Strong skills in ordering knowledge in preferred areas
Strong skills in perceiving small bits of information in preferred areas
To understand what we might learn from autistics, first we need to clear our minds of most of what one tends to hear about autism. As I looked into the autism literature and talked with and corresponded with autistic people, I was shocked to discover how ignorant I was. Forget you saw the movie Rain Man. Autism involves many different features of the human condition and is often connected to human tragedy, but I would like you to view autism from another angle. I would like you to consider the possibility that many autistics—and not just savants—have significant cognitive strengths.
Autism is discussed in at least two different and sometimes conflicting ways:
There is a very common subset of number 2, namely:
2b. Autism is about having lots of problems and bad life outcomes.
This last sentence represents the prevailing public conception of autism, that it is fundamentally a series of handicaps and disorders. Unless the problems dominate the discussion, there can be no autism, and anyone who suggests otherwise simply doesn’t know what autism means. At that point a long series of definitions is trotted out, usually invoking versions of number 2b, to discredit any contrary point of view. Many established definitions, most of all in formal diagnostic manuals, define autism in terms of various “impairments.”
Maybe there are some practical reasons for defining autism, and other neurodevelopmental paths, in terms of life problems. For instance some legal and insurance questions are settled by referencing whether an individual has a formal diagnosis. It is the presence of impairments that leads to a diagnosis, which leads to a court judgment (if only potentially), which in turn activates a payment or a legal claim or perhaps an educational classification.
But whatever the practical uses of such schemes of classification, understanding human neurodiversity in terms of impairments is fundamentally misleading. We are letting our understanding of some very real human beings be determined by formal medical and legal questions. There is a deeper approach that sets autistics into a broader understanding of the human condition, namely as striving people who learn all sorts of wonderful things, know many kinds of joy, and experience tragedies large and small. This understanding is both good for autistics and will help us learn from autistics for our own collective benefit.
Obviously autism often comes with problems. But a correlation should not be turned into a definition, any more than we should define sub-Saharan Africa as being full of poor people. If we define autism in terms of its problems, we will find it harder to understand how those problems come about, how to remedy them, and how to appreciate and build upon autistic strengths.
There is also an ethical reason why I don’t want to define autism in terms of impairments or failed outcomes. I don’t want to use the hammer of science to brand a group of people as “inferior” as a preordained social consensus. We’ve rejected such approaches to race and physical handicaps, precisely because we have, in those other contexts, realized that every individual matters and that negative stereotypes can be destructive. It is time to do the same for autism. No matter what you think is the average or the typical outcome from autism, and no matter how much tragedy from autism you have seen, heard about, or read about, please do not talk or write about autism as if it is like a broken arm, a defect to be repaired or destroyed and nothing but a plague on the world. When you refer to autism you are discussing some very real people, and some of those people are reading your words with great awareness and receiving the message that they are less valuable as human beings simply because of who they are. That’s neither good medical practice nor a good philosophic foundation for a society of free and dignified individuals.
With regard to non-autism disabilities, there has been a trend away from portraying disabled people as doomed and pitiful burdens. It is time to apply the same standards to our discussion of autism.
I conceive of autism in terms of a cognitive profile, namely cognitive strengths and weaknesses. The result is that—as you will see—problems will be frequent but many successes and good outcomes appear as well. Most of all, we will better understand the cognitive strengths of autism.
The cognitive understanding emphasizes that autistics differ in the very basic ways they experience the world and how they learn from it. The cognitive profile of autistics is complex but I wish to focus on two cognitive abilities in particular. First, many autistics are very good at perceiving, processing, and ordering information, especially in specialized or preferred areas of interest; I’ve already discussed this passion for information in chapter 1.
Second, autistics have a bias toward “local processing” or “local perception.” For instance an autistic person may be more likely to notice a particular sound or a particular piece of a pattern, or an autistic may have an especially good knowledge of detail or fact, again in preferred areas of interest.
To set off those two features for emphasis, the cognitive strengths of autism include:
Strong skills in ordering knowledge in preferred areas
Strong skills in perceiving small bits of information in preferred areas
Overall we’ve been learning that the cognitive strengths of autism are more significant than people used to think. Just to provide a brief list of such strengths, autistics have on average superior pitch perception, they are better at noticing details in patterns, they have better eyesight on average, they are less likely to be fooled by optical illusions, they are more likely to fit some canons of economic rationality, and they are less likely to have false memories of particular kinds.
Autistics are also more likely to be savants and have extreme abilities to memorize, perform operations with codes and ciphers, perform calculations in their head, learn to read spontaneously, or excel in other specialized cognitive tasks. Autism, however, has cognitive strengths with or without savant-like abilities; non-savant autistics tap into the same sources of cognitive advantage as do the savants, albeit in less extreme form.
A cognitive problem is that many autistics are easily overwhelmed by processing particular stimuli from the outside world. This problem is related to the aforementioned strength of local perception. An autistic might have a very sensitive sense of smell but also be bothered or burdened by what is to his perceptual equipment the overly strong scent of a perfume or a piece of chocolate. Or an autistic might be bothered by an alarm or a siren or by the flickering of fluorescent lighting. Sometimes the feeling of being overwhelmed is so strong that an autistic cannot function well in mainstream society. For instance some autistic people have trouble dealing with mass transit or other noisy, sensory-intensive public settings. For an autistic, the ability to control his or her environment has an especially high value.
Some researchers view autistics as having perceptual equipment turned either “very on” or “very off” rather than modulating at the more typical ranges in between. Some autistics for instance have either unusually high or unusually low sensitivities to physical pain. In this view autistics are a group of people whose “switches” are in unusual or extreme combinations of on or off positions. The thing is, the arrangement of the switches differs across each autistic person and that is one reason why it is hard to make accurate generalizations about autistics as a whole.
A somewhat different understanding of autism postulates that there is less automatic “top-down” control of how sensory perception is processed. So some forms of perception are stronger or more acute, yet again there is the danger of being overwhelmed at the level of perception. In this view the “top-down manager” of the brain plays a stronger role in non-autistics. The autistic interest in ordering information may reflect forces that become stronger when the top-down manager is weaker or turned off.
A number of cognitive problems occur in many autistics at higher-than-average rates. It is common, though by no means universal, that autistics have difficulty with speaking intelligibly or that they are late talkers or that they understand written instructions better than spoken instructions.
Some researchers include “weak executive function” (a bundled function of strategic planning, impulse control, working memory, flexibility in thought and action, and other features) as part of the cognitive profile of autism. Other research focuses on the question of “weak central coherence,” or failure to see the “bigger picture.” But it seems these are secondary traits, more common in autistic subgroups than in autism per se. The evidence also indicates that high-IQ autistics are quite able to see the big picture when they want to, even if they have a preference for processing small bits of information. When it comes to autism, very often whether a given generalization is true depends on which subgroup of autistics is being considered.
It is a common stereotype that autistics are unaware of the mental existence of other people, but this is a very poor definition of autism. Many autistics do fine on “theory of mind” tests and can understand the intentions of other people quite well. Furthermore many non-autistic children with handicaps, including linguistic handicaps, fail theory of mind tests just as some autistic children do. Theory of mind experiments usually test a complex bundle of human features, including attention-shifting abilities, interpretation of commands, linguistic skills, and common frames of cultural reference. A great number of autistics do find many features of mainstream society and social life quite baffling (I’ll return to this question), but it’s not because they are zombies with no conception of internal mental life.
In any case, if you take these cognitive abilities and disabilities and stick them into a rapidly evolving market economy, you will get some people who achieve relatively high social status and other people—many others—who end up with much lower status. That’s my basic view of autism as a social phenomenon, namely that for reasons rooted in perception and cognition there is a very high variance of outcomes across individuals. That’s true whether you look at outcomes in wages, outcomes in IQ, outcomes in scientific achievement, outcomes in music appreciation, and many other measures. The high variance of outcomes means it is easy to find lots of evidence of impairments in autism, but again that’s missing the bigger picture.
Understanding autism as more than just impairments does not mean that everything is ideal as it currently stands. It would be a very good thing if many autistic children and adults could develop more of the skills held in greater proportion by the non-autistic. But let us be consistent: I also think it would be good if most non-autistic people could develop some of the skills held in greater proportion by the autistic. As I’ll discuss in the next chapter, it is already a fundamental (yet misunderstood) goal of our educational system to teach (non-autistic) people some of the cognitive strengths of autistics.
I am using the words “autism,” “autistic,” and “autism spectrum” because these days that’s how most self-aware autistic people discuss themselves. The word “Asperger’s” can be used to refer to a person who has many cognitive traits of autism but fewer developmental difficulties at young ages, little or no delay in language development, and relatively strong verbal abilities. Researchers are split on the question of whether Asperger’s is conceptually distinct from autism, but over time the tendency has been to doubt whether a clear line can be drawn and so I will refer to autism unless the context requires reference to when other people use the word Asperger’s. Since Asperger’s is a more socially acceptable term, many people have encouraged the use of that word and concept, if only for fear of being labeled autistic and becoming outcasts. (You’ll find the word “neurodiversity” used in this manner as well.) There’s also a more sinister usage of the word “Asperger’s.” Many people believe that autistics cannot possibly have positive achievements and capabilities. So whenever an autistic does something positive, those people reclassify the autistic as Asperger’s in order to save “autism” as a purely negative category. That practice is one reason I don’t use the word “Asperger’s,” although I don’t want to pin that fault on the many responsible users of the word and the associated concepts.
You’ll also hear the word “nerd” associated with the Asperger’s concept. “Nerd” is a sociological term and thus it doesn’t map into autism in any simple way. Maybe many nerds belong to a subcategory of autistics but it would be wrong to think that most autistics would be viewed by the world as nerds. Nerds are typically precocious learners and many autistics are perceived as slow or mentally retarded (if only because of difficulties in communicating) even when they are not. The distinction between nerds and slow learners is another good example of the diversity of outcomes within autism.
My views on the cognitive strength of autism are much influenced by my former colleague economics Nobel laureate Vernon Smith. One day Vernon “came out of the closet” and announced to the world on television (later on YouTube, check for it) that he is self-diagnosed Asperger’s. He talked of his focus, his persistence, his attention to detail, how he perseverates about his ideas, and how socializing in public can exhaust him. Vernon also attributed much of his career success—he isn’t just a Nobel laureate; he is one of the more important and influential laureates—to what he calls his Asperger traits. To date Vernon is probably the highest-status person to make such a public admission. For the most part it fell upon a stony silence and many people don’t believe that someone as successful as Vernon could possibly be autistic.
Often outsiders don’t see the cognitive strengths along the autism spectrum because they focus excessively on what is highly or easily visible. Autism in the modern world is often about “diagnosis” and “treatment,” and that creates a selection bias. Medical professionals control the familiar definitions of autism and they meet those people or parents who come to them for help. It’s no surprise that these people and their doctors are focused on life problems. At the same time, many of the autistics with relatively high social status don’t want to affiliate with the concept or, more frequently, they are genuinely unaware that they might qualify as autistic in some manner.
Selection biases operate again if you visit the more informal gatherings of self-described autistics, Asperger’s, and neurodiverse individuals. The individuals who go to a support group or join an online discussion forum are often responding to some felt needs in their lives or experiencing problems. They would like advice or comfort from similar others. It’s good that help or at least consolation is available. But again, focusing on such groups will bias our understanding. The “observable autistics,” whether in medical clinics or online, usually aren’t the autistics, or the people along the autism spectrum, who hold the highest social status. Again, the universe of studies on autism has evolved to give us a slanted view of what autism is all about.
There are exceptions to this biased picture. Simon Baron-Cohen has done a good deal of work on autistic high achievers; his conclusion is that they are far more common than most people realize, most of all in the fields of mathematics and engineering. He stresses systematizing behavior as an important cognitive strength of autistics.
Craig Newmark, founder of the web forum Craigslist, has written on his blog that his history as a “recovering nerd” is connected to Asperger’s. It is perhaps no accident that autistics are known for their attachment to lists as a means of processing, recording, and ordering knowledge. Bram Cohen, creator and former CEO of BitTorrent, also describes himself in terms of Asperger’s syndrome. He founded the company at age twenty-nine and BitTorrent has been a pioneer in exchanging digital information over the web; one of his key insights was how BitTorrent could break up files into smaller bits and send through the bits rather than the whole file at once. Cohen mastered three programming languages by the age of sixteen and his work on BitTorrent is regarded as brilliant. The best-known example of an autistic high achiever is Temple Grandin, a woman who has pioneered commonly used improvements in animal treatment and slaughterhouses; her unique cognitive perspective has helped her understand when animals are afraid and how they can be made to feel more secure.
I’ve yet to see a scientific paper or serious clinical discussion of the autistics who hold political office, work in Hollywood, start web 2.0 companies, or run major U.S. corporations or hedge funds. If you still think such a path of achievement sounds crazy, go to Google and visit the website of the National Association of Blind Lawyers. Handicaps can be overcome or compensated for, especially by talented and determined people who are willing to focus on learning. Thomas Gore of Oklahoma (1870–1949) was a completely blind lawyer and he went on to become a U.S. senator for twenty years.
Or consider this parable: I once met a woman at a lunch party who is, for cognitive reasons, unable to recognize the faces of others. (This condition is known as prosopagnosia and it turns up in many popular books on neuroscience.) This same woman was the one person in the room who remembered who everyone else was. It turns out she has developed a system for remembering people by their clothes and that she applied her system very conscientiously and consistently; without the system she would be lost. People such as myself, who have normal face-recognition abilities, usually have no such system. The result was that this woman—some might call her “handicapped”—had a much better sense of the crowd than I did.
Charles Darwin, Gregor Mendel, Thomas Edison, Nikola Tesla, Albert Einstein, Isaac Newton, Samuel Johnson, Vincent van Gogh, Thomas Jefferson, Bertrand Russell, Jonathan Swift, Alan Turing, Paul Dirac, Glenn Gould, Steven Spielberg, and Bill Gates, among many others, are all on the rather lengthy list of famous figures who have been identified as possibly autistic or Asperger’s. I do not think we can “diagnose” individuals from such a distance, so we should be cautious in making any very particular claims. Still, the possibility that some of these people are on the autism spectrum cannot be dismissed, especially once you understand autistics as being able to learn and overcome initial problems.
The economist Thomas Sowell has written two books on “late-talking children.” Sowell argues that there is an entire class of people, including many people he knows and has studied, who are late talkers and have many of the traits of “mild autism.” These people have very high IQs, they have strong interests in mathematics and engineering, they are sometimes introverts, they take great pleasure in their work, and they often have a special relationship to music. He has studied these people by circulating elaborate questionnaires and then collating the results. Sowell fears that these people end up mis-classified as autistic and he notes that many of them are highly successful. It seems the main reason to disqualify many of them as autistic is simply that they are doing fine—they are intelligent, successful, and take pleasure in their work. Sowell is missing the point.
There is also a growing literature on children who have “recovered” from autism, often with little or no behavioral therapy. One team of researchers, led by Molly Holt, estimates that between 3 and 25 percent of children diagnosed as autistic develop to the point where they cannot be distinguished easily from non-autistic children. Deborah Fein, a psychology professor at the University of Connecticut, estimates (very roughly) a rate of 20 percent recovery. These numbers are intriguing if tentative; it is hard to know how many original diagnoses were simply wrong in the first place. But I prefer the word “learning” to “recovery”; many autistics learn how to overcome their cognitive disadvantages. Would we say that a non-autistic person, as he or she grows, “recovers” from having the disabilities of a four-year-old? Or would we say that the person has learned a lot?
Recognizing the power of autistic learning overturns a lot of stereotypes. There’s a common belief that the “very autistic” are hopeless cases but perhaps the “mildly autistic” can meet some measure of success. That’s one view, but it is a hypothesis, not a fact. We could just as easily produce another hypothesis and say that the “real autistics” are the successful people who are very consistently autistic but never diagnosed because they achieve high social status and maybe they had happy childhoods as well. They’ve mastered autistic styles of learning and so they have many achievements, including a good working grasp of social intelligence. Success stories don’t have to be classified as cases of “mild autism”; they may well be better understood as cases of effective autistic learning.
In the field of autism research, scientific breakthroughs have come from researchers who are themselves autistic. Michelle Dawson, an autistic researcher in Montreal, insisted to her colleagues that they pursue the notion of giving the Raven’s Progressive Matrices IQ test to autistics. This very different test focuses on how well an individual can complete missing segments in abstract patterns. It was once a common presumption that autistics are of lower-than-average intelligence, even if we just look at those who are not mentally retarded. This result was obtained from Wechsler IQ tests, which involve accumulated knowledge, such as command of vocabulary, or knowledge taken from everyday life, such as what might be found in a kitchen cupboard. Those are not always autistic strengths. That means autistics, unlike many non-autistics, will do much better on some IQ tests than others. When the results of some recent Raven’s Progressive Matrices IQ tests were tallied, the autistics did very well indeed. In fact two of the subjects rose from the “mentally retarded” range to the ninety-fifth percentile, close to the very top.
Michelle Dawson is a researcher and an autistic but just a little more than ten years ago she was a Canadian mail carrier with no more than a high school degree. Dawson was then covered in a documentary on autism and thereby came to meet some autism researchers. They were impressed by her intellect and understanding, and now she is part of the research team and a leading figure in autism research. She still has only a high school degree but she also has an encyclopedic knowledge and understanding of the field of autism research and she is intellectually very impressive. When growing up she had enormous difficulties learning how to speak meaningfully and she succeeded only after great effort and suffering. In another era, or perhaps even today, she might have been institutionalized, but Michelle Dawson is living proof of the cognitive strengths of autism. Note that by most standards she would count as “very autistic” rather than as “mildly autistic.” It seems that Hans Asperger himself—a very innovative researcher—was in some way autistic.
What is science itself but another means of mental ordering?
Neuroscientist Matthew Belmonte (who has an autistic brother) wrote: “Now as I look back I see both science and autism are compulsions to order, which differ only in their degrees of abstraction. I now feel that the same set of genetic biases that gave my brother autism gave me just enough of a desperation for order to make me a scientist, and indeed, a student of autism—enough to be driven by the same sense of impending chaos that drives my brother; yet I’m not as overwhelmed by it. I often consider how similar he and I are, and how I so easily could have been him, or he me.”
I have wondered about Peter Mark Roget, the man behind Roget’s Thesaurus. A recent biography of Roget, written by Joshua Kendall, is appropriately entitled The Man Who Made Lists. In the second paragraph of the book we learn that Roget was a polymath and also a chess whiz. Kendall writes: “The boyhood interest in geometry and algebra was no passing fancy…In some respects, mathematics proved even more alluring to Roget than verbal communication because he saw it as a pure form of language, one that addresses directly the relationships between abstract concepts.” By the way, Roget also invented the log-log scale, which increased the utility of slide rules. And he wrote a 250,000-word book—his Bridgewater Treatise—on how to organize the animate world into different categories.
Here is an even more explicit passage from the biography of Roget, and I can only wonder why the concept of autism did not occur to the author: “While most children acquaint themselves with animals and plants by using all their senses—by looking, listening, sniffing, and touching—and by accessing their emotions, Peter, by contrast, relied exclusively on his mind. With neither parent available to help him process all the potentially confusing and frightening stimuli…Peter was forced to limit how much of the external environment he took in. Rather than experiencing the contents of the world in all their wonder, he took a shortcut powered by his keen intellect: he classified them.” Peter’s son John, by the way, also was described as a “classifying and arranging machine.”
If you enjoy focused and sometimes repetitive activity geared toward mental ordering, these days you might fit right into the world of high achievers. I was reading the recent biography of Warren Buffett called Snowball: Warren Buffett and the Business of Life. From it I learned that Buffett has long had a slight obsession with trains, I learned that he loves collecting, and I learned that “he could have spent decades toiling over tables of mortality statistics, handicapping people’s life expectancies. Besides the obvious ways this suited his personality—which tended toward specialization, relished memorizing, collecting, and manipulating numbers, and preferred solitude—working as a life actuary would have let him spend his time pondering one of his two favorite preoccupations: life expectancy.” The point is not to claim that Buffett is autistic, as I cannot know. Instead the point is to realize that, in today’s world, many autistics will be capable of high achievement, drawing of course on autistic cognitive strengths.
So far I have focused on cognition. But as listed near the beginning of this chapter, a second concept of autism (and associated notions, such as Asperger’s) discusses it in terms of some mix of personality traits and overt behavior. This is the most common usage for these words but it is distinct from the understanding of the autism spectrum in terms of cognition.
It is easy to see why the personality-based and behavior-based concepts are so popular. We love to talk about other human beings and their personalities and behaviors, and so when we talk about autism we often turn our attention in the same directions. We like to use examples and point to particular traits that can be observed by others. Most of what you see or read in the media reinforces the personality-based and behavior-based views, in part because they are easy to report and turn into a human interest story. It’s then easy to talk that story up to your friends and family. But a lot of these characteristics are informal generalizations with varying and uncertain degrees of truth.
The list of traits observed in autistic people—to varying degrees—includes introversion, lack of direct eye contact or unusual eye contact patterns, love of repetitive routines, self-stimulation or “stimming” (usually a repetitive body movement), a relatively flat tone of voice, a direct manner of speech, dislike of speaking on the phone, a tendency to refer to oneself in the third person, perseveration about preferred topics, and picky or restricted eating habits. There are also behavioral patterns found only in a minority of autistics but found in autistics at higher than normal rates. This includes self-injury and echolalia, or the tendency to repeat back sounds and phrases heard from other people.
That’s an interesting list of characteristics, but many of the personality traits associated with autism are plain, flat-out wrong.
One common misconception is that autistics have no sense of humor. It is probably true that autistics, on the whole, have different senses of humor, so of course to some people this will appear like no sense of humor at all.
Another misconception is that autistics have no need to share their experiences or thoughts with other people. More often the method of sharing simply is different. Autistics are more likely to exchange analysis, factual information, enthusiasm for hobbies, and just plain feelings than to make typical small talk. If you engage an autistic person in an area of preferred interest, you may hear a great deal about the topic, and when autistics communicate with each other they commonly talk or write about how it feels to be an autistic in a largely non-autistic world. Nor are autistics opposed to socializing, even though many autistics lack the cognitive tools to succeed at socializing in mainstream settings. Many autistics have a hunger for contact with others, often mixed in with apprehension and fear of inadequacy. Dr. Sandi Chapman expressed an all-too-little-known point when she wrote: “As we’ve met hundreds of individuals with autism, almost everyone said the thing they long for the most is one good friend, or one lasting relationship…”
The most pernicious mistake is the belief that autistics have no sympathy for other human beings and their sufferings. Again, these mischaracterizations stem from people, sometimes even scientists, who cannot see that autistics often do or perceive things in very different ways. It is true that autistics often will not understand when other people (especially the non-autistic) are suffering but this is again a cognitive problem. It is distinct from a lack of concern or heartlessness. It’s more accurate to think of autistics as coming from a different culture of sorts and simply not understanding all of the distress signals of other people, and perhaps not being able to show that they care in a way that others understand or appreciate.
It’s a bit like how you might not understand when a Japanese person is trying to tell you “no” but is making the point in a different and less direct way than you are used to. When we adjust for difficulties of communication and perception in experiments, by making it clear when suffering is going on or not, it turns out that autistic people have as much compassion as do non-autistics.
Jim Sinclair, a web writer who describes himself as autistic, put it this way: “But I do mind when in spite of so much effort I still miss cues, and someone who has much better inherent communication ability than I do but who has not even taken a close enough look at my perspective to notice the enormity of the chasm between us tells me that my failure to understand is because I lack empathy. If I know that I do not understand people and I devote all this energy and effort to figuring them out, do I have more or less empathy than people who not only do not understand me, but who do not even notice that they do not understand me?”
Jason Seneca, who self-describes as Asperger’s, writes:
I have personally been accused of being cold, shallow, selfish, insensitive, egotistical, repressed, emotionally dead, incapable of emotion, and incapable of love…If you’re like me, these accusations tend [to] come as a shock. You know that you are a sensitive and caring person; you can see these tendencies in yourself and can identify their outward manifestations. How could you be perceived so harshly?
I’d go out on a limb and suggest that autistics probably have more sympathy for the sufferings of the non-autistic than vice versa. As human beings we are all programmed to have lots of sympathy for in-group members and often not so much sympathy for anyone else. Minority groups, non-powerful groups, and “different” people are more likely to be the targets of this human failing than they are likely to be the perpetrators. The minority group is used to trying to understand the majority (even if they sometimes fail), but usually the majority has relatively little experience with trying to comprehend the feelings of the minority. The reality is that autistics have lots of compassion, most of all for other autistics. Is that really so surprising?
Remarkably, it is still entirely acceptable for a major newspaper or commentator to use the Asperger’s or autism concept to refer to a person who is unfeeling or perhaps even contemptuous of the emotions of others. It’s one thing when radio pundit Michael Savage calls the autistic a bunch of lazy fakers who need to be told to snap out of it. It’s another when The New York Times uses the word “Asperger’s” to denote callousness, as it has repeatedly allowed its writers to do. It is hard to imagine members of different ethnic or religious groups being discussed in the same terms.
You might think I am exaggerating but you can find prejudiced attitudes even in the scientific research literature, not just in the popular press or in seventh-grade classrooms. Michael L. Ganz, who teaches at the Harvard School of Public Health, published an entire essay entitled “The Costs of Autism.” Nowhere does he consider whether autistic individuals have brought benefits to the human race. Can you imagine a comparable essay titled “The Costs of Native Americans”? David Bainbridge is an anatomist at Cambridge University. In 2008 he published a book with Harvard University Press on the brain; he claimed that autistics were lacking in the quality of alertness and he compared their cognitive faculties unfavorably to those of brain-damaged monkeys. The point is not to focus the blame on these particular individuals but rather that they have soaked up common ideas and attitudes, yet without having picked up any sense of revulsion or even hesitancy at such portraits.
Autism is so often seen as an emotionally “thin” personality type but I’ve grown to notice the very rich and “thick” emotional lives of autistics. There may be no better place to witness this than in the writings of self-described autistics, Asperger’s, and “neurodiverse” on the web—on discussion forums, on blogs, in personal online journals, and in those scattered bits that pop up through Google. You will find an extraordinary set of intelligent, human, very emotional, and very compassionate writings, replete with all the brilliance and also the imperfections we have come to expect from the human spirit. In these web writings I found a world that I simply didn’t know existed and this experience convinced me of the compassion within autistics.
In the online world you’ll find Amanda Baggs, who cannot communicate effectively through normal talking but whose writings are sharper, smarter, and more piercing than most of what you read from Ph.D.s; search for her on YouTube for a startling lesson in the difference between spoken and written communication. Kathleen Seidel’s site neurodiversity.com gives an overview of what is new (Seidel is not herself autistic) and the Asperger’s LiveJournal discussion group presents a medley of different voices, with an active comments section and an especially high representation of female writers. Contrary to stereotype, the discussion on LiveJournal is almost unfailingly polite. On other sites you’ll find crackpot theories that autistics are the lost descendants of Neanderthal man, concern from autistic parents about how they will raise their autistic children, and fears that autistics will be subject to future eugenics. You’ll find lots of anger, lots of sharing of problems and tips, lots of consolation, and lots of bewilderment about a world that isn’t always sympathetic or understanding.
In short, autistics are not a group of callous individuals who don’t give a damn about others.
Again, although our neurologies can be very diverse, there is something fundamentally human that we all share. That’s not just faith or moral philosophy, it is also backed up by science.
Autism is passed along genetically, though environmental triggers may play a role as well. Rates of autism concordance among identical twins are very high, over 90 percent by some estimates but at least 60 percent; so if one identical twin is autistic the other likely is too. Furthermore, rates of autism concordance among fraternal twins are not so high, probably less than 10 percent. So if autism-related genes have survived for so long in light of evolutionary pressures, maybe they carry important positive qualities, even if those qualities are not always visible. For instance mental ordering and acute perception can help you deal with the world and perhaps enhance your chances of survival; today those same qualities may make you a web innovator.
While parents of autistic children are more likely than average to lie along the autism spectrum, most autistics have non-autistic parents. The implication is that many so-called “normal” people are carrying around autism-contributing genes. A recent study showed that parents of autistic children were less likely to socialize and that those same parents were also less likely to make eye contact and more likely to read other people’s intentions by watching their mouths rather than their eyes, a common autistic trait. There’s also evidence that the parents of autistic children are more likely to have a cognitive bias toward the local processing of small bits of information, as we find among autistics. We’re again back to the idea that autistic cognitive strengths and weaknesses pervade our world in many ways, often unobserved. One recent population study suggests that autistic traits are distributed across the entire population in a smooth and normal fashion, rather than into two distinct and clumped groups of “autistic” and “non-autistic.” To put it bluntly, autism isn’t just about “the other.”
Another bias in autism research is toward children. Children are an especially vulnerable group and of course they usually have parents to take care of them and bring them to see doctors on a regular basis. It’s also easier to sample children as a general population, mostly because of the public school system. So if you are trying to measure the overall prevalence of autism in the population, children are the obvious place to start.
Here is the catch. It seems easy to find lots of autistic children yet relatively hard, at least by the standards of common public perception, to find a comparable number of autistic adults. For instance a typical figure suggests that the United States has about 500,000 autistic children, for an incidence rate roughly in the range of 1 in 150. That would mean that the United States also has 1.5 million autistic adults. (These numbers are not exact.)
My belief is that the United States does in fact have something like (approximately) 1.5 million autistic adults.
But if there are at least one million autistic adults, and probably many more, the obvious question is this: Where are they? Who are they? Are they all locked up in mental hospitals? How often do you see “Rain Man” in the street? Some people think that there must be a very recent epidemic of autism. But the epidemiological measurements of autism frequency, if we adjust for the broadening definition of autism over time, do not seem to be rising each year by large amounts. If you read 2005’s Handbook of Autism and Pervasive Developmental Disorders, you will find it stated pretty clearly by Eric Fombonne: “The available epidemiological evidence does not strongly support the hypothesis that the incidence of autism has increased.” There are some ways you could argue for a gradual increase in the rate of autism but still there should be at least one million autistic adults in the United States.
So what is going on? The most likely answer is that you see autistics on a regular basis in the course of your ordinary life. You just don’t usually notice them and they don’t stand out because many of them are highly competent individuals, or maybe just moderately competent individuals, or maybe somewhat incompetent individuals. In any case a lot of these people are on the less visible part of the autism spectrum.
But all this is hard for many observers to admit. For whatever reason, autism still isn’t socially respectable. The social hostility to autism is not always overt, as in schoolyard bullying, but it can take many subtle forms. Rightly or wrongly, autistics are often seen as staking out their independence from the group and from group norms. They’re seen as questioning the psychological power of the leaders and bullies and indicating that they do not, within their minds, bend to the worlds created by those cliques (I’m not saying that is how autistics see themselves; more often autistics view themselves as simply being a certain way rather than staging a social rebellion). That’s not popular. Mature adults are not so keen to attack or criticize the autistic per se, but very often the target will be someone who claims to be autistic and, at least in the view of the critic, doesn’t merit the label. It’s as if that person is arrogating to himself or herself a freedom that isn’t deserved and should not be recognized. It’s as if only those who really suffer or who are really “handicapped” should have the “right” to claim that freedom; otherwise the freedom could spread very generally and that would be dangerous.
Following Vernon Smith’s proclamation of his own self-diagnosis, one of my colleagues was dismissive, as if Vernon were a strange hypochondriac who had imagined an allergy to a nonexistent substance, or as if he had no right to arrogate to himself such a special status. But I know Vernon pretty well (I recruited him to the university where we work; he is now emeritus). I see him as a living, walking example of the cognitive strengths of autism.
It’s becoming increasingly clear that there is considerable heterogeneity of outcomes in autism. The best scientific understanding of autism is changing, and it is changing rapidly. Even the formal diagnostic criteria for autism have been changed, broadened, and made less pejorative with each new edition of the diagnostic manuals. Autistics are aware, real live human beings, very often of high intelligence and sensitivity.
Given all that, we must choose how to talk about and how to think about autism. One choice is to keep thinking and talking about autism as if it were a plague. That means whenever an autistic person achieves something, we must make sure the categories are defined so this doesn’t count as autism. The other choice is to look for an understanding and a terminology consistent with the dignity and skills of each individual. To me the answer is clear.
The anti-autistics may well win the fight to define autism in terms of impairments. But it’s the substance of the ideas that matter. No matter how autism ends up being defined, the cognitive strengths of whatever-we-call-what-it-is-that-I-am-talking-about will continue to reshape our world. I will use the word “autism” in this book because I think it provides a consistent framework for thinking about both the cognitive and the social issues.
Let’s look some more at how society is changing, how self-education is changing, and how the web is evolving to change our lives. The ideas to follow are not about autism or the autism spectrum. They are ideas that have resulted from my quest for self-knowledge and these ideas have implications, I believe, for everyone. They are ideas about how we are thinking differently and what those thoughts might yield.