It’s easy to think nothing (not for me)–
It’s how most people live (but I am plagued
By never-ending thought–what luxury
To think about nothing). I’ve often begged
For silence, thought’s inaction (it’s an act
Performed by neurons using what they’re fed
And thus thought has no being) to refract
Us to a state I’ll only meet when dead.
When thinkers think to concretize their thought
To become being, being-thought, at last,
They turn to making, poetry, not nought
Embraced by nihilist, iconoclast.
And yet unthinking order guides each mind,
Unthinkers, thinkers both, to all they find.
In The Souls of Black Folk, W.E.B. Du Bois says that blacks have a sort of doubleness in them not found among whites. Blacks cannot just “be themselves,” but must always think about how they are being perceived by whites. This creates a sense that you are always of two minds: that you are not only thinking and doing, but that you are thinking about how others perceive you, and adjust accordingly. Whites never have to deal with this. Being the majority and having the majority power, they can just be themselves without worry about how anybody is thinking about them.
Du Bois would probably not be surprised if he learned that other minorities were put in similar situations in the U.S., but it probably didn’t occur to him that there were people out there with different kinds of minds, and that they too would develop such a doubleness.
I know all about this double-mindedness, because I experience it constantly. I not only have to think about what I’m going to say or do, but I have to think about how others might take it. I can either just say or do whatever I want as I want and hope that I don’t do something that will set people off, or I can always consciously think about everything I say or do before I say or do it, testing against what I expect the expectations are (and hoping I’m getting those right). If it takes me a moment to respond to something, it’s because I’m going through all this nonsense to make sure I don’t say or do something wrong.
Now, you might expect this to take place in a 45-year-old man, but you wouldn’t expect it to take place just quite yet in an 8-year-old boy. However, Daniel has said some things that shows he–on some level, at least–does understand that he has to engage in this double-mindedness.
While we all behave differently in different environments–school, home, church, work, etc.–rarely do we think these things through. However, when I asked Daniel one day if he behaved at school the way he did at home, he told me that because he has to keep it together at school, he likes to “go crazy” at home. That is, this is something he’s actually thought through. Other children may do the same thing, more or less, but how many would articulate it as such?
More negatively, Daniel has complained that his “brain is rotten.” He understands that the way his brain works is not the same as everyone else. While we would certainly prefer him to think of his brain as merely different and not as “rotten,” we get what he, as a 7-year-old at the time, was trying to articulate. When he complained one time about this, we pointed out to him that I have autism, just like him, and (because the kids happened to be watching Ghostbusters II at the time) that Dan Akyroid has autism. We suggested that someone with as much education as I have and someone who is a successful and funny actor couldn’t really have rotten brains, but that rather our brains were just different.
Unfortunately there is the too deeply human belief that “different is wrong,” and Daniel will have to learn otherwise as he matures. Because I hardly thought of my brain as rotten (everyone always said how smart I was), I thought that everyone else, being different from me, were wrong. The way that they thought was stupid, as far as I was concerned. Now, knowing what I know about myself, I realize that it is my way which is divergent and different–but that doesn’t mean rotten and wrong.
Daniel also sometimes insists that nobody likes him, that he has no friends. When we ask his teacher, she keeps insisting that he plays with the other kids all the time, meaning that there is some sort of disconnect between what others see happening and what Daniel seems to perceive. I think it’s pretty clear that Daniel understands that the other kids all think he’s “weird,” which he interprets as them not liking him. It probably doesn’t help that Daniel directs play more often than not, and can get upset when people aren’t “playing right.” Most kids aren’t going to like that, and Daniel, not understanding why they wouldn’t want to be his pawn pieces, interprets that as them not liking him or wanting to play with him. So there is likely some combination of awareness and ignorance at play, though both are driving Daniel to develop this dual awareness.
It’s probably a bit much to expect neurotypical people to allow us to just be ourselves. After all, viewing neurological differences as positive is a recent development, and it’s going to take a while to catch on. Maybe there will be a day when people with different neural structures or different cultural backgrounds can just be themselves without having to think about how they will be perceived by the power majority. We don’t know what will be gained, or possibly even lost, if and when that happens, but it would be interesting to at least find out. Daniel’s double-mindedness is already being developed; perhaps his own children won’t have to go through that.
Humans are hypersocial, but hypersociality doesn’t necessarily mean acceptance of diversity. And yet, humans do manage to be both hypersocial and accepting of difference. Recent research suggests that the acceptance of diversity occurred about 100,000 years ago, and allowed for more general accepting of such diversity as autism.
Why is this important? Well, if wider acceptance of neurodiversity, meaning diverse ways of thinking and behaving, were to be adaptive for groups, we would expect humans expressing such acceptance to have come to dominate. What was later developed as specialization and gains through trade likely started with a general acceptance of different kinds of human behaviors within the tribes.
Why is acceptance of neurodiversity important? Well, neurotypical people are great at copying what everyone else is doing, but it turns out that as a result, they are actually pretty poor at coming up with new things. Autistic people in particular tend to try to solve things without relying on how things have always been done. This results in innovations that improve the material conditions of everyone in the tribe, and which everyone else dutifully copies. As a result, there is a balance between stable copiers and unstable innovators that keeps human populations on the edge of order and chaos, known as criticality. This is in fact the most creative space a self-organizing network process can be in.
Presently there is not a lot of acceptance of neurodiversity, at least not in the U.S. There is some anecdotal appreciation of a few people who people think may be on the spectrum, but these people are typically seen as outliers rather than a healthy part of our social networks. So much emphasis is put on everyone being the same and acting the same and thinking the same (lip service to “thinking outside the box” notwithstanding) that people who are in fact different in the ways they think and act and experience the world are held in contempt.
In fact, it is this contempt in which we on the spectrum are generally held that I try to focus on many of the positive aspects of being on the spectrum. We need to have healthier attitudes toward neurodiversity precisely because groups that don’t have such diversity stagnate at best. And really, nature abhors stagnation, meaning there is either growth or death. Dynamic tensions create growth; eliminating those tensions results in equilibrium, or death. A healthy society is a diverse society.
Do you have trouble keeping secrets? Do you find you typically tell the truth, even when it’s socially inconvenient? Do you tend to over-share with everyone, including complete strangers? Are you direct and to the point–to the point that people often think you’re rude? Are you unsure what is or is not acceptable joking? Or what is or is not an acceptable comment? Are you unsure why people want to talk about the same daily nonsense and don’t understand why they don’t want to talk to you when you’re the one with something interesting to say?
If this sounds like you, you may be part of a small bioculture people call “autistic.” I say “bioculture” because it recognizes the fact that culture has its roots in human biology, in neural structures. All of the normal things neurotypical humans do are part of the broader underlying human culture, of which there are many variations. Those underlying patterns on which cultures develop–which include keeping secrets, having privacy, being indirect, engaging in small talk, and understanding the social rules of appropriate comments and jokes–are simply not the natural patterns of autistic people.
I want you to imagine for a moment a culture of autistics. Imagine, if you will, a culture where everyone means what they say and say what they mean, sugarcoat nothing, are always direct, rarely if ever lie, consider fixing problems to actually be a demonstration of empathy, engage in almost nothing but in-depth conversations about a wide variety of topics, do not typically fear death, value rationality and evidence above everything else, simultaneously respect other’s privacy while also being an open book themselves, consider science fiction, fantasy and video games to be the height of culture, are science and fact-oriented, and almost everyone has perfect pitch.
How would you feel? If you’re on the spectrum, it sounds like heaven. (Would we be as anxious as we are now?) But if you’re not, how socially awkward would you be? Remember what I said about if we pathologized neurotypical behavior.
Am I a person with autism or an autistic person?
The latter identifies the person with disability; the former is “person first,” and suggests that the person and the disability is different.
If we are talking about a paraplegic or someone who lost an arm, person-first language would make sense. However, I am not a person with autism. That is, if you could “take away” my autism, there would not be a “Troy Camplin” left that in any way would resemble who I am. Autism is a brain structure difference, and that difference results in a particular way of thinking, behaving, acting, interacting, etc., and affects personality.
That is, I am utterly indefinable outside of the autistic structure of my nervous system. The same is true of my son, Daniel. He would not be him, with all his wonderful capabilities and occasional frustrations and difficulties, aside from the autism. Daniel is an autistic person. So am I. We are not people with autism, as though the autism could be taken away and we would remain the same (absent a few communication difficulties). No, we are autistic people. Quite different in our thinking, behaviors, interactions, etc.
This is different from saying I am a person with dark brown hair (or, increasingly, without much hair). The color of my hair does not affect my personality. I am a person with hazel eyes. I am a person with slightly low blood sugar. I am certainly a person with a large number of traits that have nothing to do with my personality, behaviors, thinking, actions, etc. Skin color, nationality, ethnicity, etc have no effect on my morals, behaviors, interactions, etc. But my being autistic does.
The thing with the “person first” language is that it participates in the medicalization of autism. If a person has cancer, you would definitely say they are a person with cancer and not call them a cancerous person (talk about a difference in meaning!); it’s a person with diabetes, not a diabetic person; it’s a person with psoriasis, not a psoriatic person. Things that can be potentially cured, treated, or truly controlled are things appropriately medicalized, as they are diseases of different kinds.
But I am not a disease. I don’t have a disease. And I really don’t have a disability, except from a purely neurotypical-centric world view. Nobody would consider me disabled because I’m left-handed in a right-handed dominant world. Many things are designed exclusively for a right-handed world, making many things difficult for those of us who are left-handed. But do those difficulties make us disabled? Of course not. We adjust. We sometimes find left-handed utensils. Sometimes people adjust to us (letting us sit with our left elbow away from everyone at the dinner table, for example). But we’re hardly disabled on account of it.
And the same is true of being on the autism spectrum. I adjust to the neurotypical world. I try to find autism-friendly social situations when possible. And sometimes neurotypical people need to adjust to us. Failing to do so is simply selfish and rude. Especially if we tell you that we are on the spectrum and explain our communication differences. If we do that and you call those things “excuses” and refuse to adjust your expectations, that makes you the asshole, not us. We don’t mean to be rude, even if we sometimes do things that can be interpreted by neurotypicals as rude; but when we apologize and explain ourselves, the decent thing to do is to accept our apology and to try to understand the communication breakdown with us.
To say someone is a person with something is to say that they remain the same whether they are with the thing or not. I am the same person whether or not I am with my computer, whether or not I am with my cup of coffee; even whether or not I am with my wife and children. I’m a man with a wife and children, not a wife and child person. But I am most certainly an autistic person. It is part of my state of being. My very existence is unthinkable in its absence.
When you read about autism, you typically read about it as a pathology. Autistic people are viewed as being normal people with pathological deviations from the norm. Every so often you will come across an article that delineates a few of the special abilities of people on the spectrum, but even in doing so, it comes across as “well, at least there are a few positive things that come out of this tragedy.”
Autism is a structural variation in the brain’s architecture that gives rise to differences in processing and in different abilities. One may even argue that it gives rise to a different kind of mind. The vast majority of those people are in the “mild” end of the spectrum, though a great deal of focus is on the “extreme” end, with those who often cannot speak and seem to be particularly mentally disabled. This focus further pathologizes the spectrum precisely because it does not fully or even properly represent the reality for most people with autism.
To fully understand my point, I want to treat those not on the spectrum as though autism were the norm and what we now call neurotypical behavior were the minority. That is, I want to treat neurotypical people the way they treat people on the autism spectrum, from the perspective of someone on the spectrum. Because, from our point of view, you are full of deficits.
Irrational behaviors are one of the primary aspects of neurotypical people. Very often decisions are made without a great deal of thought or, certainly, research. This is especially true when it comes to their opinions. Whereas a sensible autistic person will do a great deal of research before developing an opinion or coming up with a proposed solution, neurotypicals have been observed to have an immediate opinion on things without, apparently, knowing the first thing about the topic. This is different from the kinds of errors autistics make from managing to miss something in their extensive research; rather, the neurotypicals carelessly won’t do any research at all before making a decision. And if they do any research, it will be at best a truncated version, as if they are impatient to come up with any answer at all rather than to make sure they have the right one.
It seems that a strong reliance on emotions is a typical reason for this immediate, almost knee-jerk, way of making a decision. As a result, it is not uncommon for them to agree with a solution that sounds good, sometimes regardless of the overwhelming evidence against the proposal, rather than something that has a track record of actually working. This seems to especially be the case in the areas of economics, the social sciences, and government. While this same tendency does allow them to respond more quickly to others, sometimes that is done at the expense of properly assessing the social situation. Fortunately, they do seem to have a particularly strong ability to make that proper assessment, so we must admit that in this particular case their pathological tendency toward immediate conclusions is often beneficial.
Having said that, there are some very strong negatives of that ability that seem to be combined with a kind of empathy that makes them more likely to identify more with people like themselves than with different people. While we autistics have a tendency to not be judgmental or biased, neurotypicals are terribly judgmental and biased. They judge people on things like race, sex, gender, deviations from the way they themselves think, culture, religion, and pretty much any difference one could possibly imagine, often to the point of hating members of other groups. Some autistics who have been raised with these people have learned these behaviors themselves, even though they are not typical to us. This makes associating with neurotypicals potentially dangerous, unless we remain on our guard against their biases.
This note on this particular moral deficit brings me to the topic of the large number of moral deficits commonly associated with neurotypicals. They have an under-developed sense of loyalty, and many do not seem to show any degree of loyalty at all. Further, they seem willing to lie about just about everything. The primary use of language for them seems to be to lie to each other. They will tell each other they look nice when they don’t; they will say one thing to one person, and another to another; they will backstab; they will tell their friends they are right when they know their friends are wrong. I could go on and on with the ways they lie to everyone.
They will also exaggerate and say things they don’t really mean. They will sometimes use words to mean completely different things. For example, I recently heard one of them say, “Give me a smack.” Which seems an odd request. But then I saw their neurotypical partner give them a kiss in response. How strange to ask for the opposite of a kiss and then to get a kiss! As a result, it can be very frustrating to deal with neurotypicals. You never know if they really mean what they are saying, you do not know if you can ever really trust them, and if you make the mistake of thinking they think the way you think, you will too often find yourself screwed over without your understanding what just happened.
Another odd behavior neurotypicals exhibit is their habit of “small talk.” From what we can tell, small talk appears to be talking just for the sake of talking. A “how are you doing” results in the same non-answer of “fine.” It seems unlikely everyone everywhere at all times is truly “fine,” so it seems that that is a non-answer to what is in fact a non-question. It has been observed that if you give an actual answer to the question, the questioner gets frustrated and impatient, as though they are annoyed that you would actually answer them. A whole conversation can actually go on like that, with general questions giving rise to pat answers so that you could actually change out any pair of people and you would end up with the same conversations each time. The vast majority of their conversations are not about anything of any substance, and, again, they seem positively annoyed if you try to engage them in such a conversation. As a group neurotypicals seem positively frivolous most of the time.
This frivolity extends to their work. They treat work as a social experience rather than as work. They don’t seem to treat work seriously or to engage in it with the kind of attention we autistics do. How any of them can keep a job is a mystery. Perhaps their ability to lie to their bosses and to pretend deference to them is what keeps them employed despite their inherent laziness. They also do have a tendency to do things exactly as they are told to do them rather than to find new ways of doing things. While one could view this as a lack of creativity on their part, in many cases it is useful to have a group of people who will unquestioningly do what they are told. If you can keep them from wasting their time socializing, businesses could make good use of this tendency to conform and engage in groupthink.
How It Feels to Be Made a Problem
I’m guessing you didn’t like the above description of yourself. You no doubt agree with many of the things listed, that they are all-too-often traits of the typical person. And no doubt many of you have made positive efforts to overcome those things—especially such things as racism and sexism. Indeed, we on the autism spectrum also make an effort to overcome what are perceived to be deficits. And yet, there are no doubt things I discussed above that you would argue are unusual, to say the least, interpretations of your behaviors. Well, guess what? That’s how we feel about many of the things we read about people with autism.
For example, we read that we do not have empathy or a theory of mind. That’s utterly ridiculous to us. We fully understand you have a mind—we just treat you like you have a mind like our minds, which results in a number of errors on our part. But guess what? You do exactly the same thing. You treat us as though we ought to have your mind, and when we obviously do not, you actually go so far as to declare that we don’t have a theory of mind! In the past people used to dehumanize others from other races and cultures using exactly this same logic. Since the person from the other culture does not act like us, they must not be human like us. We now know this to be untrue—and to be outright racist—but this way of thinking still manages to creep into studies of people with autism.
Yes, there are studies of young children involving hiding a toy, removing the child who saw where the toy was hidden, then moving the toy elsewhere and bringing the child back in where the young autistic children do not properly recognize who knows what, but where are the studies of older children and even adults? Why is it that we autistic adults don’t make this mistake? Could it be that the development of this ability is simply delayed rather than absent? Indeed, I see a great deal of evidence that people with autism have a tendency to have to learn through direct instruction many more things than do neurotypical people, who seem to have a large number of instincts that allow them to learn certain things more quickly. This is a difference in learning, not necessarily a disability or pathology. It is slower, but more accurate. As with anything, there are tradeoffs.
Finally, I want you to consider something else we autistic are always hearing. Given the negative aspects of neurotypicals listed above, what would you think of calls to fix you? From an autistic’s perspective, you would be much better people if you were more autistic. You would lie less, be less biased and judgmental, and be less frivolous. You would waste less time at work and get more work done. You would say what you mean and mean what you say. From our perspective, life would be much better for you if you were more like us. Now how does that make you feel? I can describe you as a pathology, as a problem that needs to be fixed. I am certain you didn’t like it one bit. Well guess what? Neither do we. If people would spend more time talking to us rather than studying us as some sort of black box that can only be understood by external observation of our behaviors, you may have known that by now.
Different Isn’t Worse
People with autism aren’t broken normal people. We are different. Our brains have different architectures, different biochemistry. It is driven by differences in our genes. All of which give rise to a different way of thinking and thus to different minds. Some of our minds are closer to neurotypical minds than others. It is a spectrum, after all. And some people with autism are definitely disabled when it comes to living in the neurotypical world. But then, there are extreme examples of the neurotypical mind as well—people who are pathological liars, people without morals, people who cannot seem to tell the difference between themselves and the external world. The difference is that they are closer to you, and thus seem more normal to you. To me, a man whose autism would be considered “mild,” those with severe autism seem more normal. I get how they are thinking. It is different, not wrong. And if people were more accepting of those differences, I would predict that many of our extreme negative traits would lessen considerably. We are frustrated, and that frustration comes out in a variety of negative ways. But then, consider what would happen if everyone treated you as a disease needing to be cured and not as someone who needed to be truly understood in the least?
Coming to this understanding between autistics and neurotypicals matters. Given the negative social consequences felt by pretty much everyone on the autism spectrum, we can only conclude that autism is one of the last ways of being human for which it is still completely acceptable by everyone to discriminate against. We are punished in the schools, discriminated against there, with the result that only around half graduate high school. Those who go to college don’t do much better. And even if, like me, one not only graduates from college but gets graduate degrees, one finds upon graduation that the work world is almost completely hostile to you. Not because we can’t do the work—because not only can we do the work, we will likely do it better than the average neurotypical person—but because we don’t interview well, we don’t acknowledge hierarchies, we are blunt, we come across as arrogant, and we aren’t social in typical ways.
I wrote this piece in order to help the average person understand what it’s like to be treated as a pathology. It can just as easily be done to you as it has been done to us. Does that mean you are a problem that needs to be fixed? Or does that mean we ought to be considered fellow human beings whose minds are part of the natural variation among human beings, whose contributions to society are vital for social health? We correctly recognize that acceptance of cultural, ethnic, racial, and sexual diversity results in a healthy society. Perhaps we can one day soon include different ways of thinking, different kinds of mind as well.