Archive for Diagnosis

Getting an “Official” Asperger’s Diagnosis: A Personal Decision

May 26, 2009 Rachel Anxiety, Diagnosis, Stimming

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

18 comments

A Critique of the Theory of Mind (ToM) Test

April 2, 2009 Rachel Childhood, Critiques of Autism Theories, Diagnosis, Mainstream Theories of Autism, Mind-Blindness, Sensory Processing Disorder (SPD), Sensory Processing Issues, Theory of Mind (ToM)

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

I’ve always had my doubts about this conclusion.

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

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

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

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

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

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

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

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

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

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

Moreover, as I reflect upon how I would experience the Sally-Anne test as an adult, I’m certain that with my auditory processing difficulties, I would need to write down the sequence of events in order to make sure I understood what was being asked. It’s very difficult for me to keep track of auditory information, and I generally need to make it visual in order to more easily grasp it and remember it. If I were to begin plotting out the sequence of events in writing, I’m virtually certain that a diagnostician would conclude that I was attempting to figure out the answer by deductive logic, rather than by using ToM. That diagnostician would be wrong. I would not be attempting to arrive at an answer; I would be attempting to make sure that I understood the question.

If researchers were to keep in the mind that ways that autistic people experience the sensory world, the results might not imply impaired ToM, but a different way of processing sensory information. The results might even imply that autism is a sensory processing condition, and that many of its features derive from sensory sensitivity, problems with sensory integration, and overload.

At least, that’s how it seems to me.

© 2009 by Rachel Cohen-Rottenberg

18 comments

Women, Girls, and Asperger’s Syndrome

February 22, 2009 Rachel Childhood, Diagnosis, Friendship, Girls and AS, Women and AS

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

For example, Simon Baron-Cohen posits the “extreme male brain theory” to explain Asperger’s Syndrome. He employs a dichotomy between the empathizing female brain and the systematizing male brain. In Baron-Cohen’s theory, Aspies have extreme versions of the systematizing male brain. It’s as though the good professor has never considered the idea that systematizing and empathizing could exist in extreme measure in the same brain. His theory leaves out those of us who both systematize and empathize in non-normative ways.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

20 comments

My Sensory Assessment

February 9, 2009 Rachel Diagnosis, Dyspraxia, Gravitational Insecurity, Hearing, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues

Today, I met with my OT to discuss the results of my sensory assessment. Her report was full of very helpful information. Things that have mystified me all my life began to make sense. 

I’ll share the highlights.

Here is a list of the assessment tools she used:

Interview
Developmental/Sensory History Questionnaire
Adolescent/Adult Sensory Profile (Brown & Dunn)
Quick Neurological Screening Test-II (QNST-II)
Gravitational Insecurity Screening Tool (May-Benson, AJOT 2007)
Subtests from: PEERAMID-2 (Levine)
Ocular Motor Control Screening
Clinical Observations of gross motor, fine motor, and balance skills

In her report, she defined a number of terms that were helpful in understanding how my sensory processing system works. I’ll use her definitions as I discuss how they relate to my particular situation.

Sensory Processing
“Sensory processing is the continual process of the brain filtering, interpreting and organizing sensory information from the environment and from our body. We use this information to determine what is going on in our environment (external stimuli) and in our body (internal stimuli) and how to respond in just the right way for the situation. When effective, we can filter and prioritize incoming information and determine if it should be noticed or disregarded and respond in an adaptive, purposeful manner.”

Needless to say, I have difficulties with “filtering, interpreting, and organizing sensory information.”

Sensory Processing Disorder and Sensory Modulation Disorder
“Sensory Processing Disorder (SPD) is the impaired ability to interpret, organize and make sense of various simultaneous sensations entering the brain. The brain may not filter the stimuli or it may misinterpret the stimuli resulting in various reactions including fight, flight, freeze and/or fright responses. Sensory processing disorders have subtypes: sensory modulation disorder (sensory over and under responsive types and sensory seeking), sensory discrimination, and sensory-based motor disorders.” (Note: SPD is not yet an official diagnosis, though many OTs are working very hard to make sure that it appears in the DSM-V.)

“Sensory modulation refers to one’s responses to stimuli. When one is not able to regulate the intensity and types of responses to stimuli (internal or external), this is called a sensory modulation disorder. One may over respond, under respond to stimuli and/or seek stimuli.”

The assessment shows that I have sensory modulation disorder of the sensory over-responsivity (SOR) type. In other words, my nervous system is highly sensitive to visual, auditory, and tactile stimuli, as well as to movement. No surprises there.


Dyspraxia
Dyspraxia is “a deficit in the ability to plan, sequence, and execute a novel motor task.”

The evaluation concludes that I have mild dyspraxia when doing fine motor tasks, such as knitting, and that I have moderate dyspraxia when doing gross motor tasks, such as karate.

To learn to knit, I used the instructions in a beginner’s knitting book. I found it difficult to figure out from the drawings how to hold the needles, how to place the yarn on them, and how to do the various stitches. It was hard to translate from the picture in the book to what was happening in my hands. Fortunately, I am a tenacious person, so I just kept reading the instructions and trying each task until I got the desired result.

Once I’ve learned a skill, I can repeat it. I sometimes get out of practice, but after a few tries and mistakes, I generally remember what to do.

As far as learning karate goes, I had a somewhat more difficult time. Fortunately, I learned karate from some very patient senseis who respected the way that I figure things out. For example, I was not able to learn a kata (a sequence of moves) just by watching and copying my sensei, as most people did. The process I used was comparable to the one I use to translate visual information from a picture book. I learned the katas by doing the following tasks:

1. Film someone doing the kata (or buy a video if I felt too shy to ask).

2. Watch the video at home and write down all the steps in sequence in a list.

3. Create a mnemonic for remembering when certain sequences are repeated or changed.

4. Diagram the directions in which I needed to move on a piece of paper, with items in the dojo noted so that I could orient myself properly. (All katas require that you face in each of the four directions. Sometimes sequences are repeated in each direction, sometimes sequences are slightly altered, and sometimes, new sequences are added.)

5. Practice the form at home while imagining that I was in the dojo.

When my sensei asked me to perform the kata while facing in a direction different from the one I had in my mind, I quietly panicked. For example, if when I practiced a kata, I imagined beginning the form by facing the window, I would become very agitated if my sensei asked me to demonstrate the form by starting in the direction of the door. Sometimes, I could do it, but it took a lot of practice to get the kata in my muscle memory, and I never lost my anxiety about having to begin in a different direction.

Gravitational Insecurity
From our discussion today, I learned that gravitational insecurity denotes a condition in which one cannot determine where one’s head is in relation to the earth. A person with gravitational insecurity is afraid of having his or her feet off the ground, and of having his or her head tipped backward. 

The evaluation concludes that I have severe gravitational insecurity, and that I rely to a very great extent on my vision to orient myself in space. I am particularly averse to any kind of rotational movement. I’ll let the report speak for itself here:

“A gravitational insecurity assessment was administered. She attempted and completed the following tasks: jumping, jumping over a line, swinging laterally on a platform swing, rocking herself laterally on a peanut-shaped physioball, stepping on and off a tilt board with little hesitation or cues and little to no emotional responses. Rachel quickly becomes dizzy when she stands on a chair and jumps from a chair with her eyes closed, and attempts to stand in tandem with her eyes closed. She was able to lie supine on a physioball and look up at the ceiling for a moment before needing to kneel and then lie on the floor due to severe dizziness. A weighted blanket was placed over her for 4 minutes as a grounding technique so that she could recover from this severe dizziness. Rachel stated that she became “nauseous” watching this therapist demonstrate rolling prone on the physioball and this task was omitted from the assessment assuming that her response would be aversive.”

Yes, I got nauseous just watching the OT tip her head backward!

Understanding the concept of gravitational insecurity explains a world of difficulties I’ve had with very simple tasks. For example, I generally resist any activity that entails having to move up or down, because when my head is in motion, I have a very difficult time orienting myself as to where the ground is. So, for example, I don’t like swinging up and down on a playground swing, but I can swing from side to side on a swing that I can stand on. When I swing from side to side, my head is in the same plane with the rest of my body and my feet do not move up or down.

Another example: As I write this post, the sun is going down, and I am going to have to get up and turn the light on. There are actually times when I sit here in the dark, using only the light from my screen to read the keys, because getting over to the light switch feels like such a production. I’m sitting on a futon on the floor, and the light switch is on the wall to my left, about two feet away. I can’t reach it from where I am, so my usual strategy is to move over toward it along the futon, staying in a sitting position, with my head remaining as still as possible. I then try to reach the light switch without getting up. It’s physically impossible for me to reach it from a sitting position, but that doesn’t stop me from trying. Because I’m writing about it right now, I’m conscious of the impossibility factor, and I’m aware that I’m going to have to find some other way to turn the light switch on.

Excuse me for a moment……

There, now it’s on. Guess how I did it? I carefully moved over onto my knees, raised my arm up, turned on the light, and then returned to a sitting position with a feeling of great relief. The entire time, my head remained in the same plane as the rest of my body. I made sure of it.

There are a number of other tasks that I resist doing because of gravitational insecurity: taking out pots or dishes from an upper or lower cabinet; emptying a dishrack and putting things away in an upper or lower cabinet; putting on my winter boots (because the task entails sitting, lifting my foot into the air, putting on the boot, and then crouching over my boot with my head toward the floor as I tie the laces); reaching up for my winter coat (because the peg is fairly high); taking showers (bath tubs are slippery and I have to close my eyes while I’m washing my hair); and other very basic things.

I told the OT that all my life, I’ve just assumed I was lazy. She said, no, I’m not lazy at all. To the contrary: For me to do these simple tasks is very hard work. It doesn’t look like it on the outside, but that’s what’s happening inside.

Amazing, isn’t it?

The report also made suggestions for treatment. I am going to begin seeing the OT once a week as soon as I can. I’ll talk more about various treatments as I go through this process.

© 2009 by Rachel Cohen-Rottenberg

7 comments

Impaired Theory of Whose Mind (ToWM)?

January 18, 2009 Rachel Critiques of Autism Theories, Diagnosis, Empathy, Mainstream Theories of Autism, Mind-Blindness, Theory of Mind (ToM)

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

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

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

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

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

But I also have an AS diagnosis. Interesting.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2009 by Rachel Cohen-Rottenberg

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Getting Diagnosed at 50

December 29, 2008 Rachel Diagnosis, Marriage, Women and AS

I first remember identifying with the experience of autism many years ago, when Donna Williams published her book Nobody Nowhere. I read an interview with the author, and I was struck by a moment in which I identified with her response.

As I remember it, the interview took place outdoors in a park under the shade of a large tree. At one point, a crowd of children came into the park, laughing and talking all at once, and running in the direction of Ms. Williams and her interviewer. At that moment, Ms. Williams said something like, “I have to close down now.”

I wasn’t sure what she meant, but it sounded like something I would do. When confronted by too much noise and too many people, I always felt flooded and overwhelmed. In my mind, it felt as though many little doors would click shut in an effort to keep out the visual overload and auditory din. On the outside, I seemed fine, but on the inside, I was working very hard to hear the voice of my own thoughts.

Even the name of her book seemed to describe me; I felt like an exile everywhere. But I said to myself, “You’re being overdramatic. You have a boyfriend, you have a job, you have a college degree, and you get along with people reasonably well. You can’t be autistic.” Those were the days when I thought autistic people were simply locked into their own, strange worlds, unable to communicate or function in society. Donna Williams seemed an exception. I wasn’t in the least exceptional. There was no need for me to read her book.

Some years went by, and then I began to hear about Asperger’s Syndrome. What I learned sounded eerily familiar, but I focused on how well it described my father. I wasn’t ready to look at how well it described me.

More time elapsed. And then, finally, the dam broke. After a half-century of trying to be “normal” (and nearly convincing myself that I’d succeeded), I had a chance meeting with someone who told me, out of the blue, that he had Asperger’s Syndrome. We shared the same love of language, and in some inexplicable way, he seemed like kin. If this man could have Asperger’s Syndrome, I thought, then maybe it wasn’t such a stretch to think that I might have it, too.

So I went on a mission. I started reading voraciously, posting questions in online forums, taking all the online diagnostic tests, and going over all the DSM-IV markers. I researched Asperger’s Syndrome virtually non-stop for two weeks and went over every last piece of information with my incredibly patient husband. The more I read, the more I saw myself reflected in a very clear mirror.

Little by little, my life began to make sense. Asperger’s Syndrome explained so many things that had seemed so odd and mysterious. As hard as I’d tried, I’d never known how to navigate the social world. Make small talk? I could never figure out how—or why. I couldn’t stay in synch with a simple conversation. I’d lose track of what people were saying, and by the time I figured it out and came up with a response, the group would have moved on.

I’ve always felt frightened, overwhelmed, and disoriented in large crowds. Take my daughter to the mall? Forget it. Go contra dancing? Impossible. At every social event, I ended up in the same place: leaning against the wall and looking for someone else who seemed equally dazed. If there were a library in the building, all the better. I’d go there and hide. I mean read.

And then there was eye contact. Why did I have to look away to focus on my thoughts? Why was meeting the eyes of a stranger so powerful and so distracting?

What was the matter with me? I used to wonder. Was I broken?

After two weeks of research, I knew I wasn’t broken. I no longer felt like a jigsaw puzzle with lots of pieces missing. All of the pieces of my life started coming together to form a coherent, recognizable picture. So much of what I read about Asperger’s Syndrome could have been written just for me.

I had found my answers, but I needed verification. I made an appointment for an assessment with an AS specialist. The days before the appointment were filled with almost unbearable anxiety. Would he see past the social skills I had learned? Would he listen to what I told him about my inner experience? Would he believe me?

I needn’t have worried. After observing me, asking me a number of questions, and hearing my husband’s thoughts, the doctor diagnosed me with Asperger’s Syndrome and noted that I had significant sensory integration issues.

I could hardly believe it. For the first time in my life, I felt like I could breathe. When I got back in the car with my husband, I said, “You heard him. He did say I have Asperger’s, right? I didn’t misunderstand, did I?”

My husband just smiled and said, “Yes, that’s what he said. Shall we go out for dinner?”

I was ready to celebrate. I had a name; I was an Aspie. I had a box that finally fit; it was labelled Asperger’s Syndrome. I could cuddle up inside it and claim it as my own. I could begin to forgive myself for all my unrealized dreams, for all my so-called insufficiencies, for all my anxiety, for all my fear, for all my loneliness.

For a while, I was on top of the world. When I got my diagnosis in the mail, I framed it.

And then, the grief hit.

All my life, I had held onto the idea that with a little more perseverance and self-reflection, I’d be able to do anything. That idea had fueled all my hope and all my work. But now I had a neurological condition that was not going to be fixed. I had had this condition all my life. I might be able to work with it. I might be able to mine its strengths. I might learn to manage its weaknesses. But I would not be able to change it.

Most days, I don’t want to change it. I like being me, more than I ever have before. But there is great sadness and struggle in letting go of an idea that has always guided me. Saying goodbye to the old idea of progress is like saying goodbye to a friend who had promised never to leave my side.

But I have to say goodbye in order to begin again.

© 2008 by Rachel Cohen-Rottenberg

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