Autism and the Human Spectrum
I learned earlier this week that today is Autism Awareness Day. This means that today, among other things, we're all encouraged to wear blue. Several global landmarks will be lit up by blue lighting.
A couple of years ago, I traveled around the country to various cities to attend startup competitions. I wanted to get a sense of how the entrepreneurial culture varied from city to city around the United States, meet like-minded programmers and get perspectives on tech culture from the boots on the ground, and see cities that I had never seen before.
The trips served these goals admirably, but I had another agenda: I wanted to get myself interacting with as many strangers in strange places as I possibly could. I was looking for perspective not only on the world around me, but on myself.
At the time, I had started to recognize that I was meeting with a fair amount of rejection in large social situations. I had no way of discerning if there was a problem with this, and, if there was, just how much of it was attributable to me versus other factors. It wasn't that everyone rejected me. Some amount of rejection is normal. How much? Was I just paying more attention to the few people who were rejecting me than the people who were engaging with me and accepting me?
In hindsight, I think I was just being a little too sensitive to rejection, and in my head, it was pervading all my other social interactions. At the time, I was confused about this, so I immediately started to assume it had something to do with me. This bias compounds itself: you think there's something wrong with you, so as you interact with people, they sense that you think that about yourself, and you get rejected more. Suffice it to say, my travels around the country did little to ease my concerns about this. As the fellow said: fear itself.
It's difficult to search around online for information about this sort of thing, for one simple reason: it's difficult to truly know what's going on inside of your own head. The Internet requires that you have keywords or phrases in order to find something; vague notions about your own inner mental workings are insufficient input to get adequate or helpful search results.
I settled on the hypothesis that I might be someplace on the autistic spectrum. I have a natural propensity for computer programming, the prior year I had spent much of my own time studying quantum mechanics for fun, and ostensibly, social interactions felt like a problem for me. It wasn't the best theory, but you need to have something to take to a psychologist when you go and ask them for help.
Long story short, I eventually went to see someone who specialized in dealing with autistic spectrum disorders, and they reassured me, with complete confidence, that this was definitely not my problem. I was capable of carrying on a conversation, maintaining eye contact, etc. I remember feeling relieved by this; perhaps I was socially inept, but it was only because I had never really learned, not because I was incapable.
Now, I need to be absolutely clear about what I'm about to say. I have no idea what it is like to be autistic. I have never had a family member or friend who suffered from this that I've had to support emotionally. But the truth is, I did spend a few months of my life in this darkness, thinking that perhaps there was something "wrong" with me, thinking that connecting with other people would be a struggle for me for the rest of my life, simply because I had been born with some kind of illness that would preclude me from functioning the way society expects you to.
In the end, this darkness was completely self-imposed by me. I can see that now. So I'm not trying to say that, because of this experience, that I can properly empathize with anyone who is struggling with autism. What this afforded me, after the fact, was perspective. I wrote a few years ago about a schizophrenic neighbor that I had for a time. I learned from that experience. In addition to understanding the importance of having compassion for people who suffer from these kinds of things, I concluded that we ourselves shouldn't take it for granted that we have been spared this suffering in our own lives.
I emerged from this dark time in my life to overhear conversations people were having about how much they didn't like one grocery store versus another, complaints about dealing with traffic, and so on, and suddenly these words passed in and out of my head like white noise. For a time, there were periods where it was difficult to focus on what I was doing at work.
Here's the thing about autism: we can't discern the cause, the afflictions themselves are arbitrary. This scares people. Why do people persist in believing that vaccines cause autism when there's absolutely no scientific evidence to back this up? My best theory is that it's easier to distance yourself from the possibility of the problem if you have any cause to attribute it to that minimizes the fear that it can happen to you.
A parent tells another person that they have an autistic child. The person asks the parent if they've vaccinated their child, to which any partway responsible parent would answer, "Of course I did." Aha! Then it's the parent's fault! If it's something that the parent did, then it's something that can be controlled. If I can avoid doing the thing that caused it, if I give myself the illusion of having control, then the world becomes a little less terrifying.
That last statement, of course, contains one pernicious assumption that must be called out: that having an autistic child is something that should be feared. I remember having a discussion about the possibility of having children with someone once. They gave me this admonition: "If you have a child, you have to consider the possibility that it might be born with Down's syndrome or some other disease."
This rendered me speechless. If you have a child, aren't you going to love it unconditionally, no matter what problems it might have? You don't decide to become a parent and hope that you get a perfect, flawless child. Such a child has never existed anyway, and who are any of us to think that our lives should just be easy?
As much as this hearing this comment from someone horrified me, internally I was thinking back to my early twenties. At the time, I gave a lot of thought to having children, and one thing that terrified me was that this very same thought had crossed my mind. What if they're born with a defect? The child will have been brought into this world, by me, with a struggle ahead of them, and that's my fault, right? This is immature thinking at best. Anyone who thinks this way probably shouldn't choose to become a parent right away without some serious soul-searching. I possessed enough self-awareness to recognize that, since I felt this way on some level, I should probably steer clear of having children.
I'm still ambivalent about whether or not I'll ever decide to have children; it's certainly not the most pressing priority in my life. But now, in my early thirties, I have given it some thought lately, and I've come to realize that if I were to adopt or have a child, I would love it no matter what. It wouldn't matter to me what the child is afflicted with; I would love it all the same, and support it however it needs to be supported. I'm absolutely sure of this now, in a way that I could never have claimed to be in my youth. I still haven't figured out why or how I've come to this change of heart, but it makes me happy to recognize that perhaps, in the last decade, I've matured a little.
I'm grateful that my life has been so sparsely populated with suffering, and what little suffering I've encountered has been relatively easy to bear. I've been lucky. But good luck can also stunt our personal growth. Perhaps this is why suffering gets tossed into our lives. It invariably forces new perspective on us, in a way that nothing else can possibly achieve. It teaches us compassion. Suffering is the universal human variable; the constant should be our propensity and willingness to help one another overcome it.
A couple of years ago, I traveled around the country to various cities to attend startup competitions. I wanted to get a sense of how the entrepreneurial culture varied from city to city around the United States, meet like-minded programmers and get perspectives on tech culture from the boots on the ground, and see cities that I had never seen before.
The trips served these goals admirably, but I had another agenda: I wanted to get myself interacting with as many strangers in strange places as I possibly could. I was looking for perspective not only on the world around me, but on myself.
At the time, I had started to recognize that I was meeting with a fair amount of rejection in large social situations. I had no way of discerning if there was a problem with this, and, if there was, just how much of it was attributable to me versus other factors. It wasn't that everyone rejected me. Some amount of rejection is normal. How much? Was I just paying more attention to the few people who were rejecting me than the people who were engaging with me and accepting me?
In hindsight, I think I was just being a little too sensitive to rejection, and in my head, it was pervading all my other social interactions. At the time, I was confused about this, so I immediately started to assume it had something to do with me. This bias compounds itself: you think there's something wrong with you, so as you interact with people, they sense that you think that about yourself, and you get rejected more. Suffice it to say, my travels around the country did little to ease my concerns about this. As the fellow said: fear itself.
It's difficult to search around online for information about this sort of thing, for one simple reason: it's difficult to truly know what's going on inside of your own head. The Internet requires that you have keywords or phrases in order to find something; vague notions about your own inner mental workings are insufficient input to get adequate or helpful search results.
I settled on the hypothesis that I might be someplace on the autistic spectrum. I have a natural propensity for computer programming, the prior year I had spent much of my own time studying quantum mechanics for fun, and ostensibly, social interactions felt like a problem for me. It wasn't the best theory, but you need to have something to take to a psychologist when you go and ask them for help.
Long story short, I eventually went to see someone who specialized in dealing with autistic spectrum disorders, and they reassured me, with complete confidence, that this was definitely not my problem. I was capable of carrying on a conversation, maintaining eye contact, etc. I remember feeling relieved by this; perhaps I was socially inept, but it was only because I had never really learned, not because I was incapable.
Now, I need to be absolutely clear about what I'm about to say. I have no idea what it is like to be autistic. I have never had a family member or friend who suffered from this that I've had to support emotionally. But the truth is, I did spend a few months of my life in this darkness, thinking that perhaps there was something "wrong" with me, thinking that connecting with other people would be a struggle for me for the rest of my life, simply because I had been born with some kind of illness that would preclude me from functioning the way society expects you to.
In the end, this darkness was completely self-imposed by me. I can see that now. So I'm not trying to say that, because of this experience, that I can properly empathize with anyone who is struggling with autism. What this afforded me, after the fact, was perspective. I wrote a few years ago about a schizophrenic neighbor that I had for a time. I learned from that experience. In addition to understanding the importance of having compassion for people who suffer from these kinds of things, I concluded that we ourselves shouldn't take it for granted that we have been spared this suffering in our own lives.
I emerged from this dark time in my life to overhear conversations people were having about how much they didn't like one grocery store versus another, complaints about dealing with traffic, and so on, and suddenly these words passed in and out of my head like white noise. For a time, there were periods where it was difficult to focus on what I was doing at work.
Here's the thing about autism: we can't discern the cause, the afflictions themselves are arbitrary. This scares people. Why do people persist in believing that vaccines cause autism when there's absolutely no scientific evidence to back this up? My best theory is that it's easier to distance yourself from the possibility of the problem if you have any cause to attribute it to that minimizes the fear that it can happen to you.
A parent tells another person that they have an autistic child. The person asks the parent if they've vaccinated their child, to which any partway responsible parent would answer, "Of course I did." Aha! Then it's the parent's fault! If it's something that the parent did, then it's something that can be controlled. If I can avoid doing the thing that caused it, if I give myself the illusion of having control, then the world becomes a little less terrifying.
That last statement, of course, contains one pernicious assumption that must be called out: that having an autistic child is something that should be feared. I remember having a discussion about the possibility of having children with someone once. They gave me this admonition: "If you have a child, you have to consider the possibility that it might be born with Down's syndrome or some other disease."
This rendered me speechless. If you have a child, aren't you going to love it unconditionally, no matter what problems it might have? You don't decide to become a parent and hope that you get a perfect, flawless child. Such a child has never existed anyway, and who are any of us to think that our lives should just be easy?
As much as this hearing this comment from someone horrified me, internally I was thinking back to my early twenties. At the time, I gave a lot of thought to having children, and one thing that terrified me was that this very same thought had crossed my mind. What if they're born with a defect? The child will have been brought into this world, by me, with a struggle ahead of them, and that's my fault, right? This is immature thinking at best. Anyone who thinks this way probably shouldn't choose to become a parent right away without some serious soul-searching. I possessed enough self-awareness to recognize that, since I felt this way on some level, I should probably steer clear of having children.
I'm still ambivalent about whether or not I'll ever decide to have children; it's certainly not the most pressing priority in my life. But now, in my early thirties, I have given it some thought lately, and I've come to realize that if I were to adopt or have a child, I would love it no matter what. It wouldn't matter to me what the child is afflicted with; I would love it all the same, and support it however it needs to be supported. I'm absolutely sure of this now, in a way that I could never have claimed to be in my youth. I still haven't figured out why or how I've come to this change of heart, but it makes me happy to recognize that perhaps, in the last decade, I've matured a little.
I'm grateful that my life has been so sparsely populated with suffering, and what little suffering I've encountered has been relatively easy to bear. I've been lucky. But good luck can also stunt our personal growth. Perhaps this is why suffering gets tossed into our lives. It invariably forces new perspective on us, in a way that nothing else can possibly achieve. It teaches us compassion. Suffering is the universal human variable; the constant should be our propensity and willingness to help one another overcome it.