Journeys with Autism

When I read blogs by the parents of autistic children, I often happen across the puzzle metaphor. It finds its way into statements such as “My autistic daughter is such a puzzle” or “We’re still putting together the pieces of the puzzle that is my son.” I’ve always had a visceral response to the puzzle image to describe autism and autistic people, especially when used in the puzzle-piece logo of the Organization-That-Shall-Not-Be-Named. It’s so offensive on a gut level that I’m having difficulty even beginning to write about it.

A puzzle suggests the idea that there might be some pieces missing. Of course, such an idea is anathema to me, when applied to any person on the planet. The only way in which you could look at a person and see pieces missing is if you begin with a preconceived notion of what a person is supposed to look like. If the person doesn’t fit that preconceived picture in your mind, then you see all kinds of gaps. But if you see the person for himself or herself, and accept the person as a given, without reference to an outside standard, then the picture becomes whole. The person is simply a person, on his or her own terms—nothing more and nothing less.

If you begin with an idea of “normal” that says that a person should be able to speak by the age of two like “normal” children, enjoy the same kinds of activities as “normal” adults, and socialize in a “normal” fashion, you’ve got a seriously complex, preconceived image of what it means to be a whole person. It’s nearly impossible that any atypical person could even begin to approach that image of normal. When we don’t, some of us are told that we’ve got pieces missing. Autistic people are told that we lack empathy, theory of mind, central coherence, and the ability to live as social beings—which, by the by, is all complete and utter bullshit, just in case you were wondering.

So who gets to decide what picture is normal? Other people who have the privilege of defining themselves as normal, that’s who. It’s a nearly invisible privilege for the most part, because it’s everywhere. It’s taken me a long time to see it and, ironically enough, I’ve begun to see it by virtue of what is missing from the language of many of the non-autistic people who talk about us.

Two words are missing from the statement “My autistic daughter is such a puzzle”—two little words that would change that sentence from an expression of privilege to an expression of a personal experience. And those two little words are to me. If someone were to write, “My daughter is such a puzzle to me,” then we’d be getting somewhere. All it takes is the inclusion of the personal pronoun. Of course, there is still that little issue of the puzzle metaphor, which runs the risk of portraying the child as a series of pieces, but at least the source of the fragmented perception would stay where it belongs: in the eye of the beholder. The speaker would be taking responsibility for describing his or her own limited perception rather than an objective fact.

Another example of this limited perception appeared on a recent blog by a parent who said that her autistic child is afraid of things “that just aren’t scary.” She didn’t say “that just aren’t scary to me.” She said, “that just aren’t scary,” as though there were an objective measure of what’s scary. These words imply that somewhere in the far reaches of the universe, there is some ideal called scary, we all know what it is and, if we’re scared of things that don’t measure up to that ideal of scary, something is terribly wrong. Now, I have always assumed that being frightened was a subjective experience, and that an image or a situation that frightened one person might not frighten another. I have never assumed that what went on in my own mind was exactly the same as what went on in other people’s minds. Far from it.

But wait a minute. I remember reading somewhere that being able to understand that other people think differently than I do is called having Theory of Mind (ToM). So, miracle of miracles, I actually have ToM, autistic though I am! And when a non-autistic person can’t imagine why an autistic person might be afraid of something, that non-autistic person seems to lack ToM. I see evidence that non-autistic people lack ToM regarding autistic people all the time. In fact, I see it in the work of “experts” on autism, and yet rarely does anyone call them on it. Usually, the ones who do the calling out are autistic people like me, who by definition don’t understand ToM, so we’re dismissed before we begin.

And once we’re dismissed, people can own the discourse about us and say just about anything they want. Consider the following:

A non-autistic person says that the world of an autistic person is a puzzle. That statement is taken as objective truth by most non-autistic people. In fact, it is irrefutable evidence that the person speaking is “normal” and that the person being spoken of has a “disorder.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Yes, you’re right. Poor thing. He certainly is a puzzle!”

An autistic person says that the world of neurotypical people is a puzzle. That statement is taken as a purely subjective perception by most non-autistic people. In fact, it is irrefutable evidence that the person speaking has a “disorder” and that the people being spoken of are “normal.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Poor thing. He’s so impaired. He just doesn’t understand us.”

Could the arbitrary nature of privilege be any clearer when one set of people has “understanding” when they don’t understand, and the other set of people is “impaired” when they don’t understand? Maybe it’s that I’m autistic, or a born democrat, or hopelessly addicted to fairness, but I find this kind of imbalance deeply disturbing and painfully unjust.

So what do I do when I meet the puzzle metaphor? Well, obviously, I write about it. And yet, the best response to it I’ve seen is a photo on the blog of my friend Elesia Ashkenazy. I’ve taken her lead and created a sign of my own:

If you want one, send me a photo by email and tell me what colors you’d like for the top and bottom, and I’ll make you your own sign. And if you’re comfortable with my publishing it on my blog, let me know. I’d love to have a post filled with signs like this, but only if people are comfortable with their faces being out there for the world to see. I do not “out” people, and I never will.

© 2010 by Rachel Cohen-Rottenberg

In his 2009 paper Autism: The Empathizing–Systemizing (E-S) Theory, Professor Baron-Cohen expands upon his Extreme-Male-Brain theory of autism. Unfortunately, he does not come any closer to understanding autism than when he started.

A Series of Incorrect Assumptions

Baron-Cohen begins the paper by asserting that the mind-blindness theory of autism neatly explains all the social difficulties encountered by autistic people. From this assertion flows a litany of incorrect conclusions:

1. Baron-Cohen asserts that autistic people have an impaired Theory of Mind (ToM), which he defines as “the ability to put oneself into someone else’s shoes, to imagine their thoughts and feelings.” (Baron-Cohen, 68-69)

All I can say is: Give me a slight break. The everyday experience of many autistic people, all across the spectrum, contradicts the professor’s theory. Many of us experience such a high degree of empathy that we are constantly putting ourselves in other people’s shoes and trying to see all sides in any controversy or conflict. Many of our problems with sensory and emotional overload derive from an excess of this ability, not a deficit.

2. Because we lack a proper ToM, we have trouble knowing when we are hurting someone’s feelings.

From my contact with autistic people, it’s clear to me that our empathy leads many of us to constantly question the impact of our words. While I am far from perfect, choosing my words carefully may very well rank as one of my Aspie obsessions. However, the professor believes that “the typical 9-year-old can figure out what might hurt another’s feelings and what might therefore be better left unspoken. Children with Asperger syndrome are delayed by around 3 years in this skill.” (Baron-Cohen, 69)

Choosing my words carefully, so as not to give offense, I wish to say to the professor: “Simon, my friend. (May I call you Simon? I’m not sure, since I can’t read your mind.) You say that autistic people can’t properly put themselves into the shoes of another person. Let me respond as gently as I can: Those words were much, much better left unspoken. They hurt me. And when other people believe what you’re saying, your words cause autistic people no end of trouble. So, the next time you feel tempted to say such things, turn off your computer and have a good meal. You’ll feel better.”

3. Baron-Cohen dismisses studies that fail to find any ToM deficits in autistic people:

“[S]ome studies have failed to find any evidence of a ToM deficit in ASC [autism spectrum conditions], though this may be because among high-functioning, older individuals the tasks need to be sufficiently subtle and age-appropriate to avoid ‘floor effects.’” (Baron-Cohen, 70)

The results “may” be thrown off because of the presence of “high-functioning,” older adults? Didn’t Baron-Cohen attempt to find out who actually participated in these studies? Isn’t that part of writing a research paper? In any case, we “high-functioning” types do not skew test results by excelling at easy tasks. We help the professionals arrive at the proper results by articulating what’s going on.

4. After spending a fair amount of time defending his mind-blindness theory, the professor adds a new and even more incorrect component to it. He “broadens” of the concept of ToM to include an empathetic response:

“Most people regard ToM as just the cognitive component of empathy in that it simply involves identifying someone else’s (or your own) mental states…However, missing from ToM is the second component of empathy, the response element: having an appropriate emotional reaction to another person’s thoughts and feelings. This is referred to affective empathy.” (Baron-Cohen, 71)

Baron-Cohen goes on to say that, in addition to not empathizing well, we don’t know how to respond to someone even after the person tells us what‘s wrong.

News flash: Once someone tells me how he or she feels, I don’t usually have a problem with an empathetic response. Sometimes, I’ll make sure that my response is welcome, out of respect for the other person’s boundaries. For instance, if a person is crying, I might ask whether the person would like a hug, or whether the person would like to talk. Some people want hugs, and some people want to be left alone. I consider it courteous to ask. Once I know people fairly well, however, and I know what works for them, I simply respond. Just ask my husband, my daughter, my daughter’s friends, my friends, my former co-workers, my neighbors, and all the animals I’ve ever helped care for in various stages of illness.

Well, I guess you can’t ask the animals, but you get the idea.

Extending the Extreme-Male-Brain Theory

Despite our supposed deficits in the areas that make people truly human, there’s good news in store. Building on his Extreme-Male-Brain theory, Baron-Cohen posits that while we have difficulty Empathizing (E), we’re not too bad at Systemizing (S). If you remember, we have Extremely Male Brains, so the fact that we’re good at systemizing should not come as a surprise. I mean, I’m sure that those of you with systemizing brains already had that one all figured out, didn’t you?

Here’s the good news in the professor’s own words:

“According to the empathizing–systemizing (E-S) theory, autism and Asperger syndrome are best explained not just with reference to empathy (below average) but also with reference to a second psychological factor (systemizing), which is either average or even above average.” (Baron-Cohen, 71)

Hurrah for us! We’re average. And sometimes, we’re above average. It’s a dream come true.

And in case there is any doubt as to those tasks that we’re so, um, average at doing, here is the professor’s definition of systemizing:

“Systemizing is the drive to analyze or construct systems. These might be any kind of system. What defines a system is that it follows rules, and when we systemize we are trying to identify the rules that govern the system, in order to predict how that system will behave (Baron-Cohen 2006). These are some of the major kinds of systems: collectible systems (e.g., distinguishing between types of stones), mechanical systems (e.g., a video-recorder), numerical systems (e.g., a train timetable), abstract systems (e.g., the syntax of a language), natural systems (e.g., tidal wave patterns), social systems (e.g., a management hierarchy), and motoric systems (e.g., bouncing on a trampoline). In all these cases, you systemize by noting regularities (or structure) and rules.” (Baron-Cohen, 71)

I had no idea that jumping on a trampoline made me a systemizer or that it was evidence of autism. I am so excited! I used to jump on a trampoline ALL THE TIME when I was a kid.

But there’s a catch. In the next sentence, Baron-Cohen makes a statement that suggests that none of us are autistic to begin with: “So it is the discrepancy between E and S that determines if you are likely to develop an autism spectrum condition.” (Baron-Cohen, 71)

Likely to develop an autism spectrum condition? WHAT? You mean, I wasn’t born with it? Wow. If only they’d given me empathy lessons in grammar school, rather than letting me bounce on that stupid trampoline, I’d be normal today.

I wonder whether it’s too late to sue the school district.

Misunderstanding the Purpose of Stimming

Not surprisingly, the train goes further and further off the track as the article continues. Here is Baron-Cohen’s list of systemizing behaviors in classic autism and Asperger’s Syndrome. The Asperger’s behaviors are in italics. (Baron-Cohen, 74)

Now, it seems to me that if a neuro-typical person were doing these kinds of activities, another neuro-typical person might (perhaps correctly) assume that the person was systemizing because his or her brain was structured that way.

However, it’s always ill advised to draw neuro-typical conclusions by watching the behavior of autistic people, because autistic people experience the world in a completely different way. Therefore, we might have reasons for our “systemizing” behavior that have nothing to do with having innately “systemizing” brains.

For example, most autistic people would recognize many of the activities in Baron-Cohen’s list as stims: tapping fingers, letting the sand slide through your fingers, rocking, watching something go round and round, putting things in a certain order, watching the same video over and over, playing a tune on an instrument over and over, and so forth. Baron-Cohen does mention the subject of stims, but he spectacularly misinterprets their purpose:

“[W]hen the low-functioning person with classic autism shakes a piece of string thousands of times close to his eyes…the E-S theory sees the..behavior as a sign that the individual ‘understands’ the physics of that string movement.” (Baron-Cohen, 74)

The E-S theory may see the behavior in that way, but I’m not convinced that many autistic people do. The professor needs to watch Amanda Baggs’ In My Language video for a crash course on how many unusual reasons we can have for all the interesting things we do.

About that string, Baron-Cohen continues:

“He may for example make it move in exactly the same way every time. Or when he makes a long, rapid sequence of sounds, he may know exactly that acoustic pattern and get some pleasure from the confirmation that the sequence is the same every time. Much as a mathematician might feel an ultimate sense of pleasure that the “golden ratio” ((a + b)/a = a/b) always comes out as 1.61803399. . ., so the child…who produces the same outcome every time with his repetitive behavior, appears to derive some emotional pleasure at the predictability of the world. This may be what is clinically described as ‘stimming’ (Wing 1997).” (Baron-Cohen, 74-75)

To Baron-Cohen, the child “appears” to derive some emotional pleasure at the predictability of the world. The only person who could draw this conclusion would be someone who experiences the world as a predictable place. I can’t vouch for any other autistic person, but I do not experience the world in that way. Far from it. The world feels chaotic to me.

When I stim, I’m not taking pleasure in the predictability of the world. I’m taking refuge from the chaos of the world. I’m soothing my very sensitive nervous system by a) moving my body in comforting ways, such as when I rock or toe-walk or b) creating some sort of tangible order, such as when I arrange books by subject or organize beads by color, shape, size, and texture. To soothe myself, I’m creating what I can’t ordinarily perceive. I’m saying, in the words of Mrs. Ramsay in Virginia Woolf’s To the Lighthouse, “Life stand still here.”

But This Theory is So Good for Us

In singing the praises of his E-S theory, Baron-Cohen doesn’t hesitate to announce how much it will help autistic folk and our loved ones. For example, he speculates that the theory will lead to interventions that will help us cope in the world:

“[This] theory is giving rise to novel interventions, in particular using the strong systemizing to teach empathy, for example, presenting emotions in an autism-friendly format (Baron-Cohen 2007b; Golan et al. 2006).” (Baron-Cohen, 70)

When I saw the phrase “presenting emotions in an autism-friendly format,” I was hoping that Baron-Cohen meant “quietly, slowly, and respectfully.” (Hey, a girl can dream, can’t she?) Unfortunately, that’s not what he meant:

“The DVD Mind Reading…presents actors posing facial expressions such that people with autism can teach themselves emotion recognition via a computer. This involves taking the quite artificial approach of presenting mental states (such as emotional expressions) as if they are lawful and systemizable, even if they are not (Golan et al. 2006).” (Baron-Cohen, 70)

I see. So we’re going to use computers to understand emotion in a systematic way, even though emotions do not follow any natural laws. Well, since our Extremely Male Brains make us pretty much like computers anyway, why not? And given that we don’t understand deception, we’ll believe anyone who tells us that we can learn about emotions using a computer program, won’t we? It’s perfect.

But it gets better, at least at first glance:

“E-S theory destigmatizes autism and AS, relating these to individual differences we see in the population (between and within the sexes), rather than as categorically distinct or mysterious. For many decades, the diagnosis of autism was one that many parents dreaded, as it suggested their child was biologically set apart from the rest of humanity in lacking the basic machinery for social engagement and in suggesting autism is a disease of the brain. The E-S theory focuses not just on the areas of difficulty (empathy) but also on the areas of strength (systemizing) in ASC, and views ASC as a difference in cognitive style that is part of a continuum of such differences found in everyone, rather than as a disease.” (Baron-Cohen, 73)

Destigmatizing is good. But is that really what Baron-Cohen is doing here? I don’t think so.

1) He attempts to destigmatize autism by putting us into categories that the general population can understand. As opposed to being “categorically distinct,” we are now different in the same, familiar way that men and women are different. Men systemize, and women empathize. We’re just really manly men—and, er, women. Don’t you feel better now?

2) He completely misses the point that autism and AS are categorically distinct from other neurological kinds of wiring.

We are not just interesting variations from the norm, but people with a fundamentally different way of seeing and experiencing the world. We’re non-normative human beings. Being distinct is not the same as being dangerous or inhuman. To take away our distinctness in order to destigmatize autism only plays into the fears of the general population. It doesn’t allay those fears at all.

3) While at first glance, I was happy to see that he rejects the world “disease,” I find myself dismayed that Baron-Cohen does not replace it with anything that sounds any better.

After all, autism may not be “a disease of the brain,” but much of his work is an attempt to suggest that we are, in fact, “biologically set apart from the rest of humanity in lacking the basic machinery for social engagement.” Isn’t that the point of saying that we are innately poor at empathy and the social skills that depend upon it? Playing up our “systemizing” skills while telling people that we do not care about them is hardly a giant leap forward.

4) While Baron-Cohen appears to celebrate our “systemizing” strengths as a way to bring us into the light of human dignity, he forgets that some of us flunked calculus, can’t disassemble or reassemble gadgets, and don’t care in the least about the Latin names of anything. Autistic women, in particular, do not present with the same kinds of traits as the majority of autistic men.

What is to be done with autistic people who have “difficulties” with both the feminine ability to empathize and the masculine ability to systemize? Should we make them use computers or line things up in rows until they learn to systemize properly? After all, it’s pretty clear that the empathy thing is not even worth trying.

I have a better idea. Let’s tear up Baron-Cohen’s theory and start all over again. After all, as he says toward the end of his paper:

“One criticism of the E-S theory is that the evidence base for it is still quite limited.” (Baron-Cohen, 73)

Ya think?

© 2009 by Rachel Cohen-Rottenberg

In his 1999 paper The extreme-male-brain theory of autism, Professor Simon Baron-Cohen posits a dichotomy between the empathizing female brain and the systematizing male brain. In Baron-Cohen’s theory, autistic people have extreme versions of the systematizing male brain.

Baron-Cohen begins his paper with an introduction characteristic of many articles about autism and autistic people:

“Autism is widely regarded to be the most severe of the childhood psychiatric conditions (Rutter, 1983; Frith, 1989; Baron-Cohen, 1995). It is diagnosed on the basis of abnormal social development, abnormal communicative development, and the presence of narrow, restricted interests, and repetitive activity, along with limited imaginative ability (DSMIV, 1994). Such children fail to become social, instead remaining on the periphery of any social group, and becoming absorbed in repetitive interests and activities, such as collecting unusual objects or facts. It is a tragedy for their families who work tirelessly to attempt to engage with and socialize their child, mostly with very limited results.” (Baron-Cohen, 3)

Let’s consider the professor’s assumptions and omissions:

1) Baron-Cohen characterizes autism as “the most severe of the childhood psychiatric conditions.” However, autism is not a psychiatric condition, nor is it limited to children. It is a neurological condition with which we are born, and with which we live throughout our lives.

2) The professor describes autism mainly by pointing to external markers: social development, communicative development, and the presence of restricted interests and repetitive activity. The only mention of our internal processes is the remark that we have “limited imaginative ability,” which is not even the case in all instances. Take a look at the work of autistic artists all over the world and you will see a level of imagination that eludes most people, including professors at major universities.

However, the author’s omissions are even more telling than his words. Nowhere does he mention our sensory sensitivities, our unusual communicative or cognitive abilities, our capacity for rational thought, our empathy, our gifts, the love we feel for others, or any other process that goes on in the human mind and heart. To see autistic people only by external markers shows a significant lack of empathy in every sense of the word.

3) Autism is “a tragedy for…families who work tirelessly to attempt to engage with and socialize their child, mostly with very limited results.” Our very existence, apparently, is a tragedy. Autistic people, of course, have no feelings, no struggles, and no tragedies of our own. We just cause other people pain and suffering.

Once he gets done slandering us, Simon-Cohen adduces a number of questionable arguments for his extreme-male-brain theory—arguments with which he seeks to prove that autistic people have odd versions of male brains:

“(i) Normal males are superior in spatial tasks compared to normal females, and people with autism or Asperger Syndrome are even better on spatial tasks, such as the Embedded Figures Test (Jolliffe and Baron-Cohen, in press).” (Baron-Cohen, 33)

Any difference in abilities between males and females can easily be explained not by brain structure, but by the ways in which girls are socialized and educated in western societies. The conclusion that neuro-typical males are innately superior to neuro-typical females in spatial tasks ignores the effects of culture, context, and socially imposed gender roles.

Moreover, many autistic people have very poor spatial abilities. I am autistic, but my spatial abilities are quite limited. I failed Calculus because I couldn’t rotate three-dimensional objects in my mind. I still can’t. My mind works only in two dimensions. I can see height and width, but not depth.

“(ii) There is a strong male bias in the sex ratio of autism or AS.” (Baron-Cohen, 33)

As Tony Attwood and others have shown, female Aspies tend to have an entirely different presentation from males. The diagnostic criteria were developed from the results of studies using only males. All of Leo Kanner’s subjects and Hans Asperger’s subjects were boys. The male bias lies in the diagnostic markers, not in the condition of autism itself.

“(iii) Normal males are slower to develop language than normal females, and children with autism are even more delayed in language development (Rutter, 1978).” (Baron-Cohen, 33)

People with Asperger’s, by definition, do not have language delays. Given that Asperger’s Syndrome is autism by a different name, and that more than half of all autistic people have Asperger’s, it’s impossible to make the claim that the language development of all autistic people is delayed.

“(iv) Normal males are slower to develop socially than normal females, and people with autism are even more delayed in social development (O’Riordan, Baron-Cohen, Jones, Stone, and Plaisted, 1996).”

Baron-Cohen fails to question the reason for the lag in normative male social development. Is it nature or nurture? Since girls are socialized to cooperate, and boys are socialized to fight, it’s clear that nurture plays a large role in helping girls develop better social skills than their male counterparts.

“(v) Normal females are superior to males on mindreading tasks, and people with autism or AS are severely impaired in mindreading (see Baron-Cohen et al, 1996).”

It’s true that most people with autism cannot figure out the mental states of other people from nonverbal cues. It’s also true that Baron-Cohen, despite his obsession with the external behaviors of autistic people, is unable to figure out our mental states at all. Does that make him autistic? After all, he’s a man and he can’t read our minds.

I rest my case.

“(vi) Parents of children with autism or AS (who can be assumed to share the genotype of their child) also show superior spatial abilities and relative deficits in mindreading (i.e., a marked male brain pattern (Baron-Cohen and Hammer, in press b).”

If the female, non-autistic parent has superior spatial skills, doesn’t that disprove that such skills are inherently male?

“(vii) Normal males have a smaller corpus callosum than normal females, and people with autism or AS have an even smaller one (Egaas, Courchesne, and Saitou, 1994).”

A 1997 study by Professors Bishop and Wahlsten at the University of Alberta showed that, on average, the corpus callosum is larger in males, not smaller. According to the article, “Data collected before 1910 from cadavers indicate that, on average, males have larger brains than females and that the average size of their corpus callosum is larger…The recent studies, most of which used magnetic resonance imaging (MRI), confirm the earlier findings of larger average brain size and overall corpus callosum size for males. The widespread belief that women have a larger splenium than men and consequently think differently is untenable.”

“(viii) Left handedness is more common among males, and people with autism or AS show an elevated incidence of left-handedness. Fein, Humes, Kaplan, Lucci, and Waterhouse (1984) found an 18% incidence of left-handedness in autism. Satz and colleagues (Satz, Soper, Orsini, Henry, and Zvi, 1985; Soper, Orsini, Henry, Zvi, and Schulman, 1986) found a very similar picture: in their autistic sample, 22% were left handed.”

I didn’t find any of the previous criteria compelling in the least, but now that we’re talking about left-handedness, I really have to give the professor his due.

Yes, my friends, I am left-handed and autistic.

Of course, my mother, who was also left handed, was not autistic. My father, who was not left-handed, was almost definitely autistic. And my mother’s parents, both of whom were left-handed, were neuro-typical. But why throw in such annoying details when the proof is sitting right in my left hand?

“(ix) In the normal population, the male brain is heavier than the female brain, and people with autism have even heavier brains than normal males (Bailey et al, 1994).”

Apparently, to Professor Baron-Cohen, size matters.

“(x) In the normal population, more males are found in mathematical/mechanical/spatial occupations than females. Parents of children with autism or AS are disproportionately represented in such occupations (Baron-Cohen, Wheelwright, Bolton, Stott & Goodyer 1996). These occupations all require good folk physics whilst not necessarily requiring equally developed folk psychological skills.”

Like his first conclusion, his final one ignores the effects of culture and context. Girls are socialized and educated to follow paths that do not involve mathematical, mechanical, or spatial skills. No proof exists that females, by nature, find it difficult to acquire these skills. None.

In addition to the faulty evidence that Baron-Cohen adduces, there are three general problems with his theory:

1) He employs a dichotomy between the empathizing female brain and the systematizing male brain. Apparently, he has never considered the idea that systematizing and empathizing could exist in extreme measure in the same brain. His theory leaves out those of us who both systematize and empathize in non-normative ways.

For example, like many autistic people, I systematize constantly, and I also have extreme amounts of empathy. Where do I fit in his paradigm? Nowhere.

2) The theory assumes that our autistic brains are an odd version of non-autistic brains. Baron-Cohen doesn’t consider the obvious fact that autistic brain development and cognitive abilities are substantially different from those of neuro-typical people. He takes a brain structure that he considers “normal” (i.e. his own), and then he decides that any other type of brain must simply be a variation of the norm.

3) Baron-Cohen utterly ignores the fact that men are socialized to be analytical, practical, and unemotional, while women are socialized to be intuitive, emotional, and sensitive. Because Baron-Cohen, like many of his peers in the academic and scientific communities, remains oblivious to the cultural context in which he operates, many autistic women still go undiagnosed. We’re just not “male” enough to show up on his radar. 

Like the insult that autistic people lack empathy, a theory that leaves autistic women undiagnosed is not simply wrong. It has serious consequences for our well-being.

In my opinion, most autism “experts” fail to understand autism. The academics and scientists who study us, observe us, test us, and wring their hands over us are neuro-typical. Therefore, they cannot intuitively understand our internal processes and experiences. The best of them listen and learn. The worst of them publish incorrect—and damaging—conclusions.

For my own part, I’ve gotten the best information from other autistic people. We are the true experts on autism. Just as even the most sensitive man cannot be an expert on what it’s like to be a woman, so even the most sensitive neuro-typical person cannot be an expert on what it’s like to be autistic. It’s simple neurology. It can’t be done.

© 2009 by Rachel Cohen-Rottenberg

In an October, 2007 article, Henry Markram, Tania Rinaldi, and Kamila Markram of the Brain Mind Institute, Ecole Polytechnique Fédérale de Lausanne (EPFL), Switzerland, posit a new theory about how the brains of autistic people work. They refer to autism as Intense World Syndrome, turning widely accepted thinking about autism on its head.

I recently stumbled across this article, so I thought I’d share some of its insights. While I dislike some of the authors’ attitudes toward autism and autistic people, their theory seems to reflect many of the ways in which we describe our own experiences.

I’ll get the negative aspects of the article out of the way first, and then we can look at the positive things the authors have to say.

Problems with the Article
1. There is the usual garbage about how we suffer from a horrendous disease. For example, the article begins with the following words: “Autism is a devastating neurodevelopmental disorder…”

They’re lucky I’m tenacious and hopelessly optimistic. And autistic and hyper-focused. Otherwise, I’d have stopped right there.

2. The authors show a stunning lack of knowledge about how autistic people learn and develop over the course of our lives. For example, the authors state, “Autism is now recognized as a neurodevelopmental disorder manifesting within the first 3 years after birth and progressively worsening in the course of life.”

I guess I’m lucky I can still write. I’d better get going on the rest of this post before I lose any more brain function.

3. The authors make the blithe assumption that autism can (and should) be cured.

They first posit that autism is a disorder in which the “normal unfolding of the genome can be sabotaged by an epigenetic attack.” An epigenetic attack is one that causes a genetic change without affecting the underlying DNA sequence. The authors speculate on possible causes of such an attack, such as environmental toxins.

But never fear. There’s hope for us mutants yet. The authors continue: “Understanding the ultimate cause of autism lies in understanding the nature of the epigenetic attack and developing the ultimate cure for autism lies in being able to prevent this attack and reverse its effects once it has occurred.”

So someday, someone may try to turn me into a normal person. Good luck.

4. They come to their conclusions based mainly on research using lab rats. (I’m not defending the rights of lab rats. I’m pretty warm and fuzzy toward most animals, but as far as I’m concerned, rats are on their own.) My issue is that they use rats to arrive at conclusions that they could also arrive at by talking to autistic people.

If I didn’t mind flying, being away from home, or going on sensory overload, I’d probably spend some time outside one of these labs with a sign reading:

TO THE NEURO-TYPICAL DOCTORS:
FORGET ABOUT THE RATS.
THERE IS AN AUTISTIC PERSON OUTSIDE.
SHE WILL TALK TO YOU FOR FREE.
JUST USE YOUR WORDS, AND YOU WILL FIND TRUTH.

Okay, so much for the problems. Let’s get to the good stuff.

Definition of Intense World Syndrome
The authors lay out their hypothesis in this way:

“Based on the recent multi-screening results obtained on the valproic acid (VPA) rat model of autism, we propose here a unifying hypothesis of autism where the core neurophysiological pathology is excessive neuronal information processing and storage in local circuits of the brain, which gives rise to hyper-functioning of the brain regions most affected. Such hyper-functioning in different brain regions is proposed to cause hyper-perception, hyper-attention, and hyper-memory that could potentially explain the full spectrum of symptoms in autism.”

Neurons process and transmit information by electrochemical signals in the brain. Sensory neurons respond to visual, auditory, tactile, and other stimuli. So, according to these scientists, autistic people do an excessive amount of sensory processing. We experience the sensory world more intensely than other people, we attend to details in a more focused way than other people, and we store information (that interests us) far longer than other people.

Makes sense to me.

They continue: “We propose that a common molecular syndrome is activated in autism that produces hyper-functioning in a coordinated manner by forming hyper-reactive and hyper-plastic microcircuits in different brain areas.” As far as I can tell, they are positing that the autistic brain reacts more strongly to sensory stimuli than a neuro-typical brain (thus, the “hyper-reactive” microcircuits), and rearranges the connections between its neurons more often than a neuro-typical brain (thus, the “hyper-plastic” microcircuits).

The researchers then suggest that our hyper-reactive and hyper-plastic microcircuits cause us difficulty in integrating sensory stimuli. Thus, we tend to focus intensely on one part of the sensory world, and we have difficulty shifting our attention:

“This core hyper-functioning pathology is proposed to cause the spectrum of autistic symptoms by rendering local neural circuits hyper-sensitive to novel and past stimulation, and once activated, these microcircuits could become autonomous, difficult to control and coordinate with the activity in other microcircuits. Hyper-reactivity and hyper-plasticity are therefore proposed to cause exaggerated perception to fragments of a sensory world that are normally holistically correlated…and furthermore to cause hyper-focusing on fragments of the sensory world with exaggerated and persistent attention. Such hyper-attention could become difficult to shift to new stimuli…The positive consequences are exceptional capabilities for specific tasks while the negative consequences are a rapid lock down of behavioral routines to a minute fraction of possibilities, which are then repeated excessively.”

The authors also discuss their finding that autistic people may have a hyper-reactive amygdala, the part of the brain that processes memory and emotion. Because the amygdala is hyper-reactive, they believe, we do not let go of fear memories in the same way as neuro-typical people. We therefore perseverate as a way to calm and channel our anxiety.

Having concluded that our brains are highly sensitive, the authors assert: “In such a scenario, the world may become painfully intense for autistics and we, therefore, propose autism as an Intense World Syndrome.”

I think that’s right.

Now for the fun part: upending the accepted theories.

Poor Executive Function Theory
The term executive function refers to a person’s ability to disengage from his or her current environment in order to act upon a model of behavior in the mind or a series of future goals. Because autistic people tend to have poor executive function and a preference for sameness and routine, researchers had assumed that this deficit derived from hypo-functioning of the pre-frontal lobes.

However, the Intense World Syndrome theory posits that poor executive function derives from hyper-functionality of the brain’s circuits, causing an autistic person to attend to, remember, and focus on particular pieces of information, especially stimuli in one’s current environment.

Theory of Mind (ToM) and Mind-Blindness
Just because it’s so wonderful to hear someone else say these things, I’ll let the researchers speak for themselves:

“Autistic people are thought to be severely impaired in empathising with other people and ‘reading their mind,’ which is captured in the ‘theory of mind’ or ‘mind-blindness’ theory of autism… The proposed deficits in reading other people’s feelings and thoughts and the lack in empathising with other people has been commonly used to explain the impairments in social interactions and communication as well as inappropriate responses in social encounters…

We…propose that the autistic person may perceive his surroundings not only as overwhelmingly intense due to hyper-reactivity of primary sensory areas, but also as aversive and highly stressful due to a hyper-reactive amygdala, which also makes quick and powerful fear associations with usually neutral stimuli. The autistic person may well try to cope with the intense and aversive world by avoidance. Thus, impaired social interactions and withdrawal may not be the result of a lack of compassion, incapability to put oneself into some else’s position or lack of emotionality, but quite to the contrary a result of an intensely if not painfully aversively perceived environment.”

I think they’re onto us now.

The Hypo-Functioning Amygdala Theory
I’ll let the authors speak for themselves again:

“The current version of the amygdala theory of autism assumes a hypo-functional amygdala, which leads to lack or inappropriateness of social behavior in autism. In this view, autists fail to assign emotional significance to their environment and for this reason are not interested in others, do not attend to faces, and fail to engage in normal social interaction…[W]e propose that this view may be not correct and that quite to the contrary, the amygdala in the autistic individual may be hyper-reactive which leads to rapid excessive responses to socio-emotional stimuli. In this view, the autistic person would be overwhelmed with emotional significance and salience. As a consequence, the subject would want to avoid this emotional overload and would have to withdraw from situations, such as social encounters, which are rich in complex stimuli.”

Amazing, isn’t it? I keep reading this paragraph over and over, just to make sure it’s real.

The “Autistic Person Is Missing Some Puzzle Pieces” Theory
Far from considering autistic people as incomplete individuals with missing pieces, the authors conclude that “the autistic person is an individual with remarkable and far above average capabilities due to greatly enhanced perception, attention and memory. In fact, it is this hyper-functionality which could render the individual debilitated.”

In Closing
I found my way to the Intense World Syndrome theory by way of a great article by Maia Szalavitz. The article discusses Intense World Syndrome and contains some very good information about autism and empathy. 

Looks like word is getting out.

© 2009 by Rachel Cohen-Rottenberg

AANE is the Asperger’s Association of New England, based in Watertown, Massachusetts. I used to have an AANE link in my list of favorite blogs and websites, because there is some good information on their site. I just removed the link, however, because my experience with the organization has not been good.

I joined AANE a couple of months ago. On the membership form, there was a question as to whether I would be willing to volunteer my time and skills. I checked “Yes,” specified that I could write or speak on their behalf, and gave them the link to my blog. I got back a canned “Welcome” message, which was fine, and I got some of their materials by regular mail, which was also fine.

Then, in one of their publications, I noticed that they were going to run workshops on independent-living skills. And who was funding these workshops? You guessed it. Autism Speaks.

Arghh. Brain freeze. The independent-living skills workshops sound great. Autism Speaks…does not.

I knew I’d just had my first indication that my association with AANE might not last very long. But I thought, well, the money is going out of the coffers of Autism Speaks and toward a program that will actually benefit autistic adults. At the very least, Autism Speaks will have less money with which to seek a “cure.” 

However, the connection with Autism Speaks bothered me enough that on Tuesday, I wrote to one of the higher-ups at AANE. She was someone who had responded to a previous request for information some months back, so I felt it was appropriate to direct my email to her. Basically, I wanted to know whether there are Aspies on their paid staff and board of directors. (Autism Speaks has no autistic people in either capacity.)

I didn’t want to sound accusatory or overly blunt, so here was the way I framed my request:

Hello,

I’m an adult with AS, and I recently joined AANE.

I have a question: I’m curious as to how many people on the AANE staff and board of directors have Asperger’s Syndrome. What is the ratio of Aspies to AS-knowledgeable professionals? The ratio seems to vary among different autism-related organizations.

I like the work that AANE is doing and would like to see more of an AANE presence in southern Vermont.

I thought that was pretty nice. I even used the word “curious,” as in “Please don’t feel threatened. I’m just asking is all.”

The response I got back was pretty curious in and of itself. It said, in part:

It is our mission to include AS adults on our staff, as volunteers and on our board.  ALL of our staff are well versed in AS and are understanding and supportive workers.

“It is our mission”? I don’t think that really answered the question. And then capitalizing the word ALL. That seemed unnecessary. And a bit defensive. And like she was raising her voice to me. That is not a good thing to do with an Aspie, raising your voice. Not at all. Not even in email. It feels neither understanding nor supportive.

As for the part about having more of a presence in Vermont, she said that they are stretched pretty thin. They tried to have a conference in Vermont in the fall, but they had to cancel it because of low turnout. Fair enough, except that this is how she said it:

You have to remember the populations in VT, NH, & ME are relatively small and we need to pay folks for their work so a low turnout for events is difficult.

I have to remember that the populations of the upper New England states are relatively small? I live in one of them! Hello? Or was she saying that I have to remember that people need to get paid? Or both? I don’t know. All I know is that I really, really hate it when people say things like “You have to remember…” and then state the obvious. It’s so patronizing. I might be an Aspie, but that doesn’t mean I’m oblivious to my surroundings. In fact, the visual world kind of feels overwhelming most of the time, you know?

However, at the end, she said that if I have any ideas regarding an AANE presence in Vermont, that I should feel free to call her. That was nice.

So, I decided to deal with one issue at a time. I wrote a reply, asking only about whether there are Aspies on their paid staff and board of directors. Again, I was painfully deferential about it, so as not to come across as being harsh:

Forgive me, but I’m not clear—Do you have paid staff who have AS, and do any of your board members have AS?

She replied in the affirmative. Excellent.

Now, be aware that this whole exchange took place over the course of about an hour and a half on Tuesday morning. Given that she’s a higher-up in the organization, her response time was very good. So, I followed up about the AANE presence in Vermont:

Thanks for the clarification.

As for the AANE presence in Vermont…When I joined AANE, I noted that I have skills as a writer and speaker, and I would be happy to volunteer those skills up here in Vermont. I have never done grant writing and so couldn’t help with funding, but I would be happy to speak at schools or other organizations, write articles for local papers, be a point person for information in VT, etc. I realize that the populations are more sparse up here in the rural areas, but if I can help even one or two other Aspies, I’m happy. Of course, I can do this on my own, but I’d also be glad to do it as a member of AANE.

Let me know if I can be of assistance. (I have a lot of trouble using the phone, so please correspond with me by email.)

The reply? None. Nada. Rien du tout. Bupkes. Silencio. I’m running out of languages here. Bottom line: She ignored me. And did I mention that I’d already written to her when I first joined the organization, making the same offer of my time and skills, and giving her a link to my blog? I felt pretty sure she was ignoring me the first time, but on the off-chance that the email had gotten lost, I figured I might as well ask again. So, on this go-round, she was ignoring me a second time.

Okay. I can understand that maybe they don’t need what I’m offering. Well, actually, I can’t understand it, because they have no presence in Vermont, and I’m offering to give them one for free. But I can acknowledge that other people might not think that my ideas are good ideas. (It’s a Theory of Mind thing. I’ve been working on it for some time.)  

However, I don’t know for sure what this woman thinks, because she hasn’t given me the courtesy of a response. Here are some of the things she might have written:

“Thank you for your kind offer. I will have my assistant get in touch with you to discuss your ideas.”
“Thank you for your kind offer. However, your ideas are not a good fit for our organization.”
“I’m terribly busy right now, but I will get back to you within the week.”
“That sounds wonderful.”
“That sounds terrible.”
“Yes.”
“No.”
“Maybe.”
“Go away.”

I don’t really care about the answer. I just care about getting an answer. It’s so impolite to ignore someone.

At moments like this one, I am sure that courtesy is all but dead, gone, and buried in America. I am sure that I must be only one of a handful of hopelessly idealistic and very tired people who understand that when someone writes you an email, and offers to give you their skills and energy for free, you should respond.

I’ve learned not to be surprised by this kind of behavior from the world at large. I’m used to being blown off. I’m an Aspie. It comes with the territory. But being blown off by someone who helps to run an Asperger’s organization is really beyond my ability to comprehend. Is she completely unaware that we Aspies have lived our entire lives feeling invisible and ignored? That for us, words are a lifeline? That we have enough difficulties understanding the motivations of other people without someone at an Asperger’s organization confusing us even further?

I don’t know. But as my dear husband pointed out this morning, my track record with organizations is not good. Academia, the corporate world, religious institutions—I’ve left all of them behind. Now, I can add AANE to the list.

Looks like I’ll have to take my own show on the road. I’ve done it before, and I can do it again!

© 2009 by Rachel Cohen-Rottenberg

I really enjoyed reading all the responses to my post about the Sally-Anne test. Your comments helped me see a variety of reasons that a child might give one answer or another—reasons that have nothing to do with Theory of Mind (ToM) ability.

I began thinking more about the subject when I came upon an interesting post about joint attention on Quirky Mom’s blog. Her post reinforces my sense that the Sally-Anne test is measuring sensory processing differences, at least in some cases.

To quote Quirky Mom:

“Joint attention is what happens when two people look at something together, each aware of their shared attention on some object. This is a critical social skill that has its foundations in infancy, and it is a skill that is commonly impaired in children and adults with autism spectrum disorders. The ability to follow an adult’s gaze often emerges as early as 6 months in a typically developing child.”

Quirky Mom has been looking at her daughter Apple’s issues with joint attention. When Quirky Mom gazes in the direction of a particular object, and asks Apple the location of that object, Apple does not take any cues from her mother’s gaze. Instead, she looks all around the room for the object. When Quirky Mom describes the object and its location, Apple has no trouble taking the verbal cue and finding the object.

I had never thought about this subject before. I don’t think that I follow another person’s gaze very well at all. I’m too busy orienting myself in space and keeping track of what’s around me. If someone actually points at an object they want me to see, I have no trouble following that cue. It’s as though the person’s pointing finger creates a path through the maze of visual input that lies between me and the object. I can then navigate that path without any trouble

The key question in the Sally-Anne test is “Where will Sally look for the marble?” If you ask that question of a child who does not follow another person’s gaze, and who is used to looking all around to find something, it’s perfectly reasonable for that child to assume that Sally would do the same. When the child says that Sally will think the marble is in the box, it’s a reflection of how that child seeks out objects. It has nothing to do with whether the child understands that people do not always share the same bank of knowledge.

Thanks for posting about this subject, Quirky Mom. I’ll look forward to hearing more.

© 2009 by Rachel Cohen-Rottenberg

The basic Theory of Mind (ToM) test was first developed by Wimmer and Perner in 1983, and then modified by Leslie and Frith in 1988. Wimmer and Perner used dolls, while Leslie and Frith used human actors. Regardless of the version, researchers have always come to the same conclusion regarding the results of the test.

I’ve always had my doubts about this conclusion.

The most common form of the ToM test is called the Sally-Anne Test. The ostensible purpose of the test is to measure a person’s ability to attribute false beliefs to other people. In the original version, the clinician uses two dolls, Sally and Anne. Sally has a basket, and Anne has a box. Sally puts a marble in her basket and leaves the scene of the action. Anne takes the marble out of Sally’s basket and puts it in her box. When Sally returns, the clinician asks the child where Sally will look for the marble.

To pass the test, a child must say that Sally will mistakenly look in her own basket first, evincing the belief that Sally is unaware that the marble has been moved. A child who fails the test will say that Sally will look in Anne’s box, where the marble is actually located. In Simon Baron-Cohen’s 1985 study of ToM in autism, 80% of the autistic children failed this test. The conclusion drawn is that the autistic children have an impaired (or non-existent) ToM and cannot understand that other people have information and beliefs different from their own.

I am very bothered by this conclusion. Very, very bothered.

I know that most neuro-typical researchers believe they have a “normal” ToM and can understand autistic people rather well. Needless to say, I’m quite skeptical. It’s not rocket science to know that you can read people who are like you, but have a harder time reading people who are unlike you. I would much rather hear an autistic person describe his or her own experience than hear a neuro-typical researcher making statements about how autistic people view the world.

Moreover, I am very suspicious about someone drawing a single conclusion from a psychological test. People are so complex that one child’s answer may be due to a large variety of factors, some of which may not ever have entered the mind of the researcher.

I had an insight into alternative reasons for a “failed” Sally-Anne test when I was at my OT visit this week. During one of the exercises, the OT and I were talking about why I always move my head when I move my eyes, and why I always have to turn my whole body to look at something.  Until I started seeing my OT, it had never crossed my mind that I might look at something without moving my head, or that I might turn my head without turning my whole body. It occurred to me that a certain kind of hypervigilance is at work here, and that this hypervigilance is a feature of Asperger’s Syndrome.

For me, the visual and auditory world is a chaotic, ever-changing place. My eyes are always darting around, trying to make sure that the world is still in order. My sensory processing makes the world seem vast and overwhelming. To me, change is a given. I never expect anything to stay in one place. I’m so attuned to small details that I’m keenly aware when something has been moved, when a pattern has been interrupted, or when symmetry turns into asymmetry. It happens constantly. I like to organize things because it gives me a sense of control over a world that feels like it’s changing in strange and unexpected ways.

So when an autistic child is asked “Where will Sally look for the marble?” perhaps that child is so used to the world being chaotic and overwhelming that he or she automatically assumes that Sally would never look in the place she last saw it. To the contrary: she’d automatically look somewhere else. Being given only two choices—a basket and a box—the child picks the box. Given how the child perceives the world, this conclusion is perfectly rational. It doesn’t indicate a poor ToM at all. It simply indicates that the child believes that Sally processes sensory input like he or she does. Just because the odds are against Sally being autistic doesn’t mean that the child’s conclusion is wrong. The child is simply drawing a conclusion based on his or her own experience.

In this, the child who thinks that Sally will look in the box is no different from the researcher who assumes that that Sally will look in the basket. The “correct” answer is based on the researcher’s own sensory experience. To someone without sensory processing difficulties, the world appears a more orderly and manageable place. A neuro-typical person would figure that the marble would be where he or she had left it. It’s not surprising then, that neuro-typical children “pass” this test 100% of the time.

A better test might be to have Anne move the marble to an unknown place and ask the child whether Sally will think the marble has been moved. If the answer is yes, the reasearcher might then ask, “Where would she look?” If asked that question, the child might just say, “She’ll look everywhere she can.”  That’s the answer I would have given as a child, because my experience was that nothing stayed the same for very long.  If I had taken the test, I would have gotten dizzy and disoriented just thinking of all the possibilities for where the marble might end up. I’d probably have ended up crying in frustration.

If a researcher were to give such a test, the result would not imply an impaired ToM, but a different way of processing sensory information. It might imply that autism is a sensory processing condition, and that many of its features derive from sensory sensitivity and overload.

At least, that’s how it seems to me.

© 2009 by Rachel Cohen-Rottenberg

Anxiety seems to be very common for Aspies. I’ve struggled with it my whole life.

I’m realizing that much of my anxiety centers around the fact that I cannot guess what people think of me in any given situation. I can’t look at their body language, or their facial expressions, or their subtle nonverbal cues (whatever those are) and make any kind of educated guess. Simply put, unless someone says something outright, I can’t tell whether people like me.

Now, I know that this whole issue should be immaterial at my age. I mean, really. I’m not in high school anymore. But if I can’t tell what people think of me, I have two options:

1. Forget about the subject entirely.
2. Worry about whether I’ve completely screwed up.

Since I’ve been diagnosed with Asperger’s, I’ve found it easier to choose option 1. After all, I’m never going to fit in, so why concern myself with some ideal future in which I’ll belong? There will always be that strange, invisible force field separating me from most of the world. I’ve burned so much energy trying to belong—in academia, in the corporate world, and in religious institutions—that it’s a relief to realize that I’ll always be the odd one out. It’s a done deal. Now I can get on with my life. I can be myself. I can live with integrity. I can be kind to strangers. I can accept other people for who they are. I can love my friends and family. I can have my hyperfocus and my special projects and my general eccentricity. On a good day, it feels quite liberating.

But I’m finding it hard to break the habit of going to option 2. Usually, the anxiety is just a low rumble, but it’s there. I can look back and see that yesterday, people at work liked me. They smiled. They joked with me. They told me what a great job I’d done. But what about today? It’s a whole new day. What if today is the day that I screw up and have no idea that it’s happened?

My anxiety increases if I have to deal with any kind of misunderstanding, no matter how benign. When I misunderstand something, all of my alarms start going off. I think, “Oh no, what did I miss?” At such times, I forget that misunderstandings are common in life. That’s why there is a five-syllable word for them. We Aspies aren’t the only ones who misunderstand other people.

But consider this: Most people communicate nonverbally about 90% of the time. That means that 90% of the time, most people are communicating on a frequency that many of us Aspie folks cannot hear. And that makes this Aspie nervous.

Part of the anxiety is knowing the way that women communicate aggression. We don’t tend to express it like men. Men are very straightforward. Women manifest aggression very subtly. Ever notice the group of girls in the lunchroom looking at someone and giggling? Ugh. I was usually the person being looked at. I think. Or maybe not. Who knows?

I brought up this issue with my husband the other night, and he added a new wrinkle to the whole question. He said that most people do not make a judgment about whether they like someone or not. It’s mostly situational. If a situation is working well, and Person A does something that works for Person B, then life is good and Person B likes Person A. If Person A does not fit into Person B’s game plan that day, not so good. But nothing is written in stone (unless something major happens). Usually, it shifts from day to day.

Just thinking about this way of interacting makes me feel disoriented. It’s so foreign to the way I think. I usually scope people out and get a sense of their energy. I know when I’ve run into someone who is bad news. It doesn’t happen a lot, but when it does, my instinct tells me to tread carefully. And believe me, I ignore my instinct at my peril. If none of my alarms go off upon meeting someone, I generally like and enjoy the person.

Somehow, I don’t think I’m the only one around here who works this way.

© 2009 by Rachel Cohen-Rottenberg

Something difficult happened in the midst of my volunteer job yesterday. I got very emotional about it at the time, but I’m okay about it now. After looking at the situation and talking with my husband this morning, I’ve figured out a lot about how Asperger’s affects me and why I get so emotional.

Some background: Last Thursday, while volunteering at the store, I worked on organizing the shelves that hold newly arrived books. We have many other bookshelves that are already categorized and labelled, but the “New Arrivals” shelves weren’t. There were perhaps 200 books, and most were simply shelved wherever there was room. I offered to organize the books, and the manager in charge said, “Go ahead. Bend those shelves to your will.” So I did. I figured out what categories the books should go into, and I labelled the shelves accordingly.

It wasn’t an easy task. First of all, there was the necessity of getting books from the higher shelves and the lower shelves. With my gravitational insecurity, it was very difficult for me to go up and down like that, but I managed. Then, the book area is next to the children’s area. Around 3:00 pm, lots of kids came in, and they were rather loud and frenetic. Finally, I stayed an hour later than usual, breaking my own rule about avoiding sensory overload by limiting my shifts to 2 hours each.

I knew that I should have stopped at 2 hours, but the job wasn’t done yet, you know? It is next to impossible for me to stop doing something before it’s done, especially when I’m organizing something. If I leave the task when it’s two-thirds done, it is not organized. There is still chaos afoot. At least, that’s how my Aspie brain sees it.

So, I got home, and I was a bit of a basket case. I can’t remember exactly what I was feeling, but when my husband got home, I said, “I need to watch a TV show, and you need to hold me really, really tight.” In the course of the evening, my husband gently reminded me that when I overstay my welcome anywhere in the world, the result is usually not good.

Anyway, I recovered, and I had a wonderful feeling about the job I’d done. My husband went to the store on Friday, and when he came home, he gave me all sorts of compliments about the bookshelves. When I got to work yesterday, the manager also gave me good feedback. She told me I could do some more reorganizing in the book section if I wanted to.

So I went over to the book section and what did I see? The labels that I had put up were all gone and the books were all mixed up.

I kid you not.

I asked the manager what had happened. She said she wasn’t sure. There is a volunteer who takes care of new books on Sunday (when the store is closed), and people pretty much communicate with her via notes. So, it was most likely the volunteer who had undone my work. I don’t know why she undid everything. Perhaps she felt that I’d intruded on her territory. Apparently, she’s been doing the books for a long time. Or maybe my logic didn’t work for her. (I know it’s hard to believe, but stay with me here.)

When I saw all my work undone, I got really teary. I knew I was going to start crying, so I went into the bathroom and sobbed for a little while. Then, I went back into the store, did some other tasks, helped a customer find something she needed (which was a welcome break from my personal drama), and went home.

This morning, I was feeling so sad that I didn’t want to go back to the store anymore. I knew I would go back, but the feeling was there. My husband and I discussed it, and he said, “I see a pattern here. You find yourself in a situation that really works. People love what you bring to the place, and you love being there. Everything is wonderful until, one day, something goes wrong. And when it goes wrong, you leave.”

He was absolutely right.

So then I did what I usually do when he is absolutely right. I revert to my old habit of searching my psyche for what deep, dark reason I must have for perpetuating this kind of pattern. Was this a childhood issue resurfacing? Am I just immature? I was really stuck. And then, my dear husband said, “It’s like what you were saying on your blog yesterday. You stand at the border of a group. You figure out the rules. You enter the group when you’re reasonably sure you’ve got the rules all figured out. And then, at some point, you inevitably realize that you don’t have the rules all figured out. When that happens, you feel completely alienated, and you leave.”

He’s good, isn’t he? And he says all these things in such a non-judgmental voice, too.

So what have I learned about my Asperger’s from this little scenario?

1. I expect people to think like I do. When I rearranged the books into a logical order, I assumed that everyone would be happy. I didn’t allow for the fact that I might be stepping on someone’s toes, or that another person might find my sense of order confining, or that anyone would undo my work without checking to see what was going on.

2. Because I don’t intuitively understand the rules, I have to do a lot of thinking about them. When I’m faced with the fact that I missed something, I feel so scared, alienated, and upset that I want to cry. I suddenly remember that I don’t perceive things like other people do, which leads me to the conclusion that I’m not important and that I don’t belong. I feel like a little, lost kid watching all the grown-ups go about their lives while I’m crying over something that everyone else would consider trivial.

3. If I keep working when I know I’m getting overloaded, or if I keep working in defiance of my gravitational insecurity, nature will see to it that something falls apart. Sometimes, that’s the only way I get the message.

Just about every time that I’ve gotten upset and left a place, it was because the rules changed in some sort of painful way. In some situations, there was actual harm done to me or to the people I love. When I wasn’t able to mend the harm, I couldn’t stay and pretend that nothing had happened. So I left. But in this case, no lasting harm was done, so there is no reason to leave.

You will be glad to know that I went back to work today. It was a little crowded. I got tired easily and felt very out of sync, but that’s okay. It happens. Tomorrow is another day.

© 2009 by Rachel Cohen-Rottenberg

According to most scientific literature, an impaired Theory of Mind (ToM) is a core component of autism. In his 2001 paper Theory of mind in normal development and autism, Professor Simon Baron-Cohen explains his view of ToM impairment and its implications for autistic people:

“A theory of mind remains one of the quintessential abilities that makes us human (Whiten, 1993). By theory of mind we mean being able to infer the full range of mental states (beliefs, desires, intentions, imagination, emotions, etc.) that cause action. In brief, having a theory of mind is to be able to reflect on the contents of one’s own and other’s minds. Difficulty in understanding other minds is a core cognitive feature of autism spectrum conditions. The theory of mind difficulties seem to be universal among such individuals.” (Baron-Cohen, 3)

Every time I read this paragraph, my mind boggles at the dissonance between a) Professor Baron-Cohen’s view of autistic people and b) the profound diversity of experience of people on the spectrum. Let’s parse it one step at a time:

1. Having a normal ToM means the ability to reflect upon another person’s beliefs, desires, intentions, imagination, emotions, and other mental states.

I don’t remember a time when I didn’t reflect upon the mental states of other people. I have close friendships of many years duration with neuro-typical men and women. I have a wonderful marriage to a neuro-typical man, and I’m raising a well-adjusted neuro-typical daughter. I am fully aware that other people think differently than I do, sometimes painfully so. Therefore, I must have a “normal” ToM.

But I also have an AS diagnosis. Interesting.

2. Autistic people seem to have a universal difficulty with ToM abilities.

Uh oh. I must be really odd. I’m able to reflect upon the minds of others. Apparently, no other autistic person can match this feat. Just call me a lone ranger on the neurological spectrum.

3. Having a normal ToM is one of the core components of being a human being.

Oh, my. If you prick us, do we not bleed? Apparently not.

Now, I will readily admit that I cannot infer a person’s mental state by reading nonverbal cues. And while I can reflect endlessly upon the mental processes of neuro-typical people, I find certain of their characteristics unfathomable. Why do people enjoy socializing? What do they get out of it? Why are most people put off by discussion about serious matters? I haven’t a clue.

But let’s turn the tables for a moment. Let’s look at how unfathomable autistic people seem to the vast majority of neuro-typical folk. For many decades, scientists had no ToM regarding the mental processes of an autistic person. Guess how they found out? An autistic person wrote about it. She put it into words. She had to, because your average human being could not infer the mental state of an autistic person by translating his or her nonverbal cues. As Oliver Sacks wrote:

“In 1986, a quite extraordinary, unprecedented and, in a way, unthinkable book was published, Temple Grandin’s Emergence: Labeled Autistic. Unprecedented because there had never before been an ‘inside narrative’ of autism; unthinkable because it had been medical dogma for forty years or more that there was no ‘inside,’ no inner life, in the autistic. . .extraordinary because of its extreme (and strange) directness and clarity. Temple Grandin’s voice came from a place which had never had a voice. . .and she spoke not only for herself, but for thousands of others…” (quoted on www.templegrandin.com)

Wow. Temple Grandin wrote a book and the scientific community had a collective epiphany: “Eureka! We used to think autistic children were just empty shells! What a revelation!”

Who had the imperfect ToM for all those years? Who needed the nonverbal cues to be verbalized and explained? Who was mind-blind? It wasn’t just us.

So why do we on the autism side of the neurological spectrum get stuck with the label of having an impaired ToM?

And why are people on the neuro-typical side of the spectrum considered to have an unimpaired ToM, despite the fact that, prior to 1986, most folks had no idea that autistic people have an interior life?

The problem, of course, is that the scientific community has dubbed its own (neuro-typical) way of thinking “normal” and the autistic way of thinking “abnormal.” Thus, scientists have insisted upon interpreting an autistic person’s behavior the way they would interpret their own behavior.

For example, most doctors would consider an autistic person who does not speak in words to be “low functioning.” But what if the person were having a conversation without words? What if the person were using his or her sense of smell, taste, touch, sound, and sight to have a two-way interaction with his or her environment, an interaction that signals a vivid awareness of the richness and diversity of the sensory world? What if the person speaks through drawings, or paintings, or music? If an outside observer fails to properly read and interpret the signals that an autistic person provides, who has the impairment—the neuro-typical person or the autistic person?

My answer would be, “Neither.” One can only use the word “impairment” if one accepts the categories of “normal” and “abnormal.”

My hope is that the conversation will evolve past these notions and toward an appreciation of neurodiversity in all its forms.

© 2009 by Rachel Cohen-Rottenberg