To most parents, the words tantrum and meltdown are interchangeable – a way to describe a frustrated and uncontrollable child – the name for those moments when strangers stare and you wish you could shrink into yourself. Every parent knows them.
To the parents of autistic children, and parents of children with sensory processing issues, those words will always mean very different things.
It is hard to make others understand. The difference between those two words is central to my life. I wish I could explain; I wish I could show you…
But a child in meltdown is confidential. I cannot show my gorgeous boy in full meltdown mode because it is, should be, taboo. It lays him bare, at his most vulnerable. He is pure emotion, pure anguish. There are no photos, no record of our bleakest times but these words.
There are those who will witness such moments; they will see. But they will not KNOW. No one, not even his grandparents, cousins, aunts, uncles – the hundreds of people who love him – they do not KNOW.
I can give you the definitions –
Tantrums are designed to get a reaction. They are goal orientated. They are a form of manipulation and require an audience.
Meltdowns happen regardless of whether anyone is watching. They are a result of complete mental, emotional and physical overload. There is no control, no ‘discipline’ or incentive that can make it stop, save waiting and repeated calming measures. They happen because the way a person with sensory issues experiences the world is very different to the way others experience it. Noise, crowds, sensations, unpredictability – they take a toll that we cannot imagine.
To the outside, the behaviours for both meltdowns and tantrums can look exactly the same. Autistic children sometimes wail and lash out when having meltdowns. Sometimes they shut off completely in an attempt to cope – become blank and unreactive to the world.
Sometimes, my boy has tantrums – like most children.
Much more frequently – several times every week – my beautiful boy has meltdowns.
They come suddenly- a word out of place, a missing cup, a song that comes on out of track order – and they completely overwhelm him. There are subtle signs that one is coming, but the final straw is hard to predict.
There are some, even here, shaking their heads. I know. I see scepticism when I try to explain to friends and acquaintances. There are those who will think I am deluding myself, making myself feel better about my lack of discipline, or about having a ‘difficult’ child.
But I KNOW. I know there is no ounce of manipulation in his despair. I know that his reaction is as all-consuming as a hurricane. And just as you cannot train a storm to cease, there is no way to help my boy. His mind becomes chaos, his body pain…
I feel it with him.
This week, we tried to do too much. The sun has been shining. Mummy and Daddy are off school. There is a world to explore and places to visit. The days tumbled out in a long catalogue of picnics to have, grandparents to visit, seal sanctuaries to see, National Trust gardens to roam and adventure play parks to try.
I should have known. Last half-term, we did the same, and my boy was more and more lost to us each day out of routine.
It was too much. He was forced to cope, every day, and every day his little body got more overwhelmed and every day his little mind became too full and every day he began to feel like the world was shattering around him.
And at the end of that story, you might see a little boy screaming and screaming until it seems his lungs might burst. You might see his mother, desperately trying to contain him, struggling to carry him back to the car, to safety, and his music, while he flails and screams and wails.
And you would not know.
My boy is sweet and kind and obedient. Malice, deceit, jealousy – they are strangers to him. In his routine he is loving, funny, quirky and brilliant. My only sorrow stems from his – I wish I could take it from him.
But in a meltdown he is lost in a storm, spinning and screaming, and he feels like no one can hear him.
Afterwards, there is calm, quiet. He stares into space, headphones on, body very slightly twitching in time to the beat. It takes a long time, for his words to come back. It takes a long time before he can look at us again. It takes a long time, before my little boy is there again. Often, I feel more frustration, more heartache then – when he is missing.
And so we have returned home, to routine and familiarity and the same songs, the same cartoons, in the exact order – where events follow on from one another in the same way, every day.
And if you shook your head, if you tutted when you caught the end of the story, if you think you know a tantrum when you see one –
I have tried to explain. But ultimately, you don’t matter.
Because I know.
For more posts about autism, check out our autism category.