#autism meltdown
I looked up “how to manage autistic meltdowns” and all the sites were like “how to deal with your CHILD’S meltdowns” “tips for dealing with your SON, your non-adult child who is DEFINITELY MALE” like just tell me how to deal with my own meltdowns as an adult, please
“How should I help an autistic person who’s having a meltdown?”
This is a question that hundreds of people asked after my latest Twitter thread about Sia’s movie, where the autistic character is restrained in prone position while having a meltdown.
That post explains why & how prone restraint is dangerous and traumatic. But a lot of people were wondering what should be done to help an autistic person during a meltdown. What are the alternatives to restraint? What would I recommend, as someone who’s had countless severe meltdowns myself?
I generally advise against trying to assist with a meltdown unless you know the person. If they’re totally by themselves, then it’s a judgement call. But more often than not, the person will already have someone with them who can help. Additionally, having a stranger approach during a meltdown has a high chance of making the situation even more stressful for the autistic person. So only approach the person in this circumstance if you think it’s absolutely necessary and would definitely help. For example, if the person was lost and needed assistance getting back to a familiar location.
Okay, so, what do you do if assisting the person is the right role for you to take?
The first step when assisting with any meltdown, is to minimize sensory input and ensure physical safety. Meltdowns are the result of overstimulation, so it’s important to try and reduce the amount of external factors that could be causing overwhelm. It’s also important to ensure that the person is not in immediate danger. Often, solving for those two things will involve changing location.
This is complicated, and if a meltdown is already underway it might be impossible to change locations safely. Even if you do change locations, the meltdown has already started so it’s not just going to stop immediately. So, here are some suggestions for direct support to the person. All of this depends on the environment, the tools available, and your relationship to the person having the meltdown. Use your critical thinking skills to consider different types of responses in different scenarios.
If the person can’t speak: assess what communication methods they can use, and what kind of communication is necessary. If you need to collaborate with the person to find solutions (particularly if you’re in a public place), using an AAC app, a picture-based communication system, pen and paper, or sign language will probably be your best bet. If the person can’t access those things but is still able to nod & shake their head, make sure that any questions you ask are yes or no questions. If you ask something like “Do you want to stay or leave?” they won’t be able to respond. Instead say, “Do you want to stay?” and then if that answer isn’t clear, “Do you want to leave?”
If the person is in a loud or chaotic environment: try to remove them as soon as possible. If they stay in that situation, the meltdown will probably get worse. Sometimes it can be hard for autistic people to move on our own when we’re in a meltdown. We tend to get stuck. So having someone lead us elsewhere can be extremely helpful in a circumstance where we’re too overwhelmed to move ourselves or even know where to go.
If the person has comfort items: try to make sure they have access to them. Blankets, pillows, stuffed animals, water bottles, chewies, stim toys, etc. can all help comfort an autistic person who’s having a meltdown. Some of us have favorite items that we carry with us everywhere. Make sure we have those with us (assuming the items aren’t lost; and if they are lost, help us find them).
If the person is injuring themselves or others: thefirst step is to try and find replacements for those actions, that meet the same sensory need. If someone is biting themselves, try to find something else for them to bite into. Many autistic people have chewies and other stim toys that can help us in this type of situation. If we don’t have one with us, sometimes other kinds of strong sensory input can work as well. Something that has worked for me in the past, to keep me from biting or hitting myself, is to put something frozen on my lips or in my mouth. The cold is strong and provides a very similar sense of relief.
Many autistic people, myself included, find it beneficial to be hugged tightly and to have our hands or arms squeezed by someone else. But this really depends on the person and their sensory profile, as well as your relationship to the person. Some autistic people hate being touched during meltdowns. So you have to be aware of the individual and their specific needs.
The ONLY circumstance in which a person should be restrained, is if they are at imminent risk of causing injury to themselves or others. Noncompliance, angry speech, etc. are NOT a valid reason to restrain someone. And the typical kinds of restraint used on autistic people are actually quite dangerous. Prone restraint, for example, can be deadly. The only kind of restraint I’ve had used on me that was physically comfortable and felt safe, was when my mom sat behind me and put her legs over mine (leaving some space so that I could still bend my knees a little bit), and hugged me from behind so that my upper arms were against my sides but my hands & wrists weren’t being held and could still move.
I’ve been restrained in a basket hold and in prone position, and both of those positions were extremely painful and traumatic to me. There are probably forms of restraint similar to the one I described that would work but are not harmful and that don’t run the risk of injuring the person. The key I think is to have the person sitting upright, and to restrict the movement of their limbs without putting any pressure on their torso or running the risk of bending/stretching their limbs too far. And again, only do this if it’s absolutely necessary and all other options have been exhausted.
If the person is stimming, making loud noises, sobbing, screaming, and so on: Do not restrain the person, try to stop them from stimming, or try to stop them from making noise. As long as they’re physically safe, this needs to be allowed because it’s the only way for the energy of the meltdown to be released. If they’re screaming and it hurts your ears, put in earplugs to meet your own sensory needs. The truth is that there’s almost always nothing you can do to stop this aspect of a meltdown. All you can do is provide sensory tools, move the person to a safer and quieter location, and wait for it to pass.
Now, here are some reminders about meltdowns:
- They are neurological events that are beyond the person’s control
- Becoming angry at a person who’s having a meltdown will not help
- Meltdowns are caused by a buildup of overwhelming stimuli, not just one tiny thing
- They can be triggered more easily if the person is hungry or has low blood sugar (so if a person is getting cranky or seems like they might enter a meltdown, try to get them to eat something)
- Every autistic person is different, which means that all of our meltdowns look different and all of us need different things when we’re being helped
- You should talk to your autistic friends or relatives about how to help them during a meltdown when they’re in a calm and regulated state. If you can’t talk to the person, you can ask their caregivers what things tend to help the most
- Meltdowns often require a period of recovery and after-care. Make sure that the person is safe and comfortable as they recover
- While there are lots of things you can do to mitigate the chances of a meltdown happening, sometimes they just can’t be prevented. That’s okay, and it’s something you can prepare for
- Communication is key when caring for someone who’s having a meltdown. Let them know what you’re doing and why, ask simple questions when needed, and listen when they communicate with you
- What works during one meltdown might not work during the next one. Try to be flexible and ready to adapt as needed, because every situation is different
- It’s okay if you don’t get everything right. Situations like these are stressful and hard for everyone involved, so don’t worry about doing things perfectly. All that matters is that you’re trying your best
This is all I have to say for now, but there’s a lot that I’m forgetting about or just haven’t included because it would make the post too long.
If you have any questions about autism that you want answered quickly and you’re willing to pay me a small amount (starting at $3) via Venmo or PayPal, you can email your questions to me at [email protected] and I’ll get back to you with a detailed answer (and payment information) as soon as possible. This is something I’m starting as I expand the consulting side of my advocacy work. Thank you for your support!
~Eden
So-called “high functioning” autistic people have meltdowns, too.
There seems to be some sort of notion in the NT, parent-dominated autism sphere, that so-called “high functioning” autistics (read: conventionally intelligent autistic people who can speak) don’t have meltdowns like the kids who are “really” autistic. But if those parents were to dig a little deeper, I’m sure they’d find that there’s more to autistic self-advocates than meets the eye. Just because we don’t put our most difficult moments on display constantly, doesn’t mean those moments don’t exist.
Regardless of the fact that nobody is owed any piece of my story, it’s important to me to share what my meltdowns were like, from an insider’s perspective. This aspect of my childhood is what led to me getting diagnosed at age 8, which is early considering that I’m AFAB. So here I’m going to share something I wrote in 7th grade and revised today, about a meltdown I had while I was still in elementary school. I go into a lot of detail and the entire situation was very distressing, so if you aren’t in the headspace to read this please don’t.
Here it is:
My head is spinning, on constant rewind and replay. The argument comes in flashes, with angry faces and ears that never listen to me. I’m dizzy and nauseous and I feel my throat tighten as I start to cry. I don’t want to leave the living room and I don’t want to be touched. My dad yells, his voice unbearably loud. He says I have to go to my room, and threatens to carry me if I don’t. It doesn’t matter that I’m stuck on the couch, that I can’t move. He starts counting backwards from three.
“Three… two… one… okay! That was your choice.”
“No!” I yell, “No! No! No!”
But I know what comes next. He lunges towards the sofa and grabs me roughly by the armpits as I claw at the fabric and try to hold on. My hands slip, and he throws me over his shoulder. I scream, my voice tearing at my throat. I bite his shoulder, scratch his back, and try my best to knee him in the ribs. I twist and writhe in an attempt to escape his firm grasp. But he manages to hold onto my 10-year-old limbs as he stumbles down the hallway, then flings me onto my bedroom floor.
My spine slams into the hard linoleum tiles. Pain surges through my back and out through the top of my head. I yell, tears streaming down my face. Dad tries to leave me there on the ground, tries to slam the door behind him. I lunge at the doorknob as he leaves, twisting it to try and keep the door open, but he is stronger and locks it before I escape. Another piercing wail reverberates around the small room. I’m hurting my own ears, but I can’t stop. I hear my dad yell to my mom,
“It’s your turn! I can’t do this anymore!”
I throw my body at the door, ramming my shoulder and hip into it. I accomplish nothing, so I lay down and prepare my legs. Feet on white paint, I kick violently at the center of the door. This is a routine I’ve gotten used to over time. With my back on the cold tile floor, my legs battle with the wood. I cry in outrage, I shriek and sob, aware of the situation but unable to stop myself. I hear my mother approaching. She opens the door a crack and slips in, quickly slamming the door behind her. I leap at the handle and try to twist it open, but she grabs my wrists tightly. The blanket she had in her hands falls to the floor.
“Calm. down. I’m going to wrap you, don’t try to get away because the door is locked.”
She moves to the center of my bedroom and spreads the blanket out on the floor. She calls my father in for backup.
“Honey! Get in here! I need you to hold her down so that I can wrap her!”
He rushes into the room, and slams the door behind him. It sounds like a gunshot. They’re here to trap me like an animal, with earplugs in so they don’t have to feel the weight of my screams. I scurry to the farthest corner of the room and curl into a ball on the floor, still sobbing loudly. Don’t touch me. Don’t touch me. Don’t touch me. My dad yanks me off of the ground, throwing me unceremoniously onto the edge of the blanket in the middle of the floor. My back will be bruised tomorrow.
Mucus drips from my nose and onto his exposed arm. He attempts to stretch out my legs, but I bend and twist and press back against his force. My mom tears at my arms, trying to stretch them out by my sides, lay me out flat on the edge of the blanket. After minutes of struggle, I accidentally fall into a position where they can do what they wish. My mother seizes the opportunity, and throws half of the blanket over me while my dad keeps his knees on my legs and hands on my wrists. My throat is raw. I look at my parents through my tears, the water blurring and distorting their image. I can see that they are just as sweaty as I am. I try to fight back but it’s not enough as they roll my body in the blanket, my face grazing the floor with each rotation. My arms are pinned to my sides, my legs can’t bend, and I can’t turn my head so I lay there face down. Mom sits on my back and dad sits on my legs, and I feel the air leaving my lungs. I gasp and choke and tell them I can’t breathe, but they don’t listen. They never listen.
They won’t release me until I fall silent, but I do not close my mouth. My rage increases with my guilt. I won’t let them squeeze my breath away, but it must be my fault that they’re trying to. I wish I was good but they just don’t listen. With these thoughts, in a maddening burst of emotion, I tear myself out of the suffocating blanket. My parents both yell, try to keep my arms down and lungs compressed, but suddenly I’m too strong for them. My ears collapse inside themselves as I stumble to the ladder of my loft bed. They can’t reach me up there. I climb as I cry, crawl into the blankets and grab my water bottle. I drink to ease my pounding headache, the popped blood vessels in my face. Water will quench the angry fire.
…
Meltdowns like this didn’t just happen every once in a while. When I was a young child, they happened almost daily. And as I got older, they happened once or twice a week. They began going away when I started taking anxiety medication at age 12. But they still happen sometimes. The last massive one (like this narrative describes) happened when I was around 16- two years ago. But often, they were worse. I would break things, cut things, and smash things. I would threaten to hit my parents with metal objects if they got any closer to me. I did those things because I felt I had no other way to get my point across, since they were so dismissive of my boundaries and needs.
These experiences were very traumatic to me, mostly because of the way my parents always handled the situation- with anger, force, and disrespect. We’ve discussed this recently and they both understand how harmful their actions were, and feel remorseful. Regardless, it’s important for me to talk about this so that other parents of autistic kids don’t make the same mistakes my parents did.
To all the other autistic people who have gone through similar experiences during meltdowns: I see you. I am you. I’m with you.
~Eden
