Archive for Women and AS

OMG! OMG! OMG! I’m Making a Friend!

I spent an hour today with my local Aspie counterpart. She’s so nice, and she enjoys so many of the things that I enjoy!

Before she came to my house, my worst fear was that we wouldn’t connect, and that the hour would pass very slowly. As it turned out, when she walked up to my porch and started talking to Bob and me, I liked her immediately. Between giving her a tour of the house and talking about all the stuff that was beautiful and interesting to both of us, the time flew by, and it was time for her to go. It felt as though she’d been here for just five minutes.

In our house, we have a small library (which is actually a wide hallway framed with bookshelves all around). She had mentioned how much she loves seeing people’s books and had wanted to spend some time looking at ours. We didn’t get to spend too much time in the library today, so the next time she comes over, I’m going to let her explore the books undisturbed by any narration about my house. I lent her a copy of the book I had written (about my elderly friend), and we hugged before she left. Hugs!

I was very keyed up about this visit beforehand. Then, once she got here, and I became aware how short a visit it would be, I felt rushed. When that happens, I sometimes have a wee bit of trouble finding the words I want to say. So, I’m not sure if what I wanted to say made its way out of my mouth in any kind of coherent fashion, but who cares? We had fun.

To think that I had been feeling so insecure about meeting her! Last night, I was feeling that whatever social skills I used to have were NT emulation skills, and that they were gone. What would I use instead? I talked with Bob about my last seven years of nearly unabated social failure, all of which seemed to begin around the same time that my relationship with him started. I used to think that I hadn’t made any friends in the last place we lived because people had blamed me for Bob’s departure from the synagogue. I was very angry about it for a long time. All of those social failures have been psyching me out in the present, even in a new town in which people have been welcoming and friendly. I didn’t know whether I could make a friend anymore. I didn’t know whether I knew how, or whether I had the courage to try.

But now, I’m seeing my “social failures” in a whole new light. I’m realizing that the reason for my social difficulties was that my NT emulation skills went “bye-bye” when Bob and I got together seven years ago. For most of my adult life, I’d been in relationships in which I’d needed to somehow “improve.” I was always the one with the “issues,” the one who was never quite right, the one whose ”stuff” was always getting in the way. When I got together with Bob, I found someone who loves me just as I am. In fact, Bob loves things about me that had driven other people crazy.

So, when we first got together, I started to relax and to take another look at myself. I started to think, “Hey, I’m really all right just as I am!” And then, in my Aspie innocence, I assumed that the whole world would be equally excited at this unforeseen and utterly miraculous transformation. I was loved! I was fine! And I was ready to show the world who I really was! In my excitement, I started acting like an honest, straightforward, tell-it-like-it-is Aspie—even before I knew I was an Aspie! I mean, how brilliant is THAT? 

Not very. The results in the neuro-typical world were not good. Not good at all. My life became a constant series of culture clashes, as though I were speaking French in a country where no one had ever heard of France. But French was so natural to me. What was wrong with these people?

Oops.

I’ve finally realized that because of my relationship with Bob, my NT emulation skills have been absent for several years without my really knowing it. Much of that time, I’ve been leaping into all sorts of situations, trying to do the NT dance, and ending up feeling alone and alienated. Once I got diagnosed, I began to worry about all the problems I’d have once I gave up all pretense of being NT. Until last night, it hadn’t occurred to me that my NT emulation skills have been at the bottom of a landfill in Franklin County for several years.

And yet, miracle of miracles, my relationship with Bob continues to grow and thrive. What does that tell me? Can I actually be who I am? Can I actually make friends? Can I actually feel like a human being again?

I think so. I hope so.

© 2009 by Rachel Cohen-Rottenberg

Places to Go and People to See

As much as I love my loft and my house, I am feeling increasingly frustrated with not being able to spend much time out in the world. I like being out and about, and I also like being able to go places with Bob. Often, I want nothing more than to be at home for days at a time, living in blissful solitude, but sometimes, I wouldn’t mind an hour or two in the beautiful, interesting, friendly town in which I live.

As always, my primary barrier to going out into the world is sound. Auditory overload can happen immediately if the environment is too noisy. It’s easy enough to stay away from places that I know will be too much for me (like the bead store with the Very Loud Music), but it’s harder when I know that the environment might go from quiet to noisy while I’m there. I’d love to go out to eat at a restaurant, but even if it’s quiet when I get there, I can’t count on it staying that way. Any loud noise feels like an assault on my nervous system—an assault I can’t see coming—and when it happens, the result is intense and immediate.

Needless to say, this problem has been causing me some anxiety about going out, and it’s been difficult for me to strategize my way around it. However, Bob and I have come up with an idea. We’re putting together a list of a) places that we can definitely go, b) places that we will need to check out to see whether they will work for us, and c) places we absolutely cannot go under any circumstances. For the purposes of posting the list on my blog, I’m leaving out the names of local businesses because I don’t want to pan them; lots of people like going to them, and the local economy needs all the help it can get right now. So, here is the list:

Places We Can Definitely Go
The library
Small, local bookstores
Quiet neighborhood streets (for walking)
A small, discount grocery store in town
A drive-in movie

Places to Try
The local movie theatre
The art supplies store
The stationary store
The local Thai and Indian restaurants
The co-op (in the early morning hours)
The shop that sells Indian textiles

Places That are Definitely Off Limits
The bead store
Restaurants with TVs and/or bars
Shops, cafes, or restaurants with loud music or crowded eating areas
The local pharmacy (a very busy, crowded, noisy place)

My biggest challenge at the moment is figuring out how to try places that might work without getting overloaded. It may not be possible to avoid overload when we’re working on our Places to Try list, so we will have to schedule these attempts when I have a couple of days to recover. We also have to make a commitment to leaving immediately if the situation becomes aversive. I find it very hard to leave when I’m in a situation that seems to be working and then suddenly stops working: the music gets too loud, children get tired and start crying, a noisy party of eight walks in halfway through my dinner, and so on. I get stubborn and refuse to believe that the situation is not going to be salvageable. Beneath the stubbornness are sadness and disappointment: I was having a good time and now, through no fault of my own, I have to leave. But I can’t let the sadness and disappointment be obstacles anymore or I’ll be like a scared rabbit, unable to move.

As for going to the movie theatre, there are two issues: one is the sheer volume of the music and dialogue, and the other is the issue of people talking during the movie. I cannot stand it when people talk during a movie. So, I’m figuring that if Bob and I sit in the very back row of the theatre (where people don’t usually sit), I won’t able to hear people talking because they will be in front of me. It’s worth a try to see what happens.

I’ve also figured out more strategies about reducing sound when I’m out. In addition to my Sonic Defender ear plugs, I’ve gotten a noise-reduction headset at the local hardware store. It’s not electronic; it’s something that people wear when running power tools or mowing the lawn. With the earplugs, it works pretty well. I look weird wearing it out in the world, but given that when I’m walking, I really want to be left alone, the headset is an especially good idea. It also might work for going to the movies.

Along with wanting to go places, I’ve also found myself wanting to be around people. Of course, determining who to hang out with is even harder than determining where I can go. People who do not know that I’m autistic can easily overload me. A couple of weeks ago, I decided to start the process of figuring out how to be around people by finding an autism-literate therapist in town. Lo and behold, I’ve already succeeded! His office is just a ten-minute walk from my house, and my insurance will pay for the sessions. Halleluyah.

Bob and I went to see the therapist on Friday, and I felt very comfortable with him. The session was great. He asked whether eye contact was difficult for me. When I said yes, he said something like, “I want to thank you for making eye contact with me, knowing how hard it is for you. You don’t have to make eye contact if you’d rather not.” That was a good sign. When I told him how tired I was getting by talking back and forth, he said, “If you decide to come in to see me again, feel free to write down beforehand what’s going on for you and bring it to the session. Then, I’ll read it, and we won’t have to talk much if you don’t want to.” That was another good sign.

Finally, he asked about my friends. I told him that I have friends, though not in town, and that I get so easily overloaded that I resist getting together with them, even though I know they love and support me. He suggested that I talk to my friends and tell them what I need so that I can make space in the friendship to be myself and to take care of my sensory needs. What a concept! I hardly know how to begin that conversation, so I’m hoping that he can give me some guidance and support on the whole subject.

Speaking of friends, I’m meeting my new potential local Aspie friend tomorrow, and I’m alternately very excited and very nervous. She’s going to come over to my house for an hour. I very deliberately avoided doing what I really wanted to do, which was to say, “Come over for the entire afternoon!” I need to learn pacing and to set time limits with my neurology in mind. What my head and my heart want to do is one thing; what my nervous system can do is another.

Anyway, she’ll come over tomorrow, I’ll give her a tour of the house (all first-time guests get a free tour of the house), and then we’ll play cards.  We’ve been corresponding by email for a couple of weeks, so we know what our sensitivities are, and what works and what doesn’t work for each of us. On that basis alone, I’m feeling very hopeful about the visit. After all, how many opportunities do I get to say, “I can’t listen to music and talk at the same time” without feeling like I’m either freaky or a bore? I can say it to my daughter and to my husband, and now I’ve been able to say it to another Aspie in town. It’s a good start.

While I’ve been getting ready for the visit, I’ve been thinking more on the subject of friendship, wondering why I haven’t made new friends for several years. I’ve been feeling pretty psyched out by that fact, and not surprisingly, my self-confidence as far as friends go has been in negative numbers for awhile. But I think I’m beginning to get it figured out. Part of the problem is that I can’t do the things that friends usually do together: talk for a couple of hours, go to concerts, parties, restaurants, dances, cafes, etc. Between not being able to a) talk for a couple of hours without getting worn out and b) go to many places without getting overloaded, I just haven’t been able to figure out what I would actually do with a friend were I to make one.

It’s getting a little clearer now. I can get together with a friend and play a game: a card game, Scrabble, anything will do. I can go to a bookstore with a friend and hang out without the pressure of having to interact. I can also just invite a friend to my house and do some kind of  “parallel play.” Just having someone here who might like to read while I’m writing could be very nice. Of course, I will need to find other like-minded people for these kinds of activities, but at least I’m starting to define what I can actually do, rather than what I can’t do.

As far as tomorrow goes, send out good thoughts. I’m really proud of myself for not having bailed out on the whole thing, which is my usual response to anxiety. Right now, I don’t care whether I’m feeling happy or sad, tired or rested, confident or insecure. I’m going to meet this woman, be myself, and welcome her into my home!

© 2009 by Rachel Cohen-Rottenberg

Activities of Interest in the World of 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

My Article in the Local Newspaper

My article on autism was published in our local monthly paper at the beginning of July, but it didn’t go live on the website until today. Here’s the link:

http://www.commonsnews.org/694/

Enjoy!

Rachel

© 2009 by Rachel Cohen-Rottenberg

A Critique of the Empathizing-Systemizing (E-S) Theory of Autism

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)

Sensory systemizing Tapping surfaces, or letting sand run through one’s fingers 

Insisting on the same foods each day

Motoric systemizing  Spinning round and round, or rocking back and forth

Learning knitting patterns or a tennis technique

Collectible systemizing  Collecting leaves or football stickers

Making lists and catalogues

Numerical systemizing  Obsessions with calendars or train timetables

Solving math problems

Motion systemizing  Watching washing machines spin round and round

Analyzing exactly when a specific event occurs in a repeating cycle

Spatial systemizing       Obsessions with routes

Developing drawing techniques

Environmental systemizing  Insisting on toy bricks being lined up in an invariant order

Insisting that nothing is moved from its usual position in the room

Social systemizing  Saying the first half of a phrase or sentence and waiting for the other person to complete it

Insisting on playing the same game whenever a child comes to play

Natural systemizing  Asking over and over again what the weather will be today

Learning the Latin names of every plant and their optimal growing conditions

Mechanical systemizing  Learning to operate the VCR

Fixing bicycles or taking apart gadgets and reassembling them

Vocal/auditory/verbal systemizing Echoing sounds

Collecting words and word meanings

Systemizing action sequences Watching the same video over and over again

Analyzing dance techniques

Musical systemizing Playing a tune on an instrument over and over again

Analyzing the musical structure of a song             

 

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

A Critique of the Extreme-Male-Brain Theory of Autism

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

Aspie Women: Saving Our Own Lives

I just saw a comment today from Saja, a new poster on this blog, and it was so moving to me that I want to write some words in response. In the Every Aspie is a Working Aspie thread, she writes about finding herself at a fork in the road:

“I am at an impasse, at 42, in which I can either decide to drop ‘passing’ in a big way, or die-–literally. I cannot continue to live the rest of my life the way I’ve lived it up to this point, rewarding as that has been. I did what I most craved as an awkward little girl: I learned how to fit in with the rest of the world. I’m socially adept. But the cost; oh, the cost. There’s nothing left over for the real me, the inner me. And that *has* to change, to save my life. Literally.”

At 42, I felt as she does. I had gotten what I had always wanted. I had learned to fit in, to succeed, to become a competent, self-supporting, professional woman. But inside, my light was dying out. I’ve heard it said that Aspie women can seem very competent on the outside, while inside, they are dying. That was me.

For a long time, I’ve been wanting to write about what saved me. Every woman’s story of coming back from the brink is different. Here is mine:

Nearly nine years ago, when I was 42, I met Bob, who is now my husband. He was the spiritual leader at a synagogue that I had decided to try because someone told me it was friendly to kids. At the time, I was married, as was Bob. My husband was healthy and well, but Bob’s wife was dying. When he and I met, she had just decided to stop going out into the world, so I never got to meet her in person. Bob and I became friends, and he invited me to help lead services at the synagogue.

That’s the story from the outside. But something happened to me when I met Bob that completely changed me. I felt a love for him that I had never felt before for anyone. I kept trying to put it in some familiar little box and keep it sealed up, but it never worked. It was very powerful. All I knew was that it didn’t originate in me. I want to say that it came from G-d, but that’s not quite right. It didn’t come from G-d. It was like being in G-d, in the midst of a love that embraces everything and everyone.

I’m not sure what I believe about G-d, even now. I’m not sure that I have belief. All I have is an experience that I refer to as G-d. I’m not sure that there are any words that can describe it, though. All I know is that it wasn’t “falling in love” in the usual sense. That would have been easier.

I don’t know how I managed to hold it together that first year that we knew each other. I didn’t know what was happening to me or where it was leading. It was easier while Bob’s wife was still alive, because the boundaries were very clear. She passed away within the year, and then I nearly fell apart. I thought I was crazy. What I knew for certain was that my marriage was done. It hadn’t failed. It was just done. We’d gone as far as we could go, and there just wasn’t anymore left.

It was very sad and very wrenching to watch everything come tumbling down. The synagogue community was not exactly thrilled about the new me, and when Bob and I finally decided to be together, we couldn’t be there anymore. But in the midst of all the wreckage of what had been, my inner light began to shine. It became brighter and stronger. I don’t know what would have happened to me if it had died out altogether. I’m not sure I would have survived it.

Bob and I have now been married for almost 6 1/2 years. He always tells me that I saved his life. He says that he can’t imagine what might have become of him if I hadn’t shown up. But I don’t think I saved his life. I think the larger love saved his life, as it saved mine.

© 2009 by Rachel Cohen-Rottenberg

The Words I Most Needed to Hear

Some momentous personal things have occurred since last Friday. It’s taken me awhile to know how to express what I feel about them. Although I woke up with a bad cold today, I’m feeling fairly lucid at the moment, so I thought I’d start describing the happenings.

Last Thursday, I made a big mistake that only I could see: I tried to do two things in the outside world in a single day. And worse than that, I tried to do them consecutively.

Before I left for my volunteer job last Thursday, my husband asked whether I could stop at the co-op after work to get him some more homeopathic medicine for his cold. I told him I’d try, and I felt the way I always feel about these requests: Totally Lousy. Lousy because it’s so hard for me to go to two different places in the same day, and lousy because I wish I could just say, “Sure, honey, no problem.”

In any case, I went to work, and then I went to the co-op. Outside, there were some really nice plants, so I bought a bunch, and then I went into the store and bought some medicine for my husband. Luckily, the store was quiet, so I didn’t feel completely overwhelmed. When I came home, I was tired, but that’s pretty normal after work, so I rested. The remainder of the day went along fine, and I felt great. 

Then, Friday came, and I had my first meltdown since my diagnosis in November. To understand why, you’ll need to understand that every Friday, we get ready for Shabbos (our Sabbath), which includes the following tasks:

1. Sweeping up the house (me)
2. De-cluttering the house (me)
3. Emptying the wastebaskets and recycling (me)
4. Buying the food for dinner (my husband)
5. Cleaning the bathroom (my husband)
6. Setting the table (my husband)
7. Cooking the food (my husband)

This past Friday, though, my husband was sick, and I started worrying about having to take on some of his tasks. That was the beginning of the meltdown: the worry. I knew I couldn’t do the food shopping myself and get the house cleaned up, so I offered to go food shopping with him. I figured that it would help us both. So that was the plan.

Nice plan. Except that then I had to figure out in what order to a) clean the house, b) get a shopping list together, and c) go to the co-op. But I couldn’t even get to the point of sequencing. Each task felt absolutely monumental. Like. Turning. A. Barge.

So, I started with what was familiar. I started sweeping. And as I started sweeping, I noticed that I was becoming more and more sensitized about how hard it is. I’m fine with taking the broom and moving it back and forth on the floor. But then, there’s having to pick it up and pull the dust bunnies out of it; somehow, having the broom upside down makes me dizzy. And then, of course, there’s having to bend down with the dustpan and sweep the dust bunnies into it. Serious gravitational insecurity moment. Just thinking about it makes me anxious. And then, the worst part is sweeping under the bed. Arghh. I have to get down on the floor on my stomach and kind of shove the broom here and there till I get all the dust balls. When I’m all done, I am one dizzy, disoriented human being.

When I realized how hard all this was going to be, I started to get really agitated. And when I get agitated, I start thinking really helpful thoughts, like, “Hey, Rachel, if you’re so smart, how come sweeping the floors is so hard, huh? Huh? HUH?” As my self-esteem started going down, my irritability started going up, until I was stomping around and angry at everything. When my husband committed the unforgiveable sin of moving the recyclables to the garage, the recyclables that I had planned to move myself, thank you very much, I just about had a cow. Fortunately, I was able to recover some sense of time and space, and say, “It’s not you I’m angry at. It’s me. It’s me. It’s me.”

Ultimately, I just broke down into inconsolable sobbing. The more I thought about how hard it was to sweep the floor, the more I thought that writing up a shopping list was beyond my skills as a human being. How could I possibly transition from one task to another in the state I was in? Especially when writing a shopping list required time and concentration that seemed impossible to locate at that moment. On a good day, each task feels like a big challenge. On the day following one in which I had pushed my limits, each task seemed beyond my reach.

Hubby tried to give me some comfort, but I just kept saying, “Everything feels so incredibly hard. Why does it feel that way? Why can’t I just sweep the room without getting dizzy? Why can’t I just make a food list and be done with it? I can’t stand it.”

And then he said the words that I’ve been waiting to hear all my life:

“It’s not your fault.”

I melted. What an incredible relief. It’s not my fault. I’m doing the best I can, and then some. I have to accept myself as I am. I need to stop apologizing for what I can’t do. It’s not my fault.

Wow.

Okay, hubby loves me as I am. He sees me clearly, and he loves me as I am. That’s very good. Cross that worry off my list. Done. I got it together to make the food list and go shopping. My husband even swept under the bed and swept up everything into the dustpan. We were both tired out, but we were in it together, and that put me in a much better frame of mind.

But then, on the heels of this major piece of wonderfulness, came the second worry: I don’t do enough for my daughter. I can’t cook more than a one-course meal because the sequencing is too hard. I can’t go to her concerts at school because the sensory overload is immediate. I didn’t go to the paintball place for her 8th birthday. And on and on like that.

I was right back in the soup. I felt like writing her a letter, apologizing for all the things I haven’t been able to do over the course of 16 years. I know, it’s a little much, but that’s how I was feeling. I decided that when she came back from her class trip, I’d talk with her about it. I’d try to explain why I am the way I am. She knows about the AS and SPD, but we haven’t talked about its impact a lot lately.

So, I was getting ready for this conversation when Mother’s Day came, and I thought, great, we’ll have our talk today, when everyone is in a good mood. And then, before I got the chance to initiate even the merest hint of a beginning of a conversation, my wonderful, loving, utterly fantastic daughter gave me a Mother’s Day card she had made.

And the card said, “Thank you for being such an awesome mom. Thank you for everything you’ve done for me. I love you so much.”

I couldn’t believe it. It was perfect. I said, “That’s so beautiful, Ash, and so much what I needed to hear.” And then my big strong teenager gave her little Jewish mom a great big hug.

I melted. Again.

So, in the course of 72 hours, I got to hear the words I most needed to hear:

My challenges and disabilities are not my fault.

I am an awesome mom.

It’s no coincidence that today, I’ve finally got this cold that’s been coming on and going away for months now, over and over. Until today, I’d start to feel sick, and then a few days later, it would turn into nothing. This would happen in two-week intervals, over and over and over.

Now that I’ve had these two weighty pieces of worry taken off my body and soul, I can get sick like a regular person, get over it, and go on with my life. That sounds pretty good, don’t you think? ;-)

© 2009 by Rachel Cohen-Rottenberg

Happy Mother’s Day!

To all you moms out there: Happy Mother’s Day! I hope you have a fun and wonderful day. 

In honor of Mother’s Day, I’m posting some pictures of the person who made me a mom: my bright and beautiful daughter Ashlynne. All of the photos were taken last week, during a class trip to New York City.

On the train from Springfield:

 

 

 

 

 

 



On the ferry in NY:

 

 

 

 

 

 




At the Museum of Modern Art, looking like part of the artwork:

 

 

 

 

 






Just being bright and joyful:

 

 

 

 

 

 

 





Our plan for today is to go to one of my favorite kinds of places in the world: a perennial farm. I’ll get some new flowers, vegetable plants, and herbs. If the weather cooperates, I’ll get to do some planting in the garden, too.

Be well, everybody! 

© 2009 by Rachel Cohen-Rottenberg

Parenting, Grieving, and Letting Go

I’ve been doing a lot of grieving lately. I’ve been missing my daughter’s childhood terribly. I’m not sure whether I’m missing the child she once was, or the person I once was, or both. I’m not sure there’s a whole lot of difference. Motherhood changed me from who I was before.

From the time I was in my early 20s, I knew that I wanted to be a mom. I didn’t have Ashlynne until I was 34, and then I fell in love with the whole thing. It wasn’t difficult. She was an amazingly easy baby. She even woke up giggling every morning. I kid you not. Giggling.

When I was on maternity leave, we’d go out to the park whenever the sun was out, and then she’d take a nap. Her dad would call from work to see how things were going. I’d tell him that Ashlynne was napping and that I was really exhausted. He’d ask me why I wasn’t catching up on sleep. I’d say, “I can’t. I’m just sitting here, watching her. She’s so incredibly beautiful that I can’t take my eyes off her.”

It seemed as though it would last forever. Of course, people warned me. “Enjoy it now,” they’d say, “because the time just flies by.” Rest assured that while I politely thanked them for their wisdom, I was smugly thinking, “They’re just regretting the fact that they didn’t pay attention to their children. My daughter’s childhood will not fly by. I will be paying attention.”

And I was paying attention. I was doing crafts and letting her use face paint on her tummy. I was homeschooling her, encouraging her creativity and her independence of mind. I was working at home as a writer so that she could see me whenever she wanted. I took pictures of just about everything she did. I kept journals. I kept every piece of artwork. I was determined to be there for every moment I could. And it just kept going and going and going and going.

But now, suddenly, it’s almost over. She’s driving. My car. On the highway. The fact that she only has her learner’s permit, and that my husband is always in the car when she drives, does not detract from how old that makes me feel. And how strangely unnecessary.

Oh, yes, I know. I’m still necessary. I’m her mom. I help her with her problems (the ones she tells me about). I listen. I empathize. I give good advice. I let her drive my car. (Did I mention that?) I read the awesome creative writing she does, and I look at the amazing photographs she takes. I give her money for the movies. I used to ask her whether she needed help with her homework, but I quit doing that last year. She told me that she was grown-up enough to take care of it herself. And she takes care of it just fine.

When did it all begin to wind down? The first indicator I had was the day last year that she said to me, “Mom, there are things about my life you do not know.” Once I got over the shock, I said, “Yes, you’re a teenager, and you deserve some privacy.” I even believed it.

Does that make me a good mom? Yes, it does. Give me an award and I’ll frame it.

But it won’t stop time.

And now, my daughter has crossed over from childhood to young adulthood. My friend Sue saw her a few weeks ago, and she cried when she saw what a beautiful young woman she’s become. When Sue and I first met, our daughters were 9. Now they’re 16. How is that possible?

I don’t know what to do with myself. I mean, I do lots of things. I blog. I do my community service work. I keep the house together. I knit. I do my art. I’ve relearned Torah cantillation. I see my OT. Now that the spring is here, I’m gardening, which I love. In fact, I spent much of yesterday digging and weeding and transplanting.

But everything is different now. Everything I did before was in the service of being Ashlynne’s mother. It gave me a focusspiritually, emotionally, physically, and intellectually. When Ashlynne was born, I thought, “When she’s 18, I’ll be 52. That’s a long time away. I’ll be old by then.” Now I’m almost 51. No more babies. No more intensive child-raising. No going back. Only forward. But to where?

I can’t work anymore. There is no new career. For most of my life, I powered through my sensory overload, anxiety, and general Aspie confusion with all the willpower and tenacity at my disposal. I worked full-time, homeschooled, and did enough honest labor for three or four people. My last manager used to joke that when I had the flu, I worked at normal human speed.

I worked from the time I was 17 until I was 47. And now, I can’t work anymore. I lived in defiance of my neurology for 50 years. I can’t do it anymore. My husband says I’m like the Road Runner in the cartoon. Everything was fine, even when he ran himself right off a cliff. Even then, he could still run in mid-air. Until he looked down.

When I discovered my Asperger’s, I looked down. It’s a good thing I did. But now, all of a sudden, I’m an Aspie with a young woman for a daughter. How did that happen?

These days, I seem to vacillate between hope and grief. Yesterday, I was sitting on my front porch, and the little girl who lives across the street came over. Because our family is new to the neighborhood, we’re just getting to know our neighbors. She introduced herself and told me she was eight years old. We talked a little, and then she skipped down the street with her dog. It was a wonderful, reassuring moment. There are still little kids around. They’ll come over and talk a bit. I’m still in the flow of life.

And then I realized that half of Ashlynne’s life ago, she was eight, skipping down the street like that little girl. I got really teary, just as I am right now.

I’m certain this grieving is all very normal. Our kids are only on loan to us, so the grieving is inevitable.

Is it worth it? Yes, even with the grieving, it’s worth it. All of it.

© 2009 by Rachel Cohen-Rottenberg