Journeys with Autism

You might remember that, a few weeks back, I wrote a post called Creating a Support Network. I had written down all the tasks that I needed help doing, and Bob and I were going to cobble together a list of people who could help me do them. Over the course of the month, however, we’ve realized that while we can enlist the help of others for regular, practical tasks (such as housecleaning and carpooling), we’re going to have difficulty finding help for other, less predictable tasks:

• If a task involves advocacy, finding someone is next to impossible; we live in a rural area, and the chances of finding someone sufficiently knowledgeable about adult autism are slim.
  
• If a task needs doing only once in a while, it will be very hard to find someone to be “on call” to do it.

So, we’ve shifted gears. We have someone cleaning our house once a week, and Bob is going to take care of making sure that the carpooling goes smoothly until Ashlynne gets her license. As for the rest of the tasks, I am experimenting with ways to do them comfortably, and if I can’t find a way, the task will have to go away.

Our Strategy List
Here’s how our strategy list looked as of Sunday night:

Resolved issues

1. Housecleaning.
2. Understanding home and non-profit financials.
3. Food shopping: Rachel shops at the co-op once a week for herself and Ashlynne.
4. Banking: Rachel has begun the process of transferring funds to our local bank.

Tasks for Rachel to try on her own (limiting each attempt to one per day)

1. Going to the therapist’s office.
2. Going to the stationary store, art supplies store, and other relatively quiet places to do errands.
3. Making deposits at the bank.
4. Bringing envelopes or parcels to the post office.
5. Picking up prescriptions and other items at the pharmacy.
6. Moving more funds to our local bank.
7. Finding out what tasks she can do online.

Issues that Bob will work to resolve

1.   Getting Ashlynne where she needs to go until she gets her license.
2.   Finding people in his network of friends to pick up prescriptions, drive, or do other “spur-of-the-moment” tasks when he is ill.
3.   Making an appointment with an attorney to create Advance Directives for Healthcare for both of us.

Issues on which we will improvise

1. Cooking meals. Bob does not mind cooking meals when he is well. For times that he is ill or out of town, we will begin to create an emergency cupboard of canned soup, macaroni and cheese, herbal tea, over-the-counter medication, and other items that will allow Rachel to make simple meals and have symptom-relief medicines available.

2. Accompanying Rachel to doctor or hospital appointments and advocating for her. No one other than Bob knows Rachel’s autism well enough to be a proper advocate. When Bob can be there, he will. When he can’t, Rachel will write a letter to the doctor or hospital ahead of time, stating her needs as an autistic patient (a quiet room in which to wait, sensitivity regarding sensory issues, and so on).

3. Making telephone calls. Bob will make these when he can. When he is not available, Rachel will make them only if necessary, and only so long as she gives herself sufficient time to prepare and to recover.

Adaptive Measures
I now have three—yes, three!—Peltor noise-reduction headsets:

• My original Peltor Optime 101 headset, with a Noise Reduction Rating of 27. I use this one at home when loud noises are coming in from the outside world.
• My new Peltor Optime PTL (Push to Listen) headset, with a Noise Reduction Rating of 25. I use this one for working at the thrift store.
• My even newer Peltor Ultimate 10 headset, in blue, with a Noise Reduction Rating of 30 (the highest for a Peltor headset, as far as I know). I use this one for walks and errands in the outside world.

I also have a number of “I can’t hear you” cards in my purse, explaining why I’m wearing a big headset, why I’m in the store (or bank or post office), and how I intend to pay for everything. If I’m going to become more self-sufficient, I’m going to have to continue my strategy of encountering the outside world as though I am deaf and mute.

I gotta tell ya, I’m lovin’ every minute of it. Well, almost.

People Have to Listen to Loud Music in a Pharmacy WHY?
Yesterday, I decided to try going to the local pharmacy and buying some supplies for our “emergency cupboard.” I knew that I might encounter an itty-bitty problem with LOUD MUSIC THERE, SO I WORE MY PELTOR ULTIMATE 10 HEADSET.

This pharmacy is unlike any that I have ever encountered. The number of employees and pharmacists present at any given time is almost always higher than the number of actual customers in the store. Most of the employees are behind a series of counters at the back, and they spend a great deal of their time on the telephone, taking orders for prescriptions. They all sit, stand, and move around in very close proximity to one another, all talking at the same time, all talking rather loudly, and all listening to very loud rock ‘n roll. The truly amazing thing about the people, though, is that when you come up to the counter, they are very focused, very friendly, and very helpful. Whenever I’ve gone there to fill a prescription, I’ve been so entranced by the mystery of how these people can actually work under these conditions and enjoy themselves that I forget what’s happening to my senses until I get home and stagger in the door.

So, when I set out yesterday afternoon, I knew my adventure might not last long, and as you might have surmised, it didn’t. The walk was wonderful. I could hear very little of what was going on around me. Then, I walked into the pharmacy. I was there for about five minutes, and I had put about five items into my basket, when I couldn’t stand hearing the music anymore. I felt as though someone were screaming right into my ear. Even with my headset, I felt like I was being assaulted by sound. I simply couldn’t concentrate. I finally just put my basket down and went home.

Once I had recovered from the fiasco at the pharmacy, I decided to order all the items online. I found a site that offers free delivery if your order is over a certain amount, and I got everything on my list. Then, I called my insurance company (yes, myself!) and arranged to have my regular prescriptions mailed to my house. If I need some other prescription once in a while, my husband, or my daughter, or a neighbor, or some other nice person will go and get it for me.

One task resolved. Onto the next one!

© 2009 by Rachel Cohen-Rottenberg

I’ve been thinking lately about the difficulties of having a misunderstood, invisible condition. Many people do not understand how autistic people see the world, partly because of the misinformation out there, and partly because our condition manifests itself largely in the privacy of our own brains. Certainly, we do things people can see, like stimming, or melting down, or being out of sync in a conversation, but most people don’t understand what underlies our behavior.

On Tuesday, I had a difficult experience in a store in my town. Ashlynne and I had decided to go out for some mother-daughter time, and at about one o’clock, we set off for the bead store. Usually, I wear my sunglasses and Sonic Defender earplugs when I go out anywhere, but in my excitement about going out on the town with Ashlynne, I forgot.

We had chosen to go to the bead store because the place is very spacious, and I thought I’d look for some interesting beads for my art projects. Unfortunately, I’d forgotten that they play Very Loud Music there. It was so loud that when we walked in, I immediately stopped and said to Ashlynne, “Wait, wait! I need my earplugs! Now!” Fortunately, I keep an extra pair in my bag, but in my agitation, I couldn’t find them. Ashlynne offered to hold the bag open, and I finally located them. My hands were shaking, but I got the earplugs in.

The music was so loud that I could still hear it at a high volume, so I asked Ashlynne to ask the man at the counter to turn it down. He did. A little. I could still hear the music, but it was at a fairly reasonable volume, so I kept looking for beads. However, I noticed that I had begun to feel afraid. I stopped myself for a moment and asked myself whether I was afraid of what might happen (i.e. that I would become painfully overloaded before I got out of there) or whether I was afraid of what was happening at that very moment. I decided that the fear was more about the future than the present, so I kept on. I wanted to see how the experiment would work out.

Listening to music and talking to someone at the same time is generally impossible for me. Listening to music and and trying to think straight about anything is almost as big a challenge, and about ten minutes after entering the store, I realized that I’d reached my limit. I just wanted to cry. Why do people have to play such loud music? Why is that fun? If the place were quiet, I could have spent hours there. But it wasn’t quiet, so I took the beads I had found and went up to the counter to pay for them—at which point the man at the counter said, “Didn’t you mark down how much each set of beads costs?” Oh. My. G-d.

I said, “No, I didn’t see a pad and pencil for that,” so he gave me one. And then, I had to go back around this big store looking for these tiny beads, and I thought I was just going to break down and weep. I felt so dumb, so weak, so useless, so victimized. I know it’s just neurology, but that’s how I felt. With Ashlynne’s help, I got all the beads priced and paid for. When we finally got outside, I said to her, “I would really like to salvage this afternoon, so would you just hang out with me a bit until I calm down?”

She said, “Sure, mom, no problem.” So I stood outside a quieter place and did joint compressions for a few minutes. It really helped. From there, we decided to go to the thrift store which, by comparison, was extremely quiet. We had a really good time there. I got a tank top, some trinkets for my art, and a couple of shawls that I can use for tablecloths. I said hi to a couple of people I know there, and it felt good to see them. As places go, the thrift store is the friendliest place in town for autistic me. Even before they knew I was autistic, the staff always encouraged me to choose the tasks I wanted to do. I’d like to go back to working there an hour a week, if I can manage it. I don’t think I could commit to coming in on the same day each week, but I doubt very much that it would be a problem for the staff.

Anyway, after the whole experience at the bead store, I began to think about what the world would look like if people had to take into account our disabilities. What if every public building and private business had to make its environment accessible for autistic people? If I could create such a law in my local community, here is how the law would read:

To make our town accessible and welcoming for autistic people, all citizens, public buildings, and private businesses must adhere to the following rules:

1. All public buildings and private businesses are prohibited from having background music, and all TVs in said locations must be turned off. Using an iPod, portable radio, or other device with headphones is an acceptable alternative for individuals who wish to hear music or listen to the radio while outside their homes, so long as the volume is not turned up so high as to allow another person to hear it.

2. Aisles in any building must be wide enough so that two people can occupy opposite sides of an aisle without inadvertently touching each other.

3. When in a public building or private business, people must use their inside voices and refrain from small talk. When outdoors, people must refrain from loud cursing, the uttering of racial and ethnic slurs, and other forms of aggressive verbal behavior.

4. Cell phones are hereby banned from all buildings within the town limits, with the exception of each person’s private domicile or car (so long as said car is not moving and the windows are closed). If one is not within a reasonable distance of one’s home or car, using a cell phone is permissible in a public bathroom, so long as the call is limited to not more than two minutes.

5. Each place of business must post the food smells or other fragrances one may encounter upon entering said business.

6. If any resident wishes to run a lawn-mower, chainsaw, or other power tool, he or she must give at least one week’s notice to allow his or her autistic neighbors to make plans that do not include sitting on their front porches and enjoying the afternoon.

7. Every restaurant must have a quiet zone in which autistic people can sit and eat in peace.

8. Every professional must make every attempt to see patients and clients on time. If said professional is running late, he or she (or a member of his or her staff) must contact the patients or clients and apprise them of that fact.

9. Every building must have a separate, quiet waiting room for autistic people.

10. No autistic person shall be detained or harassed for stimming in public.

I’m sure that there are many more clauses one could add to such a law, but these ten points would be a very good beginning.

© 2009 by Rachel Cohen-Rottenberg

When I first got my Asperger’s diagnosis, I was so relieved. I was able to look back over the course of my life, from the distant past to recent events, and see the common thread linking everything. For awhile, it felt great. I love when things make sense, and the Asperger’s diagnosis made beautiful and astonishing sense.

Then, after a month or so, I got done walking on air and began feeling a lot of grief for the things I couldn’t change, for the person I couldn’t become, and for the end of believing that I could do anything I wanted to do. Since that time, I’ve been in a sort of holding pattern, and I’ve felt like I was doing okay. But now, I feel like the bottom is falling out.

On the outside, nothing has changed. I am physically healthy, my marriage is great, my kid is happy, I can write no matter how fried my head feels, and anyone looking in from the outside would probably assume that I’m doing just fine. The problem is, because I don’t go out much anymore, very few people can actually see me from the outside. I’m feeling an absolute aversion to going out into the world. Some days, I can take walks on quiet streets, so long as I’m a) wearing my Sonic Defender earplugs, b) wearing sunglasses, and c) keeping my eyes fixed on the ground whenever I see a person anywhere near me. I have to control what I look at and what I listen to, as much as I can. But most days, I don’t want to go anywhere.

One by one, I’m watching all the dreams I had for my life fall away. The funny thing is, I thought I’d already let go of so many. What could be left? I just had a few small dreams I was holding onto—going to the movies with my husband, having dinner out, getting dressed up and working at the store. Last year at this time, Bob and I went to the movies on Saturday nights, and I loved getting dressed up for work. I was even hoping to find a part-time job. But now, just a year later, even those small things are gone. I look at all the clothes that I bought last summer at the store, and I want to cry. They belong to an era in which I naively thought I’d be a strong, confident part of the world. That era seems very far away.

It seems like anything I want to do “out there” isn’t possible. Even the people from the school for autistic kids haven’t gotten back in touch with me, and it’s been over two weeks. Maybe they read my blog and decided they didn’t like me? Or maybe, I’m just supposed to let go of the world “out there” and stand face to face with the unmistakeably autistic person I am.

I have very little energy for NT emulation. I know how much it burns me out. I go into the world and put on my face, get overwhelmed and anxious, and come home unable to locate myself. Somewhere between being housebound and being in the world, there’s a huge rift and I fall in. Every time.

I love the natural world, and I love people, and I find the things that people do very interesting, and sometimes very beautiful. But it’s all overwhelming to my senses. When I go into the world, and I take in all the sense impressions and emotional energy, I end up feeling like I’ve been hit by a train.

It used to be that I was just afraid of people with bad energy, but I can see those types coming from a mile away. It’s not hard for me to spot them, and it’s not hard for me to walk away from them. It’s the really friendly people that give me the difficulty now. I want to be around them, I want to talk with them, and I want to be one of them, and yet, I simply can’t. I went to the thrift store with Bob last week, just to see how it felt. Everyone was so welcoming and so glad to see me, and I loved seeing them, too. But after a half hour of being in the store, I was disoriented and exhausted. It took me most of the next two days to recover.

Then, on Sunday, I had an emotional blow-out, and spent much of the day crying over feeling so isolated and alone. On Monday, Bob left for New York for a couple of days, and I was still crying. On Tuesday, I stayed in all day. By Wednesday, I was sitting at the breakfast table, handflapping and rocking. In the past, when I’d get overloaded, I’d have to think about what to do—lie under my weighted blankets, work out, sing, do some hard work. Now, I’m just stimming, early and often.

From the point of view of the autistic person I am, this kind of stimming is progress. In fact, I love it. It feels natural. It feels like some sort of ancient healing ritual. It feels like I’ve lived my whole life unable to speak my native language, and now I can.

But from the point of view of the highly accomplished and assertive person I used to be, it feels like I’ve been the hapless victim of a major fraud. How can I possibly have lived on this planet for 50 years without knowing that I’m autistic? I can see living here for one year, or two years, or even ten years without anybody noticing, but 50 years? How is it that even possible? Why did I have to burn out before the truth revealed itself? And now that I know, what’s going to become of me?

It’s really hitting me hard that there is no going back. I cannot fool myself into thinking that if I get dressed up, go out, and work at the store that somehow, I’m approaching the vicinity of the Land of Normal, where everything will be okay. When Bob is here, I do all right, because he’s easy to be with and he loves me. When my daughter is here, all the better, because I love seeing her and hearing the things she shares about her life. But when I’m alone, without either of them, my level of fear goes off the charts. I think, what if I were left completely alone? What if this were the next 20, or 30, or 40 years of my life? It’s not the food shopping and the driving that worries me. It’s the being alone. Forever.

I know that everyone has these kinds of fears. But neuro-typical people have many more opportunities to go out and get a break from the aloneness. I don’t have those opportunities. I can’t make plans and hope that they’ll work, because I keep trying to make ever more humble and sensible plans, and they still don’t work.

Right now, I am so totalled by all these realizations that Bob is coming very close to canceling his trip to California in August. My daughter will be at camp during the time that he would be away, and the idea of a week and a half at home alone feels impossible. I used to handle his extended trips by making plans with friends, but it didn’t really help. In fact, in some ways, I felt more isolated. I loved seeing my friends, but when I came home, I’d feel twice as alone as I had before. Even Bob’s short trips to New York are terribly difficult.

So I’m in a major crisis. It’s not a life-threatening crisis, but it’s a crisis nonetheless. I want Bob to stay here as much as possible. I don’t have a problem with his going to New York to see his dad, because his dad needs him and they need to be together. Even thought it’s difficult, I can support it. But I also need a lot of support for myself right now, and while I’m still trying to find ways to get the support outside of my house, I need Bob to be nearby. If his daughter wants to see him in August, perhaps she can come east and they can hang out in the house she grew up in. Bob feels like that might be a good solution. He’s not ready to make a final decision at the moment, but I think that’s where it’s going.

For my part, I’m starting to make some contact with a couple of local agencies that work with developmentally disabled people. It’s useless to pretend I have it all together when the whole damned facade is crumbling. I hope I can find some support locally and feel less alone in my everyday life.

You are all an amazing lifeline.

© 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

I’ve heard people say that until you get a diagnosis from a doctor, you can’t be sure that you have Asperger’s.

I vehemently disagree. I unconditionally support the right of all Aspies to self-diagnose, and when someone tells me that he or she is an Aspie, I don’t ask for papers. Here’s why:

1. We know ourselves better than anyone else.

We are perfectly capable of turning our intelligent, hyper-focused, perseverating minds to the task of learning about AS, poring over the different diagnostic checklists, communicating online with other Aspies, and engaging in careful self-reflection. Once we’ve done all of these things, we know more about AS than your average general practitioner or psychologist. Unfortunately, all too often, these are the people to whom we go for answers.

2. Your average general practitioner or psychologist knows very little about AS.

I can’t even count how many times I’ve heard an Aspie say that a doctor or therapist blithely dismissed his or her concerns. And why? Because the Aspie could make eye contact and converse. Or because labels are restricting, so why would anyone want one? Or because the Aspie was expressing emotion and empathy, and as we all know, people with Asperger’s are walking automatons.

3. Talking with a professional who knows very little about AS can be a very painful experience.

Five days before my assessment with an AS specialist, I went to my therapist for support. I had barely spoken the words “I feel certain that I have Asperger’s” when she started arguing with me. I spent the remainder of the session defending myself. Apparently, the fact that I could speak to her and make eye contact took me out of the running.

It’s very difficult to have these kinds of experiences when first exploring Asperger’s. For me, those first days and weeks of realization were surreal. I felt very relieved that so many pieces of my life were falling into place, but I also felt very weirded out that so many of the things I’d worked hard to overcome were simply hard-wired into my neurology. While it was a relief to know, for instance, that making lists isn’t a sign of some deeply intractable neurosis, it was also difficult to realize that I make lists all the time because my brain wiring causes me to have trouble with sequencing, memory, and the modulation of visual, auditory, tactile, vestibular, and emotional stimuli.

I was relieved not to be the psychological mess I’d always thought I was, but it was mind-bending to hear myself say, “Oh, so I’m autistic. That explains it.” I really needed some support, and when it wasn’t there, it was devastating.

So why did I go for an “official” diagnosis anyway? After all, I’d done my homework, everything in the DSM-IV fit me, and my husband corroborated all of my observations. I knew that I was right. But after 50 years of feeling invisible, unworthy, and utterly strange, I wanted someone out there to see me, hear me, understand me, take me seriously, and not send me away until I got a label that would stick.

I don’t think that many people understand the disorientation of not having a label, of not being able to give one’s way of seeing a name. I wanted a label, and I wanted it from someone other than myself. I suppose it’s my yearning to be part of the social world, to participate in that experience in which people mirror one another and help one another find identity. I’d always been the lone ranger, creating my own definitions, and asserting my own understanding. Except for my husband, I had never had a clear mirror, and when it came to an Asperger’s diagnosis, I knew how deeply I needed one. I wanted someone else to call me an Aspie, to acknowledge my group identity, and to give me my name.

Not surprisingly, the days leading up to my diagnostic assessment were almost unbearable. Coming to the understanding that I had AS was surreal, but the possibility of having that understanding denied was worse. It was utterly terrifying. Once I cut through all of my resistance to authority, my anxiety in new situations, and my awkwardness with strangers, the thought that I might go to the specialist and not be diagnosed with AS was enough to keep me up at night. It occurred to me that this fear, in and of itself, must be undeniable evidence that I have Asperger’s. I mean, have you ever met a neuro-typical person who feared not being diagnosed with an autism spectrum disorder? I certainly haven’t, but I wasn’t sure that the specialist would take this fact into consideration.

The good news is that the diagnostic session was a great experience. The doctor asked my husband and me a lot of questions. He observed my behavior and saw right through my well-honed NT acting skills. Of course, I was stimming a fair bit (okay, a lot), so that probably gave me away, along with the fact that he was able to read those nonverbal signals that everyone keeps talking about. (Don’t worry if you’ve never seen one. I haven’t either.) He pronounced me an Aspie, and he reassured me that having Asperger’s is not a problem. The problem is the way that the rest of the world sees us.

So, for once in my life, rather than telling me to “think outside the box,” someone gave me a nice box of my very own in which I could cuddle up and rest. And with this box came a diagnosis that explains practically everything about me. It was like being handed my own personal Rosetta stone. For the first time, my life made sense.

And when I got the receipt for the session, with a diagnosis of Asperger’s right there in black and white, I framed it. It hangs in my loft, a constant reminder of the day that my life truly became my own.

© 2009 by Rachel Cohen-Rottenberg

Autism Wiki defines stimming as “a repetitive body movement that self-stimulates one or more senses in a regulated manner.” Stimming can involve one or more of the five senses, the vestibular system (which controls balance, movement, and spatial orientation), and the proprioceptive system (which provides information about the relative positions of the parts of the body).

Stimming is generally an unconscious nervous system response. In psychiatric terms, it is a kind of stereotypy, a continuous movement without apparent purpose (although it certainly serves many not-so-apparent purposes). It is one of the symptoms of autism listed in the DSM-IV, although many autistic people do not stim.

Common Forms of Stimming
There are many different types of stimming. The following list provides some examples:

• Visual: Blinking, looking at fingers, staring at a light, lining up or spinning objects
• Auditory: Snapping fingers, humming, grunting, echolalia (repeating words spoken by another person), repeating rote phrases
• Tactile: Scratching, touching objects, biting nails, twisting hair
• Taste: Licking objects or placing them in mouth
• Smell: Smelling one’s own body, objects, or other people
• Vestibular: Rocking (back and forth or from side to side), spinning, pacing, jumping
• Proprioceptive: Wrapping arms inside shirts, hand flapping, toe walking, tapping fingers

Some also count perseveration (our Aspie fixation on one or more special interests) as a form of stimming.

My Childhood Stims
For me, stimming is a mode of self-soothing. It helps to calm my senses and acts as a barrier to stimulation from the outside world.

When I first started learning about Asperger’s and saw references to stimming, I couldn’t believe my eyes. So many of the behaviors were ones that I had manifested as a child and some had even come along with me into adulthood. My childhood home was constantly overstimulating: loud voices, poor boundaries, erratic behavior, and a TV that came on at 6 am and went off at 11 pm. So I needed a lot of soothing.

Here are some of my childhood stims:

• I would lie in bed and squint at the light coming from the ceiling fixture in the center of my room. I enjoyed seeing all the little rays of light that seemed to shoot out in all directions.
• I loved lining up objects, such as different types of candy, dolls, coins, and baseball cards.
• I liked spinning the wheels on my Tonka trucks far more than I enjoyed playing with the trucks themselves. I still like looking at bright spinning things.
• I constantly twisted my hair by winding it around my fingers. It used to drive my parents up the wall. One of the recurrent imperatives from my childhood was “Stop playing with your hair!” But I never gave it up. I mainly loved the softness of my hair and how the ends felt against the tips of my fingers.
• Remember those big fat green number 2 pencils from grammar school? The kind where you could see the lead on the bottom because there was no eraser? Every day in class, I used to chew on the ends of those pencils and lick the lead on the bottom. Between the lead-based paint and the pencil lead, it’s amazing that I have any brain cells left.
• I always enjoyed wrapping my arms and hands inside my shirt or sweater. It made me feel very secure. I do a more adult version of this stim now by putting my hands in my pockets when I’m out walking. When I wear a skirt or jacket without pockets, my poor arms and hands feel forlorn and just don’t know what to do with themselves. It makes me very nervous.
• I loved to tap my fingers and do complex patterns, alternating fingers and counting in different sequences. This stim is another that pops up in my adult life from time to time.

My Adult Stims
Here are my adult stims, most of which I do only at home:

• Toe walking and hand flapping. I have no memory of doing either of these stims as a child, although I can vividly recall the day my principal told me to start walking by putting my heel down first. Clearly, I was walking toe first, but I soon stopped. (I was a very compliant child.)
• Twisting my hair (even though it’s pretty short now).
• Counting the buttons on the TV remote control by tapping them lightly with my fingers in different patterns, pressing my fingers against the sides of each one, and figuring out how many even sets there are. (This stim drives my husband nuts when we’re watching a movie. He generally takes away the remote control and holds my hand instead.)
• Eating foods with soothing textures, like almond butter, peanut butter, and tahini. I’ve been noticing lately that it’s not the flavor I’m after with these foods, but the texture. It’s the tactile experience that makes the stim work.
• Riding my bicycle on a stationary stand. I like the repetitive circular motion.
• Looking at a “magic wand” with lights that spin when I push a button.
• Organizing objects of any kind, any time, anywhere.

The last time I saw my OT, she mentioned that engaging the proprioceptive system includes putting different sorts of pressure on the joints. The right amount of pressure is very soothing. For this reason, weighted blankets, weighted vests, and other objects are often very calming to autistic people. I asked her whether toe-walking is soothing because of the pressure it puts on the joints, and she said, yes, that toe-walking puts more pressure on the joints per square inch than walking heel first. Hand flapping is also calming for much the same reason.

On the advice of my OT, I’ve been wearing a weight on each of my ankles, and I’m finding it very calming and grounding. I’ve also ordered a weighted blanket and a weighted vest. I’ll post more about using them once they’ve come in the mail and I’ve had a chance to try them out.

© 2009 by Rachel Cohen-Rottenberg