The past two days have been meltdown days in my household. People outside the autism world don’t understand what I mean by a meltdown… isn’t it the same as a temper tantrum? NO! Every parent faces temper tantrums from time to time. You know the kind where your child is told no at the store when they ask for candy at checkout… they drop to the floor and scream and kick and make you want to run and hide. The kind that as soon as you give in, the tears instantly stop and the world is right again in the child’s eyes…. Yup, had plenty of those with my first child.
For children with autism, “meltdowns” are often mistaken as a tantrum by nosey onlookers that make snide comments without understanding. Meltdowns however are so much different. A meltdown occurs when a child with autism simply can’t make sense of the world anymore. It has become too hard. There are too many noises, too many sights, sounds, and smells. Their already overworked nervous systems just can’t take anymore. There are too many expectations they don’t understand and simply not enough verbal skills to express the need for help. They fall apart… literally. Meltdowns don’t make me want to run and hide… I don’t care anymore what the onlookers think. They do however, leave me helpless. I want to comfort my child. I want to find him a safe place in the world. I want to help him make sense of things. I want to shut down the noise, the lights, the chaos. I want to protect him and hold him and control the world for him, but I can’t. It is the worst thing about autism… the helpless feeling when your child hurts and you can’t do one lousy thing about it.
Different parents tell different stories about meltdowns. We usually can tell when they are coming. The hands go over the ears. His voice gets a bit loud and scripted… he may start yelling something like surprise, surprise or start quoting lines from a movie. He buries his head and tries to shut out the world. That is our cue… seek refuge ASAP. Find a quiet spot to take him to. Change the environment. Give him a back rub, help calm his nervous system. Sometimes it works. Sometimes, we can’t avoid it. The screaming starts, followed by hitting, usually hitting a chair, table, throwing an object… occasionally hitting the person trying to help him. That is ok. I can take that. He is simply scared and frustrated. He doesn’t have the verbal skills to ask me for what he needs and wants someone to help him. But that is only phase 1. Phase 2 is the worst…. He realizes what he is doing and feels bad about it, but he can’t make it stop. That is when the gut wrenching crying begins. The kind that causes him to gasp for air. The kind that goes on for so long that he makes himself sick. That kind that he doesn’t stop until he just falls asleep from exhaustion. That is the phase I can’t take. That is when autism really stinks. It makes my sweet innocent little boy sad. 5 year olds shouldn’t feel depressed. They shouldn’t feel stress and anxiety. They should be playing and learning without a care in the world. Children with autism know about it all too well.
I have often heard parents with autism discussing if they want their child cured from autism. Some say they don’t need a cure… they should just be accepted. They are just different. Anyone who says that doesn’t have a child as severely affected as mine. Do I want a cure? You betcha. I would give my life for him to be cured. Autism stinks. It really stinks. In the meantime, we just keep holding him, keep reassuring him, keep telling him we love him. We will cherish every good moment we have (and there are a lot) and we will be with him to support him through the bad. What would help though is for the world to understand. To give the kids the benefit of the doubt. They are not misbehaving. They are not rude or uncontrollable. They don’t need more discipline. They need to be accepted and loved. So please, next time you see a child at church, at the mall, the grocery, that appears to be having a tantrum, don’t judge. Be patient. Give the benefit of the doubt. There may be more going on than you know about.