Journeys with Autism

Autism Corps: USA

Over at Squidalicious, there is a movement afoot to create an Autism Corps, a federally funded organization to train volunteers to work with autistic children and adults. I’ve just joined up to help get the work going.

The Autism Corps petition describes the proposal in more detail. If you feel so inspired, please read it and add your name to the list.

World Inaugural Seminar on Girls and Women with an Autism Spectrum Disorder: Australia

Sponsored by Asperger Services Australia, this seminar will take place on Friday, August 7 and Saturday, August 8 at The Holiday Inn, Roma Street, Brisbane. The keynote speakers are Professor Tony Attwood and Dr. Michelle Garnett. Among the guest speakers is our very own Camilla Connolly. (Go Camilla, and thanks for the information!)

© 2009 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

When I was six years old, I made my first friend. Her name was Debbie, and she lived across the street from my house. We were the same age and immediately bonded over riding our bicycles together. I’d like to be able to say that we had an idyllic time, but the other neighborhood kids made sure to initiate us into the harsh realities of living on planet Earth.

There were some older boys at the end of the block who liked throwing sticks at our tires. I couldn’t understand why. What kind of fun is that? I figured that whatever their reasons for this absurd game, they’d get sick of it after awhile. So Debbie and I just kept going around the block, gamely riding through the gauntlet of flying sticks, until it was time to go home for dinner.

But the game continued, day after day, and showed no signs of stopping. I began to feel frightened—frightened not by the boys, but by my inability to understand what they were doing. When I told my parents what was happening, they became upset and told me that the boys were trying to knock us off our bikes. When I heard that, it was hard for me to fathom. It was the first time I’d ever experienced another child being cruel to me, and it just made no sense.

I am still that way today. I have been through so much cruelty in my life, and yet, any kind of cruelty shocks me. In fact, the shock is worse each time. The revulsion I feel is physical.

There was another boy who liked to scare me while I was riding my bike. He would stand out in the street and say “Stop in the name of the law!” So I stopped. Why? Because he said so. Literal me. I wasn’t any better at understanding deception than I was at understanding cruelty. I just took him at his word.

Once I’d stopped, he’d say “Can I see your license, please?” When I told him I didn’t have one, he’d say, “Well, then the police will come and throw you in jail!” I’d be so scared that I’d run into the house, shaking.

The game went on for a few weeks before my mother figured out a solution. She got a key chain with a replica of a small license plate and told me, “Next time he stops you, show him this.” So I did. And it worked. He never bothered me again. I was quite pleased.

But I still don’t understand. I don’t understand any of it. I’ve heard every explanation in the book, but I’ll never be able to feel inside me why someone would try to knock a six-year-old kid off a bike, just for fun.

© 2009 by Rachel Cohen-Rottenberg

I’ve always considered myself very peculiar in the ways that I deal with grief and loss. For the longest time, I couldn’t understand why some losses reduced me to tears immediately, while other losses left me nearly empty of feeling for years. Being diagnosed with Asperger’s has helped me to put my grief into a new framework. In this post, I’ll talk about some of the losses I’ve gone through, the ways I’ve handled them in the past, and the new understanding I am reaching about why I respond in the ways I do.

The Loss of My Grandparents
I was very close to my maternal grandparents, and over the course of my childhood, I saw them often. My grandfather had been a classical violinist, and he was very supportive of my being a musician. Along with my grandmother, he came to all of my recitals, and he loved to listen to me play the piano at home—except, of course, when I didn’t play well. Then, he would say things like “Mozart is turning over in his grave!” or “Stop banging on the keys!” I never felt at all irritated or intimidated by these comments. He was treating me like a peer, and I appreciated it.

In 1971, he was diagnosed with cancer and had an operation to remove a tumor the size of a tennis ball from one of his kidneys. He never really bounced back entirely, but he had a couple of very good years before the cancer re-appeared. By the end, the cancer had spread to his lungs and to his brain, and I was afraid to go and see him.

The night before he died, I finally visited him in the hospital. His condition was worse than anything I had imagined. His body was absolutely ravaged, and if I hadn’t known he was my grandfather, I might not have recognized him. When he saw me, he just cried and kept repeating that he wanted to die.

He passed away the next afternoon. I knew then, as I know now, that he was waiting to see me, and that he didn’t want to leave until he did.

My grandmother died a year and a half later, two days before my seventeenth birthday. She had been a generous, loving woman who had never spoken an unkind word to me. She used to come to our house on a regular basis with loaves of cinnamon-raisin bread, because she knew that we loved it. When I stayed at her house, she’d make me French toast with powdered sugar in the morning, and then she’d proceed to feed me every few hours, just to make sure I wasn’t going hungry.

One afternoon, she mopped her kitchen floor, lay down in her bed for a nap, and never woke up.

I didn’t cry for either of my grandparents when they died. I’m not sure that I even felt sad. I was trying desperately to locate my feelings, and I just couldn’t. At the time, I thought that something was very wrong with me. We had the funerals, we sat shiva, my mother was nearly inconsolable, and I felt like a ghost. When a friend at school offered her condolences, I realized that I ought to be feeling something, but I couldn’t figure out what it was.

It took me thirty years to cry for my grandparents. I was at a spiritual retreat, where we’d been asked to bring something of importance to us. I’d brought my grandmother’s brooch, which was the only possession of hers that I’d been given. During a healing ritual at the retreat, the floodgates opened, and I cried like I would never stop. It was both excruciating and cathartic, and I’m grateful that it happened.

A Friend’s Unexpected Death
In the middle of these two losses, a very brilliant and loving friend of mine committed suicide. In January of 1975, he took cyanide at the water fountain on the third floor of our high school. About a week later, the doctors took him off life support. He was 16.

At the time, all the adults said that his death was accidental—that he’d brought sugar to school to keep himself going, that he’d carried the cyanide with him for a science experiment, and that he’d gotten the two packets mixed up by mistake. I tried with all my heart to believe this story, but I never really did. Twenty years later, when I asked an old high school classmate whether she thought he had committed suicide, she said, “Yes, of course. I never believed that ridiculous story.”

That’s when I realized that I never had either. I’d always known. And I’d always felt incredibly guilty about his death. For one thing, in some part of my soul that I kept well hidden, I knew that my friend loved me. He’d walk over to my house late at night, just to see whether the light was still on in my room. He lived a good distance away, so I should have understood what was going on. But I was a silly teenager, giggling and dreaming about the boys that everyone thought were so cute, and I just didn’t want to deal with his feelings.

And then, there was the fact that the day before he took the poison, he’d wanted to talk with me. That nearly wrecked me. I remember the day very well, because there was an awful blizzard. Someone had offered me a ride home, which I very much wanted, because I hated having to wait for the bus in the freezing cold. As I was gathering my books together, someone else told me that my friend was on the fourth floor and really wanted to talk to me. I was so focused on getting the ride home, and so innocent of the possibility of what was about to happen, that I said, “I can’t right now. I’m getting a ride home. Tell him that I promise we can talk tomorrow.”

But there wasn’t any tomorrow. 

There were hundreds of people at his funeral, and I cried my eyes out from start to finish. I just sat there, all hunched over, with my hands over my face, crying so hard that when I raised my head up for a brief moment, everything was a blur. After the funeral, as we walked outside, the sunlight reflecting off the snow felt like it was burning my eyes.

And then, a mutual friend had the gall to say, “Well, at least he’s in a better place now.” If I hadn’t been so exhausted, I’d have unleashed a torrent of outrage and grief at him. As it was, I just thought, “How the hell can anyone say that? How the hell can life just go on without him?”

The next day, I sat in our history class, the tears running down my face, while our teacher continued the lesson plan without so much as a word about the empty desk where my friend used to sit.

The Break from My Original Family
As I’ve discussed in a previous post, I broke off contact with my parents in 1991, when I was 33. In return, the rest of my family broke contact with me.

In 2001, I decided to sit shiva for my parents, my brother, and my extended family. They were still alive, but my relationship with them was gone, and I needed a ritual to help me grieve them. So, I took out my favorite photographs of each of them, and made little yizkor books—photo albums of remembrance. Then, each day, a different friend came over. We shared the photos, talked, and took a long walk together.

I had assumed that my grief over my parents would hit me like a tsunami, but it never did. My grief at losing my brother, however, was unutterably painful. We’d been best friends when we were kids. I missed our childhood. I missed the children we once were. I cried, and cried, and cried.

As painful as it was, it was very good for me. I was finally able to take out some childhood photos of us and put them up where I could see them.

My Parents’ Deaths
Each year on my birthday, I would be haunted by the specter of my parents. I did not know whether they were alive or dead, and it was becoming increasingly difficult to wonder. In 2005, around the time of my birthday, my daughter urged me to start looking for answers, and my husband concurred. I still wasn’t ready. But then, every night, for two weeks, I had terrible nightmares. I dreamt that I was in a tight, dark space with no air, no way to see anything, and no ability to move. Every morning, I woke up screaming. At the end of the two weeks, I woke up calling for my mother.

At that point, my husband said, “You need to find out what’s going on. Now.” So, I did an online search in the Social Security Death Index, and I learned that my mother had died in June of 2004. I want to say that I dissolved in tears, and that there was much guilt, and regret, and gnashing of teeth, but all I could feel was relief. For the first time in my life, I felt safe. That was it.

My father died in February of 2008, and I found out about his death in much the same way. In his case, I also felt relief—for both of us. I had had very brief contact with an uncle who told me that my father was dying of emphysema. I was not surprised by this news, since he’d been a heavy smoker almost all of his life, but the thought of him suffocating to death was awful. When I learned that he had died, I was relieved that his ordeal was over.

Reflections on Why I Grieve the Way I Do
Sometimes, my expressions of grief happen right away; at other times, they are very, very delayed. I’m not sure exactly how to account for these kinds of variations, but they seem to have a lot to do with the sensory component of being an Aspie.

Like most (all?) Aspies, I do a lot of sensory work every day, and it’s very hard for me to switch gears quickly from one kind of experience into another. Normal transitions are slow and difficult; why should the huge ones be any different, especially when they are emotionally overwhelming? As a diagnosed Aspie adult, living in a calm and loving household, I can make the transitions more quickly. I cry much more easily now than I ever have. But as a child with undiagnosed Asperger’s, I was just trying to keep body and soul together, and it was a full-time job.

When my grandparents died, I was living in a state of unabated sensory overload. My parents were both very overwhelming to my senses, and I was in a state of constant fear. In the midst of all this chaos, my grandparents were everything to me. If it hadn’t been for their unconditional love, I don’t know whether I’d have survived. So I couldn’t feel the loss when it happened. It would have been too devastating. I just kept putting one foot in front of the other until high school was over, and I dreamed of the day I could get as far away from my childhood as possible. 

But I’ve never been able to outrun the sensory sensitivities. Because I experience the world very intensely, I’ve felt very apart from others my whole life. Because of this feeling, I’ve experienced life as a fairly regular series of losses, and sometimes, I just can’t handle another one. Every time that I realize that I’m not like others, that I don’t expect what others expect, that I can’t relate in the way others relate, that I can’t belong in the way others belong, my heart hurts, and I feel the loss. Every time. Like drops of water wearing away a stone, those small moments wear away at my heart. It’s been going on my whole life, whether I’ve perceived it or not, whether I’ve expressed it or not, and whether I’ve denied it or not.

And to make matters worse, I still read articles in which people express the mistaken assumption that people on the spectrum are devoid of feeling. Why do they judge our actions and feelings in the light of their own experiences? Why don’t they listen to how our apartness makes us feel? Why don’t they understand that the world comes rushing in at us, too loudly, too brightly, too quickly, and with more emotion than we can bear? Why don’t more people listen when we say that we have to find some way to get outside of the overload, to order it, to stand apart from it, just to be able to make sense of it at all?

As one of my email correspondents said, it’s because people have difficulty understanding and accepting difference. And I know they do. I just can’t understand why.

But I take great comfort in the words of Rabbi Menachem Mendel Morgensztern of Kotzk, who said, “The only whole heart is a broken one.” While others may refer to our neurology as a “disorder” from which we “suffer,” I know that our hearts and our minds are whole because of our life experiences, not despite them. It may take some time, but little by little, the rest of the world will know it, too.

© 2009 by Rachel Cohen-Rottenberg

I’ve been reading lately about Asperger’s and sleep disorders. From what I can gather, the problems fall into two categories. Some Aspies can fall asleep without a lot of trouble, but wake up several times during the night. Other Aspies have great difficulty falling asleep, but few problems staying asleep. At any given time, an Aspie can have one difficulty or the other, or a combination of both.

My Life as an Insomniac
I’ve experienced both types of difficulties, but my biggest challenge has always been falling asleep. As a child, it took me 2-3 hours to fall asleep at night. I had all kinds of ways of passing the time. My favorite was to hide a small transistor radio under my pillow and listen to talk shows about baseball or hockey. I’d turn the volume down low so that my parents couldn’t hear. In the absence of a radio show, I’d create an elaborate fantasy in my mind about becoming the first female baseball player and pitching a perfect game in the World Series. (For details about this particular portion of my interior life, see my earlier post.)

Outside of baseball and hockey season, I’d run through all the songs from Mary Poppins or The Wizard of Oz in my mind. We had LPs of each, and I’d listened to them so many times that I could recreate them verbatim in my head. If I were still awake, I’d make up stories about being adopted by some all-American family, like The Brady Bunch. This particular pastime would generally put me to sleep.

In the midst of the radio shows, the musicals, and the hope for a TV family, there was a constant anxious undercurrent. The only way I can express it is to say that I was just plain afraid to fall asleep. Specifically, I was afraid to lose consciousness. As a child, I was sure it would hurt to drop from consciousness into sleep, rather like falling from a second-story window onto my head. I used to go around in circles, believing that the longer I stayed awake, the worse it would hurt to fall asleep. Of course, the fear would only increase the wakefulness, and the wakefulness would only increase the fear.

As an adolescent, the problem became worse. High school meant loads of homework, constant sensory overload, and an alarming increase in the dysfunctionality of my home environment. I’d routinely stay up studying until 3:00 or 4:00 in the morning. I don’t think I was really learning anything. I was just keeping myself awake by staring at print and taking notes. Of course, having to get up a few hours later for a 7:30 bus didn’t help my stress level at all. By the time I left home, I was already chronically and painfully insomniatic.

As a young adult, I struggled with this condition for the next ten years. Not only was I unable to fall asleep easily, but I also started waking up in the middle of the night and often had difficulty getting back to sleep. For a short time, I used over-the-counter sleep remedies, otherwise known as The Pills From Hell. They suppressed my REM sleep, so although I slept, I woke up the next morning stressed from not having dreamt. The stress created so much pain in my body that I continued taking the pills just to fall asleep, which led to a vicious cycle of increasing stress, increasing pain, and increasing insomnia. The cycle ended two weeks later, when I finally realized why my mother’s friends had gotten addicted to sedatives. Never sleeping ever again was better than the alternative, and thus my two-week foray into the land of sedative medication came to an abrupt and bitter end.

I continued to struggle until 1987, when I was a graduate student and went to UC Santa Cruz for a weeklong conference. After three terrible nights of not sleeping at all, I drove myself to the emergency room, signed myself in, and told the attending doctor that he had two choices: give me pills to help me sleep or hit me over the head with a hammer. He gave me the pills. They were tricyclic antidepressants called Amitryptiline, and he had used them himself when he’d come back from Viet Nam in a state of traumatized exhaustion. After taking the first one, he’d slept for two straight days.

That sounded good to me. So I took the first tablet at 8:00 that night, and the next thing I knew, it was 6:00 the next morning. I had fallen asleep easily, I had slept through the night, and for the first time in my life, I felt happy to wake up and start the day. My heart was open, the birds were singing, and I was connected with everyone and everything. I felt, for lack of a better word, normal. At least, a lot more normal. Okay, a little more normal, but in a major way: I understood why other people got out of bed and looked forward to the day.

Fast Forward to the Present: Fighting Sleep
I’ve taken the same medication for over twenty years, and I no longer suffer from chronic insomnia and its associated physical and mental pain. The medication I take is non-addictive and non-narcotic. It allows me to get gradually tired and sleepy, like a, um, normal person. That’s the good news.

The bad news is that I now resist that effect of the medication. I resist going to sleep. Some people have a very good nighttime ritual, with a routine bedtime and everything. Some people can’t wait to get under the covers. Not me.

I’m okay until about 10:00 at night. I’ve generally had a good day. I’ve worked out, eaten healthy food, drunk plenty of water, spent time with my family, gone out to work, and immersed myself in writing or singing or art work. I’ve taken very good care of myself. Then 10:00 pm comes, and I stumble off the path. Consciously and willfully.

It starts with turning on the TV and watching some detective show, like Law and Order or CSI:NY. While I’m watching the show, I start getting hungry. At least, that’s what I tell myself. But I’m not really hungry. It’s more like my head saying, “Enough with the healthy food. Enough with the exercise. Enough with taking care of yourself. Let loose. Eat just to feel the food in your mouth. Eat whatever you want. In fact, bring up a spoon and a bowl, and eat in front of the TV, so you can feel worse and worse about the poor dead people on the show, and you can eat more and more to feel better. Won’t that be fun?”

That’s how it starts. If I’m very lucky, I can extricate myself from the TV by 11:00. You’d think by that point I’d be ready to call it a day, but you would be wrong. I come downstairs, and then I begin this strange, repetitive, non-functional routine (ever heard of those?). It consists of first going to the pantry and eating, in succession, some spoonfuls of almond butter (hmm, smooth and crunchy and healthy), some spoonfuls of tahini (hmmm, smooth and smooth and healthy), and some spoonfuls of granola (yum, refined sugar and crunchy stuff, too). Then it’s time to check the freezer, where I eat, in succession, spoonfuls of each kind of soy ice cream, spoonfuls of any other kind of ice cream, and then some chocolate. If there happen to be any large chunky things in the ice cream, like pieces of Snickers bars or cookie dough, all the better. I can begin excavating.

By this point, it’s about 11:30, and I’m almost literally stumbling around because I’m so tired. But I am determined to stay awake. So I go through the whole routine again, telling myself that I’ll just eat one more thing, and then that will be enough. It never is, of course. I finally have to close the freezer door and admit defeat. Whatever it was that I was searching for in the kitchen simply isn’t there. I could have avoided the entire last hour and a half and just gone to sleep.

But I never do. I’m like a kid again, afraid to go to sleep, afraid to let go of the day, afraid to lose consciousness.

Up to now, this problem hasn’t felt insurmountable. Lately, though, as I get more in tune with how the Asperger’s affects me, this strange late-night TV-and-food ritual has begun to make me feel literally sick. I go to bed feeling congested and sick to my stomach, and I wake up sick to my stomach and not wanting to eat or drink a thing.

I’m not sure how to work out of this pattern. I’m beginning to see its cause, however. Going to sleep means that I have to put in my earplugs, close my eyes, and stop ordering my world. I have to stop tracking and translating all the visual and auditory chaos I work so hard to keep in order.

How do I stop working so hard? How do I turn off the hypervigilance, the need to scan my environment and notice all its details? It feels like it hurts to stop. And I’m afraid. What will happen to the world when I sleep? What will happen to me? Will the chaos swallow me up? Will I awaken to a world that is completely overwhelming? Will I be able to put it back together?

So I use food and the TV to zone out while staying awake. I’m not working quite so hard. After all, the TV is creating its own order, and the food is just sitting there, waiting to be eaten. But I’m still vigilant. I’m still working. And ultimately, I have to go to sleep, and it never gets any easier.

There must be a better way.

© 2009 by Rachel Cohen-Rottenberg

[Note: This post talks about the physical and emotional abuse I experienced as a child. The descriptions aren't graphic, but if you're not feeling up to reading about the subject, you might want to skip this post.]

Lately, I’ve been reading a number of blogs written by moms of Aspie kids. At some point, each mom describes her child’s meltdowns, and asks for guidance and support. The girls’ meltdowns sound every bit as spectacular as the boys’ meltdowns—a fact that interests me a great deal, because I don’t remember having any meltdowns as a child.

Except maybe one. Or, at least, the beginning of one.

I was four years old and the flower girl at my uncle’s wedding. I was all dressed up and sitting in an empty room with pine wood floors. In front of me was a photographer who was getting ready to take my picture. To my right were a number of relatives, including some aunts and uncles, who started making baby talk and saying “Smile!” as the photographer picked up his camera. I decided, right then and there, that I would not have my picture taken. So, when the photographer pointed his camera at me, I started screaming. I really didn’t know why I was screaming, and I still don’t know why. It just felt like the right thing to do. When the photographer put the camera down, I stopped screaming. Then, when one of the relatives in the wings told him to try again, he’d pick up his camera, and I’d resume screaming where I’d left off. After several attempts, lots more annoying baby talk from my relatives, and lots more screaming from me, the photographer finally gave up.

Fast forward to the wedding reception. There I was, between my mother and my father, and the photographer thought he’d pull a fast one on me and take my picture. I caught him at it, though, and I started yelling my head off. The next thing I knew, my father yanked me by the arm down to the basement, where he started dragging me with one hand while he hit me, over and over, with the other. Everything became a total blur. At one point, an elderly man tried to stop the abuse, but he failed. I have a vivid memory of my ankles burning against the floor. I must have been completely overwhelmed, because I don’t remember how it all ended. I just remember coming back upstairs and feeling very ashamed and very ghostly.

There were many other incidents of this kind of behavior from my father. Often, my mother would set it up by concocting some reason that I’d pissed her off that afternoon. She’d then torture me for hours by telling me what my father would do when he got home. I was so afraid of the pain that I once tried to bribe her by spilling out the contents of my piggy bank on her bed—an attempt at self-protection that only infuriated her. By the time my father got home, I was actually relieved that the suspense was over.

So, here’s the question I’ve been turning around in my mind: Is it possible to hold back a childhood meltdown out of fear? It certainly seems so. When I was about ten years old, I remember walking upstairs in our house and realizing that I wanted to start screaming. I held it all inside me, though, because I didn’t want to get hurt. I remember thinking about it quite clearly.

Apart from the screaming episode at the wedding, I didn’t melt down again until I was out of my parents’ house, 3000 miles away, and in my first serious (and tumultuous) relationship. Then, I made up for lost time and had a series of absolutely stellar meltdowns. The best I can say for them is that they resulted in getting me into therapy, which was a blessing straight from heaven. Therapy didn’t just save my life. It enabled me to create a life worth saving.

But what happened during all those years of sensory overload, with my mother’s screaming and crying, and my father’s hitting and shouting? For one thing, I dissociated from my feelings almost entirely. Except for sadness and fear, I don’t remember having any feelings. Dissociation is very common with trauma, so that doesn’t surprise me.

But I did more than dissociate. I imploded. The meltdowns, which should have been on the outside, took place on the inside. I held everything in—all my fear, all my sensory overload, all my confusion, all my frustration, all my loneliness, and all my anger. But it didn’t stay inside and dissipate. It just wore me down and exhausted me with no possibility of catharsis. By my sophomore year of college, I was unable to read a single page of a book and remember what it said. When I tried to write my papers, the script was jagged because my hand was shaking.

That’s when I fled to the west coast. My first adult meltdown about four years later was an unbelievable relief. I felt as though I’d waited for it all my life. Which I had.

Whenever I read about parents of Aspies being concerned about handling their children’s meltdowns in the best possible way, I feel an incredible rush of love and appreciation for those parents. I’m not sure they know how well they’re doing. They seem to wonder whether they are being good parents. I wish I could get them all together and shout, “You are spectacular parents!”

And now, a question for other Aspie trauma survivors: Do any of you remember only a very few childhood meltdowns, or none at all? I’m wondering how common this scenario is.

If you’ve read this far, thanks for coming along with 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

A few months ago, I participated in a very spirited online discussion with a number of other women about whether female Aspies present differently than male Aspies. The more I learned about women’s experiences, the more I realized that the diagnostic criteria and the resulting research are based mainly on male models of thought and behavior. As a woman, I fit the relevant criteria, but they don’t explain the whole of me.

For example, Simon Baron-Cohen posits the “extreme male brain theory” to explain Asperger’s Syndrome. He employs a dichotomy between the empathizing female brain and the systematizing male brain. In Baron-Cohen’s theory, Aspies have extreme versions of the systematizing male brain. It’s as though the good professor 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.

I was becoming very frustrated by these kinds of ideas when I discovered Tony Attwood’s The Complete Guide to Asperger’s Syndrome. His book was the first one by a male researcher that made any sense to me as an Aspie woman.

Attwood begins his discussion of girls and Asperger’s Syndrome by questioning why the ratio of diagnosed male to female Aspies is 4:1. He suggests that the reason for this disparity is not that there are more male than female Aspies, but that many female Aspies do not appear to meet the clinical criteria. In a clinician’s office, female Aspies can often hold a reciprocal conversation, make eye contact, and use facial expressions appropriate to the subject matter. In other words, female Aspies can appear to have no social impairments.

As always, the problem is that many professionals do not look more deeply into whether we learn such skills intuitively. Attwood very aptly notes that we do not. Rather, we employ a number of intellectual strategies to learn social skills or to mask the lack of them.

Some male Aspies use the very same strategies. In fact, it would be difficult to find an adult Aspie, male or female, who has not employed at least some of these strategies. For the present, however, I will concentrate on Attwood’s insights about the social skills of female Aspies and why we often do not seem to meet the diagnostic criteria.

1. Careful observation of social situations
Girls with Asperger’s Syndrome often appear to be passive bystanders in group interactions. However, we are anything but passive. We spend our time actively observing others in a social group and determining what to do. As Attwood writes: “An example of a camouflaging strategy is to conceal confusion when playing with peers by politely declining invitations to join in until sure of what to do, so as not to make a conspicuous social error. The strategy is to wait, observe carefully, and only participate when sure what to do by imitating what the children have done previously (Attwood 46).”

I have always been the person on the outside of the social bubble, watching. As a child, I would look in, figure out the rules of the game, and decide whether I could successfully fit in. I would only enter a group if I felt reasonably sure of the rules of engagement. If the rules changed, I became quite disoriented and would leave the group very quickly (if I weren’t simply paralyzed by confusion, in which case I might remain until the group broke up).

One positive outcome of a lifetime of observation is that I became a very good facilitator in my last job. From all my years of watching people interact, I’d become well versed in observing process, so I could facilitate our weekly meetings with ease. I would notice who was quiet and hadn’t spoken up yet, who was talking too much, and who was trying to speak but couldn’t get a word in edgewise. I could step in and make room for each person to speak, and when the conversation was losing its focus, I could lead people back very easily. It was one of the best roles that anyone has ever given me.

2. Taking on the persona of a socially skilled peer
Many Aspie girls become very accomplished mimics. As Attwood writes: “The child adopts a social role and script, basing her persona on the characteristics of someone who would be reasonably socially skilled in the situation, and using intellectual abilities rather than intuition to determine what to say or do (Attwood 46).”

As I’ve written before, I chose a different girl each year of high school and tried to be like her. In creating a false persona, I was able to mask much of my confusion and insecurity. I spent a great deal of time observing the girl I wanted to become, thinking everything out, and getting my script in place. It was quite painful to shoehorn myself into another girl’s personality, but it allowed me to interact with other people, which felt much safer than enduring the ridicule that came with being alone.

3. Being quiet and following instructions
Despite the fact that I can do a monologue as well as the next Aspie, my main coping strategy as a child in school was to be quiet. Attwood writes that many of us use “strategies to avoid active participation in class proceedings, such as being well-behaved and polite, thus being left alone by teachers and peers (Attwood, 47).”

I went to a very conservative school that rewarded politeness. So long as I was well behaved and answered the questions the teacher asked, I didn’t get myself into any kind of trouble.

4. Developing protective friendships
Girls with Asperger’s tend to be more loyal in friendships than typical girls, and often develop friendships with someone who is safe and maternal. Attwood writes:

“A girl with Asperger’s syndrome…is more likely than boys to develop a close friendship with someone who demonstrates a maternal attachment to this socially naive but ’safe’ girl. These characteristics reduce the likelihood of being identified as having one of the main diagnostic criteria for Asperger’s syndrome, namely a failure to develop peer relationships. With girls, it is not a failure but a qualitative difference in this ability. The girl’s problems with social understanding may only become conspicuous when her friend and mentor moves to another school (Attwood 47).”

In my senior year of high school, I became best friends with a girl who was quite maternal and protective of me. She was very talkative and funny, and I allowed myself to get swept up by her energy. She was also an outsider and was thrilled to make friends with me. We were nearly inseparable. But when we went off to different colleges, I was a complete basket case. I showed up at college with absolutely no idea about how to interact with a new group of people. My freshman year roommate was anything but maternal and protective, and I made a number of social faux pas on which she was only too happy to capitalize.

It wasn’t a good year, especially after I flooded the entire first floor of my dorm by attempting to flush tampons down the toilet. An act of passive aggression, you say? Very likely.

5. Becoming little philosphers
While Aspie boys tend to become little professors, capable of holding forth with an astonishing array of facts, Aspie girls tend to become little philosophers who think long and deeply about human interaction. As Attwood writes: “From an early age, girls with Asperger’s syndrome have applied their cognitive skills to analyse social interactions and are more likely than boys…to discuss the inconsistencies in social conventions and their thoughts on social events (Attwood, 47).”

Analyzing social situations and human motivation is still one of my favorite pastimes. I can’t say that I always understand what makes people tick, but I’m very interested in the question nonetheless. The fact that female Aspies tend to observe, analyse, and critique social interactions may appear to indicate that we have no social impairments and feel more comfortable with people than with objects. It seems to me, however, that the only people interested in observing, analysing, and critiquing social interactions for free would be people who can’t intuitively grasp them.

6. Watching soap operas
My friends, I’m about to let you in on my deepest, darkest secret. When I was a girl, I watched soap operas with my mother every winter afternoon. We watched daytime dramas called The Edge of Night, The Secret Storm, and Another World.

There. Now I’ve said it. I feel so much better.

Actually, this special interest is not unusual for Aspie girls. Attwood writes: “The unfolding drama provides a voyeuristic insight into interpersonal relationships…The activity also provides a ’safe’ vantage point from which to observe and absorb knowledge on friendships and more intimate relationships (Attwood 181-182).”

Because of the melodramatic aspect of soap operas, I can’t say that I learned a lot about how to form intimate relationships. What I did learn, however, was very useful to me: People make messes of their lives because they won’t say anything directly. In every single episode of every single soap opera, people suffered unnecessarily because someone, somewhere, was hiding something. It was absolutely excruciating.

I used to ask my mother why people didn’t just come out and say who they loved or whose baby they were having. Her response was always the same: ”Well, if they did THAT, there wouldn’t be a STORY!”

If anything, watching soap operas confirmed in me the value of Aspie directness.

For those who are Aspie women, or who are raising Aspie girls, I hope this information will be a useful starting point for understanding more about how we navigate our world.

© 2009 by Rachel Cohen-Rottenberg

Many Aspies have difficulties navigating the world of friendship, and I am no exception. I have good friends of many years duration, but I find it hard to traverse the territory between acquaintance and close friend.

As I wrote in my last post, high school was the beginning of my social difficulties. I couldn’t understand the rules of social interaction. I always felt mystified by that strange, invisible force field that seemed to separate me from other people. I pretended to be “normal,” but I had a sinking feeling that I wasn’t fooling anyone. I was very uncomfortable in my own skin, felt constantly overloaded, and couldn’t imagine why anyone would put up with me.

Nonetheless, I had several friends in high school, all of whom were outsiders of one kind or another. My friends seemed to like me, but to be honest, I still don’t know why. Because I was involved in music, I had a kind of crowd, but I always felt socially outclassed and very much younger than everyone else. It was as though everyone were growing up around me, and I was a perpetual kid.

Not surprisingly, I got verbally bullied fairly regularly.

When I was a freshman, one boy wrote in my autograph book: “To a girl who nobody likes and a teacher’s best friend.” I was so naive that I kept looking at what he wrote, trying to figure out the joke. I couldn’t imagine that anyone would be so mean as to write such a thing in an autograph book and be serious about it.

I took to sitting alone, just to have a break from other people. It felt like a great relief—that is, until another student came up to me and said, “Hello, friendless.” That was enough for me. I decided to sit with other people on a regular basis no matter how exhausting it was.

By my senior year, I began to realize that people thought I was rather strange. Several people signed my yearbook with a variation of “It’s been real (?)” and a couple of people made crude sexual jokes. I couldn’t figure any of it out. Did people think I wasn’t real? Was there a question in their minds? And were they actually having sex in high school while I was studying for my SATs?

I was so behind the curve.

Was I strange?  I don’t think I was, really. I was different, that’s for sure. I was also exhausted from the physical and mental exertion of trying to keep up with lots of conversations, of walking in the midst of a crowded high school, and of defending against the noise and the chaos in the hallways. I was nearly overwhelmed with anxiety over my need to mimic other people, and I felt panicked by my inability to understand why I hadn’t felt like a person since grammar school.

I couldn’t even figure out why people laughed until a friend explained it to me. She said, “It’s easy. If you think it’s funny, laugh. If you don’t, don’t.”

I was really struggling.

College and graduate school weren’t all that much of an improvement. I felt equally lost in an even bigger world. I excelled academically, and that gave me a certain amount of self-esteem, but it was wearing very, very thin.

I turned a corner of sorts when I began a career as a technical writer. I lost some of my insecurity and became much more sociable. I began to regain that sense of self that had been missing since childhood. I have been puzzling over those days and why I did so well. I’ve finally discovered the answer.

The software industry was the first daily environment since grammar school that made sense to me. The rules were clear. The projects were well defined. I did a good job and got rewarded for it. Best of all, writing departments were populated by people with literature and language degrees, like myself. I made several friends with whom I am still in contact almost 20 years later.

I didn’t spend a lot of time with friends outside of work, though. The structure of the workplace was very important. Put me in an unstructured situation, without a clear goal, and I was dazed and confused. Working in an office, in a structured situation, I got to have lots of interesting conversations and still get my work done. Each day during my lunch hour, I’d take a walk with a friend and we’d talk about religion, or politics, or what was going on in our lives. It was close to perfect.

When my daughter was born, I discovered another avenue into the world of adult friendships. Showing up anywhere with an infant was an instant conversation starter. People would ask her name, and tell me how sweet she was, and show me pictures of their own children. When we moved into a neighborhood with a lot of kids, I had a ready-made social group of other parents.

But as my daughter grew, I began to notice something troubling about my neighborhood friendships. With a couple of notable exceptions, my relationships tended to consist of people telling me about the problems in their lives but rarely asking about my own. In fact, it didn’t seem to occur to them that I might have problems, too.

I didn’t understand the reason for this lack of social reciprocity. At the time, I thought that I wasn’t responding to people properly and giving them the support they needed. I was convinced that I was saying the wrong things, and so they didn’t want to know anything about my experience.

I now realize that people were responding to my Aspie innocence. People knew that I was trustworthy, and they would tell me things that they didn’t talk about with anyone else. I heard about alcoholic husbands, abusive partners, and the details of serious health problems. When I went for walks in the neighborhood, elderly ladies would even run out in the snow in their slippers to talk to me.

It was all very flattering, and even reassuring, to some degree. But it was also very empty. When my first marriage broke up and I told some of the neighbors, they literally took several steps back and didn’t want to hear about it. I realize that I shouldn’t have been shocked by this turn of events, but I was.

I’ve learned a lot about myself since then. In another post, I’ll write about more recent experiences and how I currently navigate the world of other people.

© 2009 by Rachel Cohen-Rottenberg