This is going to be a very personal story…one not about autism, but so related to autism that it almost might as well be. You see, anxiety is very comorbid (commonly found alongside) with autism, to the point that anxiety disorders are the second most commonly diagnosed disorders in kids on the spectrum. Those of you who are on the spectrum or have children on the spectrum probably, unfortunately, already know this fact. So today’s personal story to help you understand people on the spectrum isn’t going to be from Caley’s viewpoint – it’s from mine. Because though I’m not necessarily autistic, I do most certainly have an anxiety disorder. (Caley did, however, assure me that much of what I wrote here she could have written herself.)
How do I know I have an anxiety disorder? After all, to my knowledge at least, unless I got a diagnosis as a child and wasn’t told about it, I have never been officially diagnosed with anything. Well, my wake-up call came one night when I was lying down to go to sleep. I couldn’t relax, couldn’t stop thinking about the news stories I’d heard about a boa constrictor killing a child in his bed, a sinkhole swallowing a man whole as he slept. And I had an aha! moment. And I suddenly realized that my levels of anxiety weren’t normal, that most people didn’t have those sorts of thoughts. But it took me decades to realize that.
Thinking back, it all became very clear. I suffered from nocturnal panic attacks (yes, in retrospect I figured out what they were) for years as a child. When I say goodbye to a loved one I always said it like it would be my last (not because of a nice philosophy, but because yes, I am truly worried it might be my last). And I have done battle with fear of flying for years now…and it’s not just being worried about the flight, it is, turbulence = going to die. I can’t watch movies without reading the spoilers for them first, because not knowing what’s coming next just causes me too much anxiety. Even with the spoilers, it’s still a stressful experience. And everyday tasks like just doing the dishes can become so stressful at times because of the anxiety that long-term deadlines causes me (and that does register as a long-term deadline, there is no specific time it has to be done by, but it does eventually need to be done) that they can require me to push incredibly hard just to complete that simple task.
I know none of this is logical, but my mind can’t really respond to logic when I’m battling anxiety. Ask anyone that knows me, and they’ll tell you I’m one of the most rational people that they know. But the part of my brain that is drowning in fear? Yeah, it’s not exactly able to listen to rational discussions.
I grew up battling anxiety for as long as I can remember. Even back in kindergarten, I remember it. I remember opening up my lunch box and seeing the BEAUTIFULLY made sandwich inside, which my mother had taken the time to cut out in the shape of a heart. I loved it when my mother did that. And then I looked around at the other kids’ sandwiches. None of them had hearts. Suddenly, I was anxious. Did having a heart shaped sandwich mean I was weird? Was it against the rules to have a heart shaped sandwich? What if the other kids teased me? What if I got in trouble with the teacher?
I ate my sandwich under the table, where no one could see.
And I experienced the same self-conception that multiple people on the spectrum have told me they relate to. I thought of myself as lazy. After all, how do you explain how I can’t manage to clean my room? Or how I can’t so much muster enough willpower to go and so much as boil some rice and cook up some chicken…or even microwave something for that matter. People told me I was lazy for these things, and I believed them. Because really, what else could explain that?
The funny thing was, though, I knew I was actually, in many areas of my life, one of the hardest working people I knew. My last semester of college I was a student leader for five different organizations and taking 22 credits of coursework – hard coursework at that, the hardest classes I took in college. And during that very semester I also created the Autism Spectrum Explained website. That didn’t gibe with laziness.
Yet, though I’m the same person who is so ‘hard working’ in some areas of my life, some days I don’t feel like I can even leave my apartment. Heck, some days I’m so anxious I don’t even feel like I can leave my bedroom. Cooking, cleaning, making phone calls, these are all ‘easy’ things that I can’t seem to manage to do on the same time line as others. But it has absolutely nothing to do with laziness, and absolutely everything to do with an anxiety disorder that can make these small tasks just about as ‘easy’ feeling as climbing 6000 stairs up a mountain might seem to you. (I’ve done the mountain, actually. Let me tell you, between the effort needed to climb that mountain and the effort I more often than not need to battle my anxiety to simply make a phone call, I would take the mountain any day.) It’s not like this all the time. In fact, in my life outside of home, I don’t tend to have nearly such disabling anxiety. (Although it is always there. Always.) But it is like that a lot.
I'm not lazy. I have a disorder which makes even 'easy' things ridiculously hard at times. I can see how someone outside looking in might misidentify that as laziness, but now I know that it's not.
Within the past year, I’ve been making more autistic friends who also struggle with anxiety. Talking to them was like looking at myself in the mirror. As I talked to them and gave them advice from personal experience, I also opened up about myself and my anxiety for probably the first time ever. And it’s been such a relief, such a journey of greater self-acceptance and self-understanding. Because when you don’t realize that you have a disorder, you blame yourself. Because if you’re not able to do what others do, and you don’t know why that is, yeah, you’re going to blame yourself.
And that is exactly what I did. I hurled criticisms at myself – lazy, silly, ditzy (yes, the ‘ditziness’ is anxiety related – it’s hard for your mind not to be a bit scattered when you’re worrying about your to-do list, your family, that email, your grades, whether or not you locked your car…you get the idea.), what have you. And I believed those things about myself. But when I started talking to friends who struggle with anxiety, my friends on the spectrum? I was able to finally understand myself, like looking at one of those drawings with a hidden picture that, once you see it, you can’t believe you didn’t realize it was there all along.
What’s more, because they get it I actually feel less anxiety about interacting with these friends. Because if I can’t answer an email for months because I am just drowning in way too much anxiety to be able to reply, THEY GET IT. If I tell them how danged hard it was just for me to leave my room that day, THEY’VE BEEN THERE. And even if they haven’t, they have empathy, because they know what it’s like to struggle with anxiety. And it feels so, SO good to be able to be honest about how ridiculously hard I have to fight some days, to be able to share the joy of having successfully done something ‘small’ that was just causing SO much anxiety for me and not have the person look at me with those eyes that say “So what?” or tease me because “That’s so easy!” The only way you get to say that was easy is if you think climbing 6000 steps up a mountain is easy. Because that’s what I just did.
There is not going to be a ‘this is the way to fight anxiety’ kind of post. Because one of the things I’ve learned is, there is no one way, and no way works for everyone. When I’m dealing with anxiety, I have to push through or else is just continues to get worse. Of course, I am ALWAYS having to push to some extent, even when I so much as put a load of laundry in the washer (long term deadline). When you have to keep pushing CONSTANTLY, even low level, sometimes you get to the point where you can’t push anymore. That’s when I run into my biggest problems, because that leads to putting something off, which leads to worse anxiety, which leads to putting it off more, which worsens the anxiety…you get the idea. Every time I take so much as a small break from pushing, I really have to pay for it and push harder later. (This is not license to push me to do things for those of you who know me, by the way. The best way to help me is through support and understanding, like my friends on the spectrum do, not by pushing me – I know how to do that myself.)
But other people are the exact opposite. The more she pushes, the harder things get for Caley. And unlike me, where the longer I let a fear sit unchallenged, the worse it gets, if she simply leaves a fear alone for long enough it will go extinct. Caley and I have a lot of the exact same fears – it comes of growing up in the exact same environment, I guess. But when I see something I’m afraid of, whether it be a terrible thunderstorm or a flight or what have you, I try to push myself to do it, because I know that is my path forward to healing. When Caley sees it, though, she knows herself, and she knows not to push. I know not to push her, because though pushing works for me, it’s not the path that works for Caley. And both of our mutual fears from childhood have become more manageable over time, though we both took completely distinct paths to get there.
This is not going to be an uplifting post and I cannot tell you a cure for anxiety disorders, though I wish I could because I’d take one in a heartbeat. But that wasn’t the point here. The point was to foster empathy. To help those of you who do not struggle with anxiety understand those who do – to show you how anxiety can make a ‘small task’ into a 5,000 foot tall mountain. And, for those of you who do struggle, I hope this post has helped you feel less alone.
-Creigh
[Picture was taken on 泰山 (Mount Tai), one of the five great mountains of China, from a vantage point looking up the mountain at an untold number of steps. I took it while I was climbing up those thousands of stairs...and I assure you, the ones seen in the photo are actually a very small proportion of the total.]
How do I know I have an anxiety disorder? After all, to my knowledge at least, unless I got a diagnosis as a child and wasn’t told about it, I have never been officially diagnosed with anything. Well, my wake-up call came one night when I was lying down to go to sleep. I couldn’t relax, couldn’t stop thinking about the news stories I’d heard about a boa constrictor killing a child in his bed, a sinkhole swallowing a man whole as he slept. And I had an aha! moment. And I suddenly realized that my levels of anxiety weren’t normal, that most people didn’t have those sorts of thoughts. But it took me decades to realize that.
Thinking back, it all became very clear. I suffered from nocturnal panic attacks (yes, in retrospect I figured out what they were) for years as a child. When I say goodbye to a loved one I always said it like it would be my last (not because of a nice philosophy, but because yes, I am truly worried it might be my last). And I have done battle with fear of flying for years now…and it’s not just being worried about the flight, it is, turbulence = going to die. I can’t watch movies without reading the spoilers for them first, because not knowing what’s coming next just causes me too much anxiety. Even with the spoilers, it’s still a stressful experience. And everyday tasks like just doing the dishes can become so stressful at times because of the anxiety that long-term deadlines causes me (and that does register as a long-term deadline, there is no specific time it has to be done by, but it does eventually need to be done) that they can require me to push incredibly hard just to complete that simple task.
I know none of this is logical, but my mind can’t really respond to logic when I’m battling anxiety. Ask anyone that knows me, and they’ll tell you I’m one of the most rational people that they know. But the part of my brain that is drowning in fear? Yeah, it’s not exactly able to listen to rational discussions.
I grew up battling anxiety for as long as I can remember. Even back in kindergarten, I remember it. I remember opening up my lunch box and seeing the BEAUTIFULLY made sandwich inside, which my mother had taken the time to cut out in the shape of a heart. I loved it when my mother did that. And then I looked around at the other kids’ sandwiches. None of them had hearts. Suddenly, I was anxious. Did having a heart shaped sandwich mean I was weird? Was it against the rules to have a heart shaped sandwich? What if the other kids teased me? What if I got in trouble with the teacher?
I ate my sandwich under the table, where no one could see.
And I experienced the same self-conception that multiple people on the spectrum have told me they relate to. I thought of myself as lazy. After all, how do you explain how I can’t manage to clean my room? Or how I can’t so much muster enough willpower to go and so much as boil some rice and cook up some chicken…or even microwave something for that matter. People told me I was lazy for these things, and I believed them. Because really, what else could explain that?
The funny thing was, though, I knew I was actually, in many areas of my life, one of the hardest working people I knew. My last semester of college I was a student leader for five different organizations and taking 22 credits of coursework – hard coursework at that, the hardest classes I took in college. And during that very semester I also created the Autism Spectrum Explained website. That didn’t gibe with laziness.
Yet, though I’m the same person who is so ‘hard working’ in some areas of my life, some days I don’t feel like I can even leave my apartment. Heck, some days I’m so anxious I don’t even feel like I can leave my bedroom. Cooking, cleaning, making phone calls, these are all ‘easy’ things that I can’t seem to manage to do on the same time line as others. But it has absolutely nothing to do with laziness, and absolutely everything to do with an anxiety disorder that can make these small tasks just about as ‘easy’ feeling as climbing 6000 stairs up a mountain might seem to you. (I’ve done the mountain, actually. Let me tell you, between the effort needed to climb that mountain and the effort I more often than not need to battle my anxiety to simply make a phone call, I would take the mountain any day.) It’s not like this all the time. In fact, in my life outside of home, I don’t tend to have nearly such disabling anxiety. (Although it is always there. Always.) But it is like that a lot.
I'm not lazy. I have a disorder which makes even 'easy' things ridiculously hard at times. I can see how someone outside looking in might misidentify that as laziness, but now I know that it's not.
Within the past year, I’ve been making more autistic friends who also struggle with anxiety. Talking to them was like looking at myself in the mirror. As I talked to them and gave them advice from personal experience, I also opened up about myself and my anxiety for probably the first time ever. And it’s been such a relief, such a journey of greater self-acceptance and self-understanding. Because when you don’t realize that you have a disorder, you blame yourself. Because if you’re not able to do what others do, and you don’t know why that is, yeah, you’re going to blame yourself.
And that is exactly what I did. I hurled criticisms at myself – lazy, silly, ditzy (yes, the ‘ditziness’ is anxiety related – it’s hard for your mind not to be a bit scattered when you’re worrying about your to-do list, your family, that email, your grades, whether or not you locked your car…you get the idea.), what have you. And I believed those things about myself. But when I started talking to friends who struggle with anxiety, my friends on the spectrum? I was able to finally understand myself, like looking at one of those drawings with a hidden picture that, once you see it, you can’t believe you didn’t realize it was there all along.
What’s more, because they get it I actually feel less anxiety about interacting with these friends. Because if I can’t answer an email for months because I am just drowning in way too much anxiety to be able to reply, THEY GET IT. If I tell them how danged hard it was just for me to leave my room that day, THEY’VE BEEN THERE. And even if they haven’t, they have empathy, because they know what it’s like to struggle with anxiety. And it feels so, SO good to be able to be honest about how ridiculously hard I have to fight some days, to be able to share the joy of having successfully done something ‘small’ that was just causing SO much anxiety for me and not have the person look at me with those eyes that say “So what?” or tease me because “That’s so easy!” The only way you get to say that was easy is if you think climbing 6000 steps up a mountain is easy. Because that’s what I just did.
There is not going to be a ‘this is the way to fight anxiety’ kind of post. Because one of the things I’ve learned is, there is no one way, and no way works for everyone. When I’m dealing with anxiety, I have to push through or else is just continues to get worse. Of course, I am ALWAYS having to push to some extent, even when I so much as put a load of laundry in the washer (long term deadline). When you have to keep pushing CONSTANTLY, even low level, sometimes you get to the point where you can’t push anymore. That’s when I run into my biggest problems, because that leads to putting something off, which leads to worse anxiety, which leads to putting it off more, which worsens the anxiety…you get the idea. Every time I take so much as a small break from pushing, I really have to pay for it and push harder later. (This is not license to push me to do things for those of you who know me, by the way. The best way to help me is through support and understanding, like my friends on the spectrum do, not by pushing me – I know how to do that myself.)
But other people are the exact opposite. The more she pushes, the harder things get for Caley. And unlike me, where the longer I let a fear sit unchallenged, the worse it gets, if she simply leaves a fear alone for long enough it will go extinct. Caley and I have a lot of the exact same fears – it comes of growing up in the exact same environment, I guess. But when I see something I’m afraid of, whether it be a terrible thunderstorm or a flight or what have you, I try to push myself to do it, because I know that is my path forward to healing. When Caley sees it, though, she knows herself, and she knows not to push. I know not to push her, because though pushing works for me, it’s not the path that works for Caley. And both of our mutual fears from childhood have become more manageable over time, though we both took completely distinct paths to get there.
This is not going to be an uplifting post and I cannot tell you a cure for anxiety disorders, though I wish I could because I’d take one in a heartbeat. But that wasn’t the point here. The point was to foster empathy. To help those of you who do not struggle with anxiety understand those who do – to show you how anxiety can make a ‘small task’ into a 5,000 foot tall mountain. And, for those of you who do struggle, I hope this post has helped you feel less alone.
-Creigh
[Picture was taken on 泰山 (Mount Tai), one of the five great mountains of China, from a vantage point looking up the mountain at an untold number of steps. I took it while I was climbing up those thousands of stairs...and I assure you, the ones seen in the photo are actually a very small proportion of the total.]
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