I’m writing about this because both Momma Ape and my therapist have told me I must write about it. I don’t know if it belongs here or not, and posts under this heading may be moved to another blog entirely at some point. For the time being, they will just be separated by category; posts dealing with this issue will be categorized “ASD;” chronic pain posts will continue to classified under “Aspects.”
Due to some suspicions I have had for a while, coupled with a recent traumatic event in my personal life, I did some research, and after working with my therapist, have been officially diagnosed as having Asperger syndrome, or as it’s now called, Autism Spectrum Disorder, “ASD,” or “AS.”
For interested parties, more information can be found here.
It explains many, many things. It explains my lifelong difficulty cultivating and maintaining relationships. It explains the bullying and social ostracism that plagued me well into my twenties. It explains my lack of hand/eye coordination, my inability to match my peers’ physical stamina, and my persistent dyspraxia. It explains my insomnia. It explains my deep-seated need for order and my anxiety when tasks aren’t performed a certain way. It explains my difficulty in controlling my temper; most recently with regards to my chronic pain experience and my high level of intolerance towards people offering obtuse but well-meaning suggestions.
I overstimulate easily. I am extremely sensitive to noise, and unable to block out extraneous sounds and focus on a person’s voice in a loud room, and sometimes even in a not-so-loud room. I cannot watch TV or listen to music and carry on a conversation, or do anything else, at the same time. And once overstimulated, my system goes into fight-or-flight mode in an effort to protect itself, further exacerbating my inability to see outside myself and sometimes resulting in fear-motivated outbursts of anger.
Autistic tendencies reach into nearly every aspect of my life. In some parts of it, such as my chosen career path in biological research, they are an advantage. In others, such as interpersonal relationships, they are a severe handicap. The most difficult part of it, when it comes to managing my day-to-day, is that I have an empathy disorder. The parts of one’s brain that enable one to place oneself in another person’s situation and identify with it do not work in my mind; the requisite components of my brain do not engage; the necessary neuronal interactions do not occur.
I also have a great deal of difficulty interpreting subtle body language and facial expressions. I have had to learn social cues through trial and error because I have no sense for them, and even though I have collected a vast library of correct responses to many different situations, I don’t always choose the right one. I even have trouble discerning when someone has finished speaking and it’s my turn to speak in a conversation if it’s with someone I don’t know well; that is something I only learn after having spoken to them enough times to have memorized their speech patterns.
I must expend a great deal of mental effort to understand what is expected of me in any given social context, and the more people involved, the more effort it takes, and because I cannot generalize, I have to consider each individual separately when deciding what actions and responses are appropriate. As a result, I tire quickly in these situations and large groups overwhelm me.
I have to employ conscious mental energy to relate to what another person is saying and imagine how I would feel if I were saying it, and the reverse is also true: with what I am saying and how someone else would feel hearing it. Sometimes, it requires so much effort that I must close my eyes or look down or away to do it, because otherwise I am distracted by what I see and am unable to maintain the high level of concentration necessary. At times, I simply don’t have enough energy to sustain it; if I’m tired, distracted, in pain, or filled with anxiety or self-doubt – basically, if I am mentally compromised for any reason – I am unable to do it.
I’ve never written this down or said this out loud before. I always just thought I was a bad person, a weak person, with poor impulse control. I even, in some darker moments, suspected I might have a sociopathic personality disorder, although that frightened me too much to seriously consider it. I didn’t realize the way my brain worked was different. I thought other people were simply better at social and emotional interactions than I was, and if I only tried harder, I’d be better, too.
When I was eight years old, I became convinced that the reason I was having so much trouble interacting with my peers was because everyone could read minds except me. I remember earnestly asking my mother if this was the case. She, of course, told me in no uncertain terms that it was not. But it may as well have been. Whatever intuitive sense it is that allows people to interact with reflexive social and emotional reciprocity, I do not have it.
I have learned how to pretend I do have it, but it requires constant mental effort. And it is exhausting.
And I am scared that because it is so hard for me, that I will never be able to be in a romantic relationship with someone, because I won’t be able to let my guard down for fear of hurting them, which is something that happened quite recently (the traumatic experience referenced above), and I’m still not over it.
And I’m angry that I am this way because I’ve had so many other personal challenges over the last year and a half and I really don’t need another one. I don’t want to have to learn to do this. Just over the last few days I’ve been putting so much effort into empathizing with what friends are saying to me that I’m both mentally and physically worn down. Not to mention that it makes me extremely uncomfortable. It’s been frightening, in fact, because I have to concentrate so hard that I lose all sense of what’s going on around me, and I feel terribly vulnerable and exposed.
And I keep finding that I’m holding my breath, that I’m so focused on sustaining the effort that my stomach clenches and I forget to breathe.
I hope it gets easier, but I don’t know if it will. I don’t know if it’s possible to develop these skills as an adult, although at least now, I know exactly what is (or rather, what isn’t) going on in my brain, and that it is, in fact, clinically, physiologically, and neurologically different. And I know I have to write about it, because I don’t have a lot of people to talk to about it. Of the friends I’ve told, all are sympathetic, but a few are skeptical, and I don’t blame them. It’s like being color blind, only on a much deeper, more personal scale, and it’s hard to explain color blindness to someone that sees the whole visible spectrum.
I am emotionally color blind. And I’m lonely. I don’t have a personality disorder; I do care about people. I don’t want to hurt them. I desperately want to relate to people, maybe because I have so much trouble doing exactly that. I want to have an emotional connection. I want to break out of this plastic hamster ball I’ve been living in and touch someone, and be touched by someone, something I have only ever been able to do a handful of times. I didn’t make my first life-long friend until I was twenty-two. I didn’t make my second until nearly eight years later.
I just had another rare opportunity to bond with a companion and I screwed it up because I hurt the person and didn’t realize how much and how badly until it was too late. And maybe it wasn’t totally my fault; certainly I didn’t do it on purpose. But I don’t ever, ever want it to happen again. Not that I won’t ever inadvertently hurt someone again. But I want to have the awareness of it right when it is happening so I can stop it, or at the very least, soon after so I can apologize right away.
I don’t want to have to go back weeks later and painstakingly pick through the event piece by tiny piece, reconstructing every aspect of it in order to discern exactly what I did that was hurtful, why it was hurtful, and what it is I have to apologize for. I don’t even want to think of how many other times I must have said or done something inadvertently callous or harmful, and people just let it go and never told me. I’m glad someone did finally say something, finally got upset enough with me for me to reexamine the situation and discover that there is something very unusual about the way my brain handles social and emotional interactions, and that I should try to figure out what that is and see if I can do something about it.
People have told me I’m taking the whole business, particularly the recent event that triggered this discovery, far too seriously. But they’re not in my head. They don’t understand how hard it’s been for me all these years. They don’t understand how much it hurts me to discover that I’ve hurt someone else when I had no idea I was doing it. The pain, guilt, and shame is overwhelming, every single time, and this certainly isn’t the first time it’s happened. My soul bears a wound that reopens anew each time someone has been bold enough to inform me, after the fact, that something I’ve said or done was incredibly hurtful. The first time was when I was nine years old; the last only a handful of weeks ago. And I was, and still am, never believed when I try to explain it wasn’t my intention. Because I should have known, right? Because, as I’ve heard time and time again: What kind of person would say those things? How could you be so unfeeling? How could you not have known?
But I didn’t know. I didn’t know. It’s not that I’m unfeeling and I’m not a cruel person. But I’m sure most of those people do think I’m callous and cruel. And I wish more than anything that I could go and take it all back, particularly the most recent, and I can’t. All I can do is try to keep it from happening again. And I’m scared that it will happen again anyway and the person won’t understand that I didn’t mean it that way and that I’m going to be plagued by this and misunderstood, over and over again, for the rest of my life.
And when I think about it like that it’s just too big and I get overwhelmed all over again. But I hope that, day by day, it all gets a little easier. And I hope I can meet people who will understand and maybe not mind so much and not get hurt so easily. And keep trying to be a good person in my own way, whatever way I can.
Christine, this is an amazing post and thank you for being so expansive and honest. I found your blog through your WAPO article. I am just starting down the path of late diagnosis, having realised after almost 47 years on this planet that there is a likely explanation for my sometimes odd, overreactive or compulsive behaviour, past failures in friendships and relationships, and my consequently small social circle. I will digest your blog over the coming weeks when time permits, but in the meantime I want you to know that you are helping people like me to gain the courage and conviction to take the next step towards formal diagnosis.