I am not human.
I forget when exactly I came to this conclusion, but it must be sometime in my childhood. I don’t think it was a sudden realization that my brain worked so differently from everyone else’s around me that I could not possibly be the same species as them. From an early age I felt cut off from the rest of society. I could try and describe what it felt like, but Lord Byron has already done so far more eloquently:
I stood among them but not of them; in a shroud of thoughts that were not their thoughts.
My parents probably should have realized there was something different about me at the age of two. To be fair, they did. They just thought I was the most wonderful child ever. Which, it turns out, is a necessary condition for turning out a functional child on the autism spectrum.
I think we can safely say that it’s not normal for your toddler to be addicted to watching Star Wars. Let’s review for a moment the fact that this is 1977-1978 and there aren’t VCRs or DVD players in people’s houses the way they are now, so indulging in repeated viewing of a movie required one to actually go to a cinema. Which my family did, several times a week … for a year. Perhaps they’re not that normal, either.
Now, children will watch the same thing on video over and over and over again. (When kids do this, it’s normal. When an adult does, this it’s weird. Discuss.) I know of many parents who have taught their little ones how to set up the VCR or DVD to play Dora the Explorer or Beauty and the Beast, just as they have taught them how to make cereal, so they’ll leave Mama and Daddy to sleep in. When you think about it, it’s a pretty astonishing achievement for said little hominid considering how many adults can’t program the damn things.
We could say that this bordered on normal behavior if I were doing was getting up in the morning and doing that. But, it’s hard to say that it’s normal your two year old daughter thinks Darth Vader is the hero of the movie.
In fact, so enamored was I of the Dark Lord of the Sith that my mother took me to the mall to get my picture taken with him. There’s a picture of chubby little Agatha giggling happily as an enormous guy in a black mask and cape hoists her up in the air. The same little girl will run shrieking in terror from Santa Claus or the Easter Bunny. My mother had to tell me at about the same age that Santa Claus wasn’t real because the idea of some strange guy sneaking into our house at night really freaked me out. She thought this sounded perfectly reasonable, and it is, so she told me Santa did not exist (sorry if you’re just finding out now).
Actually, my … oddness … starts even earlier than that. In fact, as a child, I was completely un-childlike. My mother likes to say about me that I was born at the age of eighty and I’ve been getting younger ever since. I found my supposed peers to be immature, superficial, and silly. In other words, kids. I had absolutely nothing in common with them.
It did not help that I was intellectually segregated from them, as well. Literally. My first grade teacher had identified that my reading skills were roughly at a high school level so sent sent me for testing. Which revealed I had an IQ around 150 and, yes, I could read easily at high school level at the age of 6.
In recognition of this I went directly from first grade to third grade. Do not pass go, do not collect your multiplication tables. My arithmetic is the only thing keeping me from being a True Nerd. I think I probably would have ended up in a very different place if my brain were really good at math. However, in one of those gaping holes like it has for functional empathy, my neurons have decided that addition is not something they are really interested in doing. Which meant that I spent most of my seventh year in the Nurse’s Office after becoming violently ill in math class every day. My parents responded by bribing me to do math problems at night until I could regurgitate the multiplication tables well enough to pass the tests. I then promptly forgot them.
My biggest problem in school was that occasionally I would run into a teacher that hated me. It seems I lack the knack of being able to cover up the fact that I am generally the smartest person in the room, which continues to bite me in the ass as an adult. I would opine that Mohammed Ali got a pass for arrogantly claiming he was the greatest fighter of all time, in fact it added to his charm. Which makes me wonder if physical prowess is somehow less threatening to humans than intellectual on some level. Nobody gets terribly upset that some barely-literate football player earns a bajillion dollars a year, but a banker earning a bonus a fraction the size sends people off into frothing rants about how “unfair” their compensation is, even though they probably got a good return on their clients’ investment and the other guy just kicks a ball really well.
My son One of Two (who inherited dyscalculia) got into trouble with his teacher in second grade by pointing out that, “my mother doesn’t know her multiplication tables and she is a research scientist. She has a calculator.” This was his way of rationalizing not learning them. I took him aside and told him that his teacher should be humored. This echoes his grandmother’s own valuable life lesson to me at the same age: “Look, honey. Yes, your teacher is an idiot. Life is all about dealing with morons in positions of authority. Teaching you how to cope with this is really the only thing school is good for.”
I provide this anecdote as an example of the absolute barefaced honesty with which I was raised. My mother correctly pointed out that I was more intelligent than most adults around me, which I already knew, but that I had to make some concession to people with power who can make your life really miserable just because they can.
The fact that I had no friends goes without saying. Until my late teenage years I had a habit of repeating phrases I found funny, so I was taunted as a mynah bird. And I walked awkwardly; stiff and uncoordinated. To add to all of this, I was a chubby tomboy with poor fashion sense. I always preferred hanging out with boys more than girls. They did interesting stuff like ride bikes and build forts; girls did stupid crap like practice cheers and talk about boys. The aggression from boys was easier to deal with as well. They hit you, you hit them back. Simple. The passive aggressive cruelty of the adolescent girl could be bottled and sold to fascist dictators as a means of torture. And, of course, it hits hardest at the girl who is naturally honest and manages to say exactly the wrong thing every time. And by Wrong Thing I mean something that is undeniably completely accurate in a really unfortunate way.
By the time I was in middle school, years of accumulated hurts and embarrassments drove me inside, both literally and figuratively. I had a routine that consisted of getting up in the morning, going to school, finishing all my homework in class while supposedly listening to the teacher, coming home to say a passing hello to my mother, and disappearing to my room. Confused and hurt by my inability to interact with other people the way everyone else seemed to, I took refuge in video games and books. I would get in ruts where I would read everything I could get hold of on a particular subject. I remember spates of reading biographies of Queen Elizabeth I, Queen Victoria, Joan of Arc. These would eventually branch out so that I have a fairly detailed knowledge of Tudor and Elizabethan England, the British Royal Family, and the Hundred Years War. I also obsessively listened to The Phantom of the Opera, to the extent that I got a spot on the Jeopardy! Teen Tournament just so I could get a free trip to Los Angeles and see Michael Crawford perform it at the Ahmanson Theater.
Yes, I recognize that’s a little creepy. It worked. Obsessive, laser-like focus has really never been my problem. As long as I am interested in the subject. In that case I have a nearly eidetic memory and will relentlessly hunt knowledge down and consume it. Then, having exhausted all of my enthusiasm, I will callously drop it and move on to something new.
Now, I have to ask: if I were a little boy wouldn’t somebody have noticed that my behavior was, in the very least, weird? Would they not have said that forcing your family to take you to the theater to see Star Wars every day for a year as a three year old was not normal? That the child who absolutely could not manage to interact in an age-appropriate fashion with her classmates, had trouble maintaining eye contact with people when talking to them, spoke to everyone in an incredibly direct manner without regard to their feelings, beat subjects to death in conversation, and really showed no interest in anything except whatever it was she was studying at the moment might have something wrong with her?
Except, of course, this is the 1980s and I am female. If I were ten years younger and male I could have gotten a diagnosis and counseling. Instead, I had to develop a rigorous self-training program that, by my early thirties, got me to Mostly Normal. Oh, I still drive subjects into the ground, I still play video games for 18 hours straight, I still look away from people when I am thinking, and I still fail to connect with people, but I have also obtained a husband, a child, a Ph.D., a well-paying job in the pharmaceutical industry, and a second child. All of which would argue that I was, and am, functional in society.
Except for one technicality: I know better. It’s a semantic distinction, but where your typical human is a part of society I interact with it on a controlled basis. I just never understood why, and it ate away at me.
Then, one day at lunch I was reading Psychology Today, and came across an article entitled “The Girl With a Boy’s Brain”. It was the story of Kiriana Cowansage, a young woman with Asperger’s Syndrome. In the way she described herself in the article I recognized myself. It was illuminating to see a female brain wired like mine and it completely shifted my perspective on life. I could finally put a name to the thing that made me different. It wasn’t my imagination, I wasn’t crazy, what I was experiencing was real because it was also happening to other people. What I was had a name.
I didn’t expect it. At the time the only reference I had for autism was the movie Rain Man. Little boys who are poorly capable of functioning in society. Nonverbal kids who have meltdowns and do other weird stuff like sit rocking themselves for hours at a time or obsessively collect trains. I didn’t (and still don’t) do anything like that. Well, I would say I don’t have meltdowns, but I recently broke down in a crying jag to my boss at work in a completely uncontrolled fashion. I think that counts. I vividly remember choosing that reaction over the other option, which was to smash her in the face with a chair. Which leads me to the theory that female Aspie meltdowns are of a less violent nature and more likely to be dismissed as being overly emotional rather than recognized for the uncontrolled catharsis they really are. I do have probably thirty different colors of nail polish at my disposal. To the outside I probably appear to be an introverted, solidly-built woman of medium height who likes to wear nice clothes, is well-groomedFortuitously one of my sensory hypersensitivities is to my own body odor. If I could bathe several times a day, I would., funny, and apparently fairly articulate. Nobody looking at me would immediately think, “hey, she’s autistic!”.
Although I cannot be officially diagnosed (due to the pesky technicality that I am apparently fully functional at this point), I doubt that it would make a huge difference to me to have the official AUTISTIC stamp branded upon me. I am almost completely self-referenced and other people’s opinions about me don’t really bother me that much. Well, not in an emotional way. It causes something much more akin to an intellectual offense, as I described earlier, in the sense that they are Obviously Wrong and the obsessive scientist in me is going to attempt to correct whatever error I perceive in their analysis. I tend to think of this as a first person manifestation of Someone on the Internet Is Wrong Syndrome. The one where people will spend long periods of time in discussion threads arguing with an equally anonymous person about whether Rick Deckard is a replicant or why Vaccines Are Bad (he isn’t and they aren’t, discuss). I just don’t feel the need to have the extra distance. People tend to interpret this as me taking things personally, which is both stupidly obvious and true. It’s stupid because we are talking about me, so of course I’m going to take it personally (Agatha’s First Rule: If someone tells you “don’t take it personally” chances approach unity that it is and you should.).
Of course, I have to freely admit that I could not be unbiased in any interview. I know too much. Additionally, many of my more obviously autistic behaviors have been trained out of me to the extent that, if I were to try to relapse into them, I would probably fail. There’s also no benefit for me; I don’t need access to special educational services. Finally, I don’t believe that any psychologist is capable of accurately diagnosing me as an adult. The DSM-IV (soon to be DSM-V, and which, by the way, have removed Asperger’s as a separate category and included it with Autism Spectrum Disorders — wrongly, IMHO as an Aspie) criteria are clearly written with children in mind and would have to depend on recollections of what I was like as a little girl and these would plainly be faulty.
There is also the fact that many people will opine that being autistic is not having a significant negative impact on my life. I find this debatable and judgmental. It certainly seems to from my end, although the degree is certainly less than for other people on the spectrum and more of a psychological problem than anything else. I wonder if one can have a subclinical case of autism. In fact, that’s kind of what I’ve been told by professionals. Clearly I meet all the other criteria for having Asperger’s … except it doesn’t really effect me and doesn’t matter. Well, it does to me. I do agree on one point, however: I shouldn’t be taking up a clinician’s time when he or she could be using it better to treat the seriously affected.
In fact, there are people who will still not believe that I’m an Aspie because I don’t fit the stereotype. There is also always the camp that wants to claim that I’m just an “arrogant, introvert asshole”. While that may also be true, it’s sort of missing the point. Like it’s a choice. These are the same people who think one can choose to be gay or that dyslexic kids aren’t trying hard enough to read. Like both of these cases, my brain is wired differently than “average”. I’m not arrogant, I merely have strong opinions. And I usually refrain from stating them until I have a large body of evidence in support of it. Introversion is sort of true, in the sense that interacting with other people is exhausting, but it does not take the almost physical removal into account. Imagine that you are having a conversation with someone … but the room is filled with Jell-O. Physically forcing the words out of the mouth is difficult, projecting it through space to the other person is difficult, your vision of the other person’s body language is obscured, and the air itself has a physical presence.
This is just one example of my sensory hypersensitivities. They are not as bad as some other people’s, but they are bad enough to be a significant drain on my mental and emotional energy. My eyes are very sensitive; I wear sunglasses when it’s not even sunny. Bright sunlight I find completely exhausting. At work the sun comes directly into my cubicle and I have to draw the blinds to get anything done. I also tend to see ripples around objects that other people swear are not there. It tends to happen around the edges of ceilings or around electrical equipment, which makes me think it’s heat shimmer or some sort of electrical thing. Being around fluorescent tube lights is very tiring, as well, although the little energy efficient ones do not seem to be.
Perfume can, and often does, make me physically ill. So do bananas. And I can smell through time. In the morning when I get to my cube, I can tell when the security guards have been by during the night or if the cleaning crew comes through while I’m away. Respecting your Aspie’s olfactory space is extremely important. As a random example, if you’ve been told I hate the smell of bananas, taking a bunch as snacks on a long car trip with me will really piss me off. It feels like an invasion of my personal space. A physical invasion.
I think this is why some autistic kids are often violent. A sensory overstimulation really does seem like a form of physical assault. This is difficult for neurotypicals to understand, but imagine that a scent has a feel to it. A physical presence. A person’s smell is a physical extension of them. Forcing your smell on me is only a bit less intrusive than running your hands over my skin. Which I do not recommend you do unless you want me to freak out. The nature of the freak out will depend on my capacity at the time. Most of the time, my reaction won’t be obvious externally. Which is good, because what I really want to do is hit whoever’s touching me. If I ever get around to creating my AspieWear t-shirt line one of the first designs will be a shirt that says, ”I have a list of people who are allowed to hug me. You’re not on it.” That may sound rude, but in my case it’s the absolute truth.
As I wrote that sentence a little graphic popped up into my head. It showed two columns labeled “Allowed” and “Not Allowed”. A list of names appeared in each column. The column headings and the borders looked like a computer printout. The font was Times New Roman, but the names were written in my handwriting with a black medium point gel ink pen. This is one of the problems with communication that I have: I see things in pictures. Ridiculously detailed pictures. How does one translate that into words? What’s the cutoff between the important bits of information and the excessive detail? A lot of times I struggle with that decision and it almost paralyzes me. To me all the bits are equally important and convey different information. For example, you may wonder why the column headings are in typeface, but the names are handwritten. Specifically in my handwriting. It’s because the table itself was generated by my brain; a query, if you will. In response, I filled out the table, rather like you would if you were establishing permissions for a web site. The list is in my handwriting because it’s personal. You’re in the “Allowed” column because I like you and in the “Not Allowed” column either because I don’t like you or I don’t know you well enough to decide whether or not I like you. More likely because I don’t like you, because it takes about three seconds for me to decide that.
I don’t think this is behavior specific to Aspies, but I do think the level of intellectualization might be. Also, a neurotypical probably wouldn’t be so conscious of the decision-making process or go through in such a codified manner. Clearly there are two parts of my brain that require some sort of messaging system to talk to each other.
The key point to understand is that there is nothing instinctual or spontaneous going on here. Everything is a conscious decision. It’s why I’m hung up on routines, I can plan around them. They’re safe. Predictable. We start getting into dangerous territory when I have to do something suddenly.
Which is completely alien to most neurotypicals. In business people tend to respect and admire the ability to think on one’s feet. I find this extremely bizarre, as a snap judgement is rarely as good as a thoroughly-considered one. Asking an Aspie for their gut reaction is not a wise idea. Because if they’re like me, there are no “gut reactions”, everything is mentalized. If you have a query that is more than superficial, I have to process it and script out an answer. Forcing me to do this quickly freezes the computer, sort of like you’re out of RAM. Oh, wait, a better picture just flashed into my head to describe it. I saw one of those old-fashioned typewriters, the ones with the keys controlling little individual letters on long stems that come up to strike the ribbon. If you ran across one of these as a kid the first thing you would do is smash your hands down on the keys, trying to seize it up by jamming all the letters together.I just lost everyone younger than myself. Go look it up on the internet. If you’re forcing me to answer quickly, by doing it in some sort of formal setting or in front of a bunch of people I do not know very well, I’ll just splutter and look stupid. It gets better with practice, but I doubt it would ever be smooth.
Even emotions are intellectualized to some degree. It isn’t that I lack them. Or empathy. It’s that rather than being a feeling, most emotions are experienced as a piece of data.
Which means I get to experience the world very differently than most people. I cannot sense the fantasy without recognizing it for what it is. It’s another piece of data. Self-delusion or denial is alien to me. Yes, I acknowledge the implicit fallacy of that statement. Perhaps it’s better to say that I believe I am significantly less affected by it than most people. This may in itself be a delusion, of course. Practically zen.
Think of it this way: the lack of connection to other people means that you get to watch human society like it’s a television show. Over time you become interested in the characters, even emotionally invested in them, but there is always that barrier between what is happening on the screen and reality. To take the metaphor further, there is a physical barrier between you and the show. You don’t get a choice as to whether you want to participate in the fantasy or not. It becomes insanity when you cannot distinguish between what is fiction and reality. Neurotypicals, whether they realize it or not, ride that line pretty closely and frequently cross over it. This should be distinguished from people like Trekkers who know that Star Trek is a fictional world, but would just really like it to be real. There’s nothing harmful in that, one might even call it idealistic.
But, as Terry Pratchett writes in Hogfather, “humans need fantasy to be human.” In another of the Discworld novels he says that wizards are different from everyone else because they see what is actually there. One of his characters, Susan Sto Helit, is the adopted granddaughter of Death. She is hyperaware of the world around her, capable of distinguishing each of the rocks beneath her feet and the stars above her head. Like the wizards, she does not ignore things that can’t be explained. For example, she is a governess to two small children who claim there are monsters underneath the bed. Instead of dismissing the kids, she drags the monster out and hits him over the head with a fireplace poker. The parents rationalize that she’s bent the poker for dramatic effect. Sam Vimes, the commander of the Ankh-Morpork City Watch, is knurd, i.e. he’s several drinks shy of normal. Hypersober, he lacks the solace of the comforting stories people tell themselves to make life bearable.
I believe I am naturally knurd. The most difficult part of growing up was never feeling like an outcast. Lots of kids feels that way for one reason or another. Some even take pleasure in it. But imagine going through life seeing it exactly as it is: completely objective evaluation, no subtext, no rationalizations, not being able to lie or delude yourself into believing something more pleasant or to deny that something awful or embarrassing had happened. It was (and is) the complete and utter realism of everything that is difficult to bear.
It makes maintaining relationships with neurotypicals difficult. Whether it is a colleague in the workplace, a friend, a family member, a lover, or a child, at some point I will screw up and tell them something they did not want to know. Denial is the most purely human emotion. People become extremely disturbed when you threaten their carefully constructed (and frequently quite elaborate) delusions.
The question becomes: are you going to exploit this tendency for your own benefit? I often find myself thinking that the difference between being an obsessive sociopath and an Aspie is a question of motivation. Maybe it’s a decision point in our development. As though both our types of brain start off with this lack of connection to the rest of humanity, but where the autistic brain actually does care about its fellows and only hurts them unintentionally, the psychopathic brain sees empathy as a weakness to be exploited for its own gain. Psychopaths seem to enjoy hurting others; I definitely do not. I only came to ponder this correlation from having an example of each in the family to study. My grandfather was a sociopath; his wife was autistic (or something close). What we share in common is that we are playing by a completely different set of rules.
It makes for a desperately uncomfortable childhood. To exist in the human world, for me, is rather like having a chronic illness. Some mixture of exhaustion, confusion, depression, anger, and that emotional isolation you get from knowing that caring about other people is just going to hurt everybody too much in long run but still not being able to avoid it. Even though I am in my mid-thirties I still feel like I always say or do the wrong thing. It doesn’t stop me from trying, but it always seems awkward. Fortunately, loneliness is not one of the emotions in my repertoire. Isolation, yes, but I feel that way all the time.
Every once in a while, because I am actually rather articulate about it, people will ask me what it’s like to have Asperger’s. I can only give you metaphors in an attempt to explain:
It’s living life in the darkness. If you know where all the furniture is you can make your way around, but if it moves, you will trip.
It’s experiencing your own emotions in the third person.
It’s watching life in full color when everyone else sees monochrome.
It’s seeing everyone else live their lives like a television show; they all share a common reality but you are on the other side of the screen.
Should you feel sorry for me? No. I neither want nor deserve your pity. For every instance of me not being human there is an instance where I feel grateful to not be controlled by my emotions. For every time I get accused of being to obsessively detailed, there is a time where I am grateful to not be driven by superficial nonsense. To be largely unbiased, free from bigotry or racism. For every time I get accused of not reacting to something quickly enough, I get praised for being cool under pressure.
Being autistic simply means we have a different set of advantages in life than neurotypicals. It is placing an arbitrary value on those which leads to pain.
For all of these reasons, I am very conscious of a feeling of disapproval. That I don’t do things “right” and there is something “wrong” with me. It is a lifelong source of frustration and of disappointment. Not necessarily in myself, although there is some of that, to be sure. No it is sadness that the rest of the world is inhabited by unique and special people that get marginalized because they are different. And that they are made to feel less valuable by the authority figures in their lives.
The most interesting thing about it, and I’m using “interesting” in the ironic sense, is that, in many ways I consider being autistic a gift. I get to experience life in a way that seems completely different from most people. I get to think about things in a different way; I see patterns others do not. Hell, many times I see things that they do not. And I don’t just mean being able to physically visualize things most people can’t (although that also seems to be true), but I get to view the world without the lenses of delusion over my eyes. Admittedly, this is a double-edged sword. I am constantly surprised by how much people lie and distort on a daily, even momentary, basis. You get to figure that out when you’re inherently naively honest. It’s rather difficult to be optimistic under such circumstances.
And, yet, I still try.
I’ve come out three times in my life. The first time I revealed that I was a neopagan in the Bible Belt. After that particular combination of rank naïveté and abject stupidity was past, telling people that I was bisexual was a cake walk. Coming out as being on the spectrum was by far the most difficult and took the longest to come to grips with. I’ve moved beyond religion and no longer feel that “bisexual” is an accurate description of my sexuality (“straight lesbian” is closer, but I’ve decided that it’s largely irrelevant what you call it in any case), but I’m still autistic. What a weird thing to think that was the most personal revelation. The most intimate.
I think it is because I have no choice to not have Asperger’s; it was chosen for me. I would also say that my sexuality was pre-determined, but if some hypothetical Divine Architect asked me which one I might like to have a choice about, I would say autism. Without a moment’s thought. And that was the hardest part to accept. That some part of me would really like to have been given that choice. It took me the better part of two years to be able to say, “you know what? If you had let me choose … I would choose this. I would choose to have Asperger’s. It isn’t being an Aspie that is making me unhappy, it’s grading myself by neurotypical standards. Every person has strengths and weaknesses; Asperger’s has given me a lot of strengths and if I want them to count, then I have to insist that they be seen that way, even if I am the only person who does so.” And from that moment on, I was free. I could recognize it, I could articulate what it was like, and I could share it.
I didn’t actually intend to do it publicly, but my job ultimately became so stressful I chose to do so in order to make my work life a bit easier. I also started blogging about it. Many people think blogging is self-indulgent (and it is), but it is one of the few cases where the anonymity of the internet is beneficial. To the irreligious it is the Great Confessor, where you can open up about your soul for examination. Unfortunately what this has actually revealed is that behind the (very, very thin) veneer of civilization humanity are largely ignorant, hateful perverts who for some reason like to look at cat pictures.
In my case, however, it was merely therapeutic. And received a reaction I did not expect. I came out first on my blog at work and a few things happily astonished me. The first was the outpouring of support I received from everyone who read it. The second phase was of people who wrote to me, not in the comments section, but at my email address and thanked me for writing what I had. Because they could look up my bio on the company directory and see that I have a full, independent life. And they, who had children with Asperger’s, had upon reading my blog something they hadn’t had in a long time … hope. The third thing that happened was that a friend at work began copying and sending them on to a friend of hers who is a social worker. In a fairly short amount of time, my blog postings became circulated amongst the parental support group of the Upper Midwest.
And the question I get most frequently from all of these people is: how did you get here? And I have to consider that question carefully because it comes in two parts. One is how I ended up on the spectrum in the first place; the other is how did I train myself almost out of it. The more I came to consider it the more I realized that those two questions have the same answer: genetics. I was born on the spectrum because my father is an accountant and my mother is a statistician. Both of whom, by the way, have subsequently tested as being on the spectrum, as well. So, two highly systematic and analytical people produced a highly systematic child. Both Mom and Dad also come from a long line of … well … self-absorbed, introvert assholes, to be honest. And as a result, they were absolutely determined that their baby girl was not going to turn out like her grandparents.
We’ll see how that turns out. But at the very least, we can take a look back through time and see the genetic soup which created me. Or, rather, didn’t …