Autism and meltdowns: in search of the trigger
How do you deal with defiance? It’s hard enough for a parent to deal with defiance from any child but what about from an autistic child? I can look back and see that it all could have been handled much better if I had understood the triggers that initiated the “meltdowns.” One specific trigger always resulted in a battle of wills and physical strength. If I had only known then what I know now those battles would have fallen away at a much earlier age. Although I learned early that Matt had a prescribed formula in the progression toward a meltdown, it took me years to discover their root cause. For those of you who don’t know what a meltdown is I would describe it as an escalation of defiance to the degree of def-con 4 (possibly 5) as compared to a typical temper tantrum – which I would rate as only capable of reaching def-con 2. Regrettably, the cause was not discovered until years later, after Matt had already been through numerous high-level meltdowns. Imagine my shame when I discovered that I had unknowingly triggered the worst of them. “How?” you ask. I told Matt “No!” The trigger to a meltdown turned out to be one simple, and completely avoidable, word.
When he was still non-verbal (prior to the age of 5) defiance was expressed in various behaviors – crying, screaming, hitting, biting, or my all time favorite - the full-body lock down. Child proof locks on cabinets didn’t prevent him from opening the cabinet door under the kitchen sink and the latch on the back door didn’t prevent him from escaping to the yard, then to the road and down to the creek. Considering the dangers a child is surrounded by on a daily basis, you can understand why I used the word “no” a lot.
I didn’t realize back then that Matt’s comprehension of the word “no” meant something more painful than a simple veto. The word “no” meant “rejection” and suggested disapproval of him to his very core. I now realize Matt has hated this word since even before he could actually say it. When he was young I attributed his emotional reaction as pretty typical for a pre-school age child – maybe a bit on the exaggerated side, but I was a fairly new mom – what did I know? I didn’t see the pain - not really see it -until he was between 8 -10 years old. Prior to understanding the cause of his meltdowns I had unlocked the pattern of behaviors indicating one was imminent and could at least prepare myself in advance for the ensuing battle.
The sequence began with a very stern “No!” from me. This was met with a show of defiance from Matt. Upset, crying and angry he would make it clear he did not approve of my rebuff and was determined to continue whatever it was he was doing. Pushing limits, that’s what I thought he was doing. So, of course, I said “no” again, even more forcefully than the first. My second use of the word only made matters worse - it lit the fuse for a meltdown. A full-body lock down was his preferred method of defiance in public, whereas swinging fists and kicking legs was usually his choice in our home. In a full-body lockdown Matt would drop to the floor and stiffen all his limbs. It was his way of saying, “I’m not leaving”. Picking him up was difficult, but not impossible. After standing him part-way up Matt then had to be swung over a shoulder and carried out as if being rescued from a fire. You can bet there were plenty of stares from passersby – and they were not kind stares, if you get my drift. If we were home Matt preferred to fight. To prevent him from injuring himself or others I would have to physically contain his movements. First, I would pull Matt to the floor with me from behind so that he sat in my lap. Then I hugged him - tight. My arms wrapped his arms, my legs wrapped his legs, and still he was able to head-butt me a few times. Once in my arms Matt would struggle mightily to free himself until finally he just broke down. Exhausted physically, Matt would suddenly go limp. Then the angry cries which had been filling the air from the onset changed to gut wrenching sobs. As I sat on the floor holding him I would rock us back and forth and speak softly in his ear. I knew by the anguished cries and the limpness of his body that the battle was over. Nothing in this world has the power to rip my soul to shreds like Matt crying. His cries are no ordinary cries. They come from somewhere deep inside him and when they surface they release all the anguish of his frustration and despair. They are so sorrowful that if I hear his cries for longer than a few minutes, I will cry as well.
Before I let him go Matt would always shift his body so he could look at my face to make sure that I was again smiling. Smiles meant everything was going to be O.K. It took hours sometimes to calm him down to the point that he could go on to play again. A meltdown left us both physically and emotionally spent. The worst part was thinking we would have to go through it again someday – as there always seemed to be a next time.
Although I knew the routine and what to expect I couldn’t connect the dots between his extreme reactions and a simple reprimand. I often wondered about how it would be in the future. Would I have to physically contain him as a grown man? Was that even possible? I knew the day would soon arrive when Matt would get the best of me and knowing Matt, he would not be able to handle the guilt of hurting me or anyone else if something happened. Still, I couldn’t figure it out.
I wish I could say that my super-human powers of deduction found the trigger, but that would be a fallacy. Matt actually told me, “no more ‘No!’ no more ‘No!’, please!” in a voice racked with both pain and sorrow. How would you interpret that? He could mean he doesn’t want me to say he can’t do something, or he could mean, quite literally, he doesn’t want me to say the word “no.” In autism, most things are meant literally. The next time he was reprimanded for something I avoided the “no” word and although Matt showed disappointment, and some confusion, there was no meltdown. I was in shock. Could it really be that simple?
For all those years I had not taken him literally. All those forcefully stated “No!”s, all those battles that didn’t need to occur. How many times did Matt fight to preserve himself and force the “anger” in my voice to go away? I had raised him on smiles and laughter. I had coaxed him to interact by showing him smiles and lessening fear. When he saw my face and heard my voice as I reprimanded him, it was as if his safety net had vanished and he was falling. Meltdowns released frustration and anger but also were an indicator of fear. Meltdowns were the only way he knew to fight back.
Thankfully, I eventually became aware of the power of the word “no.” Things didn’t escalate if I used another word or phrase. Saying “Not now, Matt” or “We can’t right now” was handled much more smoothly. Although I kept expecting the situation to rise to def-con 4, it rarely rose above def-con 3. When it did escalate, his screams would intensify and I would instantly become aware that I had said the word “no” again.
I stopped using the forceful “No” years and years ago. There have been no meltdowns. I have said “no” in fun and in phrases like “no-way!” to help desensitize him to the word and he now handles hearing it quite well. That’s probably because he always examines my face to see if I am smiling. Knowing this, I have reserved any stern looks to times when I absolutely have to use them.
Autistic children live with fear – lots and lots of fear. We work everyday to make the world feel a bit safer for them, but still fear lurks just beneath the surface. Fear accounts for many autistic behaviors. Is it such a leap to think that fear also underlies the meltdown? I realized that Matt, for all his accomplishments and progress, still struggles beneath the surface to cope. He handles all the ups and downs so well that I forget sometimes that fear is hiding just beneath the surface. An angry face or a sternly uttered word from another person and Matt could be pushed toward a possible meltdown. Even now at 25 years old it is still possible – though I hope the likelihood has diminished. If it did happen again I am confident I could intervene and stop it before it escalates, but what happens when I am not there anymore?
This is why I write – to let others know what autism is and to encourage other parents to look for deeper meaning behind each behavior – even meltdowns. If you are struggling with meltdowns from your own child I highly recommend hunting for the trigger. All children with autism are different, but they do have a common thread . . . an underlying fear. Remember that for every action (trigger) there is an equal and opposite reaction (meltdown). I am convinced that for autism this is true. Every outward behavior has an underlying and purely logical reason. As parents and caregivers, isn’t it up to us to try to understand them just as much as they are trying to understand us?
If I only knew two decades ago what I know now . . .
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