by Nanny Aut
TW: overwhelms, meltdowns, self-harm, suicide ideation
Up to now in this series, we have been looking at the differences in autistic neurology and how, if those differences aren’t recognised and accommodated for, they can cause stress on the nervous system. And if these stressors build up they can cause overloads, overwhelms and meltdowns.
Overwhelms and meltdowns are often assumed to be a natural part of autistic neurology – tantrums, short temper, aggressive behaviour, overly emotional, shouting and screaming. I don’t recommend that you go onto Autism MomsTM sites – it is heartbreaking to see the trauma caused by loving, well-meaning but ill-informed parents. However, if you do, you will see videos of meltdowns posted regularly to elicit sympathy for the plight of the parent – ‘Autism won today’. No – ‘Ignorance and poor information won today’. Failure to understand and meet your child’s needs caused this – not autism. Addressing ‘behaviours’ instead of the underlying causes caused this – not autism.
Autistics do not naturally have meltdowns just because they ae autistic – any more than the general population naturally have meltdowns.
Meltdowns are a HIGH STRESS RESPONSE. Anyone under that level of stress experiences this response. This high stress response is caused by an overload – either sensory, emotional, processing or a combination.
For most NTs beyond toddler age, there are numerous ‘safety’ systems put into place that prevent this overload occurring outside of extraordinary circumstances, such as filters reducing input, emotion dampening, sensory signals remaining naturally around the centre etc. And so, after the toddler stage you are unlikely to see these high stress responses in NTs unless in obviously severe stress situations.
Autistics, however, do not have these ‘safety’ systems, which makes us highly vulnerable to stressors.
NTs do not adapt their environment to reduce stressors because their ‘safety’ systems mean they don’t need to. However, this means that for autistics, who are vulnerable to these stressors, living in an NT environment can cause a permanently high level of stress before any extra stressors are added on top. Such as the extra stressors that come from processing differences, sensory imbalance, masking and bullying.
Previous posts (see box below) have looked at these stressors and ways to address them. In an ideal world, this would mean that overwhelms and meltdowns would never happen for autistics. However, we have a long way to go before acceptance and accommodation has reached a point that these stressors can be eliminated entirely – school environments can be particularly toxic in this respect. And until we genuinely reach a place of equality, acceptance and accommodation – stress, anxiety, overwhelms and meltdowns are still likely to occur, although with less frequency and intensity.
So, we need to understand what’s going on. What factors make it worse. What factors help. What after-care is needed.
- Welcome to the Control Room – Meet Dino Brain and Panic Monkey
- Making Sense of the Senses – Part 1 – The Big Five – Sight, Sound, Smell, Touch and Taste
- Making Sense of the Senses – Part 2 – The Secret Agents of Interoception and Proprioception
- The Communication Barrier – When Cultures Collide
- Dino Brain and Panic Monkey vs the Air Traffic Controller – The importance of feeling safe
- Dam, Fork n’ Spoons – Managing the Autistic Energy Supply
- The Other Side of the Mirror – Explaining Autistic Emotions
The most common misconception is calling overwhelms and meltdowns “tantrums”, and assuming it is a deliberate behaviour under the control of the child. The myth of tantrums stems from the disproved school of behaviourism that promoted the false belief that children are able to self-regulate emotionally and that “tantrums” are a performance intended to manipulate the parent – the expression of need is reframed as a battle – don’t give in and let the child ‘win’. This isn’t true. What is happening is a panicking child – who has an overwhelming need and a Dino Brain believing that if this need isn’t met the child is in serious danger.
Quite aside from the fact that parents should be honouring a child’s needs without being ‘manipulated’, it completely misunderstands children’s emotional development. Or the processing that goes on when a child is told ‘No’ and their need is denied.
Imagine a train on a secure track. All the stations are known ahead. Each station is a pre-planned point of safety. Then, all of a sudden, someone drops a log across the track – says no. Now not only can you not safely reach the next station, but a crash is imminent. Anxiety goes through the roof as you try to get the log removed before you crash.
Other routes may be offered but you don’t know if they are safe or if they will get you to the station you need to reach and your processing goes through the roof trying to evaluate the possibilities.
In addition, you are trying to figure out other ways that you can persuade the other person to remove the log and restore the safe route. Processing increases again. As does anxiety. Overload is happening.
If a new safe route is established, or the log is removed by switching to ‘Yes’, and it is done before the crash, then the journey can resume smoothly. Overwhelm and meltdown are averted.
If not, the train is derailed and you are dealing with the flaming wreckage of a meltdown.
When you understand that saying ‘No’ is blocking a need, not a want then you can start re-framing the conversation. You can start looking for the need behind the expressed ‘want’. For instance, before meals, energy starts getting low, so an instant energy boost is looked for. Sugar is the most obvious quick source of energy, so the child demands a cookie. The energy boost is the need, the cookie is one potential solution. As a parent, you know that the cookie won’t actually meet that need, it will simply create a boom and bust energy spike. They need something to give a steadier energy burn.
However, the time to offer a better ‘track’ is not at the point of demand. It is too late by then. By then, the brain is locked on to this solution and doesn’t have the time or processing in the moment to evaluate alternatives as ‘safe’ or not.
Most ‘No’s can be predicted by the adult, ahead of time, by identifying patterns of behaviour. This means safe routes can also be established ahead of time, before processing goes through the roof. Using the cookie example – When it is calm, take time to sit down and explain that cookies aren’t very healthy and so you need to pick a healthy snack they can have instead before dinner. Work with them to pick another choice – cheese, fruit, carrot sticks etc. Now they have a new track their brain knows is safe and will get them to the station. They have had time ahead of the event to evaluate it. In the moment, they should now be able to switch tracks more easily.
The same goes for switching plans at the last minute. You are forcing us to switch tracks from a safe, predictable route to one that we aren’t certain is safe. Giving us ample warning that plans may change and time to evaluate the other potential routes that may be used, allows us to switch tracks smoothly without Dino Brain panicking about an imminent crash.
Building safe tracks ahead of time also applies to regulation. It is no good asking someone in the middle of an overwhelm what will help them calm down. We don’t have the processing at that point. Creating and agreeing a regulation routine ahead of time, means a support person can act as a guide and all the person who is overloaded has to do, is follow.
These things help enormously, but life isn’t perfect, and we can’t always avoid the stressors or avoid the unforeseen or unpredictable. So what happens if we do get overloaded? When things deteriorate from overload to overwhelm to meltdown?
In previous articles (see above), we have talked about the Air-Traffic Controller with their forty or so screens of input information to manage, along with balancing the senses and running the algorithms to make decisions. And the Panic Monkey keeping an eye out for threat, ready to release Dino Brain to take charge in an emergency.
On a good day, despite the workload, the Air-Traffic Controller keeps things running smoothly, reassuring Panic Monkey that all is well. Dino Brain sleeps in the corner.
Then extra stressors come in – something that challenges the sensory profile or an unlabelled sensory alarm from a low sense. Or processing demand increases – more input – forty screens to eighty, a new route that needs evaluating, new decisions. Now the Air-Traffic Controller has more than they can cope with. They don’t have time to keep calming Panic Monkey down, or even to keep a proper eye on what Panic Monkey is doing.
I am aware that I am anxious but not why. My ability to process new information starts to drop. I don’t tend to acknowledge this red flag. I still think I am OK and can work through this.
As the load increases, Panic Monkey, who is no longer being calmed, becomes agitated. They start playing with the controls that the Air-Traffic Controller is trying to manage. They push sensory levels way up and way down, they play with the volume controls on the monitors so input from miles away feels really close and input that is close can fade into the background. The Air-Traffic Controller is really struggling now, trying to re-set controls, trying to identify important input from the adjusted monitors, and trying to catch Panic Monkey who is bouncing around the Control Room at speed.
At this stage, my focus is often in the wrong direction. Rather than noticing the flashing red light of the impending overwhelm, I am focusing on trying to maintain control of my processing, trying to complete the processing I am working on and trying to keep things on track. So rather than exiting the overloading situation and trying to calm Panic Monkey, I stay and keep trying to carry on – trying to work through the developing chaos. I may start self-harming – pain stimming – to give a focal point to anchor myself in the developing chaos.
I may not notice my increasing anxiety, the feeling of panic, the flush and increasing heart rate. I will notice that it is becoming harder to think and focus – but will try to fix it, not recognise it as a warning sign.
If I do notice the warning signs in the overload stage, I can easily get clear and it will take about ten minutes or so to regulate and calm down. I won’t necessarily have the words to express this and if I need to ‘Use my words’ to get clear then I am likely to hit overwhelm. Speech switches from power-steering to manual and the high processing motor skills needed to generate spoken words is guaranteed to push me over. I have now learnt that this ‘switch to manual’ is the signal that I need to become non-speaking and switch to text to communicate.
If I don’t get clear and regulate at this point, then the next stage is overwhelm.
Now Panic Monkey has woken Dino Brain, who begins crashing round the Control Room in a panic. The Air-Traffic Controller is still in the room trying to prevent Dino Brain taking over. Now, in addition to Panic Monkey messing with the controls and with the monitors, Dino brain is crashing through, smashing things up, trying to take over, trying to activate the protective mechanisms – fight, flight, fawn, freeze, flop – or in my case, wailing snot monster. Somewhere, when I was small, my tears activated a protective response in those around me, so Dino Brain sees it as an effective fawn mechanism – even though it hasn’t worked in decades. Dino Brain is not smart.
At the start of overwhelm, I become anxious and tearful, my heart rate increases significantly, my breathing becomes more shallow. My thoughts are now scattering. As are my words and scripts. The more I progress into overwhelm, the more communication shuts down entirely. I will struggle to express the problem at this point, even by text – I need someone to help me exit to a safe space to be able to calm down. I have only partial control of what is going on, Dino Brain is trying to take over. If I can’t exit, if people keep pushing for answers, for words, for engagement, telling me to calm down, trapping me in this overload, everything starts to fly apart. Dino Brain takes over to help me break free. I am going to start shouting and pushing people away to get clear. I hear the hurtful words coming out of my mouth but it is all Dino Brain has available to get people to back up and give me the space I need. I need to escape to avoid the meltdown that is very, very close.
One way that I can delay the meltdown is by increasing the pain stim – self- harm – amplifying the focal point and strengthening the anchor to hold on to. It is very much not ideal and it is only temporary, but when you are desperate to buy time to get away before the meltdown hits, it can seem like the only option. I have learnt to switch the pain stim from head-banging or fingernails into my arms to less harmful methods over the years. Pinching the base of the thumb does not cause damage, but it does cause the pain I need to focus on.
If I can get clear and into a quiet space before the meltdown hits, I will, very slowly, be able to recover. First, I need to stop everything – zero input, zero engagement. Wrapping in a blanket or tucking myself into a corner, lowers the hypervigilance. Everything goes still. Panic Monkey, Dino Brian and the Air-Traffic Controller all go on pause. It is like hitting the reset button. Then I need to systematically regulate. First, settling down Dino Brain and putting them back to sleep. Pacing, rocking, clenching and unclenching my hands. Second, calming Panic Monkey and getting them settled – deep breathing and sighing out, stretching, shaking out the tension, jumping up and down. Finally, I can then start bringing order back to the Control Room – focusing on and reconnecting to my senses, beginning to line up my thoughts, re-connecting slowly to outside input, paying attention to the background sounds.
This can take upwards of an hour. If I try to rush it, then Dino Brain and Panic Monkey are still active in the Control Room and it will take only a tiny push to re-start the overwhelm again.
I will feel drained and exhausted after an overwhelm for at least a day.
Sometimes, I can’t get clear in time – either there is nowhere to exit to, people are crowding me trying to ‘fix’ the situation or the meltdown is already on its way as I get clear.
Now Dino Brain is large and in charge. The Air-Traffic Controller has retreated and is locked out of the Control Room. This is entirely Dino’s show now. Dino Brain floods the brain with adrenaline and noradrenaline to prime the body to respond quickly. It’s like electrodes being applied directly to the brain. Everything is experienced at extremely intense levels as hypervigilance is cranked to the max.
What happens from this point on is pure autonomic response. A protective reflex designed for our survival under severe threat. Dino Brain has five options to choose from – fight, flight, fawn, flop or freeze.
Fight – this is the aggressive response that many people falsely assume is part and parcel of being autistic. Dino Brain is trying to fight our way clear of the danger. Anyone who is in the threat zone will get attacked, in order to get them to retreat and give the space that we need. If there is nothing to attack, the adrenaline still needs to be released, for instance, by punching a pillow or a punching bag.
Flight – or bolting – the adrenaline is used to run away from the threat. Trying to restrain is going to increase efforts to escape and the sense of being trapped in the danger zone. Having a safe place to bolt to gives Dino Brain a protective route to follow.
Fawn – excessive people pleasing / wailing snot monster. We are trying to placate our protector and encourage them to act as a defence on our behalf. We need someone near who is calm and reassuring and will protect us from the danger. Deep pressure hugs can sometimes give strong feedback of security from the protector.
Flop – we become passive. We entirely hand over control of our protection to the person who is with us. We don’t seek to engage or interact, we just let them take over and do what they ask, whether it is harmful or not. Dino Brain has decided that any resistance or engagement is the more harmful route.
Freeze – catatonia – playing possum. Dino Brain paralyses us, so that we play dead, in the hopes that the threat will lose interest and go away.
These protective mechanisms do not need a meltdown to be triggered. It is the perception of extreme danger that is the trigger. Meltdowns are just one way to create this perception.
For me, Dino Brain stopped picking fight a very long time ago. I was maybe seven. I had been surrounded by bullies in the playground and they wouldn’t stop chanting and cat-calling. Every time I tried to break free I was pushed back to the middle. I was more and more scared, more and more confused and more and more angry. Then one girl upped the ante and starting shouting names in my face and when I tried to break away, two other girls held me still. Everything became a blur of confusion and panic, then, like a switch, Dino Brain took over and took charge. I could only watch as my body charged this girl and started pounding on her. It took two teachers to pull me off. I didn’t want to do it and hated myself for losing control like that. It also terrified me that I lost control. So much so that Dino Brain took that option completely off the table from that point on.
Great, because I don’t have to fear the consequences of fight in a meltdown. Not great, because I don’t have a fight response in a conflict situation, so I am unable to defend myself adequately. I will always default to fawn, which is usually a completely useless protective response when someone is attacking you.
Dino Brain never used flight for me. As someone who is dyspraxic – running away was never going to be a practical option. I was going to get caught and eaten before I had got five paces. Plus, as a child I had nowhere in the house I could consider a safe cubbyhole to run to. My bedroom, which could have been a safe space, was instead somewhere I was sent to when I was ‘bad’, so it only had negative associations.
For me, Dino Brain’s protection of choice is fawn. This means that in addition to the overload of adrenaline and noradrenaline, I am flooded with a range of other emotional chemicals, in order to increase my presentation of distress. My wailing snot monster can be seen from space because the emotional volume is turned so high. It feels like a thunderstorm of multiple emotions blasting through my head. Everything is screaming and chaos. And I am locked out, watching my body do whatever it feels like and unable to stop it. It is terrifying and overwhelming and it hurts beyond the expression of pain.
As a child, Dino Brain often used flop. My emotions were making those around me angry and upset, so Dino Brain would switch tactics and disconnect. I dissociated. I followed instructions when they were given, waited patiently for instructions when they weren’t. I felt nothing at all, an empty shell. This led me into some very dangerous situations in my teens and early adulthood during abusive relationships. Luckily, over time, Dino Brain decided that flop was no longer an effective protection.
Freeze is an odd one for me, because I can choose to pick this early before the meltdown, if I am somewhere safe and alone. Flick the switch and disconnect entirely. I am aware but at a distance, like watching what is going on from inside a Perspex box. I am paralysed but with great effort, like trying to work a giant rusty machine, I can manage minimal movements like a slow tip of the head or a blink. With enormous effort, I can even get sounds like a groan out. Whether I choose to flick the switch or Dino Brain does, I have no control as to when the switch flicks back on. That is entirely dependent on Dino Brain feeling safe enough to resume full function. I have only experienced Freeze twice in a meltdown situation, where the Freeze was not my choice. And it was terrifying both times. Instead of retreating safely to the protective Perspex box, you are forcibly shoved inside and locked in. And the emotional storm is locked in there with you – without a physical outlet.
Whichever route Dino brain takes, nothing is stopping that meltdown.
If we imagine a train losing its brakes as an overload, you can apply secondary brakes or divert the train to a siding and still stop safely.
At overwhelm, that train is now picking up speed. It is going to require the help of a buffer train to slow it down safely now.
A meltdown is the burning wreckage of the crashed train – nothing is recovering that. You just have to wait for the fires to die down by themselves. And how long it takes to die down depends very much on how much fuel was added to the situation before the crash.
It takes a long time to recover from a meltdown. The Control Room is nothing but a burning pile of wreckage. The energy reservoir has a giant whole blasted in it. A meltdown hangover can last up to three days, and only rest and regulating activities are going to help in the recovery.
This post-meltdown phase is also a major risk factor for autistic suicide. Even if there has been no suicide ideation before, the chemical overdose that Dino Brain flooded the brain with, combined with the remembered terror and pain of the meltdown, and the shame of losing control, can make a permanent exit look like a rational decision. And the Control Room is back online to help figure out how to achieve this.
Every effort should be made to keep demand as low as possible at this time, and to create as safe an environment as possible. Someone calm and reassuring should always be nearby post-meltdown. Once the chemicals have subsided, generally the ideation also disappears.
This is not the same as general suicide ideation, which is also common in autistics. If it doesn’t vanish within one or two days after a severe meltdown, it is not meltdown related and should be addressed as a mental health situation.
Too many times, you see parents asking how to increase or improve punishments for overwhelms and meltdowns, or how to create rewards to encourage the child to stop. They are incorrectly assuming this ‘bad behaviour’ is a choice that can be modified if sufficient aversives / encouragements are applied. Not understanding that they are making the situation worse by adding fear and shame and a deep sense of failure into the mix. We already know our behaviour in overwhelms and meltdowns is not ‘acceptable’ or ‘appropriate’. We hate the fact that Dino Brain has taken charge and there is nothing we can do to stop it. Feeling out of control is terrifying.
If you want meltdowns and overwhelms to reduce – stop the stressors. No autistic should have their nervous system so severely overloaded that they are experiencing meltdowns on a regular basis. If this is happening, this is a GIANT red flag that the environment is wrong and needs to be fixed.
When you recognise that an overwhelm or meltdown is not someone trying to cause distress, but instead is someone in serious distress, who needs help, the conversation changes. Now you can look at ways to help not punish.
Give us the tools to recognise when we are heading into overload. Teach us how to regulate when we are calm, so the routine becomes second nature as soon as we feel our anxiety rising. Teach us how to reduce processing demand, such as switching to texting at the start of an overload, or moving to a quiet, safe space. Talk with us about what helps us feel calm and safe, find out what we would find helpful in an overwhelm, and what we wouldn’t. Every autistic is different – hugs can be calming or make us feel trapped, giving us space can help us calm or make us feel abandoned, talking us through a pre-agreed routine can be anchoring or it can be overwhelming. Teach us to self-advocate for these routines so others around us are aware of what to do to help.
Teach us to identify our stressors and how to avoid them or advocate for accommodations. Teach us how to manage our energy profile so that we have the energy to keep processing running smoothly. Teach us about our sensory profile and how to boost the low senses and reduce the highs.
Teach us how to pre-build and evaluate alternative routes ahead of time so that we have safe routes to switch to if our preferred route is blocked.
Stop expecting our brains to work in an NT way – they don’t. Instead teach us how our brains work and how to work with our brains. Doing this should not only keep overwhelms and meltdowns to rare occurrences but also reduce our daily stress levels significantly. Allowing us to function properly instead of constantly fighting our way out from under a smothering blanket of anxiety.
This isn’t utopia or wishful thinking – these accommodations are already being used by many parents and adult autistics and they have seen the dramatic positive difference when they do. We just need to spread the word and make it the norm.