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“Why are you freaking out?”
“That child having a tantrum just needs some discipline.”
“What a brat!”
“What a weirdo.”
People on the autism spectrum, and their loved ones, unfortunately hear phrases like these every day. Why? Because they often experience sensory overload when too much sensory stimulus is occurring at once. It can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s also associated with diagnoses like sensory processing disorder (SPD), chronic fatigue syndrome, fibromyalgia, post-traumatic stress disorder and more, although anyone can experience it. Often, a meltdown is the only way to relieve the building tension of sensory overload.
The outsider may perceive this as throwing a tantrum.
Let’s get a few things clear: a meltdown is not the same as a tantrum, and people who experience meltdowns do not choose to break down. Every person has different techniques for preventing or getting through meltdowns. Different coping mechanisms work for different people. What universally doesn’t work? Judgmental stares, points and especially comments. But we’re not trying to call you out if you’ve ever mistaken a meltdown for a tantrum — we’re just here to help you understand the difference.
We asked autistic individuals in our community to describe what it feels like to have a meltdown. Hopefully their insight will help spread some understanding and empathy.
1. “It literally feels like my head is imploding. Building up to it gets overwhelming, but an actual meltdown is just like… like your brain is ceasing to exist. Of course, it doesn’t actually, but I lose control of my muscles and ability to talk, I can’t modulate my voice or really send any signals from my brain to my body to calm down. It’s as though my brain… as a last-minute thing, sends a bunch of energy to the rest of my body, but there’s no instructions for how that energy should be used, so it just goes all over and is out of my control.” — Shayna G.
2. “It’s like a volcano. It builds and builds, and it builds so fast into a big explosion and it is fire that destroys until everything is gone.” — Devra R.
3. “I feel trapped. I have a weird tension in my head or my arms I want to get out. Everything around me suddenly feels extremely real like I’ve just come out of the water, I feel all sorts of emotions all at once and I want to run away from them all. I lose sight of what is socially appropriate and start to say things I either don’t mean or something I’ve wanted to say deep down. Whenever that happens I end up hurting someone or confusing everyone. People think because I ‘only’ have Asperger’s I shouldn’t be able to have meltdowns, but I am. I know they’re not as “destructive” or as “obvious” compared to a meltdown my brother would have, but I’m still capable of having them. People tell me to ‘calm down,’ which only makes me feel more frustrated because I already know that.
Once the meltdown is ‘over,’ I can’t explain to others why it happened because it isn’t until later at night (or later than that) when I realize it was a meltdown. By the time I come to the conclusion, it’s too late. Others would have forgotten what happened or wouldn’t care. Either way I end up looking like some sort of ‘attention seeker.’” — Chi C.
4. “It’s like I’m spinning out of control — no ground, no air, no sky, just me and fear and rage and desperation. My bones vibrate, grate, splinter. My chest is hooked up to a vacuum, pulling through my chest. I wake up with bruises and cuts and scrapes from grabbing onto anything, everything that may pull me back to earth. My memories of meltdowns are usually erased by morning, and I can only remember vague feelings. If i dwell on those too long, it becomes too intense, and I have another meltdown. I’m not ashamed of being autistic. I refuse to be. Just because it shapes who I am doesn’t mean I have to let other people decide how it will. But God, meltdowns are indescribable. Too big for my small body. Too big for this small planet. Painful, like razor blades, not over your skin, but over your soul. Your entire being is twisted by an outside force, and when people say ‘it’s just a noise,” “just an argument,” they show they truly do not understand. And often, the solution is simple. Often, I’m screaming for it. Make the buzzing stop.” — Holly H.
5. “Uncontrollable, almost like Jekyll and Hyde. It makes me feel like someone or something flipped a switch in my brain and took over my body, abolishing any rational thoughts, reactions, and communication. The blood in my head pounds, and everything in it magnifies more than it seems it can hold or handle. There’s a small section of me in the back that recognizes what’s going on and wants to stop it, but it can’t override the system. My primal base and flight-or-fight is on high gear, so I end up instinctively isolating myself to get anyway from any other living energy form. Only then can it have the space to breathe to start to calm down eventually.” — Laura S.
6. “It feels like all the pressure that has built up in me (like a fizzy drink) explodes, and you can’t stop, and you lose control until all the pressure is out, and then you sleep to regain strength.” — Lauren H.
7. “I lose complete control of my ability to regulate my emotions — the ‘filter’ has gone, and I lose the ability to stop obsessing over whatever is upsetting me. Sometimes I have uncontrollable urges to throw things and make a psychical expression, but this decreases my ability to articulate the problem. A vicious circle. If I am scared rather than angry I will lose the ability to speak and engage with the world and will feel the need to hide in a space for hours. Always, exhaustion follows.” — Kym F.
8. “Scary, like an out-of-body episode. I lose my ability to think or process, and can only feel. And I feel everything. Every noise, every draft. I want to scream, and sometimes I do, just wordless screaming. And all the while I feel like I’m watching myself in third person, and that tiny part of my brain that is still capable of rational thought keeps thinking, ‘Why am I doing this? Calm down, control it!’ But I can’t control it.” — Tiffany D.
9. “For me personally, it’s like a huge, overwhelming tidal wave of emotion and sensory awareness, building up and up, before crashing down horribly. I’ll often break down crying or in anger or both — leaving people around me offended and/or confused. It leaves me completely washed/burnt out from head to toe, inside and out, unable to talk or sometimes even move. It can be a total shut down where I can’t speak to verbalize what I’m thinking, which can be several things at once. I need time and quiet space to come around, away from people, where I can engage in a favorite repetitive activity such as artwork/fiber arts which I find very calming and which helps me move past how I’m feeling to think clearly and function normally again.” — Kath S.
10.“I feel like I just want to be alone, and usually that’s what i do! I isolate myself either in my room or I go to the forest just to walk. When I tell my friends, they think I’m weird because I just don’t want to be with anyone.” — Kasper M.
11. “It’s very intense and a build-up of extreme emotions all coming out at once. Sometimes, the only way you feel you can calm yourself down so I doesn’t last for hours is to hurt yourself because pain feels like a release of those extreme emotions.” — Kathryn B.
12. “In my head it sounds like a hundred voices all taking at once and wanting to scream.” — Richard T.
13. “It feels like I can’t handle things anymore, and I can’t stop my reaction to it all. As if I’m no longer in control of myself. So I end up either crying and hyperventilating or both. I think about each problem I have, try to come up with a solution to it, can’t, and let out the emotions. I repeat this process until the emotions are out. Sometimes, I need something to help stop the process (stimming, a weighted blanket, etc.) or it will just continue to escalate. It’s not fun, and I don’t like when it affects others around me, but it’s also necessary sometimes to sort of ‘reset’ my system.” — Erin C.
14. “Just awful. Like no-one understands, everyone’s laughing or staring at you, and you’re just ‘making excuses’ or ‘making it up.’ What could happen next? I get arrested, or get hurt, or hurt someone else? Unfortunately, this does, and has, happened.” — Shaun U.
15. “It’s like a train that won’t stop! … Once it’s over, I feel emotionally numb. After a good night sleep I’m ready to conquer the next day!” — Jordan S.
If you are on the autism spectrum, how would you describe what a meltdown feels like? Let us know in the comments below.