Can you tell the Tantrum & Autistic Meltdown apart?
Yes. You CAN.
It took experience (years, many years of experience – and even today, 15 years after I fell in love with Psychiatry and nearly two decades after becoming a mother myself for the very first time, I am still learning!) PLUS a little practice. Experience as
- a trainee paediatrician and
- as an Autistic parent with 2 lovely kids on the Autism Spectrum, and
- as a Psychiatrist, learning the theory of understanding people by night and trying to learn the practical aspects of the art by day.
At first, my ability to differentiate between the two behavioural states emerged on the level of “I know it in my guts”.
Time went on, I practised more and learnt more still. If I were to help my patients and their families, I had no option but to move on from “I can’t explain it, but I know it when I see it” level of knowledge (this was Justice Stewart’s definition of “hard-core pornography”, in the infamous Jacobellis v. Ohio case: the case which almost entirely rested on this legal definition!)
So, little by little, a blurry distinction between the two phenomena started becoming sharper in my mind.
Iteration made it clearer still.
And I believe, now I am finally at the stage where I can usefully share it with you.
Some people ask me why I bother speaking and writing about it. Usually, these turn out to be Healthcare Professionals.
You see, if you work in this area, there are only two options: either you are a HCP OR you have a personal link to ASC. Few choose to work with Autistic people or with Autism without one of these motives.
Autism just isn’t sexy. Autism is weird & confusing for an outsider. Autistic people are difficult to understand, as far as the NT majority has decided. Therefore, there’s no effort invested into understanding the condition unless YOUR life is directly affected by it.
We are not that hard to understand, really, but breaking the Rain Man or the Martian stereotype is like swimming upstream: hard, exhausting & consuming you entirely. We need to get active anti-Martian/antiRainman campaign going, and run it nonstop, for at least a decade, to hope that today’s schoolchildren grow up to be naturally autism-aware, without the unnatural need to either deify the condition or dehumanise those whose lives are affected by it.)
So, the reason I believe it’s important to differentiate between the two:
They should be managed in very, VERY different ways.
One is beyond the child’s control, and the other is a millennia old way that children use to manipulate their parents.
Managing a tantrum the way you should manage a meltdown will tell the child they have a highly trainable parent.
My heart is aching each time I read a post about abusive children in an online community for parents of autistic children. Children who bite and bruise their parents, simply to get their way.
A parent who, they have discovered, they can abuse in thousands of different ways because the parent believes it is a meltdown. Therefore, the parent reasons, it is just how things are with autistic children. That their experience is just “how things are and were meant to be” because their child is autistic. Beaten & abused by their children is a part of the “Autism Cross”, the parent has to carry.
That is disturbing enough on its own. But the replies is what really hits me emotionally. Because there’s usually a couple of hundreds of replies, each full of love, sympathy…and their own abusive child story, reaffirming the Autistic Child = Physically Abusive Child narrative..
I stopped commenting on those posts. My “But are you sure it was really a meltdown?” question at best gets buried in the pile of sympathy that is lavished onto the poor parent.
At worst, I receive a really defensive, occasionally outright rude responses. So, these days, when I see such a post, I quickly scroll by. But that doesn’t solve anything. It does nothing to help the abused parents. So, I decided to post my tips here. I hope some parents will read this when they are not overcome with emotion. When they are in the thinking place. And I hope it will get them thinking, whilst not feeling judged, or even worse: attacked…
What is Temper Tantrum?
Terrible twos… What kind of a cruel joke was it: naming the tantrums after the age when you are being told to expect the tantrums? It is misleadingly precise and lulls you into the false sense of security. Somehow, you grow attached to the idea that the nightmarish behaviour of your child, testing your parental skills and parental love to the limit, would be restricted to ONE year: between your baby’s 2nd & 3rd birthdays…I had my oldest the year I turned 23. I had the MD by then, but almost no experience with kids. It was a harsh revelation for both of us – my husband & myself – that “terrible twos” can begin during the first year of the child’s life. Our tragicomic naivete led us to believe that having started “early”, they would disappear early, too!!! We were incredibly lucky with our DS, though. He was fairly “chill” as far as tantrums go. Looking back, I realise what outbursts he did have were, most likely, not tantrums but “proper” autistic meltdowns. We knew NOTHING!
A temper tantrum is an essentially manipulative behaviour with a well-defined goal:
1) to obtain something desirable; OR
2) to avoid something undesirable.
How are we to understand the experience of a person in the eye of the emotional hurricane we call “a temper tantrum”? Please note: I am using the word “Person”, not “Child”. That is intentional, and actually very important. Some people in adult bodies really struggle to overcome the development hurdle that allows us to verbalise our desires whilst controlling our emotional impulses. The milestone that, if mastered, allows us to talk about our wants & needs with another person, enabling the development of the advanced skills of negotiation, which could lead to the more advanced yet skill of compromise.
The presentation of tantrum may & will differ between a five-year-old and twenty-five-year-old, but the driving principles & the schema is the same. A child may throw himself on the floor and scream, “I hate you!” because he was denied ice-cream; an adult locks herself in the bathroom and screams, “I hate you!” because her partner walked out.
One thing is important to point out: the manipulation may be conscious OR unconscious. In fact, the younger the person’s emotional age is, the more likely it is to be UNconscious. With time, however, one learns that if they persevere long enough, the other person (the parent or the partner) will get tired, give up and give in. This is WHY it is absolutely essential to develop a plan on handling a temper tantrum in advance and then stick to it.
- identify a personal temper tantrum,
- plan an effective strategy for dealing with it,
- agree that strategy with all involved parties and then
- STICK TO IT!
What is Autistic Meltdown?
In contrast to the temper tantrum, the Autistic Meltdown or Shutdown IS NOT used with a purpose to gain something, whether it is a desired object, attention or perhaps an opportunity to engage in the favourite activity or avoid the unfavoured one.
Autistic Meltdown is the sign the autistic person is overwhelmed. Some are led to believe that it is the sensory overwhelm that is the only cause of the meltdowns. In my opinion, this over-simplifies the issue greatly.
Sure, the sensory disintegration is probably the most significant issue affecting our Quality of Life (QoL). Every autistic memoir would tell you that. As well as the modern textbooks and parental accounts of autism. This fact is not even debatable.
I want to share with you one of the most impressive, most haunting, most eloquent descriptions of a sensory meltdown has been written by Donna Williams in her memoir of autism (which is one of the best books by an autistic author I have ever read):
…Entering the infant room, I saw a girl about four years old curled up in the dark interior of a crate. Her eyes were sharply crossed, her fists clenched into balls. The staff had been advised that in the safety of her self-controlled isolation, she might begin to explore her surroundings. Hung inside the crate were various mobiles and objects.
The two supervising staff were excited by the novelty of their ideas and the equipment for the little girl. Like overenthusiastic relatives on the first meeting with a newborn child, they were half in the tiny crate with her. I stood there feeling ill as they bombarded her personal space with their bodies, their breath, their smells, their laughter, their movement, and their noise. Almost maniacally they shook rattles and jiggled things in front of the girl as if they were a pair of overzealous witch doctors hoping to break the evil spell of autism. Their interpretation of the advice seemed to be to overdose her on experiences that they, in their infinite the world’ wisdom, would bring to head. I got the feeling that if they could have used a tire jack to pry open her soul and pour ‘the world’ in they would have done so and would never have noticed that their patient had died on the operating table. The little girl screamed and rocked, her arms up against her ears to keep their noise out and her eyes closed to block out the bombardment of visual noise. I watched these people and wished they knew what sensory hell was. I was watching a torture where the victim had no ability to fight back in any comprehensible language. I stood almost numb with shock. She had no words to put to what was happening, to analyze or adjust to it as they did. As far as introducing her to a safe, peaceful, consistent and controllable place in the world,’ it looked like a shattering first impression. It was medieval. These people had been told to use something that might work but no one had told them why or how. No one had given them the set-up instructions or rule book. They were surgeons operating with garden tools and no anaesthetic.Donna Williams, Somebody Somewhere
So, what exactly is the relationship between the outside world and its effects on the person?
Isn’t meltdown simply a type of tantrum among autistics?
Is there something we can do to prevent the meltdown? To make it shorter, or less violent, once it has begun?
1- It’s complicated. ____ 2- NO! ____3 – Yes and no. Read on to find out.
The meltdown isn’t a Skinnerian or even a Pavlovian response to the stimulus.
You don’t blow up in a meltdown the very moment the stimulus comes on.
Autistic Meltdown is a process, building up over a period of time. Altering any parameter of this process will affect the timing and the intensity of the meltdown. For instance, a sound of high strength and high frequency (i.e., loud and shrill) will need a short period of time to provoke a meltdown. The low strength low-frequency sound (i.e., a quiet bariton) may not only fail to produce a meltdown – it may actually have a calming effect on the person.
Not only that, but the effect of the same sensory stimulus on the same person can be drastically different at different times.
This, unfortunately, has resulted in people with no experience accusing autistic people of lying, exaggerating, or “acting weird” for some bizarre reason. Once again, with temper tantrums and ASC meltdowns being conflated, the end result was that for a long time in the history of the Western world, Autistic Meltdowns were treated as Temper Tantrums, traumatising a generation of autistic people.
The real reason is this: many other factors are at play.
Hunger. Fatigue. And, importantly, the level of stress the person was experiencing before the assault on their senses.
In other words, the one of the most common reasons for the meltdown is being overwhelmed. Overwhelmed by senses, by cognitive demands, by emotions… The list goes on.
It is important to be aware of these factors, because they help you to predict when the NATP is at higher risk of going into meltdown.
Once meltdown has kicked off, there is absolutely nothing anyone can do to stop it. Least of all, the autistic person.
The build-up period is the golden time. /-/-/ It may last seconds, minutes or hours. /-/-/ It is effectively the only window where a calm distraction may be welcomed AND some rest in a quiet, dark space may avert a meltdown.
Learn The Tell Sign
We often have a “tell”. The tell is the sign of the impending meltdown. Close family members & carers knowing the autistic person well usually know what the person’s tell is; even if only subconsciously. One adult autistic I know has a muscle twitch of his cheek, just below the eye. His mother knows she has no more than 10-20 seconds to intervene before “all hell breaks loose”. One of my children -who is ordinarily HYPER-Hyper-hyperlexic – it is literally impossible to get them stop talking, unless you get their buy-in – would turn frozen in an “arms crossed, legs squeezed, stare down, fists curled” posture, and keeps silent. (Even simply writing about it has nearly caused a mirror reaction in my own body just now). I know it’s best not to approach my treasure at that very moment (and for 30-60 min thereafter, giving her full freedom, punctuated only by safety concerns).
Because if anyone makes any – ANY – demand on them at that point; if they experience the smallest stimulus in the environment, we have IT. That stimulus may be unnoticeable to us; maybe even unnoticeable to the autistic person under regular circumstances. But the circumstances changed. The person is overstimulated. Like a neuron post-excitation, the autistic brain only needs a fraction of the normally required stimulus to start firing explosions of charge around it. A neuron excitation brings down the action potential threshold down for surrounding neurons. An overstimulated autistic brain is unable to digest or contain the chaos that assaults it through the sensory systems.
IT is the autistic meltdown. IT is NOT PRETTY. *** IT is a primal rage that temporarily turns off the prefrontal cortex (i.e., our self-control). *** Often, IT isn’t remembered by the person experiencing IT. *** IT may involve somewhat coordinated movements, or throwing things, or accidentally hitting you, or banging head, or rolling on the floor; we may be laughing hysterically – no, it’s not funny – it is unconscious! – or crying, and wailing, and cursing. We may repeat the same word or the same simple sentence (like, “This hurts”). *** We may be simply stimming, but with little conscious control of our body, we can hurt you while doing that. *** It is NO JOKE. ***
When IT happens, we are not ourselves. Our deep well of love for you and/or our gratitude to you are in our prefrontal cortex – cut off at that moment. So, please be careful.
FOR YOUR OWN SAFETY SAKE, STAY AWAY.
ENSURE THE AUTISTIC PERSON SAFETY AS MUCH AS YOU CAN AND STAY AWAY.
The overall level of stress, which I would frame here as the number & level of immediately preceding demands (social, cognitive, sensory, physical, emotional, etc) IS THE ONE PREDICTABLE RISK FACTOR for meltdowns.
Most common & easily predictable/observable stressors are:
High Emotional Arousal:
positive as well as negative emotions.
Being “Peopled Out”.
Intense bodily experiences: e.g., rollercoasters.
It is important to be aware of these factors because they
help you to predict when the autistic person is at the most vulnerable,
most likely to meltdown.
What should I do?
The common feeling for carers and parents is confusion: lacking personal experience with the meltdown makes it very hard to understand. Lack of understanding leads to worrying: am I doing the right thing? Hence, the question they often ask is this:
Q: WHAT SHOULD I DO DURING A MELTDOWN?
1 ENSURE MY SAFETY, IF POSSIBLE – make sure I am in the safer area of the space, place me in the recovery position, please make sure there are no objects within my reach that I could accidentally hurt myself with. Unintentionally. If you see a person – whether autistic or not – brandishing a knife & THREATENING to hurt themselves, unless you do exactly what they want you to do, that is NOT a meltdown. That is a clear & plain temper tantrum/emotional blackmail. Autistics can have tantrums, too.
2 Please, REDUCE or ELIMINATE ALL SENSORY SIGNALS: MUSIC, TV, LIGHTS, ETC. I react specifically to fluorescent lights and to rapidly changing succession of colours or coloured lights. I react to the very bright lights and very bright colours, particularly when they change rapidly: IN TIME (think disco) OR SPACE (e.g.,small square tiles, alternating white & black colours)
Minimum stimulation, please, unless we request otherwise.
- DO NOT ask ANY questions,
- DO NOT SAY anything,
- DO NOT TOUCH, HUG OR CUDDLE ME – UNLESS YOU KNOW TOUCH & DEEP PRESSURE IS CALMING FOR ME
- DO NOT turn on LIGHTS, MUSIC or TV. THESE ADD TO MY SENSORY OVERWHELM .
- Just leave me alone. – I AM NOT BEING RUDE. NOT BEING A “HERO”.
- EVEN IF YOU ARE THE LOVE OF MY LIFE, RIGHT NOW I MUST BE ALONE.
- I MUST BE ALONE, BECAUSE I LOVE YOU, AND I DON’T WANT TO BE MAD AT YOU & HURT YOU.
- PLEASE UNDERSTAND – IN MELTDOWN, MY THINKING BRAIN ISN’T WORKING WELL. I RUN ON THE IMPULSES FROM AMYGDALA, WHICH MAKES ME FEEL LIKE THE WORLD IS CLOSING DOWN ON ME; CHAOTIC , EXPLODING WITH LIGHTS & SOUNDS.
A meltdown lasts minutes, usually, but may last much longer.
Seldom, it may lead to catatonia (a post on catatonia is coming).
I hope this has given you, my reader, some food for thought. This post turned out waaaay too long, so I have decided to split it into 2 parts.
But I want to leave you with another quote.
Let’s turn again to Donna Williams. She describes how she would cope with an impending meltdown as a child:
...Fabrics dangled in front of me in my dark cupboard, the security of my chosen darkness. Here the bombardment of bright light and harsh colours, of movement and blah-blah, of unpredictable noise and the uncontrollable touch of others were all gone. Here was a world of guarantees where things were controlled for long enough that I could calm down and have a thought or become aware of a feeling I reached out to touch the fabric in front of me. I ran my hand over the silky surface of the patent leather shoes at my feet. I picked them up and ran them across my cheek. Here, there was no final straw to send me from overload into the endless void of the shutdown.Donna Williams, Somebody Somewhere
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