Anatomy of a Meltdown

Autism meltdowns can be terrifying both for the child experiencing them and those nearby

Imagine you are a fourth grader in school. You love school. You love your teacher, seeing all the other kids your age. But you struggle constantly with learning and social situations.

Other kids write their letters and numbers smoothly, but you feel like you can’t control your hand. It is almost as if someone else’s hand is attached to your body sometimes, and you are frustrated and even embarrassed, but those feelings don’t make you able to write any better no matter how much you practice. And it takes forever to write something! Other kids zoom through their work and have time to read or draw, but you trudge through it. The worst part is that you know the answers, but it takes so long for your hand to put them on the paper. You can hear other kids giggle sometimes while you work and feel them looking at you, but you don’t understand why. It makes you mad and frustrated, but you try to be cool about it. You are pretty sure your teachers and friends like you, but you can’t always tell. Sometimes they act in ways that confuse you, and you sometimes say things that make them mad but don’t understand why.

One day, there is just so much math work to do. It is taking forever, and you are having difficulty concentrating.

You can’t stop thinking about the Hot Wheels car in your pocket. You love cars, love lining them up in a neat little row and looking at all of their lovely details, and it makes you feel better to think about them. The other kids are loud, shuffling in their seats, coughing, clicking their pencils, erasing, rustling paper. The lights seem to be brighter than usual, and your head starts to hurt. Everything is taking so long today, and you just want to play with your little toy Mustang. Your ears are ringing; your mind starts to wander. The word “butt” pops into your head and you can’t stop thinking about it. Butt, butt, butt. It’s so funny. You say it quietly to yourself, and once you do, you just can’t stop saying it. You can feel people looking at you, but you can’t stop. You start giggling, but nothing is really particularly that funny. You just can’t stop yourself.

You try to control yourself by hitting your pencil against the desk. Tap, tap, tap, tap. Your teacher asks you to stop, and her voice sounds kind of funny. “Okay,” you tell her, forcing yourself upright. Butt, butt, butt, butt. It won’t leave your mind. Your headache is starting to really throb. Your teacher asks you to stop messing around and finish your work, and you try to tell her how hot it is in the room, how your head hurts, how loud everyone is, but the words don’t come out smoothly. She doesn’t understand you.

Butt, butt. Tap, tap. Rustle, cough. You feel the little car in your pocket, pulling it out to look at it. You feel really weird, like your legs aren’t quite right. They feel like they aren’t really there. You kick your shin against the desk so hard it hurts. It helps, but only for a second. Tap, tap, butt, butt, rustle, cough, kick, car, click, tap, car. Your teacher tells you something, but you don’t really hear it. You’re looking at your car, all its little details, the little doors and wheels, its shining decals. She’s talking again, but she sounds like the teacher from Charlie Brown. You pretend not to hear.

Your teacher walks up to your desk and tells you she has to confiscate the car. She has warned you, she says. But you didn’t hear that warning, and it doesn’t seem fair to you. The other kids are all around you. Are they looking at you? You can’t tell, but it feels like it. You thought you heard someone laughing. They’re probably laughing at you. Your teacher’s face looks funny. Your voice croaks out in a strange squeak. You are crying, but you want to laugh or scream. You don’t know why. You try to explain what was happening, but your words don’t come to your mouth quickly enough. You can feel them in your mind, but they are jammed up. “Give it back!” you cry. It’s too late. She is talking to you, and you can’t understand her words. Everything is bright, hot, loud, and your emotions are exploding within you. You need her to stop walking away so you can just explain what happened and get your car back, but everything is going and happening too fast. “Stop looking at me!” you scream, and the other kids look scared of you now. Everything is spinning out of control; you can’t feel your hands or arms or legs. Your mind is screaming with sensation, and there is nowhere to get away. In a panic, you knock over a desk. Realizing you are in big trouble now, you start to scream. You want to run away, and you start to run with no place to go.

This is what it feels like for Noah when he has an autism meltdown. They can come without much warning, and they are as terrifying for Noah as they are for those around him. The older he gets, the more dangerous they become.

After months without a meltdown, Noah has had two of them in the past two weeks at school.

One of the hardest things about being a parent to a child with autism is despite all the help, despite all the books and Youtube videos and best intentions, it is still incredibly hard to shake the nagging feeling that you don’t know what you are doing and are basically failing your child. Just when you feel like you’ve figured something out, life, like a bomb cyclone, comes in from the sea and pulls away the house of cards you’ve carefully built with the apathy of nature.

It’s easy to forget Noah isn’t neurotypical until it isn’t.

Last Monday, stuck in traffic, Justin and I entertained each other by shooting zingers back and forth like Benedick and Beatrice. There was a time when we’d had to explain we weren’t being literal, like the time I hyperbolically told the kids Justin was going to kill me for making a mess of his kitchen and Noah erupted into giant, hot tears, his face red and horrified. I had scooped him up and apologized through my own tears. It was so easy to forget how literal the boy’s thinking often is. But on this day, as the afternoon sun filtered in through the minivan windows, reflecting the icy ocean of the boy’s eyes, his face brightened at our salt and shade before suddenly growing very serious. “Hey, dad. Do you have a first aid kit in the car?”

Slightly alarmed, Justin replied, “No…is everything okay?”

Noah’s response reflected the skill and timing of a pro: “Well, I just think you’re gonna need to put something on that burn.”

It should go without saying that the comment received a round of applause from all.

With all his progress in terms of communication and understanding nuance, it is all too easy to forget how far he has to go and how hard he has to work for things that neurotypical people find second nature. Noah loves to tell jokes, but he struggles with reading people and struggles with timing, so many of his attempts come across as awkward, inappropriate, or even rude. He is a deeply affectionate and empathetic boy, but he can’t always identify the emotions conveyed by facial expressions, which often causes him to come across as apathetic or unkind. Because he struggles to understand others, others misunderstand him, and the pain this brings him breaks my heart as his mom.

If you don’t know how autism works, I will try to paint a little picture, but with an important caveat: I don’t have autism, and as much as I want to be an ally and try to approach autism and disability with love and compassion, I am not qualified to be the voice of individuals who have autism. When I speak about autism, I am telling of my child’s experiences as he has shared them with me. No two people’s experiences are the same, which means how autism affects one person’s life is not necessarily how it will affect another. The only way to better understand autism and how it affects lives is to seek and listen to the experiences and wisdom of individuals living with autism and respect their way of seeing themselves and the world.

The difference between a neurotypical brain and an autistic brain is in the way they process information. I think of it as two computers running on different operating systems. One is not necessarily better than the other. Many people find Windows preferable for word processing and general administrative work, but when it comes to visual and graphic work, Apple seems to be the preferred choice for many fields. And while you can open most of the same files on your Macbook and your Dell, occasionally you run into a file looking different on one OS or something that simply works better with one or the other.

Both can be terrific computers, but they simply process information differently from each other. In much the same way, neurotypical minds and autistic minds process information differently. Just as different operating systems have their advantages, different ways of seeing the world and processing information bring fresh ideas and perspectives to our collective human experience. However, as a society, we are only recently coming to understand the importance of giving everyone the opportunity to participate equally, which means people with autism often encounter obstacles to that participation.

When I say that people with autism perceive information differently from neurotypical people, this experience varies from one person to the next. However, one of the most common differences from neurotypical folks is that people with autism perceive sensory information differently. Noah talks about this in terms of superpowers. He has even created a fictionalized version of himself called Catman. Like Noah, he has the ability to acutely focus on one sense at a time in an extraordinary way. For example, in a room full of many sounds, Noah may become particularly interested in the sound of humming from the neighbor’s engine in their driveway. Or he may be able to pick out the smell of smoke from a fire far away.

The downside of this heightened perception is that he is often unable to sort through sensory information. Noah is an incredibly gifted boy and ahead of many his age in most subject areas in school, but he requires more time to process most information as well. The more information his mind tries to process at once, the slower he is able to process it, almost like a computer with too many applications open. When a computer starts to slow down, if you keep opening tabs on Chrome like I am guilty of, eventually, it’s probably going to give you the old Blue Screen of Death. Noah has his own version of BSOD, the meltdown, and when it happens, just like with your laptop, everything comes to a full stop until you can get through it.

I can’t even tell you how many times we can look back and see exactly why a meltdown happened and probably could have been prevented after the fact, but all I can do is file this under “parenting is harder than it looks on the package.” When Noah begins to become overstimulated or have difficulty processing, he sometimes exhibits outward signs, but as he learns to control those impulses, they become more subtle, which means we don’t always realize how he is feeling.

Sometimes, this will come in the form of sounds. He might start to repeat a word with no clear attachment to meaning or whistle compulsively. It is a normal part of the human condition to have impulsive or intrusive thoughts, but most of us are able to ignore the inexplicable compulsion to snatch a grape from the produce aisle or throw something just for the heck of it. Noah struggles with this on his best day, but the more overstimulated he becomes, the harder it is to control those impulses. He will compulsively touch you as he passes by you, throw a Lego across the room, poke you with a pencil, draw on the table. He doesn’t know why he does it, but he has a harder time controlling himself the more intense the situation is in terms of information, senses, social situations, or emotions.

To boot, the older he gets, the more aware he is of social interactions, but because he struggles to pick up on social cues and nuance, he can become extremely upset. Put another way, he is starting to be able to pick up on the fact that someone is giving him side eye or sarcastically telling him he is cool, but he doesn’t understand why or how to respond. He can feel that people are upset with him, but he doesn’t know how they want him to act to not be upset with him.

All of these things can combine to lead to a meltdown, and once you understand what that means for him, it will break your heart.

The best and only thing we can do is to continue to love each other and reach out to the support available to us. I can’t say enough in gratitude to Noah’s team of faculty, staff, and counselors at Grove Elementary School and how hard they have worked to raise awareness among their faculty, staff, students, and parents about autism.

If you’re struggling with how to offer someone you know or love with meltdowns, the best advice I can give you is to listen to their unique voice and learn everything you can about the experience of living with autism. Try to never lose sight of the fact that with or without autism, we are all just people trying our best to live our lives and be good to each other.

So please try to be good to each other.