This is an entry for the Blogging from A to Z Challenge. The entire month of April (except for Sundays) I will be blogging through the alphabet on autism-related topics to celebrate Autism Acceptance Month.
O is for Overloaded, Overstimulated, and Overwhelmed
I couldn’t write this essay until now because, for the last several days, I have been too much of these three things to be able to write about them.
There are several types of experiences that tend to make Autistic folks overloaded, overstimulated, or overwhelmed. As with most things, it’s different from person to person. Some people might respond to one of these triggers; others respond to all of them. Some might seem pretty solid most of the time, others might be always living so close to the anxious edge that it does not take very much at all to push them over. Many of us are both of these extremes, at different times and in different situations.
That’s an important thing to remember: when you’re talking about things like “severity” or “functioning levels”, it’s better to just step back and not use that framework at all and instead talk in terms of support needs. We all have support needs and the amount and type of support we need can change from day to day, throughout the day, from minute to minute, from year to year. We are dynamic, not static, and how much support we need, how overloaded we become, how we react to the stresses of life — these things are constantly changing. Over time, we develop coping abilities, develop new skills, grow up, gain perspective. In the moment, we find or put ourselves into environments with more or less stimulation, have unexpected encounters with other people, weather, animals, the sharp corners of furniture. Life is always changing and we are always changing along with it.
I don’t always know how much input I can handle. Think about that for a minute. I’m almost 50 years old. I’ve had decades of life in this body and brain. I’ve carefully studied life and my responses to it. And I still am not always sure whether I can handle something or not. Sometimes, a thing I could handle yesterday is out of my grasp today. Sometimes, a place that is usually good for me is very hard to cope with. Sometimes I’m not even sure what is stressing me out. Sometimes I’m not very good at realizing I’m stressed out and need to take a break. If I, a middle-aged adult, do not always know when I need to take a break, how much more must you be compassionate with a child who has not learned self-regulation skills yet?
So, the main triggers I have noticed in myself and others (which is to say these are not necessarily the only triggers of overload and I would welcome discussion of other sources of overload in the comments section) are sensory input, emotions (our own and others’), and demands exceeding our executive function abilities.
Sensory input was the one that most recently did me in. I am on a limited data plan when it comes to the internet and my writing process involves being online (pulling up links to include, looking up data to get facts correct, even popping back and forth between writing and other activities on days when I need to break what I’m doing into pieces.) My data plan re-sets mid month and I was low on data so I decided to go out to wifi spots to write.
Normally, I have little trouble working in public. I have a few favorite wifi spots, including a nice, quiet little independently-owned coffee shop. What I had forgotten was that it was Friday night. I keep a non-traditional schedule, so “weekend” doesn’t have a lot of personal meaning. I work every day, except when I need to rest. I don’t use a calendar to tell me when to work or rest because it is healthier for me to listen to my body’s cues. Except when I am so intent on doing something that I over-ride my body’s cues, not noticing how much it is screaming for something until it is screaming so loudly I am breaking apart. That’s what happened on Friday.
I started out in the coffee house and things were going fine until a large group of loud and high-pitched shrieking people sat right next to me. I put on headphones and started streaming Vivaldi, but the loud shrieks cut through everything and they HURT. Also, I have a condition called vestibular hyperacusis which can best be described as a sort of synaesthesia that translates sound into motion. The more common form of hyperacusis, cochlear hyperacusis, translates certain sounds into pain. Vestibular hyperacusis is pain plus dizziness, disorientation, nausea, etc. When I hear certain high-pitched sounds, it feels as if the floor is sliding away from under me. It’s like being sea sick. And it’s pretty horrible.
Then some musicians decided to play. Normally, that’s a good thing. Here’s an example of what I usually hear when musicians start picking up instruments at “my” coffee house:
I like that. It is imperfect, impromptu, and amateur but utterly delightful. This is not what was happening on Friday, though. Four people picked up instruments and started playing four different songs, each getting louder and louder, trying to out-play the other three. It was a horrible cacophony. I turned up the volume on Vivaldi but still couldn’t quite drown the noise out.
But I was stubbornly trying to finish writing an essay and I tried to “power through it.” This is a bad idea. And I know, partly, where it comes from. All my life, I’ve had people say, “it’s not that bad”, “just tough it out and you will get used to it,” “stop acting like such a baby!” I’ve internalized a lot of the shame and so when I should have just packed things up and gone home, I tried to power through it instead. I stayed until the coffee house closed and I got a lot of work done, despite the pain.
But I wasn’t finished. I should have just gone home, but instead I went to a 24-hour McDonald’s (still unaware that it was Friday night) to try to finish. A busload of pre-teens came in, hyper from some activity, and started playing Ping-Pong across the restaurant. Again, the noise was horrible and now I had balls whizzing past me, inches from my face. I stubbornly kept writing and finished my work and went home.
And slept for days. I slept all of Saturday and most of Sunday. Monday afternoon, I woke up long enough to re-schedule an appointment to Tuesday. Tuesday I made the appointment but spent the rest of the day before and after sleeping. Today, Wednesday, I slept twelve hours and I finally feel “right” enough to accomplish things again. Like writing this essay. Spending Friday evening fighting against excessive and overloading sensory input cost me about four days of . . . . of life, really. This is why “just tough it out” is such a bad idea. If I had listened to my body and listened to the advice I am always giving to other people, I would have gone home (or noticed it was Friday and .not gone out in the first place.) I stubbornly wanted to get some work done but by trying to force my way through it, I lost several days of productivity.
The root of the problem was that I was not treating myself the way I ask people to treat the Autistics in their lives. I should have removed myself from the stress, but I didn’t. Pay attention to sensory input and how it might be stressing out the Autistic people in your life (including yourself.) The grocery store is a really common place for meltdowns and it’s easy to see why: flickering fluorescent lights, bright colors shouting in chaotic ways, words everywhere you look, (other) children crying, people milling around (motion is one of my sensory sensitivities and it makes it hard to be in a crowded place because not only are there sounds and smells and touches but everything around me is moving in unpredictable ways!), painful and garbled announcements on overhead speakers, and in the warehouse groceries there is echoing sound and the shrill beeping of forklifts backing up. Is it any surprise that the grocery store is one of the biggest challenges for Autistic people as well as for the mothers of young Autistics? It’s a place we usually have to go if we want to eat but can be a sensory nightmare to be there.
Emotions are overloading and overwhelming. I laughed at my great-grandmother’s funeral and it (understandably) made people in my family very upset. But I loved Grandma Mary deeply. She was my favorite family member. She was the one who always accepted me, even when no one else could. She taught me what unconditional love looks like. I’m feeling very emotional right now, just remembering her and feeling the loss. Just about every day of my life, I wish she were still alive. But I laughed at her funeral because I was so emotionally overloaded and overwhelmed.
My cousin did her best to rescue me. She grabbed my hand and dragged me away saying, “excuse us, she’s really choked up!” to try to cover the giggles I was struggling to suppress. She pulled me after her into the bathroom and let me laugh in private. Laughter is contagious, so pretty soon she was laughing along with me, even though I know she deeply loved Grandma Mary, too. I am so grateful to my cousin for pulling me out of that situation — I rarely get such beautiful and compassionate support. And I am consoled by the knowledge that Grandma Mary would have loved and accepted me, even seeing me laugh at her funeral. She was always on my side and she knew I loved her. I wish I hadn’t pissed my family off so much. But I guess by that point they were used to seeing just about anything from me and just added it to the tally of strangeness.
Another emotionally overwhelming situation was when I tried to get lunch in the food court at my university during finals week. I had an exam coming up in 90 minutes and figured I ought to put food in me first. So I already had a huge stress overload as anyone who has ever survived a finals week would know. I went to a food vendor and asked for “Fire and Rice”, a favorite meal. I mentioned that I wanted the sriracha added during cooking, not after, because it tasted better that way. The cook said okay. Still, I watched him with an eagle eye because I had lots of experience with my food not being prepared the way I asked. He did not add sriracha. He quickly scooped everything into a bowl and I said, “you didn’t add sriracha.” He said, “I can put some in now if you want.” I said, “it’s better when it’s added during cooking.” He said, “I did add it. You weren’t watching.”
I was confronted with a dilemma. I was sure he hadn’t added it because I was carefully watching for him to. But what if he did add it and I asked him to put more and then the food was overseasoned and unpleasant to eat? Was he lying to me? I hate being lied to! Was he playing me for a fool? Had he really done something while I was watching for him to do it and I didn’t see?
I didn’t know what to do and I lost control. I figure the people seeing me melt down figured I was some kind of spoiled brat. Or maybe they were used to seeing this kind of behavior during finals week? I started to leave and a woman approached me timidly, as if she were frightened of me, trying to calm me down and get my needs met. I ended up running away to a hiding place in the bathroom where I sobbed and hit myself for an hour until I was calm enough to go take my exam.
It’s a small thing. Someone made my food wrong and possibly lied to me about it. But it was too much emotion on top of the high level of emotion I was already walking around with. (Everyone around me was stressed and emotional because of finals week and I am like a sponge, soaking in other people’s emotions as well. One thing I love about my boyfriend is how calm he remains in the face of just about anything. I tease him about it sometimes, but in truth I love it because it is so much easier for me to remain calm when the people around me are calm.)
Some ways to try to mitigate emotional overload include staying calm, even during a meltdown (I know, it’s not easy. But the less you react emotionally to an Autistic person’s emotional distress, the easier it will be for them to recover from emotional overstimulation), and helping the Autistic children in your life to learn to identify and name their own emotions. I find that the more I am able to recognize my emotional states (and it’s still not easy for me) the better I am at calming myself and, if needed and possible, removing myself from emotionally stressful situations. It’s a work in progress. I will probably be working on self-regulation skills for the rest of my life.
Executive function overload is also pretty common. One thing I’ve noticed that sets other people off but I seem to handle reasonably well (although I do it much more slowly than I observe non-Autistic people doing it) is filling out forms. I have watched people completely disintegrate over a job application or a medical form. It’s a strange thing, but I do understand and relate to it — someone who knows what should be put in the form boxes and who can read and write just falls apart at putting all that together. There’s a . . . stuckness. It’s part of why I am slow at filling out forms (dysgraphia – difficulty with handwriting – is the other part of why forms are extra tedious for me.) If someone you know has a hard time with forms, don’t shame them. Don’t tell them to suck it up because they have to learn some day. Help them! Help them with the form and, if you can, along the way talk about what you are doing to help them learn form-management skills.
Another overwhelming, executive-function related experience is housework and self-care. Every day, we are supposed to shower, brush our teeth, style our hair, clean our homes. It is overwhelming because there are so many tasks with so many steps. And if they go undone, there are even more tasks; it piles up. The worse it gets, the harder it is to start doing something about it. I keep checklists, broken down into the smallest bites, and it helps. But the moment things get away from me, the checklists don’t work any more. When things get too chaotic, you can’t fix thing A because thing B is in the way but you can’t fix thing B because thing A is in the way. Result: overwhelm, overload, breakdown.
Where it can get confusing is that the reactions to overload can be so different. Crying, meltdown, anger, self-injury, shutdown, long sleeps, overeating, undereating. Almost any kind of stress reaction you can imagine and some that never occurred to you. What makes it harder? The biggest challenge for me is when people blame me or mock me for struggling to cope. I’ve been told, “you just want to be upset.” No. No, I don’t. I don’t want to be upset at all. Being upset is horrible and stressful and exhausting. Being upset is what happens when a limit gets reached and I can’t pull back from the edge any more. Just like a person who needs to vomit and is stuck in public has no choice but to vomit in front of everyone, an Autistic who has reached overload and is stuck in public has no choice but to stress out in front of everyone.
It’s embarrassing. Humiliating. Traumatic. I never went back to that food court the rest of the time I was a student at that university. I couldn’t bear to revisit the scene of my trauma, the place of my shame. The loss of control is frightening. The loss of dignity is appalling. When a person pushes me to overload, especially when they over-ride my protests to do so, I experience a massive loss of trust and disassociate myself from that person. When someone tells you that they can’t handle something, your instinct may be to be a cheerleader and push them into it. “Of course you can! I’ll be right by your side the whole time!” “Don’t limit yourself with can’t!” “The only disability is a bad attitude!” There are all kinds of cheery platitudes meant to push people past their comfort zone. Sometimes that comfort zone is there for a very real reason and it’s important to respect that. Don’t lead with “of course you can!” Lead with, “can you tell me what makes it hard for you?”
Psychologists often get it all wrong. They try to apply psychology to episodes of overwhelm and meltdowns when what is primarily occurring is neurology. Yes, a psychological component can develop — going through multiple stressful breakdowns will leave a psychological mark on a person — but overload, overstimulation, overwhelm, meltdown, shutdown are manifestations of neurology, of having a nervous system that is wired differently and has a pattern of over-sensitivities and under-sensitivities that diverge from the expected. In saying this, I don’t intend to present a neurology/psychology schism because it’s all connected. I have more to say about this later, under a different letter of the alphabet that is yet to come.
Psychologists are trained to be alarmed by “self-isolation.” They often see a patient who presents with symptoms of depression (whether actual or mis-read. Sometimes our normal ways of being look like depression when they are not. Sometimes our depression does not look like depression. We talked about this before, earlier in the alphabet.) and they believe that the depression is caused by the self-isolation so they urge the person to get out more, “put yourself out there,” be more socially active. The problem with this is that some of us have chosen self-isolation because we are trying to avoid overload, overstimulation, and overwhelm. I love people. I think I may actually be a hidden extravert — hidden by my tendency toward sensory overload. I can’t “put myself out there” more than I do. Paradoxically, when I try to follow that sort of advice from a therapist, I become more depressed as a result.
It is okay to help us find our limits if we don’t know what they are. It is okay to help us grow past our limits in manageable bites that leave us in sufficient control. But it is imperative to respect our limits when we communicate them to you. We live in these bodies and we learn, over time, how much they can handle. If the amount we can cope with is less than you think is normal or acceptable, it is not your job to try to force us “out of our shells.” We aren’t in shells. We are practicing self-care. Respect that. Do not force us and do not shame us for having different limits than others. This is a very basic aspect of autism acceptance — accept our limits and follow our lead in moving past them. We live in a culture that teaches “no limits” but there really are limits. If you would not expect a person born into a biologically male body to become impregnated and carry a child in their non-existent womb, if you would not expect a human body to sprout wings and fly away, then you understand that there really are limits. Don’t ridicule or pressure others whose limits are not what you think they should be.
Help us to grow in ways that don’t cause us to fling ourselves to the floor or fall limply passive or scream and hurt ourselves. Help us to grow in ways that are not stressful and damaging. Research has shown that repeated stressful stimulation changes the brain in damaging ways. Do not damage us. Help us to find the ways to stay calm and focused. Help us to test our limits gently and with self-compassion. Respect us and do not seek to overload us — it is not the way to help us grow. “Get over it,” should never be your motto for us. Please, help us learn to protect ourselves and respect our “no.” Slow down. Listen to us. It may be horrible for you to have to be around us when we are overloaded, overstimulated, and overwhelmed, but I assure you it is infinitely more horrible for us to experience overload, overstimulation and overwhelm. Don’t be angry. Don’t blame us. Have compassion for our struggles and respect for everything we do to help ourselves.