of rejection perception. not only is he still, he won’t play unless role modelled it’s safe to. His play takes 10 minutes to get back to how it was before.
After the first hour of transition from home to the childminding setting. He opens up. He starts playing freely and exploring at will. Still ever vigilant and watching for rejection, still playing with only things he knows he’s allowed to play with, but more flexible and capable now. He’s communicating freely and laughing and giggling
. The shutdown aftermath of overwhelm after the transition from home to child care setting has ended and now he can recover in a a safe place, and recover, he does. On those next few hours he progresses in ways unseen in his other setting. He communicates well, can take correction, happy to follow demands and routines, and is confident to try, flourishing in a way that works for him. Then an hour before transitioning home he’s shutting down.
He’s anticipating the rejection all over again. Knowing that he will be shutdown and meltdown and naughty and his mum will worry and be stressed and use irregular tones where he can’t ascertain what to do to feel safe through the emotional dysregulation. The next day he goes to his nursery, he’s withdrawn and emotional, unable to speak, meltdown, shutdown, not making connections he usually can, not able to do things he usually can, more clumsy, wetting himself and demand avoidant; a far cry from the happy and capable (but still disabled) child he was with us in our setting.
The days after nursery are spent recovery. Two hours in the morning recovery from the transition of nursery and home when he’s been at nursery the day before.
What does this child need? what options from below do you think would most help this child?
A) Support in a bigger setting like the nursery to get used to a mainstream school he will start next year
B) Being held back from school a year and training him up at his own pace at the childminders, to attend a special needs school with a SENCO and reasonable adjustments. Seeking an autism diagnosis too
C) seek an autism diagnosis
D) seek a medical diagnosis for personality disorders
E)tell social services you fear for the child’s safety and get CAHMS involved as early as possible.
F) continue dual placement but talk with the nursery SENCO about reasonable adjustments
G) for people to think ‘There’s nothing wrong with him. He’s just another kids who meltdowns to get attention. Ignore all traits and. Tick the box that says behaviour but not establish what or why or how to learn how to help him’.
H) try to prove the parents are at fault and are naïve for wanting to give him transitional care - double down hard on routine and demands because, in the real world, he has to learn.
Ultimately, we should make him feel safe, at all costs so he can best learn and progress at a rate that works for him…but what does that look like? Do you relate? What’s your story? Lets chat! peace x