When parents ask these questions, they are usually looking for a behavioral response. This means they are looking for quick tips on managing the situation by doing specific things.
That kind of advice is not going to be very helpful. If your child is regularly melting down, that is a sign that their lifestyle is not suited to their neurology.
Meltdowns are terrifying experiences that can be traumatic. They are often humiliating for the child who is powerless to prevent or manage them. Just the fear of having a meltdown can cause a constant anxiety that underscores all interactions with the world— and more anxiety means more meltdowns.
Understanding Sensory Overstimulation
Imagine being in a room that’s so dark you can barely make out the outline of shapes around you. There are moving things in the room, and you don’t know what it is– maybe spiders or rats or snakes. Or people.
Some things you touch shock you, so you tuck your hands into your body or inside your sleeves. There are ten different radio stations blasting at the same time from speakers all around you, and some are mostly piercing and jarring static. You cover your ears.
You don’t know if something is crawling on you or not, but you feel like there is. You smack and swat at your skin.
Someone comes in and brings you food. They’re smiling and some light filters in. The food is slimy and smells of decay. Their smile intensifies and has become a threat. “You don’t like it? I made it just for you,” they say. In their eyes is contempt, disdain, and frustration. You look away.
They smile and speak to you, a clip in their voice that sounds hostile, but it’s not making any sense. You can’t understand their words through all the sounds happening around you. All you can understand is their tone, and they’re not happy— but you’re supposed to pretend to be happy because they’re smiling.
Everything feels like a threat. A thread from your shirt tickles the back of your arm. Is it a spider? You don’t know, but you swipe at your arm and want to tear off your clothes.
The person’s smile fades, and now they feel even more dangerous. There is an anger in their eyes so visceral that even looking at it is excruciating. But they want you to see it. They want you to know that they can make you pay, that they have more power, and that there is nothing resembling love in those eyes.
“Look at me while I’m talking to you,” they say. It’s a threat. Everything is a threat. You look away because in that stare is the promise of more pain to come. You fold into yourself, rocking, trying not to cry.
They get closer, putting their face right up to yours. You can feel their heat on your skin, already electrified and hyper-responsive by the threat of crawling things.
You want to tell them to back away, but that’s dangerous. They have already established they are not sympathetic. Your body revolts when they position themselves even closer, eye to eye.
Sensory Overstimulation is a Horror Movie
While that’s an unrealistic situation that might seem like a horror movie to you, that metaphor will seem like everyday life to many autistic people. It will seem to many autistic people to characterize their entire childhood.
That is not an exaggeration.
Sensory overstimulation or overwhelm happens when the brain cannot process all the information from the environment that it needs to process. It is as if a traffic jam happens in the brain, and traffic starts being redirected to the wrong places.
When there’s a threat— real or perceived— in the environment, the brain becomes hypervigilant. This means that it becomes acutely aware of sensory stimuli. Just like the aforementioned example with the crawling things in the dark room, you would become hypervigilant, investing so much of your brain’s processing power in being aware of what is touching your skin.
Needing to attend so carefully to so much stimuli— lights, sounds, smells, temperature shifts, etc. means autistic people live much of their lives in a hypervigilant state.
Hypervigilance is a symptom of PTSD. PTSD causes sensory processing disturbances. When an autistic person already has these sensory imbalances, they are at risk of developing trauma from everyday situations.
What happens to someone who experiences complex (ongoing) trauma in childhood?
What happens then? Their trauma becomes worse. Their hypervigilance increases, and they have only bad options:
1. They fawn
They learn to fawn over and please the people they view as a threat, finding their value in how useful they can be to someone they perceive as strong. This leads to a lifetime of selflessly serving dangerous people and people who seem powerful, taking orders to avoid conflict.
This is called social susceptibility, and people with this trauma response often end up in legal trouble in their teens and early adulthood because they have done the “dirty work” of dangerous people.
2. They disappear
They shut down and learn to make themselves invisible, finding their value in how much they can go unnoticed. They avoid failure and success because both can increase the target on their back.
This leads to a life of being unknown and unseen, making choices with the primary motivation being survival. They never seek out what they need to be happy and fulfilled because having nice things, or success, means people will notice and take those things or see them as competition.
3. They fight
They learn to fight and look for the fight in everything. They know that most environments and most relationships are full of threats to their autonomy and safety, so they look for the threats to extinguish them.
This person may be the anti-bully, actively squaring off with the biggest threat in any space. They are labeled oppositional, defiant, or aggressive. They don’t live for themselves, but to extinguish threats.
Trauma and Identity
You can imagine that you would very quickly melt down in the room of horrors in the aforementioned example. You’d lose your emotional and cognitive grip and spiral. When everything feels like a threat, while you’re already emotionally and neurologically struggling, all you are in that moment is someone who is acutely aware of threats.
In that room, you’re not a mom or dad. You’re not a Black or White or Native American person. You’re not a man or woman or nonbinary person. You’re not a piano player or great cook or lover of cats and dogs. You’re not a teacher or a coach or a therapist.
Your whole identity becomes someone who faces and attends to threats. That’s all you have the bandwidth to process.
Autistic people can be that overwhelmed and overstimulated by everyday life.
The social expectations to be still, be quiet, and follow all the nuanced social rules while pretending to not be suffering is too much for anyone— especially young children who need loving and compassionate adults to help them learn how to regulate and self advocate.
All kids need help with regulation. Their nervous systems are still developing. This is especially important for autistic children who have an unbalanced sensory profile— which means their nervous system may be hyper-responsive to certain kinds of stimulation and hypo-responsive to other kinds.
When your visual or auditory processing is slow, that means it’s harder to process what you see or hear. When you can’t process any more because the world hands you more than you can process, all visual and auditory input feels threatening.
Autistic children are predisposed to trauma because the world does not accommodate for— or acknowledge the existence of— their different ways of processing. This puts them at risk of never getting to know themselves outside of who they become when faced with trauma.
A person who does not get to have an identity outside of a person who responds to suffering is at tremendous risk of being exploited, developing addiction, developing profound mental illness, and entering into dangerous relationships.
This is not the life you want for your child. Don’t worry. You still have time.
What to do about aggressive meltdowns
Instead of a “do this and this” formula, we want you to have a paradigm shift in the way you approach parenting. You probably don’t realize how much your child is overstimulated and overwhelmed.
You might not realize how hard it is for them to find comfort or how little control they have over the neurological storm they experience that resembles a seizure more than a tantrum.
If you want a procedural approach to a paradigm shift, try working on these tips to change your perspective:
1. Stop thinking of aggressive meltdowns as behavior and start thinking of them as a medical symptom.
Understanding that your child is fighting an invisible neurological battle, similar to experiencing a seizure or night terror, will dramatically change the way you understand your child’s behavior.
Parents of epileptic children learn all they can about what triggers seizures and how to avoid those triggers. They understand that seizures can be dangerous and even life threatening. They know to look for signs of seizure auras— like changes in behavior, mood, cognition, coordination, or communication.
Similarly, when you start to realize that meltdowns are involuntary and medical, not just bad behavior, then you can commit yourself to learning about their triggers and sensory needs and adjusting their lives accordingly.
2. Be an accomplice to your child’s efforts to stay regulated.
If your child is too dysregulated, they will either see you as a threat or as an accomplice. Remember the imaginary story above? Imagine if the person who enters the room comes in and turns on the lights. They notice your distress and immediately turn off all the speakers. They sit near you and ask you what you need, not trying to make you attend to their comfort and emotion.
They ask you if you want to go somewhere else, or they make the room around you less terrifying and overwhelming. They let you know they understand you were suffering and actively seek out ways to increase your comfort.
You would see them as an accomplice, now, and immediately the world feels less scary. They know where the light switch and volume knobs are. They don’t place unspoken demands on you to attend to their comfort or meet their smile with your own. Their eyes do not require you to offer a gesture of submission.
This is what you need to be for your child. They need you to know when they’re suffering and not add to it by making them seem entitled or like a moral failure. Their distress is real, and understanding that is half the way to a paradigm shift.
3. Reduce uncertainty to reduce hypervigilance.
Plan your trip by explaining what you’re going to buy and how long you’re doing to be there. If they have the access to communicate what they want and enjoy, involve them in things like meal preparation.
If you were in a dark room with moving things in it, you’d be terrified of what that might be. If someone turns on the lights, you might realize those objects were just shadows.
Autistic kids are afraid of uncertainty because overstimulation is like being in a dark and unfamiliar room. Because they can’t process information and understand it when they’re overwhelmed, everything feels like a scary and unpredictable threat.
You can show them you’re an accomplice by showing them that you get that uncertain things are scary and you want to make sure they know you have their back.
4. Understand that your power differential is either a great source of anxiety or a great source of comfort.
If an autistic child sees you as someone who will weild authority just for the sake of control, then your presence as a parent will just add to the sense of threat they feel. However, if you use your authority as an accomplice to show them that you want them to be happy and thrive, then they will develop a healthy attachment to you.
The result will be that they fear less, better tolerate sensory stimuli, and are more willing to take risks– like going to the store.
If they see you as a safety net who wants them to enjoy their life, then scary things will feel less scary because a bigger, faster, stronger, wiser person will use their authority to protect and value and respect them, not shame them or regard them as a burden.
5. Always plan to buy them something, even if you’re poor.
I’ve got psychology and education degrees. I’ve spent fifteen years working with autistic people. I have a lot of credentials. But nothing prepared me more to be a parent to my autistic child than being a former autistic child myself.
I took everything so seriously. My anxiety was so extreme in childhood that I started begging God to kill me before I was out of kindergarten. I tried to take my life several times in elementary school. I had PTSD from a very young age.
I raise my child with express intentionality to avoid trauma. Grocery stores were the worst for me when I went with my mom. I had two younger brothers, both autistic and ADHD. My mom was always overwhelmed, and I learned to be hypervigilant about her stress, about money, about managing her emotions by trying to keep my brothers in line…
I was a problem child with “aggressive behaviors” because I lived in constant distress and hypervigilance.
I was fine with my grandparents. They would always buy me something. My grandfather would take my to work with him, and we’d stop at the corner store. He’d buy me a soda and we’d split it, or a candy bar, and we’d split it.
Splitting it was my favorite part. We were co-conspirators in all things. We would take a bite at the same time and smile at each other. He was the bigger, faster, stronger authority who kept me safe enough to let down my hypervigilance and be me.
I got to know who I was during those times I spent with him and took every opportunity to be at his side. He loved it, too. I never saw anything in his eyes, not even for a second, that felt like a threat.
I learned what I loved and what I hated around him, and all of that was okay. He taught me how to do his job at the water treatment plant, he taught me how to care for animals, he taught me how to solder and splice wires so that I could get the perfect sound and build myself a sensory cave made from cabinet speakers.
Being My Autistic Daughter’s Accomplice
Now, I am my daughter’s accomplice. We are talking all the way to the grocery store about what we’re going to see there, what toys we may play with, what foods we might buy.
I have no income. We are poor enough to experience food insecurity, but I always look forward the most to buying her something— a fun snack, a small toy, a succulent, a ball, a craft, or a picture book.
The simple act of making that plan gives us both a reason to go.
We focus on sharing simple pleasures and donate to friends what we don’t use so there’s not much focus on the material comforts or ownership. She asks how much something costs, or looks for the price, and puts it back if it’s expensive. She has no desperation or need to own things because she has no need to fight. She doesn’t look for comfort in objects because she trusts that her parents will provide that for her.
We are co-conspirators.
She knows her sensory needs and her wellness are valid needs I will use my authority to accommodate.
She’s an unreliable speaker– which means what she says is often not what she means and doesn’t make sense– and I just do my best with her communication. Sometimes we just go through the store taking turns saying words that are related somehow— space words, words that start with J, math words, etc. Sometimes we just take turns cracking up at each other’s nonsense words, like chorn, lubbage, boco, and leedle (her favorite stim word to say over and over).
She sticks to me because I’m her safety, her accomplice. I’m sure behaviorists would fault my parenting style as not setting her up to be more assimilated into society. They do that because they don’t know what it feels like to have an identity that is wholly defined by how they respond to trauma.
I don’t try to make my child act normal when I see someone staring. I just give those people the look that lets them know what happens to someone who threatens a wolf’s cub.
Then they are the ones who have trouble with eye contact. And they look away, and we go on about our lives.
I never learned how to stop being the person who looks for threats to extinguish. I never learned how to relax. But I did learn some things about who I was beyond the trauma and the hypervigilance and shame and “problem behaviors.”
I do try to change the whole world for my daughter and other kids like her, but that’s not going to be enough. It’s an impossible goal.
But maybe, if she knows who she is, she will be okay. If she knows that she deserves to exist as her authentic self, then she will be less threatened by people who think she needs to be seen and not heard or that she’s less entitled than other people to experience comfort and safety because she’s different.
Maybe she will be unapologetic about setting and maintaining boundaries so she doesn’t experience the exploitation and abuse I allowed to happen to me. Maybe she will not see her identity as nothing more than the person who responds to threats.
At least, for now, we have no more store meltdowns– mine or her’s.
Ask away– what questions would you like to have NeuroClastic contributors tackle? Let us know in the comments.
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Beautiful piece, as usual, Terra. I often had meltdowns at stores. I learned slowly to make them rarer, by using headphones.
Ah, that bit, “They do that because they don’t know what it feels like to …”
I have an impulse to offer a more global-scale finish to it,
“They do that because they don’t know what it feels like to be any way they are not.”
My sister sent me this article, and it brought me to tears. As an adult trying to sort out my diagnosis, past and present – it is extremely validating to know that the c-ptsd and ongoing trauma I deal with come from somewhere. Thank you for sharing this part of your life.
“identity that is wholly defined by how they respond to trauma.” Wow I had never thought of it like this and yes, exactly. This is how mainstream culture views autistic people and how many autistic people sadly come to view themselves. So many impulses I’ve had in raising my autistic sons are considered too sheltering by the therapists, teachers, well-meaning and oblivious family members. But my choices have always centered around reducing my kids exposure to trauma and getting out of trauma loops so that they can access calm, comfort, joy, engagement – what any parent would want their child to have access to. Thank you so much for this validating piece and putting into words what has felt unexplainable.
It’s always so healing for me to read your posts. I loved reading about your grandfather.
Thank you so much, Cathy. I find so much validation from your comments, too. <3
This post does an amazing job capturing what life can feel like a lot of the time for me. It also makes me aware of so much that I haven’t been able to understand, admit, or integrate. It’s life-changing to read this and feel my way through it.
There’s one thing I’d like to add to the all-too familiar picture of the parent-in-store-with-melting-down-child: it’s not always the case that parents are sincerely and innocently unsure what their children are going through during a meltdown and are “just trying to help” or “just doing the best they know how to do.” Some parents have a pretty good idea what’s going on (even if only in a vague, uncomprehending way) and they knowingly put their kids in situations where they’ll be likely to have a meltdown. This gives them (the parent) a dependable opportunity to indulge in a kind of socially accepted “meltdown” of their own—a fit of self-righteous rage and/or self-pity—all while appearing to be a good, responsible adult and receiving sympathy from other onlooking parents.
These kinds of parents might be on the spectrum themselves, but unknowingly. They, too, might be living in a state of chronic anxiety—and their children’s meltdowns might be triggering their own meltdown. But having learned that “adults aren’t supposed to have meltdowns,” they have learned to hide them under the guise of responding to their children’s meltdowns. They might literally be setting their kids up to have meltdowns or making them worse in order to serve their own unconscious psychological needs.
I guess what I’m really getting at is that it might not be enough to give even highly accurate information to some parents about these things. There might be a whole other level of introspection and self-awareness needed. But the pressure on parents to always see themselves as responsible and caring might make it hard to reach that level. So it might help to make this part of our conversations about parenting.
Great piece as usual and so personalised…grateful for that I just wanted to add …STICKING to the timings even in other situations but especially around family and friends stuff It may look like your little or big Autist is having a good time and temptng to extend Just dont if you want to maintain that Allyship
WOW, just WOW! This article is so powerful. As an SLP, I send you my sincerest “thank you” for so articulately sharing your story.
As a psychologist who uses both relational psychology and behaviorism to inform my work with autistic clients, (and as a mom of a 21 year old autistic), I want to say that not all behaviorists would fault an accomplice style of parenting. Behaviorism at its best asks how does an individual respond to their environment, and how can we as parents optimize that environment (both the social and sensory surround, the level and type of task demand, and also our interactions–down to the level of galvanic skin temperature and micro expressions, which arise from our core beliefs and ability to regulate as parents, and can’t be faked) to provide the best support for regulation and functioning and the highest quality of life for our child. Behaviorism actually fits very well with the Social Model of Disability which posits that the concept of disability is a construct largely created by the environment combined with social perception. It is actually easier to change the environment than to try to warp a person out of harmony with their own neurology through rewards and punishments. As you point out, that creates PTSD and hypervigilance, not change or development.
I love this article! Thank you