Journeys with Autism

Virtually all of us have had the experience of letting our hopes blind us to what is actually going on. There are a few spiritually attuned people in this world who, more often than not, respond to exactly what is happening in the moment, but alas, I am not one of them. Like most people, I get derailed by what I want, by what I need, and by what I fear. And, like most people, I suffer the emotional consequences of the clash between my projections of what will happen and the reality on the ground.

As an autistic person, though, I find that the physical impact of letting my expectations get in the way of my better judgment is often profound. Since Thursday, I have been dealing with the physical impact of meeting with my nonverbal autistic counterpart (whom I’ll call Jenny) and the very kind neuro-typical man with whom she shares a home (whom I’ll call Joe). While there were many good things about our visit, I’ve allowed the good things to get in the way of noticing the impact of the difficulties. Since our visit, I’ve had intense and troubling dreams. I’ve woken up every morning with my heart racing. I’ve been on the edge of a migraine almost constantly. Today, I am finally figuring out that something went wrong, but only because my body has been screaming at me for three days to listen up.

So, I’m listening. What I’m learning is that my very tenacious mind ignored a long series of “uh oh” moments that might have helped me care for myself in essential ways.

Here’s how it started: The week before last, when we were planning the visit, Joe and I had some wonderful email conversations. He is a very good person who is trying his best to understand what Jenny needs, and his emails reflected that. However, there were signs that his hopes for the visit were beginning to get the better of him. I could see his very great need for respite and his very great desire for Jenny to find a friend. A little tiny voice inside me said “uh oh,” but I ignored that tiny little voice.

I know exactly why I did it, too: Joe’s need for the situation to work exactly mirrored my own. I very much wanted to make another friend, and I very much wanted to stretch my consciousness of what friendship means altogether. So, over the course of a week, Joe and I built a picture of what we hoped would happen, despite the fact that I had never met Jenny and she had never met me.

In his emails, Joe had described Jenny as being very easy-going and able to go almost anywhere without a lot of difficulty. On the day of the visit, however, Jenny was quite agitated. I could see it the moment they got out of the car. Joe said that she rarely becomes agitated, and that he wasn’t sure why it was happening. I thought perhaps it was just anxiety at being in an unfamiliar environment, but he said that she’d woken up jittery that morning. That little voice in my head said “uh oh” again, but I told it to be quiet and to stop bothering me.

As a result, I quickly overrode my own agitation and tried to be a welcoming host. I invited Joe and Jenny into the house, where Jenny began to move furniture and grab food out of the refrigerator. I was so intent on being welcoming that I discounted how unsafe I was beginning to feel. Jenny isn’t much taller than I am, but she is one strong woman with a very strong will. It was quite difficult to get her to move away from breakable pieces of my daughter’s artwork. The little tiny voice in my head peeped “uh oh” again, but to no avail. I wasn’t listening.

After a short time, we decided to go out for a walk. Jenny and I walked hand in hand, while Joe followed behind. I understood why Joe was there: he wanted to be sure that Jenny felt safe and that I could keep her safe. I kept telling myself that it was fine, but there was that threesome thing happening, and y’all know what happens to me in crowds of three. Uh oh. I was enjoying Jenny and our walk, but I was also getting overloaded.

When we got back, Joe seemed disappointed in the visit. I got the feeling that he’d been hoping that I’d seem more like Jenny, and that I’d be a kind of bridge between them. So, yes, wanting desperately for things to work, I began to articulate the ways in which Jenny and I were alike. At the same time, I was keenly aware of the fact that Joe viewed me as far more neuro-typical than autistic. And yes, that poor little muted voice whispered “Uh oh, and maybe you should keep your mouth shut now?” but there was no point in ruining a perfectly spotless record of ignoring every last signal to take care of myself. So, I tried to explain that I’m autistic and not neuro-typical, which meant that I was talking far too much, for no good reason, and exhausting myself in the process.

Will I ever learn that explaining myself does not work? (I’m aware that the question is beginning to sound rhetorical, and it concerns me.)

In any case, it’s pretty clear to me now why Jenny felt so agitated. Over the course of a week, the expectations that Joe and I were co-creating had become apparent and Jenny had picked up on them. Great expectations of an unknown situation would make anyone agitated, especially an autistic person who is acutely aware of what is going on around her. The fact that she couldn’t verbalize her discomfort doesn’t mean that she didn’t understand what was happening. I’m sure she did. I’m completely agitated by the whole thing three days later, so her agitation should not have come as a surprise to me at all.

Time to let go. This relationship will not work, despite everyone’s best intentions. That little voice whispering “uh oh” has become rather loud, I’m afraid. It’s now shouting things like “Am I not getting through to you?” and “If you keep on with this, you’ll get a full-blown migraine.”

After three days, I can finally say to myself, “Look, it didn’t work for you, and it didn’t work for Jenny. That’s really okay. Other good things are happening, so just keep moving forward.” My head still hurts a bit, but my heart rate is beginning to return to normal.

© 2009 by Rachel Cohen-Rottenberg

I’ve been wondering whether there is a connection between my auditory oversensitivity and my inability to see nonverbal cues. I rely on my visual sense a great deal, and I experience the visual world with great intensity, so being unable to see nonverbals that are (apparently) right in front of me is very puzzling. It’s as though some obstacle were in the way.

I have read posts by other Aspies who say that they can see a person’s nonverbal signals all at once, but that they can’t understand the signals until later. These folks can replay interactions in their minds in order to view the nonverbals individually and interpret them. I envy Aspies who have this ability. When I’m interacting with a person, I don’t see any nonverbal signals of which I’m aware, so understanding these signals later is out of the question.

In last week’s ASL class, I began to get a hint of what might be the source of the problem. I was blocking out sound almost entirely, so I could not make out any words for the entire two hours. Because people were allowed to speak in the first two classes, some of them were taking the opportunity to ask a lot of questions. I couldn’t hear the questions, but my virtual deafness allowed me to observe people without any auditory distraction. All at once, I noticed that I was watching how one of my classmates used her hands and her facial muscles when asking a question. The inclination to watch felt intuitive, but my interpretation was on a wholly conscious level. I thought, “She’s moving her hands in such a way as to appear authoritative about what she’s saying. Her face gives me the feeling that she takes the subject matter of the question very seriously.”

I have no idea whether my interpretation was correct, but based on my previous interaction with the person, it was (at the very least) a good guess.

So, I got to thinking: Have I failed to see nonverbal signals all my life because I’ve been so distracted and overwhelmed by sound? As compelling as the visual world is to me, the auditory world commands my attention. Whether I’m listening to someone use a hammer, whisper in a movie theatre, or talk in a large group, my response is always the same: I can’t help but hear it, and I can’t help but be overstimulated and overtaken by it. It’s entirely possible that I’m not interpreting the nonverbals because my ears have been using up too much of my attention. Besides, because I’m always a click or two behind in a conversation, I’m spending so much time parsing the words that I haven’t got time for the nonverbals. And once I parse the words, the nonverbals that went along with them are already gone.

It’s also possible that my visual and auditory systems function in analogous ways. Just as I can hear everything very clearly, but can’t prioritize, filter, or interpret competing sounds, so I might also be seeing all the nonverbal signals very clearly, but can’t parse, separate, or interpret what’s right in front of me. When I walk into a large, noisy social gathering, I hear very little except pure, undifferentiated sound, and I overload immediately. Perhaps each person has the same effect on me visually: all the nonverbal signals get piled on top of one another until I see nothing except undifferentiated gestures and facial expressions whose cumulative impact is quite pronounced. After all, a face-to-face conversation is an extremely intense experience for me. It’s unusual that I can talk with anyone except a close family member without becoming overwhelmed. Perhaps I avert my eyes because I’m actually overloading on nonverbals.

If taking in undifferentiated sound has an impact, taking in undifferentiated nonverbals must have an impact as well. With sound, the result is auditory overload; with nonverbals, it seems to be empathic overload. Although I can’t parse the nonverbals, I have a very powerful experience of almost every person with whom I come into contact. I can feel the person’s mood and emotion. It’s a wonderful ability to have in a scary situation, but it’s close to disabling when I’m just trying to go grocery shopping.

Some people would call this kind of intuition a sixth sense, but I don’t believe that I have a sixth sense. I seem to have exquisitely acute senses that bring me information in ways that I don’t always consciously understand.

© 2009 by Rachel Cohen-Rottenberg

I’ve been going through an especially hard time lately. I’ve been feeling very dispirited, sad, angry, abandoned, and lost. I have days in which I cry virtually all day long. And then, I have days like today, in which I feel more grounded and more focused. Perhaps it’s simply that I got a full night’s sleep last night—the first full night’s sleep I’ve gotten in months. For the past few months, I’ve been waking up at 3:45 am, and then I have trouble falling asleep again. It doesn’t matter what time I go to bed; I wake up at the same time. If I manage to fall asleep again, I have disturbing dreams that are so vivid that I don’t even realize I’m dreaming until I wake up.

A friend of mine asked whether I’m having an extended meltdown—an interesting question. I don’t think I’m having a meltdown, at least not in the usual sense. If what is happening to me is a meltdown, it’s the combined result of all the years of driving myself, all the years of finding no kindness or understanding, all the years of trying so desperately to be what I cannot be, all the years of hating myself for not being what I cannot be. If I’m having a meltdown, it’s the result of all the stressors I’ve battled against throughout my life.

But really, what I’m going through feels more like extended grieving. And perhaps that’s all a meltdown really is: an explosion of grief over the pain of overload, the pain of being alone, the pain of being invisible, the pain of living in a world that is hard to bear.

There are many layers to this kind of grief, and the one I’m focusing on now is the grief of realizing that being autistic means being a member of a hugely misunderstood and maligned minority. I used to think I’d already traversed that territory by virtue of being a Jew, but the experience I’m having now is quite different from anything I’ve encountered in the past. True, I have experienced anti-Semitism, up close and personal, and I’ve met more than my fair share of people who think that they understand Jews because they’ve read the Bible or had a Jewish friend once. I still see plenty of anti-Semitism out there in the world, but for the most part, it doesn’t feel personal. Most people who know I’m Jewish don’t see me as a caricature. They don’t rely on stereotypes when thinking about me. Until recently, I lived my life as a very visible Jew—first wearing a kippah and tzitzis everywhere I went, and then later, wearing a headscarf and long skirts. If someone were going to engage in anti-Semitic craziness, I would have known about it by now. It just hasn’t happened. 

The experience of being autistic feels very different. Now that my autism diagnosis is on the table, and I’m making changes to integrate it into the life of my family, I feel like a walking stereotype. People in Bob’s family who have known me for years say things that are completely at odds with their experience of me—that is, when they’re not ignoring me altogether. All that has changed is that I have a diagnosis of autism. That’s all. When people got upset about Bob cancelling his trip, he got responses like the following:

• Does Rachel have as much empathy for you as you have for her?
• Often, it’s the caretaker who suffers more than the patient.
• You should put Rachel first, but not at the exclusion of your own children.
• If Rachel could do everything on her own before, why can’t she now?

If instead of receiving an Asperger’s diagnosis last November, I’d had a stroke and needed to relearn everything—how to go grocery shopping, how to be out in the world without becoming disoriented, how to speak without exhausting myself, how to reconstruct my self-image, how to reconfigure my life so that it works—I sincerely doubt that anyone would have questioned my ability to empathize, accused me of taking up too much of my husband’s time, or challenged me about whether I had actually lost the ability to do simple tasks. In fact, people would have been asking about how they could help.

However, I have a diagnosis of autism, and that makes me suspect. It means that instead of writing and offering supportive words, my relatives pull back and offer almost no direct support. Apart from the email I received from one of Bob’s cousins, the great shining exception to this pattern is my 93-year-old father-in-law. He is very interested in what I write on my blog and talks to me on the phone with great appreciation and affection. Perhaps it’s because we share so much in common. We were once both very high-functioning people out there in the world, seemingly in control of things, and making a Great Success Of It All. Now, he is very frail and can’t possibly do what he was able to do even five years ago. He has had to find new ways to see himself and to enjoy the world. Despite differences in age and neurology, we are going through parallel experiences, and somehow, we’ve been able to extend ourselves to each other.

Within the family, though, he is the exception. When I consider the range of responses I’ve gotten, from silence to anger to suspicion, I find myself realizing that I have now joined the ranks of the invisible, the misunderstood, the maligned, and the burdensome. This time, it’s personal. This time, it’s in the family. This time, despite the fact that I used to ride up front, I’ve been told to go to the back of the bus and stay there. What else does it mean when someone considers me a patient rather than a wife? What else does it mean when, instead of showing compassion for what I’ve lost, someone accuses me of choosing to become disabled? What else does it mean when people direct their words to Bob and not to me, as though talking to me is suddenly an uncomfortable (and therefore impossible) task? It all signals an unwillingness to encounter me as I really am and to show me the respect due to any human being. It means that I have second-class status. It means that I am expected to justify myself at every turn, to reassure people that I will not make them uncomfortable, and to let them know how sorry I am for what a burden I have placed on their shoulders.

Of course, I categorically reject all of this nonsense. I will not sit in the back of the bus, and if anyone expects me to, I will not negotiate. I will not justify myself. I will not explain myself. I will not apologize for myself. I will just get off the bus and walk, in my own direction, and at my own pace. Is it lonely? Hell, yes. But, as Frederick Douglass wrote:

I prefer to be true to myself, even at the hazard of incurring the ridicule of others, rather than to be false, and to incur my own abhorrence. 

© 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 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

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 first noticed that my father had trouble with eye contact when I was about ten years old. It was a Sunday, and my grandparents were visiting us. I was practicing a sonata on the piano, and my parents and grandparents had come over to the doorway to listen. I was well aware of their presence, and I felt proud that I had learned the piece so well.

When I was done, I looked over at my family. My mother and my grandparents were looking right at me, applauding and giving me compliments. My father, however, was looking everywhere except at me. He was shifting his stance, too, as though he were uncomfortable. He looked very much like a little boy who had been dropped into our livingroom and couldn’t figure out where he was or how to get home.

Of course, as a child, I took his responses very personally. I interpreted his lack of eye contact to mean that he didn’t care about my music. His shifting around seemed to mean that he was impatient to get away from me. I became very sad and discouraged. How could I reach him? I didn’t know.

Soon after, I saw that my father wasn’t making eye contact at the dinner table. I was excited about something at school and wanted to tell him all about it, but he didn’t look at me or give me any sort of response. It was almost as though he were defending against me. It’s possible that he had always been this way and that I hadn’t noticed it before, but once I saw it, my heart sank. I couldn’t stand feeling so much happiness and enthusiasm without being able to share it with him.

All of this happened 40 years ago, before anyone had the words to talk about what was going on. And so, my relationship with my father deterioriated. For many years, I tried to be different from him in every respect, and I’ve succeeded in many positive ways. But like my father, I have my own problems with eye contact. I can hold eye contact better than he could, but I never know how long I’m supposed to do it. And while I’m looking into someone’s eyes, it’s nearly impossible for me to articulate my thoughts or to listen to what the person is saying. I have to look away in order to think and to speak.

There is also something about being seen, about being held in someone’s gaze, that is deeply upsetting to me. Perhaps it’s the legacy of trying to appear normal all my life. The anxiety that someone might actually see my strange, awkward, eccentric self has always been profound. So I look away, thinking that somehow, I will become opaque—very much like a child who closes her eyes and thinks that other people can’t see her. Do I really think I’m hiding by looking at the ground? Perhaps. On the other hand, I am always upset when people can’t see me properly—when they think badly of me for no reason, or when they ignore me altogether. I’ve lived most of my life in this strange double bind—wanting desperately to be seen properly and wanting desperately to be invisible.

Unlike my father, I have no trouble holding eye contact with close family members. I can look into my husband’s eyes and into my daughter’s eyes, and listen to them at the same time. But I shy away from eye contact with most people, rather in the same way that I shy away from looking directly into the sun. I’m not just afraid of being seen. In fact, as I come out to more and more people about being an Aspie, I feel much less afraid of being seen.

What really terrifies me, more than anything else, is to look into the eyes of another human being and see that person’s soul. When I look into a person’s eyes, I have such a profound empathic experience of the person that it’s overwhelming. It’s not that I read the person’s individual emotions. It’s as though the person’s whole being is coming at me.

I’d never given this kind of experience much thought until I read a book called Love, Loss and Healing: A Woman’s Guide to Transforming Grief by Susan T. De Lone. The author had lost her husband of 27 years to cancer, and she wrote about watching him die. When he passed, she felt his soul all around her in his hospital room. His soul was so vast that it filled the room, but could not be contained by it. She saw in that moment how difficult it is to have a vast soul in a limited, human body.

This vastness of soul comes at me through a person’s eyes. It is never the vastness of a generic, undifferentiated soul but of a unique, complex, multi-layered soul with pain, with fear, with love, with everything that it means to be a human being. To look into a person’s eyes for a few seconds, and then to look elsewhere, is often the best I can do. Averting my eyes is my neurological, spiritual, and psychological shield.

I envy people who don’t need this kind of shield. Sometimes, I’d like to do what others do so easily. But I don’t consider my way of seeing to be a deficit. It’s simply a different kind of sight. In the social world, it doesn’t do me much good, but the universe, like the soul, is vast. I try to keep my eye on the big picture. It helps to keep things in perspective.

© 2009 by Rachel Cohen-Rottenberg

On Sunday, I spent the day researching and writing an article for our local monthly paper. I was writing about the Israeli-Palestinian conflict, so I spent several hours reading various articles and trying to put my ideas into a reasonable format.

By the end of the day, I was deep into a nightmare. I had read and written about the bloodshed in Gaza, the Holocaust, anti-Semitism, and the tragedy of the Israeli-Palestinian conflict. I saw everything from every angle. It just about paralyzed me. My whole nervous sytem was in an uproar. My mind kept saying, “Go work out, or go to a movie, or something, ” but I couldn’t figure out how to make the transition. How could I just go and work out when I’d been looking at endless war? I was literally sick to my stomach.

Finally, my husband said, “Let’s watch Sense and Sensibility on Masterpiece Classics tonight.” So we did, and it was just the right thing. It helped me calm down significantly. Nothing like watching 18th-century British aristocrats to take you well outside of your own life.

When I told the OT about this experience, she nearly started to cry. She said, “This is part of your sensitivity to the world. You can stand in everyone’s shoes. It’s a gift, but you have to balance it by reading about something positive and uplifting, too.”

I have read pieces by other Aspies about this gift, and it seems to be very much connected to our hyper-sensitivies in general.  I wonder if others of you have had this empathic experience and how it feels to you. I’ve been doing this type of thing all my life, but I’m only just beginning to understand what a powerful blow it is to my mind and body.

© 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

Two days before I was diagnosed with Asperger’s Syndrome, I emailed a friend and described the experience of sensory overload:

“I’m flooded constantly by other people’s energy, by sounds, visual images, everything. I can walk into a room and feel all the emotional energy in the room, but it’s completely undifferentiated. I’m unable to translate facial expressions or body language. I’m unable to filter anything out. Everything comes in, but my brain can’t parse it fast enough…I become very disoriented and overloaded. I say too much, or stumble over my words, or simply feel paralyzed and mute.”

I’ve found that I experience sensory overload for the following reasons:

Delayed processing. A conversation with even one person can overload me. Because I can’t read nonverbal cues and intuit what the person is thinking or feeling, I have to depend solely on the meanings of the words themselves. Therefore, I have to analyze the words and formulate a response very quickly. After awhile, I start to lose track of the conversation, and I have difficulty knowing what to say.

The resulting anxiety can cause me to transpose letters and sounds in my response. At other times, I simply can’t remember the words I want to use. Occasionally, I become hyperlexic and start to do a monologue. However, I’ve learned through painful and embarrassing experience not to take over the conversation. It exhausts me, and it’s not exactly a wonderful experience for the other person.

Fortunately, when I get more familiar with a person and we’ve had a number of interactions, I find it easier to have a conversation. Subconsciously, I’ve put together all the experiences I’ve had with the person, and I can use them to more quickly interpret what he or she says. If the person has a good sense of humor, all the better. I can joke around once I’m comfortable with someone, and if both of us can laugh, it relieves a great deal of stress.

Difficulty filtering sensory stimuli. If I’m in an environment in which there are too many voices and other sounds, I become overwhelmed very easily. Too many moving visuals, such as a great number of people, buses, and cars on a busy city street, also have this effect. When the two types of stimuli are combined, sensory overload happens almost immediately.

Too much empathy. Yes. That’s what I said: Too much empathy.

For many years, I’ve been aware that when I walk into a room full of people, I enter into the experience of everyone in the room. It’s as though all the emotions come right through me. When this happens, I become very disoriented, so much so that I have difficulty feeling or thinking at all. I have tried shielding with my intellect, but the energy it takes is very draining. Whether I shield or not, I become very emotionally and physically fatigued.

I’m still discovering strategies to avoid sensory overload, to respond to the early warning signs, and to take care of myself when it happens. In upcoming posts, I’ll say more about the ways I’m working to reduce the experience of sensory overload.

© 2009 by Rachel Cohen-Rottenberg