It wasn’t a bad day, in fact it was pretty good. I had worked a little overtime and was bringing some dinner home to my wife.
There was a Chinese place that we hadn’t tried, and I wanted to do something nice for my wife. I placed my order, waited about 10 minutes, and then proceeded to take the food home. It didn’t occur to me to check the box; after all, this was a pretty nice place.
But lo and behold, once I got home and opened the box, I found everything except for my wife’s entree. I couldn’t even feel it coming on. I was crying, I was cursing, I was stomping around slamming doors. I got in the car and started to drive the 20 minutes back to the restaurant, called them on the way and told them that they messed up the order.
Of course they apologized and told me that they would fix the order, but the damage had already been done. I was crying, cursing, screaming… I was having what many autistic people described as a meltdown.
After the fact, I could reflect a little more about why that event was so triggering. The day before, someone had called me a “short bus riding window licker.” This brought back memories of years of being bullied and feelings of inadequacy. So, when I couldn’t even get my wife’s food order right or follow through with a surprise, I was caught off guard by all that emotional weight I’d been carrying.
Merriam Webster’s dictionary defines a meltdown as a breakdown from fatigue or overstimulation. It’s a good starting place to describe what exactly is happening. The Interactive Autism Network describes a meltdown as an “instability.”
Think of it like this: you’re working with a computer, and you’re giving it too many commands at once. What does the computer do?
At first, it kind of shuts down. It doesn’t respond to any of the input that you’re sending to it. But then something interesting happens: everything starts flashing, windows start opening and closing all at once, maybe keyboard strokes from moments ago start appearing on the screen.
You can say the computer has reached an instability and is responding as best it can to all of the input that it has received. That’s kind of what it is like in the autistic mind when a meltdown occurs. The whole system– not just the brain– becomes overwhelmed. This can happen for many reasons; for instance, in my situation last week, it happened because I had the best intentions and had planned something to happen. What actually happened was totally contrary to what I expected… thus: meltdown.
It can be very difficult for neurotypical people to understand exactly what’s going on during a meltdown. They can also be difficult to describe as every autistic person experiences meltdowns slightly differently.
From the Community
What follows are some answers to questions about meltdowns that I asked some of my friends in the autistic community.
Question 1: what do your meltdowns feel like?
Personally, I tend to have more shutdowns versus meltdowns. I think of shutdowns as “internal meltdowns,” as they feel very much the same, but externally look very different.
For both a meltdown and shutdown, I feel overwhelmed and generally go non-verbal/mute (not by choice). I usually can understand other people speaking without too much effort, but I cannot figure out how to make words come out of my mouth. I feel confused and frantic internally. It is painful. My body feels like it’s on fire and raw.
I want to collapse or lay down. All the while I want to hit myself in the head or chest. If I am in a meltdown, I’m usually also crying and shaking, feeling scared and helpless, and otherwise broken and embarrassed. During a shutdown, I feel stupid and incompetent, and still feel the feelings of feeling scared, helpless, confused, embarrassed, etc.
Everything feels too bright, too loud, too much. My senses are on overload and I just want to curl up and disappear. I keep coming back to the word, “frantic.” It feels like the categories and organization my autistic brain thrives in and has built all have disappeared…it’s like I suddenly dropped into a world that I am unfamiliar with completely and have no ways to make sense of. It’s disorienting and confusing.
“When I feel one coming, it’s like mental pressure building, my movements become more agitated and jerky.”
I can’t answer the question of what my meltdowns feel like because I literally don’t know. That’s why they’re so terrifying. I have an extreme need and can’t tell what it is in order to meet it. It’s as extreme as being on fire, but even then I’d know I needed to either smother it or get in some water. With this, I don’t know what the feeling is or how to stop it.
“Intense brain fog and irritability signal that I am going to have a meltdown soon. If it’s slow coming on, and I recognize what’s happening, the symptoms often feel similar to a migraine. My senses are heightened to a painful degree (the stuff that is usually just sort of irritating becomes debilitating, like I am going to throw up), and I can’t handle light or sound or smells– must escape– my anxiety becomes so consuming that I feel like I will never be free from the intense misery I am feeling at that moment. ”
Like I am going to die right then and there and there is no hope, and I hate literally everyone– even those I cherish most in the world. I speak very quietly and walk into another room to be alone and cry in darkness and quiet, and my entire body aches. I scream into a pillow and feel complete agony until it passes. I also can’t really feel my body as I’m walking. I feel like I’m outside of my body pushing myself to move into another room by sheer mental force.
Question 2: How long do your meltdowns last and how do you feel after?
It’s a bit hard to answer how long a meltdown or shutdown lasts for me because there’s a time leading up to it, then the peak of it, then the drop off. I’d say the “peak” of it (which is more of a plateau) lasts around 30 minutes maximum, with the “ultimate peak” being probably around 7 minutes in the middle of that 30. The effects go on for hours or days, however.
Afterwards, I feel exhaustion that is indescribable. If I was around people, I feel embarrassed and insecure, like I needed to explain myself and give a mini lesson on what autism is and why I suddenly seemed to “go offline” or meltdown. After meltdowns and shutdowns, I need a lot of rest in a low-sensory environment. I need minimal tasks required of me, minimal social contact with people, and a lot of understanding and non-judgement from those who I am in social contact with.
“My meltdowns last until something can stop them. Sometimes it’s a friend talking to me, sometimes I faint or have a seizure, and sometimes I start throwing medications at it hoping something will make it stop. In the past, I used to self-harm or run until it stopped, but I try to manage them in healthier ways now. ”
Question 3: Is there something that you wish neurotypicals knew about your meltdowns?
I wish that others knew when I’m having a meltdown, I can’t be polite. It would be like making small talk and being polite while on fire. I’m likely to not be able to control my tone, might say the wrong things, and no one should touch me. I need them to understand that it’s not my fault, I usually need space and quiet time, and to not take personally what I have to say or how my behaviors present. If they are prepared in advance, then they can help me to get to the other end of a meltdown safely.
“I am not in control during a meltdown, I cannot rationalize, I may get mean, and I’m hurting myself, but yelling or putting any pressure on me is going to make it worse. Be calm, be gentle, remember I’m in CRISIS.”
Something I guess I wish that people knew is that I appear like I’m fine until I’m really, really not fine, and at that point, there is nothing that can be done– I just need to get through it on my own. I once tried to leave a friend’s house before my daughter had a meltdown and it didn’t work, so we ended up sitting in our car in her driveway while my daughter melted down, which made me melt down. It was horrible and kind of embarrassing. The friend was kind about it, but like, people don’t truly get it– our systems get overloaded so much faster because we take in so much more information and feel so much more intensely.
That input has to make an exit at some point, and we can’t control how or when that happens without mind-breaking planning and even with all that, there are still unplanned variables that throw the whole plan off.”
As I said, I could have asked a million different autistic people and received a million different answers to these questions. The fact is, meltdowns are not something that we choose to do. These aren’t just emotional reactions to not getting our way. They’re not tantrums, not even in children. They are very much an overloading of our mental circuity.
What is the way forward? What is the best way to deal with meltdowns? It’s all about putting more tools in your tool chest. Knowing your own personal signs and triggers, knowing what it feels like before having a meltdown, will help you be able to prevent them.
If you’re autistic, you need to know it’s okay to to set healthy boundaries for your loved ones by making it clear that you might need to wear ear plugs or sun glasses, stim to help regulate your nervous system, decline some invitations, or take social breaks during events.
If you are a loved one of someone who is autistic, be gentle and kind while the person is having a meltdown and after. Often, they need space. When the person is calm and having a good day would be a good time to talk about how you can best support them when they feel meltdowns coming on, during a meltdown, and afterwards.
Also I think that practicing radical acceptance is key–not only for autistic loved ones, but for those of us on the spectrum, as well. I am autistic and just as much as my ability to pay attention to details is a part of who I am, meltdowns are also a part of who I am. I can get better at avoiding them, but overwhelm will still happen.
It doesn’t make me a bad person, it just makes me autistic. I tend to be a spiritual person, so I see myself exactly as God planned me to be. Learning how to accept and embrace my autistic self– that is my life’s goal.
- An Open Letter to Parents of Autistic Children. - November 22, 2019
- The Long Term Impact of Bullying - November 11, 2019
- Autistic Meltdowns: From the Inside - October 29, 2019
I have a comment on the new site layout over here… The quotes in the grey small font are really hard to read and I tend to skip them. Especially in this blog post, these quotes are an important part of the story and I feel really bad that I can’t read them. I hope someone can make them a bit bigger and increase the contrast a bit. 🙂
Oh, I know those meltdowns 🙁 Soon after we were married, I told my husband that I was having a bad day and therefore to be careful, HE, said well IF you know it, then just stop it (or words to that effect). I went off like my mum’s pressure cooker when it has gone over pressure — like beetroot juice all over the ceiling!!