A Personal Tale of How the Intense World Feels from the Inside

I think there is little doubt that autism runs in my family, and that the kind of autism we have is best described by the intense world theory. The dominance of positive feedback in our neural systems goes a long way toward explaining a large number of traits, including my being mildly bipolar. Another thing that happens to me on occasion also now makes sense in the light of the intense world theory. Every so often my skin becomes hypersensitive. Some times it is more intense than others. Often, my joints and muscles ache and my mind is racing — I cannot remain asleep for more than a half hour at a time — and I become ravenously hungry, but then be able to satiate that hunger with, say, a handful of chips. Everything moves at top speed in me. After a few days, it will subside.

This makes perfect sense with the intense world theory of autism. When positive feedback dominates, the system in question cycles. This is true of any scale free network process, including neural networks. There are times when I don’t feel very much; but most of the time the cycles are subtle enough that they are not all that noticeable. However, sometimes those cycles run amok, and the intensity increases and increases. There is eventually a crash back to normal, but the period of intensity can be a bit much.

When Your Work Is Who You Are

My wife has observed that my work is deeply intertwined with my identity. It was not the first time she observed it, but sometimes the Nth time you hear something is when you start to think about it.

I hadn’t really thought about it before because she was and is right. It seems so natural to me. I am a poet/playwright/interdisciplinary scholar/spontaneous order theorist. When I wake, those things are on my mind; they are on my mind throughout the day; they are on my mind when I go to sleep. My mind is always active, thinking about my various projects.

Asperger’s has been called the “Little Professor Syndrome,” and I certainly fit that description. When I was obsessed with dinosaurs, I could have held my own with a paleontologist; when I was obsessed with sharks, I learned everything I could find on sharks; when I was obsessed with plants — and later narrowed that obsession to orchids — I learned everything I could find on plants and, particularly, orchids. That obsession later turned into molecular biology in college, then economics, then quantum physics (at least, to the degree one can learn about it without math), then chaos theory and complexity, then fiction writing, then poetry, then play writing. The older I have gotten, though, the more I have retained past interests. I remain curious about molecular biology, and I often think with the concepts of biology; I have increased my interest in economics, combining my interest in complexity with economics into Austrian economics and spontaneous order theory; I still write plays and poems.

One of my more recent obsessions is learning about autism. When I learned my son had autism, I did the autistic thing and became obsessed with the topic and learned everything I could about it. My familiarity with molecular biology and neurobiology helped. It was in dong this research that I learned I had Asperger’s.

It turns out that those with Asperger’s deeply identify with the work they do, with the work with which they are obsessed.

If the person with autism can find a place that will indulge his obsessions, he will be a great worker and will do great work. If the person with autism cannot find such a place, he won’t allow that job to interfere with his “real” work. One can perhaps imagine what the outcome of that is likely to be.

For autistics with advanced degrees, like me, the logical place to work is a university. And if universities were primarily interested in research, scholarship, and teaching, they would be the ideal place for autistics. Unfortunately, universities are primarily interested in more fully developing their bureaucracies, playing university politics, and engaging in all sorts of social games at which autistics are terrible. If universities were places where a professor could see that something was not working, and the next semester change the way he taught classes based on his observations of what worked and what did not, they would be ideal places for autistics. However, universities are now places where professors are pressured into teaching the same way as everyone else, no matter what the educational outcomes may be.

It seems, then, that there are no places to support people with autism. There is no institutional support; the institutions we have are structurally opposed to both the strengths and weaknesses of autistics, while thoroughly supportive of both the strengths and weaknesses of neurotypicals.

Worse, because people like me are so personally identified with their work that that there is little differentiation between the work and person (please note I said “the work” and not the ideas, as particular ideas will be chucked if they prove not to work out), we tend to take it quite personally that nobody wants us or wants us to do what we are good at. We resent the fact that we cannot make a living being who we are, because of the prejudice against us built into the institutional structures of society. I do not know if there was ever a time when things were better for those with autism; however, I suspect that before the growth of bureaucracy as a fundamental institution in all areas of life, life for high-functioning autistics, at least, was much easier.

Learning to Act Human, Part II

After I learned my son had autism, I learned that I have Asperger’s Syndrome, and so I have actually taken it upon myself to read some things that might help me.

One book I have come across is the Asperger’s Syndrome Workplaces Survival Guide. The first page and a half pretty much described my work history: problems keeping a job over the long term, problems with the fact that I actually want to get my work done and don’t want to be bothered with all this nonsense that seems to fill the work day and prevents me from getting anything done, problems with the fact that I’m not all that social, problems with the fact that (until I became aware of it) I would sometimes say inappropriate things. The author asks the question all of us on the spectrum ask: “What is more important: chatting in the lunch room or getting your work done?” People on the autism spectrum (apparently mistakenly) think it is the latter. Worse, those with AS can appear to be rude, hard to get along with, or bullheaded, when in fact none of these are true. Those with AS don’t have the same internal censors — we have to learn those. We are easy to get along with; we may just not understand social cues we haven’t consciously learned yet. We aren’t bullheaded; we are open-minded and adjust what we believe based on facts and information — we just insist you provide facts and information.

The book is all about helping those with AS understand what is expected of them, to learn how to navigate the workplace. One could ask, “Why is it I have to do all the adjusting?” Well, because the neurotypicals offer most of the jobs available. More, even if you are entrepreneurial, you will still have to interact with neurotypical people. At the same time, a very high percentage of people with AS have college degrees, including graduate degrees. Businesses are missing out on a huge pool of talent because they are excluding a lot of people just because they “don’t get along” with others — when in fact it’s not that they don’t get along, but rather that they just want to get their work done. Businesses are too often getting second best people because the first best don’t have great social skills. And — as I can certainly attest — those with AS are as a result misallocated human resources.

Another book I ran across is The Partner’s Guide to Asperger’s Syndrome. I read the Foreword, and (though I subscribe to the Intense World Theory of AS and autism — at least for my son and me — rather than the less-competent-Theory-of-Mind model presented in the book) I recognized a great deal about me as a husband and father there. In short, everything I read about AS behavior and the social consequences of those behaviors has been a mirror. There is practically no doubt in my mind I have AS. It explains many of my actions, my thinking, my social interactions, my attitudes, etc. The good thing is that in knowing this about myself, I can actually know what to do to fit in better. I have done so over time as it is, without knowing I have AS. When people are bold enough (or asshole enough, depending on their attitudes) to point out my eyes won’t focus on them or that I primarily look at their mouths when I talk to them (leading me to working on looking people in the eyes — a real cognitive effort, I assure you) or that I cannot engage in small talk or that I sometimes say inappropriate things (which I have gotten much better about, being made conscious of it), I can change those things.

So now you know why I’ve acted weird around you, if you’ve ever gotten to interact with me personally. Just remember: if I’m working, for the love of God, don’t interrupt me! 🙂

Learning to Act Human

In my research into my son’s autism, I came to realize a great many things about myself. For example, I have in many ways spent a great deal of my time “learning to become human” — or learning to “fit in” with normal human beings.

Most of the time, when I talk to a person, I am either looking all over the place or looking at the person’s mouth. I have had enough people complain about these things that I have trained myself to look a person in the eye. However, to do so takes quite a bit of concentration. If I think it is important to keep eye contact with you, I can, but it requires mental work to do so. As a result, though, I am almost certainly not paying as much attention to what you’re saying as you would probably like, and I’ll probably have to ask you several times to repeat yourself. Maintaining eye contact is, of course, natural for most people.

In one of his stand-up routines, Chris Rock observes that when you first start dating someone, you are not actually dating that person, you are dating their representative. This is not just true of dating, but of any initial social interactions. Again, this comes natural to people. Everyone understands you are supposed to present an edited version of yourself to others. This is innate. But not for me. I literally had to read somewhere that you should not put forward all aspects of who you are when you first meet someone, because it’s off-putting. This was seriously news to me. I saw the validity of what the person was saying, and put it into practice. My dating life improved considerably — as evidenced by the fact that I am now married. That this took a while is evidenced by the fact that I am 46 and I only got married 11 years ago. My first actual girlfriend? When I was 26. Who knew that you shouldn’t present yourself exactly as you are when you first meet someone? Well, most people, apparently.

I am sure there are many more, but these are the ones that stand out to me.

I still haven’t figured out how to engage in small talk, though economist Peter Boetkke’s observation that in order to get tenure you have to subtract what he calls the “lunch tax” — which is any off-putting (typically, political) discussion — has benefited me greatly of late (keep all political views on the down-low, at least until you feel out the person you are talking to; keep any controversial beliefs to oneself; etc.). This is really a variation of the previous observation, just applied to work. But, again, I had to have it explicitly pointed out to me.

What this suggests to me is that there are a set of behaviors that are more natural for others that simply have to be learned by me (and, I would guess, others like me). I have often not even realized there is something atypical in my behaviors until they are pointed out — either directly, by friends (or people who don’t like me), or indirectly, by reading. Or perhaps, these behaviors are all learned by others, only my tendency to separate myself from other people resulted in my missing those lessons from life. This would be consistent with the intense world theory of autism.

In any case, there are a number of aspects of life which I have had to learn, which were not instinctual for me. The problem is that one cannot learn anything about which one is fully ignorant. I cannot know to learn about gene regulation proteins, for example, until I learn that there are gene regulatory proteins. There are obviously a great many facts like that which we all must learn — and learn about to know we need to learn them. Now imagine that that included social behaviors. Most people learn social behaviors like we learn language — we learn the specifics of a given culture, but we learn then innately because we are born with a “language instinct.” But I do not. I learned most of my social behaviors like I learned molecular biology. Well, that’s the story of my life.

Learning social behaviors only after I have had people point out that I was not doing them. Since such things are instinctual for most people, the assumption is that they are instinctual for me as well, meaning when I am not doing them, I am being rude, a jerk, etc. However, when I learn what I was doing was wrong, I have typically tried to change, to normalize my behaviors. It’s not that I don’t want to engage in typical social behaviors — it has typically been that I didn’t know about them in the first place.

Inside Asperger’s, Part 2

I am full of sensory sensitivities.

  • I prefer overcast days to bright sunshine; the bright sunshine bothers me, is too intense
  • I cannot stand for anything to touch my wrists
  • Food textures matter for taste
  • I hear background noises over foreground noises; I cannot filter out the background noises
  • I have to have the T.V. turned up very loud when the children are awake; I can turn it down very quiet and still hear it when the house is silent
  • If I am talking to you, I sometimes cannot hear you over everything and everyone else

It often seems like I’m not paying attention—especially when I ask you to repeat yourself. But I really am trying to pay attention. And the fact I’m not typically looking you in the eye adds to that perception. My eyes wander all over the place; I look distracted or like I’m looking at someone else. It takes a lot of energy to look you in the eye, so if you want me to really hear what you’re saying, don’t insist on it.

If you touch me, it takes about 20 seconds for the feeling to finally dissipate. Right now I can still taste the lunch I ate over an hour ago. Images linger and sometimes travel with me. When I walk the dog at night, I often see images of characters I had just seen on T.V. standing in the darkness.

All of this is overwhelming at times. Some days are better than others; other days are much worse. It’s all cyclical. I’m moderately depressed, moderately manic, equally cyclical. My interests ebb and flow. I cycle between scholar and artist.

If someone’s in pain, I’m overwhelmed with empathy; I feel the pain, mental or physical. I feel it deeply, intensely. When my father lost part of his left arm in a mining accident, my own left arm became racked with intense, throbbing pain. It is so much, I typically avoid situations in which I would feel empathy toward others. I have to switch it off, because if it’s on, it’s too much. This intensity of feeling can come about with the right song, the right emotional situation. It’s either on, intensely, or kept well at bay. Well at bay is preferred.

If you tell me you’re going to do something, that we’re going to do something—if you make me a promise of any kind, direct or implied—I will think about it and think about it until you do what you said you would do. You have to do it, or I get very upset. The problem is that changing mental direction may be easy for most people, but for me it’s like turning the QEII completely around. What doesn’t seem like a big deal to you in changing a plan (perhaps you’re too tired, which is perfectly reasonable), is a very big deal for me. I can understand why you want to change plans on one level, but on another the change is unavoidably upsetting to me.

Discovering My Asperger’s

You have a child.

He learns to speak very early. He can read Dr. Seuss books by 2½. He learns things very quickly. He begins writing at a very early age and, being very imaginative, begins writing stories. He has a fascination with nature. He loves to read everything on every topic, from nonfiction to fiction. He is generally well-behaved, though often argumentative.

He cannot look you in the eye when he talks with you, but rather looks at your mouth or his eyes are darting all over the place (making him hyperaware of his surroundings). He is socially awkward and has difficulty making friends. He prefers to spend time alone, whether in his room or walking in the woods. He obsessively makes lists—lists of dinosaurs, then lists of sharks, then lists of plants. Everyone agrees he is highly intelligent, but the standardized tests at school suggest he is average. He is exceptionally good at seeing patterns.

I think most people would be pleased to have the first child. That child is obviously intelligent, but otherwise quite normal. The second child, on the other hand, is obviously autistic. More, the two children seem opposites. Autistic children aren’t supposed to be imaginative, and they have speech delays. But if you combine the two, you get a child with Asperger’s. Of course, not all children with Asperger’s have the same traits. But like all autistic children, children with Asperger’s have difficulty communicating, even though they don’t have the speech delay, and they also have coordination problems. Being a writer doesn’t mean you don’t have communication difficulties outside of writing.
Since we learned Daniel is autistic, I have read a lot about autism. One claim that confuses me is the claim that autistic people aren’t creative. That’s hardly my experience. In fact, there’s good evidence that most gifted and talented children are somewhere on the spectrum, probably with Asperger’s.

The Intense World Theory (IWT) of autism, which describes me and my son almost perfectly, makes it possible to have an autistic person who is also creative. Given the belief that autistic children aren’t creative, his creativity would make one wonder about his being autistic. More, from the description of autism from the IWT, the two people who know me best—my wife and my brother—each independently concluded that I probably “have that” well before I was officially diagnosed.

Of course, nobody would have thought there was anything wrong with me growing up. Asperger’s was unheard of in the U.S. in the 1970s and 80s, and autism was practically unheard of. Besides, what is wrong with a child who speaks early and reads by two and a half? And later, when he spends his time in his room reading books and making lists, it’s because he’s just a little peculiar, because he’s so smart. He likes to spend time in the woods because he likes nature. And he does have friends, even if he doesn’t spend that much time playing with them.

The difference between Daniel and me is that he had a speech delay. And he’s having some difficulty learning to read. His language improved quite a bit, and based on his vocabulary and the things he says, few would think there’s a problem. His speech patterns, though, may give it away. At the same time, as he gets older, I see much more of a continuation between him and me. His world might be a bit more intense, is all.

Indeed, the fact that IWT autism means you have a brain dominated by positive feedback also explains much. It explains why I swing between high and low energy—one would typically consider me to be mildly bipolar. It explains why I am sensitive to food textures and to things touching my wrists and neck—and general touch-hypersensitivity at times (high energy times). And it explains my extreme empathy—which makes me socially uncomfortable at times, yet allows me too to really hone in on people’s problems. And it makes me particularly interested in stories. I love fiction, and I love to write fiction.

Indeed, IWT does seem to explain so much about me. It is a fascinating insight.