Looking back over Jay’s life so far, I can honestly admit, that the most frightening part of the Autism in Jay, has to be the Meltdowns!
Before I knew what was causing these meltdowns way back when Jay was three, I was so afraid of the reason why my adorable son would change in a split second , to an angry shouting screaming mess! This blog is never going to skate over the real deal that Autism is! They do not call it a disability for nothing!
So many of my friends would say comments like ” my child has meltdowns when they can’t get their way” and I would sigh quietly , becoming frustrated that they just do not understand. An Autistic meltdown is NOT a tantrum. Neurotypical children have Tantrums not meltdowns. So, what is the difference?
A meltdown is a sensory and emotional response to a particular stimulus, that leads to a total shutdown, and inability to self regulate oneself without support. It is completely all-consuming, it cannot be stopped or controlled in a child with Autism, and the child will continue the response, regardless if any one is watching or not. It is often violent, and is fed by extreme anxiety and an inability to calm oneself without intervention and help.
A tantrum exists only to get one’s way and is a normal part of all children’s development and usually stops by the time the child is able to self-regulate their behaviour and emotions and sensory reactions! This is around five years old. A child having a normal tantrum, will stop as soon as the adult attention is gone. It is as simple as that!
Jay’s meltdowns when he was very young, and before diagnosis, were all consuming and so frightening for him. He had no language and no way of telling us what was wrong. He had many triggers at this young age which included busy crowded places, Weather changes, Thunder, noise, Television shows, especially Cbeebies’s shows and visiting places he was not familiar with!
These early meltdowns would start with Jay becoming more and more visibly anxious and would crescendo into massive screaming fits where Jay would hit out at us and run away and hide whilst screaming loudly!
As he grew older and acquired more language, he began to be more verbal. His meltdowns changed too. They became sudden angry bursts of panic where he would say phrases over and over again such as ” I’m scared” He would shout at us to “help him” and he would shout “I have to hide” as he ran around the house screaming trying to find a place to get away from the all-consuming fire he was feeling.
At this stage of a meltdown a child needs help fast! They cannot self-regulate! Let us always remember , as Autism Carers, that the child is completely unable to come back and gain back self control. What actually is happening , is a physiological response in their bodies which they cannot stop or control. The length of the meltdown varies, yet it always results in complete exhaustion. A child who has had a meltdown due to Autism, will require a ‘safe space; to go in which to calm down and rest after it has happened. We began to provide dark dens at this stage and tents and covers, where Jay could go and recover. He would ‘envelop’ himself in darkness to find his way back to normal calmness and this would take hours at times!
These meltdowns are so hard to witness and even harder to combat. We can help though! I mentioned last time how I keep my own emotions in check. Well, this is so very important during a meltdown. We must be the ‘ calm’ for the child. If we get upset or shout , then that child has not only their own meltdown to deal with, but also our emotions too, and that is just asking far too much of them! They simply cannot be asked to process our emotions too, in a time when they cannot even regulate their own. A child in a meltdown, requires a calm, in control, quiet adult to lead them back to a regulated state in which they can recover. They need time to do this and should be given space . However they must also be kept safe. Some meltdowns can include self-harm! This is so very hard to admit for parents of children with ASD, but we must admit it if we are to gain more understanding from others. Jay went through a stage of hitting his own head against the wall, and as you can imagine this was really hard, as I had to keep him safe from himself. I began to hold a cushion between the wall and Jay. You see, Jay was ‘sensory seeking’ during his meltdown. The banging his head provided a feeling other than the meltdown to register in his mind, and so by doing this he was trying to defer from the meltdown intensity. Many would say just stop him. Well yes of course that would be the first point of action, to try and say no- however, trying to stop the child from sensory seeking during the meltdown can be detrimental as they can then turn to you, the carer and use the physical action on you. The best thing to do, I believe is to find a ‘ safe way’ for the child to seek sensory stimulation in meltdown, in this case the cushion made the physical action safer. If a child is biting during meltdowns, you can buy chew toys and sensory sticks to defer the child from biting themselves or others. This way, you allow the child to do what he needs to self calm, yet, at the same time you keep the child and others safe!
Providing ways to prevent sudden violent meltdowns is also a cause of action. Many meltdowns are triggered by sensory reactions and so providing ways to de-sensitise them is really important in preventing meltdowns in the first place. If the child is reacting in busy public places, then provide them with Ear defenders to zone the noise out and regulate their sensory systems. If the child shuts down in public and you cannot move them, then provide a SEN pushchair. Go forward with your child, safe, and feeling calm in their buggy and try to ignore people who stare because your child is too big for the pram! I advise complete and utter ‘focus’ being on the child. We are their Carers, not just their parents. WE have a job to do! We must try to keep them calm in this busy world, any way we can, and the judgements of others need not affect us because we are amazing, and the job that we do is precious and means something huge, so the judgers can go take their comments and stares back with them! Learning to only focus on your child in public, during meltdown is one of the hardest things we have to do and if we can rise to that challenge and be as strong as we can be, then we are a force to be reckoned with! Just believe that if you can master this you are a warrior for your child!
I remember at one stage Jay had to hold a cover over his face whilst in his SEN buggy. It really worked. We also applied to the Family Fund, and received an award to purchase a ‘Squeeze vest.’ This provides gentle pressure whilst inflated which is proven to help sensory regulation, hence preventing meltdowns. Here are a few pictures of Jay with his vest and tents and dark dens -all ways in which we have helped him stay calm
Wearing his ‘Squeeze vest’, Ear defenders, and Sensory Dark den and lights.
Now I would like to ask one thing! I wonder whether people, after reading this STILL believe a meltdown is the same as a Tantrum? Or that Autism is not a disability? It blooming is a Disability, but it is also special too!
Mmmm hopefully I have put paid to THAT myth!
All these ideas I have learned along the way and I sincerely hope I will help somebody starting out, as I had no one except one friend who REALLY knew what I was going through! So, I give these blog posts to all the carers out there who need a helping hand on their Autism journey!
Next time; Life before and after Diagnosis- Support and how to acquire it!