Whilst I like to focus on the positives of my life with JJ here, I’d like to broach the difficult topic of meltdowns, which I know many of you who are parents/carers of autistic children will be experiencing.
We have faced meltdowns with JJ many, many times over the years, and I can say from lived experience that for us, there was NO help offered professionally, despite us asking for help. Everything we have learned, we have learned from instinctive parenting, educating ourselves and being open to new approaches, pushing ourselves to the limits of our tolerance and understanding and also from an incredible Facebook group called The Send VCB Project, run by the wonderful Yvonne Newbold. We still don’t always get it right, and often have regrets about how we may have handled situations, but we are in a much better place as a family than we have ever been.
Firstly it’s crucial to say that meltdowns, no matter how devastating for the family of the autistic child, are infinitely more devastating to the child. No matter how hurt a parent may be by the actions of a child – whether it be from the child hitting out, damaging property and/or saying upsetting things – it’s critical to remember that the child has gone through a deeply traumatic experience. The meltdown will undoubtedly leave them exhausted, ashamed, embarrassed and afraid. The whole process, from build-up, through the event itself, and the come-down, can take hours. Experiencing the total loss of control that precipitates a meltdown is something that not many neurotypical adults go through very often, or can fully understand. For a child to experience this 100% loss of control of body and mind must be terrifying. Imagine for a minute how that would make you feel of it happened to you today, in front of your family.
Meltdowns are not tantrums. And they do not always involve physical behaviour.
Tantrums are commonly exhibited by young children who desire something and are not able to get it. They do not understand the reasons behind this and may scream, shout, hit and kick out of sheer frustration. For many neurotypical children, whilst not being easy for parents to deal with, tantrums are an understandable and explainable part of the developmental process, and an event which usually become less and less frequent as the child matures.
A meltdown is a different thing altogether. Some autistics themselves prefer the terms shut-down or panic-attack as they feel these more adequately describe the changes that take place emotionally and physically. A meltdown does not occur simply because the autistic child wants something they cannot have. A meltdown is the result of a cumulative emotional and/or sensory overload, resulting in the child being temporarily unable to function as they usually would. The primitive part of the brain, sometimes referred to as the ‘lizard brain’, takes over in these situations of extreme stress. That is when the fight, flight, freeze and fawn responses are triggered.
Children may suddenly become physical – hitting, kicking, pushing (fight). Or they may run away (flight). They may become very still and unresponsive, perhaps hiding away (freeze) or they may become overly eager to please, appear happy and passive (fawn). Your child may exhibit a combination of some of these, or these may be exhibited at varying stages of the meltdown.
I do believe passionately that anything the child does during a meltdown should never be punished or shamed. It may be human nature and/or a feature of traditional parenting to want to do this, but in my opinion it’s very damaging. The knowledge of what they have done and all the negative emotions they will be experiencing means the child needs to be comforted, loved and supported to regain their balance and to understand that their actions were out of their control. If and when appropriate, some children may be able/willing to talk about what happened, as long as it’s done with a view to helping them prevent a similar situation. Also, it’s important to spend time reassuring the child that this was just a blip, things won’t always be this way. With your love and support, as they mature you can work together to identify triggers and find ways of helping them deal with difficult emotions before meltdown is reached.
I really hope that you’re not reading this and thinking that I’m making it sound easy. I know it’s anything but. But I also know personally that it can get better with time, patience and understanding. The biggest change for me came when I left my emotions at the door during a meltdown. Silently being present and not trying to reason with JJ helped us. Dealing with the physical aspects of the meltdown was infinitely more challenging and that took a long time to develop an appropriate response to. As a family, we’re a work-in-progress, dealing with new situations and challenges for JJ on a daily basis. If we don’t get it right today, we wake up in the morning and try again. We always have a fresh start every day.
A Boy Less Ordinary 