This is the article about distressed behaviour and the devastating effect it has on neurodivergent young people and their families that I needed to read all those years ago. It was published in the October/November 2022 issue of SEN Magazine and you can read their online version here.
The meltdown is a highly emotive subject for many parents and carers of neurodivergent young people. It’s frightening to watch your child lose control and become so distressed that they injure themselves, belongings and/or other people. Sometimes it seems as if there is no warning or trigger. The child is in the middle of a catastrophic, terrifying loss of control and explosion of emotions and it’s hard as a parent to know what to do.
The word ‘meltdown’ is so emotive and fear inducing; after all it’s the word we use to describe a nuclear reactor becoming unstable and endangering lives. This adoption of the word into the SEN vernacular, and therefore into the framework of a young neurodivergent person’s behaviour, implies that the impact of the meltdown is felt only by those on the outside. But this is not the case. The effects on a child or young person are lasting and gather trauma along the way.
Meltdowns may also be referred to as panic attacks, which is a step closer to a better description of what is occurring. Indeed, the phrase ‘distressed behaviours’ is more commonly being used, which helps to shift the focus back to the feelings of the person at the heart of the experience.
Often on online forums, parents and carers write about how they are at their wits’ end with immensely challenging behaviours and meltdowns. They speak of having nowhere to turn, feeling frightened, isolated, embarrassed and powerless. These parents are often called out in the comments by neurodivergent adults, desperate to impress upon them the sense of helplessness and fear the individual who is having the meltdown is experiencing, and the fact that they didn’t get to that stage by choice. They often urge the parent to remember that the behaviour is not manipulative or malicious and should by no means be considered ‘abusive’. Language is important here.
Both sides of the story are valid. After a meltdown, neurodivergent people are often left emotionally traumatised and embarrassed, and understandably devastated by their actions, and may be unable to verbalise any of this. Parents who’ve grown up with traditional notions of reward, punishment and certain expectations of behaviour in young people, may be unwillingly perpetuating a meltdown cycle by demanding apologies, administering punishments and pushing their own feelings of confusion and resentment onto their child. Even those parents who have become more enlightened and aim to create a low-demand, autistic-friendly home environment, will still inevitably witness their child have some kind of meltdown at some point. They too will struggle. It’s not something we can ignore, brush under the carpet or pretend doesn’t happen.
Meltdowns are a ‘multicoloured’ emotional experience. They always occur as a result of something, be it the trauma of going to school and unmet needs, an unsuitable sensory environment, difficulties with communication and social interaction or the overwhelm of complying with demands over a period of time. Fight, flight, freeze and fawn are the most basic human emotional responses to fear and trauma and it’s not always a physical expression of internal emotions that we see. The manifestation of the distressed behaviour may be to get as far away from the perceived danger as possible, or to ‘zone-out’ and retreat into oneself to escape from the situation, or (and possibly the hardest to spot) to outwardly comply with the situation and be as agreeable and malleable as possible. All these responses are direct consequences of some kind of overwhelm, and all are evidence of severely distressed behaviour. But the fight response tends to get the most attention, as it is the most ‘socially unacceptable’ form of uncontrollable expression.
You wouldn’t bat an eyelid if you saw a toddler screaming in a supermarket, but a ten year-old? A fifteen year-old? Public meltdowns are doubly distressing, as not only are the parent and child suffering deeply, they are also opening up their world to the judgement of strangers who very often will just see a naughty child having a tantrum. I’m sure many of you reading this will understand that this adds yet another layer of unwanted stress to an already highly-charged situation.
Perhaps that’s why it is rare that we openly talk about distressed behaviours and the devastating effect they can have on whole families. This social embarrassment leads to feelings of shame, and a lack of understanding—and sometimes a lack of compassion—towards the neurodivergent person in crisis and the upbringing they are receiving from their parents.
Distressed behaviour affects not only the immediate family, but can quickly ripple out in wider circles of relatives and friends, schools, and even affect parental jobs and relationships. The confusion and fear of the parents—who may also blame their parenting skills—can have really serious, long-term consequences. Pretending it doesn’t happen, ‘keeping it in the family’ and never discussing it openly is common.
When my son’s toddler tantrums gradually evolved and morphed into huge meltdowns which fall firmly into the fight category, I was frightened and at a total loss. I didn’t understand what was going on in his brain and felt a myriad of exhausting emotions on a daily basis. We stopped leaving the house for a while, rarely socialising and when we did, my heart was in my mouth. As the years went by, we began to develop some coping mechanisms and cherry-picked the places we visited and people we spent time with. I was constantly hyper-vigilant, looking for triggers—anything tangible that could perhaps light the fuse. The truth is I was feeling around in the dark and we lurched from one highly-charged emotional situation to the next, with no end or stability in sight.
Even after his autism diagnosis at age nine, I struggled to find any to help our fractured family get through the days. Over the years I called various autism organisations, asked our paediatrician, was advised to do a parenting course—I even asked a SEN teacher—but nobody seemed to know what to say to me. It was as if I was asking for the impossible. No matter how much I searched, I didn’t find any answers, help or support. I wanted to know how to help my son avoid the overwhelm which led to meltdowns, but I also wanted to know how to help him whilst he was in a meltdown. There is some help and advice about the former (if you know where to find it): reducing external stressors which may increase anxiety over a period of hours or days, allowing quiet time, considering the sensory environment and learning how to behave when your child is in crisis. Knowing your child’s body language and looking for signs of overwhelm, employing distraction, removal of a known trigger, or simply allowing them to take time out alone with no demands may be enough to help them regulate. For me, the key to it all was looking inwards at my own stress levels, triggers and expectations of behaviour. I started to change my parenting style, and for the first time was able to look at my son with more understanding, patience and comprehension of his situation and perception of the world.
But frustratingly, what I found absolutely no help at all, was what to do when he was in his ‘red zone’, as we came to call it. When he was at the mercy of his amygdala, not able to think clearly, when all he was doing was fulfilling a primal urge to protect himself from threat. I learned through trial and error that during a meltdown, silence and finding my own internal calm was a game changer. And as a family we talked openly with our son and developed strategies to try and protect him, first and foremost, and ourselves too, when he was in crisis. It took years.
Sadly though, this remains such a taboo subject, Nobody wants to label their child as ‘violent and destructive’. And yes, language is still really important here. Using words like these imply a deliberate and adult motive, an intent to hurt or cause unnecessary harm. Distressed behaviour is not abuse, it’s an external expression of pain and fear. Again, framing distressed behaviour correctly was a way for me and my family to shift the focus away from the actions and back towards the causes.
Adjusting our thinking as parents and carers, and accepting that the distressed behaviour is not about us–it’s not personal, no matter what it feels like–can help us move forward. Putting our own feelings, impulses and upbringing aside and just being silent with our child allows the feelings to dissipate. Creating a space for our child, and being alongside them while they are struggling, helps to reduce feelings of isolation and shame. When control is lost, demanding it back is not realistic. Accepting that certain emotions need to run their course, and cannot be stopped. Un-learning the impulse to impose arbitrary punishments, which may only create more division within the family. And remembering that just because it’s the way we were brought up, and it’s what society expects, that doesn’t mean it’s right for our families. Start to talk about distressed behaviour as a family. Make plans to avoid and accommodate meltdowns as a family. Bring distressed behaviour out of the shadows, and start to remove the shame from everyone.