Katkin

@katkinbarbarella | contributor
I am autistic and am recovering from abuse and PTSD. I am stable, clean and sober for 10 months.
Katkin

What Does an Autistic Shutdown Feel Like?

Autistic shutdowns happen when life starts to get too much for us. We’ve overwhelmed our processing skills and our brains begin to close down certain systems to preserve energy. Open too many windows on your computer, and you’ll find that everything starts to run slowly, the mouse might freeze and all that’s left is to give your computer a full shutdown and restart — after which it’ll act like nothing’s happened. Computers do this regardless of how important the work you were doing was, or what crucial point you were at in your game, or whether you did or didn’t hit save first. I’ve been autistic all my life, and must have had countless shutdowns as a kid. But the one that really mattered happened at age 16 — the age where expectations about my behavior shifted very quickly. What might have been brushed off as childish or impulsive behavior in a younger teen started to get weird for other people. I began to learn that as an adult, many people find who I am completely unacceptable. I’d started dating a guy I was really taken with, and we were at a party with some of my friends. The boy in question later turned completely physically abusive, but he started out with little tricks. In this instance, it was telling me that one of my friends had told him that I was nothing but an attention-seeking weirdo (they hadn’t actually said any of this), and that he should break up with me. He told me that he was considering it. Why he decided to raise this at a party I have no idea, but we decided to go for a walk and talk about it. It turned into an argument that was way beyond my social capabilities — I can’t function with conflict. And so I just sat down, in the middle of the pavement, started rocking and said nothing. Shutdowns are my way of conserving my remaining processing skills and rebooting myself. Usually, a shutdown doesn’t last too long. I’m still able to hear, comprehend and see while I’m having a shutdown. But talking is one of the most complex things my brain does, and so just like you may not be able to analyze a marketing report when you get very upset (I can), I can’t talk when I get worked up. As I can’t regulate my emotions very easily, talking plus conflict plus general burnout will result in either a shutdown or a meltdown. So what was this boy’s reaction when I had this shutdown? Complete fury. “See! You are an attention seeker!” and stormed off, leaving me, a 16-year-old autistic girl, completely alone in the street, unable to speak. Shutdowns can seem like diva behavior at best and like we’ve completely lost our minds at worst. Some people find them manipulative. Our minds are still physically present, but because we can’t make eye contact or respond, it seems like we’ve gone mentally AWOL. We may be able to do some talking, but it might be nonsense. I suppose to the untrained eye, shutdowns can seem outright theatrical. The fact that I’m usually mostly fine about 30 minutes later, just a bit shaken up, adds to the suspicion around undiagnosed autistic behavior. From my perspective, I am seriously unwell when this happens, I’m at my most vulnerable and require support. Some terrible things have happened to me whilst I’m having a shutdown and I’ve been unable to protect myself. The trigger of the shutdown doesn’t need to be a huge thing, like a conflict, either. It could be something very simple and inconsequential to people around us. Maybe we missed a bus, or can’t find our phone. I’ve heard people talk about autistics like we’re super dramatic for getting so destroyed about such little things, but this is unfair. Small things can set anybody off if they’re feeling mentally unwell enough. Say for example you’re grieving a loved one, and you’ve managed to keep it together and it’s your first day back at work. You go to print off a document and the printer breaks, you start to cry. Everybody knows you aren’t really crying about the printer — you’re crying because you’re feeling extremely emotionally fragile due to your loss. This is something humans generally understand, but autistic people often aren’t afforded this compassion when we get upset about the little things, because nobody sees the private battle we face every day when we face those thousand little things. They just see our demands and anger when our routine changes, or our dramatic meltdowns because there is nothing we want to eat in the supermarket. I can’t recognize faces or read facial expressions. I can never “read between the lines” of a conversation, and although I say what I mean and never have an underlying message, people never seem to take me at face value. Socializing is scary and unpredictable to me, and so when things I can usually predict change suddenly, it feels like the last straw. I’ve seen neurotypical people get very upset when they’re around a sensory aggravation, such as if they have a noisy neighbor whose footsteps can be heard at all times of the day. It can make them flat-out angry and act out. Most of the time when autistics are dealing with sensory disturbances, we try to keep it to ourselves. But if we’re feeling burnt out, exhausted, upset and then something awful happens to our senses (for me it’s getting crumbs or bits of dirt stuck to the bottom of my feet, or touching something that’s too dry) of course it’s going to make us react! There’s stuff going on in our day-to-day that others don’t see, sometimes because we aren’t the best at explaining or letting other people into our world. I can tell when I’m approaching a shutdown or meltdown. I call it autistic burnout. I’ve had too much negative sensory experience, too much social stress, and maybe other stuff is happening too. Talking starts to feel like wading through a swamp and all I want to do is get some alone time and reboot, but I can’t — as adult life rarely affords anyone that, autistic or not. Rebooting for autistic people might involve some things that would actually burn out other people, such as deep research or work. If we aren’t able to retreat and give our minds what they need, and we drag ourselves to a family party or to the supermarket, the consequences of that may be a shutdown or meltdown. Autistic people need protection when we’re having a shutdown. The public should be able to recognize an autistic shutdown and so should the police and social workers. I have been arrested for having a shutdown — seriously, I got thrown in jail overnight. (They said that I was drunk, and I was, but are autistic people not allowed to drink?) If you’re with someone who is having a shutdown, don’t try and make them respond with eye contact or words. Just allow them to be shut down and know that it will be over soon. It’s OK to say “Oh, you’re having a shutdown? That’s fine, I’ll wait here with you, just let me know when you’re ready to get started again and we’ll go home.” You don’t need to make them snap out of it. They may be able to use speech apps or write if they can’t verbally communicate, or nod yes or no. They will be aware of everything around them, so if people are standing by watching and saying humiliating things, try and protect the autistic person from that. I’m sure you can imagine that it’s really hard to hear someone say derogatory things about you and have no way of defending yourself. Maybe ask the person if they are able to move to somewhere where you’ll have more privacy. If you’re embarrassed, it’s likely that your autistic friend is embarrassed too and isn’t intentionally trying to humiliate you or themselves. Shouting and screaming at the autistic person will only make things worse. An autistic person sitting down silently with someone else sitting next to them doesn’t look too weird, although it might seem out of place. An autistic person screaming and rocking while you berate them will draw attention to you, and people may rightly recognize you as an aggressor towards a vulnerable person and they may intervene. Autistics don’t have shutdowns to try and ruin your birthday party, or to get attention, or to scare off your client. We can’t help when and where we experience a shutdown. Also know that if you were having an emotionally distressing experience, it’s likely that we would support you, and we really deserve the same support, because we get treated very badly in a lot of circumstances. We desperately need a break. So if you’ve read this whole article and have decided to recognize and support autistic shutdowns if and when they happen — thank you so much!

Katkin

What Does an Autistic Shutdown Feel Like?

Autistic shutdowns happen when life starts to get too much for us. We’ve overwhelmed our processing skills and our brains begin to close down certain systems to preserve energy. Open too many windows on your computer, and you’ll find that everything starts to run slowly, the mouse might freeze and all that’s left is to give your computer a full shutdown and restart — after which it’ll act like nothing’s happened. Computers do this regardless of how important the work you were doing was, or what crucial point you were at in your game, or whether you did or didn’t hit save first. I’ve been autistic all my life, and must have had countless shutdowns as a kid. But the one that really mattered happened at age 16 — the age where expectations about my behavior shifted very quickly. What might have been brushed off as childish or impulsive behavior in a younger teen started to get weird for other people. I began to learn that as an adult, many people find who I am completely unacceptable. I’d started dating a guy I was really taken with, and we were at a party with some of my friends. The boy in question later turned completely physically abusive, but he started out with little tricks. In this instance, it was telling me that one of my friends had told him that I was nothing but an attention-seeking weirdo (they hadn’t actually said any of this), and that he should break up with me. He told me that he was considering it. Why he decided to raise this at a party I have no idea, but we decided to go for a walk and talk about it. It turned into an argument that was way beyond my social capabilities — I can’t function with conflict. And so I just sat down, in the middle of the pavement, started rocking and said nothing. Shutdowns are my way of conserving my remaining processing skills and rebooting myself. Usually, a shutdown doesn’t last too long. I’m still able to hear, comprehend and see while I’m having a shutdown. But talking is one of the most complex things my brain does, and so just like you may not be able to analyze a marketing report when you get very upset (I can), I can’t talk when I get worked up. As I can’t regulate my emotions very easily, talking plus conflict plus general burnout will result in either a shutdown or a meltdown. So what was this boy’s reaction when I had this shutdown? Complete fury. “See! You are an attention seeker!” and stormed off, leaving me, a 16-year-old autistic girl, completely alone in the street, unable to speak. Shutdowns can seem like diva behavior at best and like we’ve completely lost our minds at worst. Some people find them manipulative. Our minds are still physically present, but because we can’t make eye contact or respond, it seems like we’ve gone mentally AWOL. We may be able to do some talking, but it might be nonsense. I suppose to the untrained eye, shutdowns can seem outright theatrical. The fact that I’m usually mostly fine about 30 minutes later, just a bit shaken up, adds to the suspicion around undiagnosed autistic behavior. From my perspective, I am seriously unwell when this happens, I’m at my most vulnerable and require support. Some terrible things have happened to me whilst I’m having a shutdown and I’ve been unable to protect myself. The trigger of the shutdown doesn’t need to be a huge thing, like a conflict, either. It could be something very simple and inconsequential to people around us. Maybe we missed a bus, or can’t find our phone. I’ve heard people talk about autistics like we’re super dramatic for getting so destroyed about such little things, but this is unfair. Small things can set anybody off if they’re feeling mentally unwell enough. Say for example you’re grieving a loved one, and you’ve managed to keep it together and it’s your first day back at work. You go to print off a document and the printer breaks, you start to cry. Everybody knows you aren’t really crying about the printer — you’re crying because you’re feeling extremely emotionally fragile due to your loss. This is something humans generally understand, but autistic people often aren’t afforded this compassion when we get upset about the little things, because nobody sees the private battle we face every day when we face those thousand little things. They just see our demands and anger when our routine changes, or our dramatic meltdowns because there is nothing we want to eat in the supermarket. I can’t recognize faces or read facial expressions. I can never “read between the lines” of a conversation, and although I say what I mean and never have an underlying message, people never seem to take me at face value. Socializing is scary and unpredictable to me, and so when things I can usually predict change suddenly, it feels like the last straw. I’ve seen neurotypical people get very upset when they’re around a sensory aggravation, such as if they have a noisy neighbor whose footsteps can be heard at all times of the day. It can make them flat-out angry and act out. Most of the time when autistics are dealing with sensory disturbances, we try to keep it to ourselves. But if we’re feeling burnt out, exhausted, upset and then something awful happens to our senses (for me it’s getting crumbs or bits of dirt stuck to the bottom of my feet, or touching something that’s too dry) of course it’s going to make us react! There’s stuff going on in our day-to-day that others don’t see, sometimes because we aren’t the best at explaining or letting other people into our world. I can tell when I’m approaching a shutdown or meltdown. I call it autistic burnout. I’ve had too much negative sensory experience, too much social stress, and maybe other stuff is happening too. Talking starts to feel like wading through a swamp and all I want to do is get some alone time and reboot, but I can’t — as adult life rarely affords anyone that, autistic or not. Rebooting for autistic people might involve some things that would actually burn out other people, such as deep research or work. If we aren’t able to retreat and give our minds what they need, and we drag ourselves to a family party or to the supermarket, the consequences of that may be a shutdown or meltdown. Autistic people need protection when we’re having a shutdown. The public should be able to recognize an autistic shutdown and so should the police and social workers. I have been arrested for having a shutdown — seriously, I got thrown in jail overnight. (They said that I was drunk, and I was, but are autistic people not allowed to drink?) If you’re with someone who is having a shutdown, don’t try and make them respond with eye contact or words. Just allow them to be shut down and know that it will be over soon. It’s OK to say “Oh, you’re having a shutdown? That’s fine, I’ll wait here with you, just let me know when you’re ready to get started again and we’ll go home.” You don’t need to make them snap out of it. They may be able to use speech apps or write if they can’t verbally communicate, or nod yes or no. They will be aware of everything around them, so if people are standing by watching and saying humiliating things, try and protect the autistic person from that. I’m sure you can imagine that it’s really hard to hear someone say derogatory things about you and have no way of defending yourself. Maybe ask the person if they are able to move to somewhere where you’ll have more privacy. If you’re embarrassed, it’s likely that your autistic friend is embarrassed too and isn’t intentionally trying to humiliate you or themselves. Shouting and screaming at the autistic person will only make things worse. An autistic person sitting down silently with someone else sitting next to them doesn’t look too weird, although it might seem out of place. An autistic person screaming and rocking while you berate them will draw attention to you, and people may rightly recognize you as an aggressor towards a vulnerable person and they may intervene. Autistics don’t have shutdowns to try and ruin your birthday party, or to get attention, or to scare off your client. We can’t help when and where we experience a shutdown. Also know that if you were having an emotionally distressing experience, it’s likely that we would support you, and we really deserve the same support, because we get treated very badly in a lot of circumstances. We desperately need a break. So if you’ve read this whole article and have decided to recognize and support autistic shutdowns if and when they happen — thank you so much!

Katkin

What Does an Autistic Shutdown Feel Like?

Autistic shutdowns happen when life starts to get too much for us. We’ve overwhelmed our processing skills and our brains begin to close down certain systems to preserve energy. Open too many windows on your computer, and you’ll find that everything starts to run slowly, the mouse might freeze and all that’s left is to give your computer a full shutdown and restart — after which it’ll act like nothing’s happened. Computers do this regardless of how important the work you were doing was, or what crucial point you were at in your game, or whether you did or didn’t hit save first. I’ve been autistic all my life, and must have had countless shutdowns as a kid. But the one that really mattered happened at age 16 — the age where expectations about my behavior shifted very quickly. What might have been brushed off as childish or impulsive behavior in a younger teen started to get weird for other people. I began to learn that as an adult, many people find who I am completely unacceptable. I’d started dating a guy I was really taken with, and we were at a party with some of my friends. The boy in question later turned completely physically abusive, but he started out with little tricks. In this instance, it was telling me that one of my friends had told him that I was nothing but an attention-seeking weirdo (they hadn’t actually said any of this), and that he should break up with me. He told me that he was considering it. Why he decided to raise this at a party I have no idea, but we decided to go for a walk and talk about it. It turned into an argument that was way beyond my social capabilities — I can’t function with conflict. And so I just sat down, in the middle of the pavement, started rocking and said nothing. Shutdowns are my way of conserving my remaining processing skills and rebooting myself. Usually, a shutdown doesn’t last too long. I’m still able to hear, comprehend and see while I’m having a shutdown. But talking is one of the most complex things my brain does, and so just like you may not be able to analyze a marketing report when you get very upset (I can), I can’t talk when I get worked up. As I can’t regulate my emotions very easily, talking plus conflict plus general burnout will result in either a shutdown or a meltdown. So what was this boy’s reaction when I had this shutdown? Complete fury. “See! You are an attention seeker!” and stormed off, leaving me, a 16-year-old autistic girl, completely alone in the street, unable to speak. Shutdowns can seem like diva behavior at best and like we’ve completely lost our minds at worst. Some people find them manipulative. Our minds are still physically present, but because we can’t make eye contact or respond, it seems like we’ve gone mentally AWOL. We may be able to do some talking, but it might be nonsense. I suppose to the untrained eye, shutdowns can seem outright theatrical. The fact that I’m usually mostly fine about 30 minutes later, just a bit shaken up, adds to the suspicion around undiagnosed autistic behavior. From my perspective, I am seriously unwell when this happens, I’m at my most vulnerable and require support. Some terrible things have happened to me whilst I’m having a shutdown and I’ve been unable to protect myself. The trigger of the shutdown doesn’t need to be a huge thing, like a conflict, either. It could be something very simple and inconsequential to people around us. Maybe we missed a bus, or can’t find our phone. I’ve heard people talk about autistics like we’re super dramatic for getting so destroyed about such little things, but this is unfair. Small things can set anybody off if they’re feeling mentally unwell enough. Say for example you’re grieving a loved one, and you’ve managed to keep it together and it’s your first day back at work. You go to print off a document and the printer breaks, you start to cry. Everybody knows you aren’t really crying about the printer — you’re crying because you’re feeling extremely emotionally fragile due to your loss. This is something humans generally understand, but autistic people often aren’t afforded this compassion when we get upset about the little things, because nobody sees the private battle we face every day when we face those thousand little things. They just see our demands and anger when our routine changes, or our dramatic meltdowns because there is nothing we want to eat in the supermarket. I can’t recognize faces or read facial expressions. I can never “read between the lines” of a conversation, and although I say what I mean and never have an underlying message, people never seem to take me at face value. Socializing is scary and unpredictable to me, and so when things I can usually predict change suddenly, it feels like the last straw. I’ve seen neurotypical people get very upset when they’re around a sensory aggravation, such as if they have a noisy neighbor whose footsteps can be heard at all times of the day. It can make them flat-out angry and act out. Most of the time when autistics are dealing with sensory disturbances, we try to keep it to ourselves. But if we’re feeling burnt out, exhausted, upset and then something awful happens to our senses (for me it’s getting crumbs or bits of dirt stuck to the bottom of my feet, or touching something that’s too dry) of course it’s going to make us react! There’s stuff going on in our day-to-day that others don’t see, sometimes because we aren’t the best at explaining or letting other people into our world. I can tell when I’m approaching a shutdown or meltdown. I call it autistic burnout. I’ve had too much negative sensory experience, too much social stress, and maybe other stuff is happening too. Talking starts to feel like wading through a swamp and all I want to do is get some alone time and reboot, but I can’t — as adult life rarely affords anyone that, autistic or not. Rebooting for autistic people might involve some things that would actually burn out other people, such as deep research or work. If we aren’t able to retreat and give our minds what they need, and we drag ourselves to a family party or to the supermarket, the consequences of that may be a shutdown or meltdown. Autistic people need protection when we’re having a shutdown. The public should be able to recognize an autistic shutdown and so should the police and social workers. I have been arrested for having a shutdown — seriously, I got thrown in jail overnight. (They said that I was drunk, and I was, but are autistic people not allowed to drink?) If you’re with someone who is having a shutdown, don’t try and make them respond with eye contact or words. Just allow them to be shut down and know that it will be over soon. It’s OK to say “Oh, you’re having a shutdown? That’s fine, I’ll wait here with you, just let me know when you’re ready to get started again and we’ll go home.” You don’t need to make them snap out of it. They may be able to use speech apps or write if they can’t verbally communicate, or nod yes or no. They will be aware of everything around them, so if people are standing by watching and saying humiliating things, try and protect the autistic person from that. I’m sure you can imagine that it’s really hard to hear someone say derogatory things about you and have no way of defending yourself. Maybe ask the person if they are able to move to somewhere where you’ll have more privacy. If you’re embarrassed, it’s likely that your autistic friend is embarrassed too and isn’t intentionally trying to humiliate you or themselves. Shouting and screaming at the autistic person will only make things worse. An autistic person sitting down silently with someone else sitting next to them doesn’t look too weird, although it might seem out of place. An autistic person screaming and rocking while you berate them will draw attention to you, and people may rightly recognize you as an aggressor towards a vulnerable person and they may intervene. Autistics don’t have shutdowns to try and ruin your birthday party, or to get attention, or to scare off your client. We can’t help when and where we experience a shutdown. Also know that if you were having an emotionally distressing experience, it’s likely that we would support you, and we really deserve the same support, because we get treated very badly in a lot of circumstances. We desperately need a break. So if you’ve read this whole article and have decided to recognize and support autistic shutdowns if and when they happen — thank you so much!

Katkin

What Does an Autistic Shutdown Feel Like?

Autistic shutdowns happen when life starts to get too much for us. We’ve overwhelmed our processing skills and our brains begin to close down certain systems to preserve energy. Open too many windows on your computer, and you’ll find that everything starts to run slowly, the mouse might freeze and all that’s left is to give your computer a full shutdown and restart — after which it’ll act like nothing’s happened. Computers do this regardless of how important the work you were doing was, or what crucial point you were at in your game, or whether you did or didn’t hit save first. I’ve been autistic all my life, and must have had countless shutdowns as a kid. But the one that really mattered happened at age 16 — the age where expectations about my behavior shifted very quickly. What might have been brushed off as childish or impulsive behavior in a younger teen started to get weird for other people. I began to learn that as an adult, many people find who I am completely unacceptable. I’d started dating a guy I was really taken with, and we were at a party with some of my friends. The boy in question later turned completely physically abusive, but he started out with little tricks. In this instance, it was telling me that one of my friends had told him that I was nothing but an attention-seeking weirdo (they hadn’t actually said any of this), and that he should break up with me. He told me that he was considering it. Why he decided to raise this at a party I have no idea, but we decided to go for a walk and talk about it. It turned into an argument that was way beyond my social capabilities — I can’t function with conflict. And so I just sat down, in the middle of the pavement, started rocking and said nothing. Shutdowns are my way of conserving my remaining processing skills and rebooting myself. Usually, a shutdown doesn’t last too long. I’m still able to hear, comprehend and see while I’m having a shutdown. But talking is one of the most complex things my brain does, and so just like you may not be able to analyze a marketing report when you get very upset (I can), I can’t talk when I get worked up. As I can’t regulate my emotions very easily, talking plus conflict plus general burnout will result in either a shutdown or a meltdown. So what was this boy’s reaction when I had this shutdown? Complete fury. “See! You are an attention seeker!” and stormed off, leaving me, a 16-year-old autistic girl, completely alone in the street, unable to speak. Shutdowns can seem like diva behavior at best and like we’ve completely lost our minds at worst. Some people find them manipulative. Our minds are still physically present, but because we can’t make eye contact or respond, it seems like we’ve gone mentally AWOL. We may be able to do some talking, but it might be nonsense. I suppose to the untrained eye, shutdowns can seem outright theatrical. The fact that I’m usually mostly fine about 30 minutes later, just a bit shaken up, adds to the suspicion around undiagnosed autistic behavior. From my perspective, I am seriously unwell when this happens, I’m at my most vulnerable and require support. Some terrible things have happened to me whilst I’m having a shutdown and I’ve been unable to protect myself. The trigger of the shutdown doesn’t need to be a huge thing, like a conflict, either. It could be something very simple and inconsequential to people around us. Maybe we missed a bus, or can’t find our phone. I’ve heard people talk about autistics like we’re super dramatic for getting so destroyed about such little things, but this is unfair. Small things can set anybody off if they’re feeling mentally unwell enough. Say for example you’re grieving a loved one, and you’ve managed to keep it together and it’s your first day back at work. You go to print off a document and the printer breaks, you start to cry. Everybody knows you aren’t really crying about the printer — you’re crying because you’re feeling extremely emotionally fragile due to your loss. This is something humans generally understand, but autistic people often aren’t afforded this compassion when we get upset about the little things, because nobody sees the private battle we face every day when we face those thousand little things. They just see our demands and anger when our routine changes, or our dramatic meltdowns because there is nothing we want to eat in the supermarket. I can’t recognize faces or read facial expressions. I can never “read between the lines” of a conversation, and although I say what I mean and never have an underlying message, people never seem to take me at face value. Socializing is scary and unpredictable to me, and so when things I can usually predict change suddenly, it feels like the last straw. I’ve seen neurotypical people get very upset when they’re around a sensory aggravation, such as if they have a noisy neighbor whose footsteps can be heard at all times of the day. It can make them flat-out angry and act out. Most of the time when autistics are dealing with sensory disturbances, we try to keep it to ourselves. But if we’re feeling burnt out, exhausted, upset and then something awful happens to our senses (for me it’s getting crumbs or bits of dirt stuck to the bottom of my feet, or touching something that’s too dry) of course it’s going to make us react! There’s stuff going on in our day-to-day that others don’t see, sometimes because we aren’t the best at explaining or letting other people into our world. I can tell when I’m approaching a shutdown or meltdown. I call it autistic burnout. I’ve had too much negative sensory experience, too much social stress, and maybe other stuff is happening too. Talking starts to feel like wading through a swamp and all I want to do is get some alone time and reboot, but I can’t — as adult life rarely affords anyone that, autistic or not. Rebooting for autistic people might involve some things that would actually burn out other people, such as deep research or work. If we aren’t able to retreat and give our minds what they need, and we drag ourselves to a family party or to the supermarket, the consequences of that may be a shutdown or meltdown. Autistic people need protection when we’re having a shutdown. The public should be able to recognize an autistic shutdown and so should the police and social workers. I have been arrested for having a shutdown — seriously, I got thrown in jail overnight. (They said that I was drunk, and I was, but are autistic people not allowed to drink?) If you’re with someone who is having a shutdown, don’t try and make them respond with eye contact or words. Just allow them to be shut down and know that it will be over soon. It’s OK to say “Oh, you’re having a shutdown? That’s fine, I’ll wait here with you, just let me know when you’re ready to get started again and we’ll go home.” You don’t need to make them snap out of it. They may be able to use speech apps or write if they can’t verbally communicate, or nod yes or no. They will be aware of everything around them, so if people are standing by watching and saying humiliating things, try and protect the autistic person from that. I’m sure you can imagine that it’s really hard to hear someone say derogatory things about you and have no way of defending yourself. Maybe ask the person if they are able to move to somewhere where you’ll have more privacy. If you’re embarrassed, it’s likely that your autistic friend is embarrassed too and isn’t intentionally trying to humiliate you or themselves. Shouting and screaming at the autistic person will only make things worse. An autistic person sitting down silently with someone else sitting next to them doesn’t look too weird, although it might seem out of place. An autistic person screaming and rocking while you berate them will draw attention to you, and people may rightly recognize you as an aggressor towards a vulnerable person and they may intervene. Autistics don’t have shutdowns to try and ruin your birthday party, or to get attention, or to scare off your client. We can’t help when and where we experience a shutdown. Also know that if you were having an emotionally distressing experience, it’s likely that we would support you, and we really deserve the same support, because we get treated very badly in a lot of circumstances. We desperately need a break. So if you’ve read this whole article and have decided to recognize and support autistic shutdowns if and when they happen — thank you so much!

Katkin

What Does an Autistic Shutdown Feel Like?

Autistic shutdowns happen when life starts to get too much for us. We’ve overwhelmed our processing skills and our brains begin to close down certain systems to preserve energy. Open too many windows on your computer, and you’ll find that everything starts to run slowly, the mouse might freeze and all that’s left is to give your computer a full shutdown and restart — after which it’ll act like nothing’s happened. Computers do this regardless of how important the work you were doing was, or what crucial point you were at in your game, or whether you did or didn’t hit save first. I’ve been autistic all my life, and must have had countless shutdowns as a kid. But the one that really mattered happened at age 16 — the age where expectations about my behavior shifted very quickly. What might have been brushed off as childish or impulsive behavior in a younger teen started to get weird for other people. I began to learn that as an adult, many people find who I am completely unacceptable. I’d started dating a guy I was really taken with, and we were at a party with some of my friends. The boy in question later turned completely physically abusive, but he started out with little tricks. In this instance, it was telling me that one of my friends had told him that I was nothing but an attention-seeking weirdo (they hadn’t actually said any of this), and that he should break up with me. He told me that he was considering it. Why he decided to raise this at a party I have no idea, but we decided to go for a walk and talk about it. It turned into an argument that was way beyond my social capabilities — I can’t function with conflict. And so I just sat down, in the middle of the pavement, started rocking and said nothing. Shutdowns are my way of conserving my remaining processing skills and rebooting myself. Usually, a shutdown doesn’t last too long. I’m still able to hear, comprehend and see while I’m having a shutdown. But talking is one of the most complex things my brain does, and so just like you may not be able to analyze a marketing report when you get very upset (I can), I can’t talk when I get worked up. As I can’t regulate my emotions very easily, talking plus conflict plus general burnout will result in either a shutdown or a meltdown. So what was this boy’s reaction when I had this shutdown? Complete fury. “See! You are an attention seeker!” and stormed off, leaving me, a 16-year-old autistic girl, completely alone in the street, unable to speak. Shutdowns can seem like diva behavior at best and like we’ve completely lost our minds at worst. Some people find them manipulative. Our minds are still physically present, but because we can’t make eye contact or respond, it seems like we’ve gone mentally AWOL. We may be able to do some talking, but it might be nonsense. I suppose to the untrained eye, shutdowns can seem outright theatrical. The fact that I’m usually mostly fine about 30 minutes later, just a bit shaken up, adds to the suspicion around undiagnosed autistic behavior. From my perspective, I am seriously unwell when this happens, I’m at my most vulnerable and require support. Some terrible things have happened to me whilst I’m having a shutdown and I’ve been unable to protect myself. The trigger of the shutdown doesn’t need to be a huge thing, like a conflict, either. It could be something very simple and inconsequential to people around us. Maybe we missed a bus, or can’t find our phone. I’ve heard people talk about autistics like we’re super dramatic for getting so destroyed about such little things, but this is unfair. Small things can set anybody off if they’re feeling mentally unwell enough. Say for example you’re grieving a loved one, and you’ve managed to keep it together and it’s your first day back at work. You go to print off a document and the printer breaks, you start to cry. Everybody knows you aren’t really crying about the printer — you’re crying because you’re feeling extremely emotionally fragile due to your loss. This is something humans generally understand, but autistic people often aren’t afforded this compassion when we get upset about the little things, because nobody sees the private battle we face every day when we face those thousand little things. They just see our demands and anger when our routine changes, or our dramatic meltdowns because there is nothing we want to eat in the supermarket. I can’t recognize faces or read facial expressions. I can never “read between the lines” of a conversation, and although I say what I mean and never have an underlying message, people never seem to take me at face value. Socializing is scary and unpredictable to me, and so when things I can usually predict change suddenly, it feels like the last straw. I’ve seen neurotypical people get very upset when they’re around a sensory aggravation, such as if they have a noisy neighbor whose footsteps can be heard at all times of the day. It can make them flat-out angry and act out. Most of the time when autistics are dealing with sensory disturbances, we try to keep it to ourselves. But if we’re feeling burnt out, exhausted, upset and then something awful happens to our senses (for me it’s getting crumbs or bits of dirt stuck to the bottom of my feet, or touching something that’s too dry) of course it’s going to make us react! There’s stuff going on in our day-to-day that others don’t see, sometimes because we aren’t the best at explaining or letting other people into our world. I can tell when I’m approaching a shutdown or meltdown. I call it autistic burnout. I’ve had too much negative sensory experience, too much social stress, and maybe other stuff is happening too. Talking starts to feel like wading through a swamp and all I want to do is get some alone time and reboot, but I can’t — as adult life rarely affords anyone that, autistic or not. Rebooting for autistic people might involve some things that would actually burn out other people, such as deep research or work. If we aren’t able to retreat and give our minds what they need, and we drag ourselves to a family party or to the supermarket, the consequences of that may be a shutdown or meltdown. Autistic people need protection when we’re having a shutdown. The public should be able to recognize an autistic shutdown and so should the police and social workers. I have been arrested for having a shutdown — seriously, I got thrown in jail overnight. (They said that I was drunk, and I was, but are autistic people not allowed to drink?) If you’re with someone who is having a shutdown, don’t try and make them respond with eye contact or words. Just allow them to be shut down and know that it will be over soon. It’s OK to say “Oh, you’re having a shutdown? That’s fine, I’ll wait here with you, just let me know when you’re ready to get started again and we’ll go home.” You don’t need to make them snap out of it. They may be able to use speech apps or write if they can’t verbally communicate, or nod yes or no. They will be aware of everything around them, so if people are standing by watching and saying humiliating things, try and protect the autistic person from that. I’m sure you can imagine that it’s really hard to hear someone say derogatory things about you and have no way of defending yourself. Maybe ask the person if they are able to move to somewhere where you’ll have more privacy. If you’re embarrassed, it’s likely that your autistic friend is embarrassed too and isn’t intentionally trying to humiliate you or themselves. Shouting and screaming at the autistic person will only make things worse. An autistic person sitting down silently with someone else sitting next to them doesn’t look too weird, although it might seem out of place. An autistic person screaming and rocking while you berate them will draw attention to you, and people may rightly recognize you as an aggressor towards a vulnerable person and they may intervene. Autistics don’t have shutdowns to try and ruin your birthday party, or to get attention, or to scare off your client. We can’t help when and where we experience a shutdown. Also know that if you were having an emotionally distressing experience, it’s likely that we would support you, and we really deserve the same support, because we get treated very badly in a lot of circumstances. We desperately need a break. So if you’ve read this whole article and have decided to recognize and support autistic shutdowns if and when they happen — thank you so much!

Katkin

What Does an Autistic Shutdown Feel Like?

Autistic shutdowns happen when life starts to get too much for us. We’ve overwhelmed our processing skills and our brains begin to close down certain systems to preserve energy. Open too many windows on your computer, and you’ll find that everything starts to run slowly, the mouse might freeze and all that’s left is to give your computer a full shutdown and restart — after which it’ll act like nothing’s happened. Computers do this regardless of how important the work you were doing was, or what crucial point you were at in your game, or whether you did or didn’t hit save first. I’ve been autistic all my life, and must have had countless shutdowns as a kid. But the one that really mattered happened at age 16 — the age where expectations about my behavior shifted very quickly. What might have been brushed off as childish or impulsive behavior in a younger teen started to get weird for other people. I began to learn that as an adult, many people find who I am completely unacceptable. I’d started dating a guy I was really taken with, and we were at a party with some of my friends. The boy in question later turned completely physically abusive, but he started out with little tricks. In this instance, it was telling me that one of my friends had told him that I was nothing but an attention-seeking weirdo (they hadn’t actually said any of this), and that he should break up with me. He told me that he was considering it. Why he decided to raise this at a party I have no idea, but we decided to go for a walk and talk about it. It turned into an argument that was way beyond my social capabilities — I can’t function with conflict. And so I just sat down, in the middle of the pavement, started rocking and said nothing. Shutdowns are my way of conserving my remaining processing skills and rebooting myself. Usually, a shutdown doesn’t last too long. I’m still able to hear, comprehend and see while I’m having a shutdown. But talking is one of the most complex things my brain does, and so just like you may not be able to analyze a marketing report when you get very upset (I can), I can’t talk when I get worked up. As I can’t regulate my emotions very easily, talking plus conflict plus general burnout will result in either a shutdown or a meltdown. So what was this boy’s reaction when I had this shutdown? Complete fury. “See! You are an attention seeker!” and stormed off, leaving me, a 16-year-old autistic girl, completely alone in the street, unable to speak. Shutdowns can seem like diva behavior at best and like we’ve completely lost our minds at worst. Some people find them manipulative. Our minds are still physically present, but because we can’t make eye contact or respond, it seems like we’ve gone mentally AWOL. We may be able to do some talking, but it might be nonsense. I suppose to the untrained eye, shutdowns can seem outright theatrical. The fact that I’m usually mostly fine about 30 minutes later, just a bit shaken up, adds to the suspicion around undiagnosed autistic behavior. From my perspective, I am seriously unwell when this happens, I’m at my most vulnerable and require support. Some terrible things have happened to me whilst I’m having a shutdown and I’ve been unable to protect myself. The trigger of the shutdown doesn’t need to be a huge thing, like a conflict, either. It could be something very simple and inconsequential to people around us. Maybe we missed a bus, or can’t find our phone. I’ve heard people talk about autistics like we’re super dramatic for getting so destroyed about such little things, but this is unfair. Small things can set anybody off if they’re feeling mentally unwell enough. Say for example you’re grieving a loved one, and you’ve managed to keep it together and it’s your first day back at work. You go to print off a document and the printer breaks, you start to cry. Everybody knows you aren’t really crying about the printer — you’re crying because you’re feeling extremely emotionally fragile due to your loss. This is something humans generally understand, but autistic people often aren’t afforded this compassion when we get upset about the little things, because nobody sees the private battle we face every day when we face those thousand little things. They just see our demands and anger when our routine changes, or our dramatic meltdowns because there is nothing we want to eat in the supermarket. I can’t recognize faces or read facial expressions. I can never “read between the lines” of a conversation, and although I say what I mean and never have an underlying message, people never seem to take me at face value. Socializing is scary and unpredictable to me, and so when things I can usually predict change suddenly, it feels like the last straw. I’ve seen neurotypical people get very upset when they’re around a sensory aggravation, such as if they have a noisy neighbor whose footsteps can be heard at all times of the day. It can make them flat-out angry and act out. Most of the time when autistics are dealing with sensory disturbances, we try to keep it to ourselves. But if we’re feeling burnt out, exhausted, upset and then something awful happens to our senses (for me it’s getting crumbs or bits of dirt stuck to the bottom of my feet, or touching something that’s too dry) of course it’s going to make us react! There’s stuff going on in our day-to-day that others don’t see, sometimes because we aren’t the best at explaining or letting other people into our world. I can tell when I’m approaching a shutdown or meltdown. I call it autistic burnout. I’ve had too much negative sensory experience, too much social stress, and maybe other stuff is happening too. Talking starts to feel like wading through a swamp and all I want to do is get some alone time and reboot, but I can’t — as adult life rarely affords anyone that, autistic or not. Rebooting for autistic people might involve some things that would actually burn out other people, such as deep research or work. If we aren’t able to retreat and give our minds what they need, and we drag ourselves to a family party or to the supermarket, the consequences of that may be a shutdown or meltdown. Autistic people need protection when we’re having a shutdown. The public should be able to recognize an autistic shutdown and so should the police and social workers. I have been arrested for having a shutdown — seriously, I got thrown in jail overnight. (They said that I was drunk, and I was, but are autistic people not allowed to drink?) If you’re with someone who is having a shutdown, don’t try and make them respond with eye contact or words. Just allow them to be shut down and know that it will be over soon. It’s OK to say “Oh, you’re having a shutdown? That’s fine, I’ll wait here with you, just let me know when you’re ready to get started again and we’ll go home.” You don’t need to make them snap out of it. They may be able to use speech apps or write if they can’t verbally communicate, or nod yes or no. They will be aware of everything around them, so if people are standing by watching and saying humiliating things, try and protect the autistic person from that. I’m sure you can imagine that it’s really hard to hear someone say derogatory things about you and have no way of defending yourself. Maybe ask the person if they are able to move to somewhere where you’ll have more privacy. If you’re embarrassed, it’s likely that your autistic friend is embarrassed too and isn’t intentionally trying to humiliate you or themselves. Shouting and screaming at the autistic person will only make things worse. An autistic person sitting down silently with someone else sitting next to them doesn’t look too weird, although it might seem out of place. An autistic person screaming and rocking while you berate them will draw attention to you, and people may rightly recognize you as an aggressor towards a vulnerable person and they may intervene. Autistics don’t have shutdowns to try and ruin your birthday party, or to get attention, or to scare off your client. We can’t help when and where we experience a shutdown. Also know that if you were having an emotionally distressing experience, it’s likely that we would support you, and we really deserve the same support, because we get treated very badly in a lot of circumstances. We desperately need a break. So if you’ve read this whole article and have decided to recognize and support autistic shutdowns if and when they happen — thank you so much!

Katkin

Feeling Ashamed of the Way I Act During a Bipolar Episode

We rarely talk about shame in the bipolar disorder community, but I’ve found it’s a common experience that connects me to so many others with this disorder. To me, shame feels like the deep core of my bipolar experience. Psychosis , mania and paranoia can alter our thoughts and behavior and cause us to do and say socially unacceptable things. (I have learned that society has extremely limited boundaries about what is and what isn’t acceptable.) Or at the very least, things that aren’t typical for us and don’t represent who we really are. I’ve been naked in public, I’ve been arrested for having a meltdown in the middle of a busy street. Paranoia has caused me to destroy my relationships with friends because I thought they were plotting against me. I’ve believed, and informed other people, that I have magical powers. I’ve ended up lost, 35 miles away from my house, with no car or way of getting home. I’ve been desperately afraid in a busy area that the people in my vicinity could hear my thoughts. Those things are on the more extreme scale of what I experience, but even as a relatively stable person, the mood episodes that I endure cause me to behave in ways that are normally out of character for me. I’ll let people in my life who I normally wouldn’t, or sometimes start a sexual relationship with someone I normally wouldn’t. I’ve told my boss to f*** off and walked out. I will get ideas (and be highly vocal about them) that don’t really make any sense. Normally, I am not one for socializing, but when manic I am happy to engage in organizing my own public events and will speak on a podium. No matter how well hypomanic-me can go down sometimes, and even when hypomanic me is preferable to “normal” me, I feel ashamed. It can feel like my body has been taken over by someone else and I have gone and done and said things I would never usually do and say. The way that I behave when I am experiencing an episode is different to who I am when I am feeling well. I feel like a lot of people in my life don’t actually know me because they have never met stable me. When I am recovering from an episode, I not only need to go through the emotional turmoil of healing from a bout of serious mental illness , I also need to pick up the pieces of whatever it is that I’ve done and said that people don’t like. Or just hide under the covers and cringe about how I acted. I am so introverted and shy on a “normal” day that this humiliation can be something as little as a joke I made at a party. Even if everyone laughed at it! I try and minimize the damage I can cause when poorly by educating the people around me about psychosis, paranoia and hypomania. I try and teach them that for me, mental illness doesn’t always mean sadness and anxiety. The extremes of mental illness are still hidden and unspoken. But no matter how many times we try and educate and explain, many people don’t actually listen or do their own research. I’m a huge lover of apologizing. I will always apologize as deeply as I can when I have hurt or offended someone I care about. But not everyone will accept apologies, and sometimes even if I apologize very sincerely, it will not fix the relationship; this is just something that needs to be accepted. I am also aware that I often may not even realize when someone is upset about my behavior and will instead quietly distance themselves for me. I put in every effort to avoid getting unwell in the first place. The select understanding people I have in my life don’t need to visit me in hospital because I ended up hurting myself either intentionally or accidentally. They don’t need me to lose all my money because of something I did while hypomanic. They don’t need me to end up with a criminal record for being disruptive in public. So I am a routine queen, educate myself about bipolar as much as possible, stay sober and take my medication. That’s how I take accountability for my behavior. I warn, I apologize and I prevent. But I am fully aware that I cant stop myself from having any episodes ever again; if I could, I would be a millionaire because I would have found a cure for bipolar. And I know that while I am having an episode, there is a chance I will behave in a way that is out of character. And so, I ask people without bipolar — can you cut me a break? Can you understand that I feel so much shame? Can you empathize that sometimes, I feel like I am watching myself act? And sometimes, I can’t remember what I did or said at all. If I acted or spoke in a way that didn’t make sense to you, know that it probably doesn’t make sense to me either. I think it would be nice if we could cut ourselve s a break too. Whenever someone new confides in me about their diagnosis, they will often tell me about things they’ve done before they got treatment they weren’t proud of. It’s why I wanted to share this article and how I’ve felt shame too. Pain can be uniting and binding. But shining a light on the ways we have acted, particularly when in crisis, can help to reduce shame. We can be kinder to ourselves. Perhaps you have had a meltdown in front of some people you would have preferred not to see you like that. Perhaps you were mocked by passersby, by people you love or by emergency services while you were in crisis. I have too. If we share our embarrassing, shameful, scary experiences, we can take back control of our out-of-control moments. Healing from the shame inflicted on us by other people or ourselves is part and parcel of recovering from an episode. We need to be kind to ourselves because society has historically heaped the shame onto us. Calling us “nutcases” and “psychos,” lobotomization, sterilization. This is part of our history and part of the reason that we feel ashamed for not fitting neatly into society, and behind the horror other people feel when we can’t act the way we are expected to. Be good to yourself, be kind to yourself. I have been there too. We are on this hard journey together. You are not alone. You are not embarrassing. You are not shameful.

Katkin

Feeling Ashamed of the Way I Act During a Bipolar Episode

We rarely talk about shame in the bipolar disorder community, but I’ve found it’s a common experience that connects me to so many others with this disorder. To me, shame feels like the deep core of my bipolar experience. Psychosis , mania and paranoia can alter our thoughts and behavior and cause us to do and say socially unacceptable things. (I have learned that society has extremely limited boundaries about what is and what isn’t acceptable.) Or at the very least, things that aren’t typical for us and don’t represent who we really are. I’ve been naked in public, I’ve been arrested for having a meltdown in the middle of a busy street. Paranoia has caused me to destroy my relationships with friends because I thought they were plotting against me. I’ve believed, and informed other people, that I have magical powers. I’ve ended up lost, 35 miles away from my house, with no car or way of getting home. I’ve been desperately afraid in a busy area that the people in my vicinity could hear my thoughts. Those things are on the more extreme scale of what I experience, but even as a relatively stable person, the mood episodes that I endure cause me to behave in ways that are normally out of character for me. I’ll let people in my life who I normally wouldn’t, or sometimes start a sexual relationship with someone I normally wouldn’t. I’ve told my boss to f*** off and walked out. I will get ideas (and be highly vocal about them) that don’t really make any sense. Normally, I am not one for socializing, but when manic I am happy to engage in organizing my own public events and will speak on a podium. No matter how well hypomanic-me can go down sometimes, and even when hypomanic me is preferable to “normal” me, I feel ashamed. It can feel like my body has been taken over by someone else and I have gone and done and said things I would never usually do and say. The way that I behave when I am experiencing an episode is different to who I am when I am feeling well. I feel like a lot of people in my life don’t actually know me because they have never met stable me. When I am recovering from an episode, I not only need to go through the emotional turmoil of healing from a bout of serious mental illness , I also need to pick up the pieces of whatever it is that I’ve done and said that people don’t like. Or just hide under the covers and cringe about how I acted. I am so introverted and shy on a “normal” day that this humiliation can be something as little as a joke I made at a party. Even if everyone laughed at it! I try and minimize the damage I can cause when poorly by educating the people around me about psychosis, paranoia and hypomania. I try and teach them that for me, mental illness doesn’t always mean sadness and anxiety. The extremes of mental illness are still hidden and unspoken. But no matter how many times we try and educate and explain, many people don’t actually listen or do their own research. I’m a huge lover of apologizing. I will always apologize as deeply as I can when I have hurt or offended someone I care about. But not everyone will accept apologies, and sometimes even if I apologize very sincerely, it will not fix the relationship; this is just something that needs to be accepted. I am also aware that I often may not even realize when someone is upset about my behavior and will instead quietly distance themselves for me. I put in every effort to avoid getting unwell in the first place. The select understanding people I have in my life don’t need to visit me in hospital because I ended up hurting myself either intentionally or accidentally. They don’t need me to lose all my money because of something I did while hypomanic. They don’t need me to end up with a criminal record for being disruptive in public. So I am a routine queen, educate myself about bipolar as much as possible, stay sober and take my medication. That’s how I take accountability for my behavior. I warn, I apologize and I prevent. But I am fully aware that I cant stop myself from having any episodes ever again; if I could, I would be a millionaire because I would have found a cure for bipolar. And I know that while I am having an episode, there is a chance I will behave in a way that is out of character. And so, I ask people without bipolar — can you cut me a break? Can you understand that I feel so much shame? Can you empathize that sometimes, I feel like I am watching myself act? And sometimes, I can’t remember what I did or said at all. If I acted or spoke in a way that didn’t make sense to you, know that it probably doesn’t make sense to me either. I think it would be nice if we could cut ourselve s a break too. Whenever someone new confides in me about their diagnosis, they will often tell me about things they’ve done before they got treatment they weren’t proud of. It’s why I wanted to share this article and how I’ve felt shame too. Pain can be uniting and binding. But shining a light on the ways we have acted, particularly when in crisis, can help to reduce shame. We can be kinder to ourselves. Perhaps you have had a meltdown in front of some people you would have preferred not to see you like that. Perhaps you were mocked by passersby, by people you love or by emergency services while you were in crisis. I have too. If we share our embarrassing, shameful, scary experiences, we can take back control of our out-of-control moments. Healing from the shame inflicted on us by other people or ourselves is part and parcel of recovering from an episode. We need to be kind to ourselves because society has historically heaped the shame onto us. Calling us “nutcases” and “psychos,” lobotomization, sterilization. This is part of our history and part of the reason that we feel ashamed for not fitting neatly into society, and behind the horror other people feel when we can’t act the way we are expected to. Be good to yourself, be kind to yourself. I have been there too. We are on this hard journey together. You are not alone. You are not embarrassing. You are not shameful.

Katkin

Feeling Ashamed of the Way I Act During a Bipolar Episode

We rarely talk about shame in the bipolar disorder community, but I’ve found it’s a common experience that connects me to so many others with this disorder. To me, shame feels like the deep core of my bipolar experience. Psychosis , mania and paranoia can alter our thoughts and behavior and cause us to do and say socially unacceptable things. (I have learned that society has extremely limited boundaries about what is and what isn’t acceptable.) Or at the very least, things that aren’t typical for us and don’t represent who we really are. I’ve been naked in public, I’ve been arrested for having a meltdown in the middle of a busy street. Paranoia has caused me to destroy my relationships with friends because I thought they were plotting against me. I’ve believed, and informed other people, that I have magical powers. I’ve ended up lost, 35 miles away from my house, with no car or way of getting home. I’ve been desperately afraid in a busy area that the people in my vicinity could hear my thoughts. Those things are on the more extreme scale of what I experience, but even as a relatively stable person, the mood episodes that I endure cause me to behave in ways that are normally out of character for me. I’ll let people in my life who I normally wouldn’t, or sometimes start a sexual relationship with someone I normally wouldn’t. I’ve told my boss to f*** off and walked out. I will get ideas (and be highly vocal about them) that don’t really make any sense. Normally, I am not one for socializing, but when manic I am happy to engage in organizing my own public events and will speak on a podium. No matter how well hypomanic-me can go down sometimes, and even when hypomanic me is preferable to “normal” me, I feel ashamed. It can feel like my body has been taken over by someone else and I have gone and done and said things I would never usually do and say. The way that I behave when I am experiencing an episode is different to who I am when I am feeling well. I feel like a lot of people in my life don’t actually know me because they have never met stable me. When I am recovering from an episode, I not only need to go through the emotional turmoil of healing from a bout of serious mental illness , I also need to pick up the pieces of whatever it is that I’ve done and said that people don’t like. Or just hide under the covers and cringe about how I acted. I am so introverted and shy on a “normal” day that this humiliation can be something as little as a joke I made at a party. Even if everyone laughed at it! I try and minimize the damage I can cause when poorly by educating the people around me about psychosis, paranoia and hypomania. I try and teach them that for me, mental illness doesn’t always mean sadness and anxiety. The extremes of mental illness are still hidden and unspoken. But no matter how many times we try and educate and explain, many people don’t actually listen or do their own research. I’m a huge lover of apologizing. I will always apologize as deeply as I can when I have hurt or offended someone I care about. But not everyone will accept apologies, and sometimes even if I apologize very sincerely, it will not fix the relationship; this is just something that needs to be accepted. I am also aware that I often may not even realize when someone is upset about my behavior and will instead quietly distance themselves for me. I put in every effort to avoid getting unwell in the first place. The select understanding people I have in my life don’t need to visit me in hospital because I ended up hurting myself either intentionally or accidentally. They don’t need me to lose all my money because of something I did while hypomanic. They don’t need me to end up with a criminal record for being disruptive in public. So I am a routine queen, educate myself about bipolar as much as possible, stay sober and take my medication. That’s how I take accountability for my behavior. I warn, I apologize and I prevent. But I am fully aware that I cant stop myself from having any episodes ever again; if I could, I would be a millionaire because I would have found a cure for bipolar. And I know that while I am having an episode, there is a chance I will behave in a way that is out of character. And so, I ask people without bipolar — can you cut me a break? Can you understand that I feel so much shame? Can you empathize that sometimes, I feel like I am watching myself act? And sometimes, I can’t remember what I did or said at all. If I acted or spoke in a way that didn’t make sense to you, know that it probably doesn’t make sense to me either. I think it would be nice if we could cut ourselve s a break too. Whenever someone new confides in me about their diagnosis, they will often tell me about things they’ve done before they got treatment they weren’t proud of. It’s why I wanted to share this article and how I’ve felt shame too. Pain can be uniting and binding. But shining a light on the ways we have acted, particularly when in crisis, can help to reduce shame. We can be kinder to ourselves. Perhaps you have had a meltdown in front of some people you would have preferred not to see you like that. Perhaps you were mocked by passersby, by people you love or by emergency services while you were in crisis. I have too. If we share our embarrassing, shameful, scary experiences, we can take back control of our out-of-control moments. Healing from the shame inflicted on us by other people or ourselves is part and parcel of recovering from an episode. We need to be kind to ourselves because society has historically heaped the shame onto us. Calling us “nutcases” and “psychos,” lobotomization, sterilization. This is part of our history and part of the reason that we feel ashamed for not fitting neatly into society, and behind the horror other people feel when we can’t act the way we are expected to. Be good to yourself, be kind to yourself. I have been there too. We are on this hard journey together. You are not alone. You are not embarrassing. You are not shameful.

Katkin

Understanding and Accepting My Bipolar Disorder as a Disability

I have a few friends who have varying levels of physical disability. If I arrange to meet somewhere, I now know to check if it’s accessible first. But if I forget to or get it wrong, I’m never angry at them if they ask if we can go somewhere that they can access. When they tell me stories about times people have stigmatized them, patronized them or made assumptions about them, I am horrified — who would be so ignorant? This isn’t the Victorian times anymore! I completely understand it’s essential they find work that makes reasonable adjustments to them and accommodates them. And if they can’t find that job, I totally get they can’t work and need benefits. I would never, ever, compare them to someone without a physical disability and say, “Why haven’t you done that? Why aren’t you as successful as them?” I totally get it. All of it. I used to find it really hard to give myself the same understanding and accept that I have a disability. Why did I feel guilty when I can’t go to a friend’s birthday party, because I felt unwell and there would be alcohol and late nights? Why did I feel like a loser because I couldn’t go on the girls holiday? Why was I never able to say, actually, can we do something more bipolar-friendly? It felt easier sometimes to just not have any friends. Why did I get so angry about people stigmatizing, patronizing or making assumptions about me, but felt like I couldn’t tell the person in question how I felt? I watched as people said ridiculous things about my schizophrenic cousin, things I knew weren’t true. But I was afraid if I spoke up I too would experience the full family rejection he had. I thought I would also be seen as a huge burden to both my parents and society. Why did I think I could work a high stress, full time job and just hope I could hide being bipolar? I was so afraid of stigma I pushed myself too hard and tried to pretend I was “normal.” I ended up in hospital after a breakdown rather than tell people I needed a little more understanding here and there. Because I felt if they knew about my condition I would be fired. I couldn’t access therapy, because I didn’t want my boss to know I was sick. Anything that might raise suspicion to my disorder, I tried to hide. Why did I feel ashamed when I couldn’t work after my breakdown? That I wasn’t really disabled, and I should just be able to get my act together? If only I could stop sleeping, I could be really successful, I thought. I am just lazy. Why did I think it was totally reasonable for someone to say they don’t want to be in a relationship with someone with bipolar disorder, when they didn’t even really know me? Why did I tell people up front, right away, so I could get the potential dumping out of the way quickly? Why did I put up with poor treatment? I thought I couldn’t really do any better, because who would want a bipolar girlfriend? And why, oh why, did I compare myself with someone who does not have bipolar? The woman who is more successful than me, whose achievements I see posted about on Facebook, whose achievements I want — she does not have bipolar. Why were my expectations for myself not adjusted? Because I did not see myself as having a disability. I had internalized stigma. I felt I was a faulty person. A person gone wrong. Not a person with a condition that can be very complicated and quite difficult to balance. I was running on broken legs, not getting far and falling often. I thought because my disability was hidden, I could just pretend it wasn’t there. I thought it’s the label of bipolar that holds the stigma, and if I can hide the label people won’t judge me. Not realizing that my behavior, my personality, is a huge part of what causes the stigma in the first place. So now I am out and open about my condition. If someone does not want to be in my life because of my bipolar, I don’t want them there either. And yes, I do think they’re as bad as someone who doesn’t want to befriend someone with a physical disability. If someone is saying something ignorant about bipolar or mental health in general, I correct them. Yes it’s embarrassing for them, but it’s not as bad as the misinformation they spread about people like me, that I have to face the real consequences of. Consequences that affect my job prospects, relationships and physical health. Most of all I accept who I am, I accept that many things in my day-to-day life have to be taken into consideration so I can stay as stable as possible. I need routine, I need my life to be low stress. It’s like walking on a tightrope sometimes, but it has to be done. I accept that some people are not right for me and some people don’t want to be there. I accept that all this effort to stay well means I am not always able to be a high flyer. Maybe I will never be able to travel the world or be the CEO of a 50 person business like I originally wanted. That’s OK, I am happy with my little freelance business and family holidays to Cornwall. I am a disabled person, I need to work around things sometimes. I can still make achievements, and maybe in some ways they’re more impressive because I am working with a disability. Often people say I shouldn’t be defined by my bipolar, or see myself as disabled because I can achieve anything I put my mind to. But what should I do? Pretend I don’t have bipolar, or simply get better? Stop thinking about it? To suggest such a thing suggests that bipolar doesn’t affect my life in any meaningful way. Some people do not see their bipolar as a disability and that’s great too. But I hope for those people, their life isn’t as impaired by their bipolar. I hope their bipolar genuinely isn’t holding them back. If your bipolar is holding you back, I hope you can reach the same level of acceptance that I have. It’s OK to have a disability. And most of all I hope you too can feel proud of what you’ve achieved in life as a person with bipolar, whether that be traveling the world, buying your first home or simply surviving another day.