When Medications Do Harm

November 10, 2011 Rachel Anxiety, Depression, Medications, Sensory Processing Issues

S-O-S Best of the Best (BoB) is a collection of bloggers who come together once a month to write on one topic pertaining to “invisible” special needs, including ADHD, autism, anxiety, sensory processing disorder, and mental illness. I was asked to contribute a post for this month’s topic on the use of medications. The following excerpt from my new book, Blazing My Trail: Living and Thriving with Autism, discusses my experience of taking Lorazepam, a benzodiazepine, and the healing I’ve found since withdrawing from the medication.


My Experience with Lorazepam

“The biggest drug-addiction problem in the world doesn’t involve heroin, cocaine, or marijuana. In fact, it doesn’t involve an illegal drug at all. The world’s biggest drug-addiction problem is posed by a group of drugs, the benzodiazepines, which are widely prescribed by doctors and taken by countless millions of perfectly ordinary people around the world.”   — Vernon Coleman

In February of 2005, to treat an increase in my level of anxiety, my primary care doctor prescribed a medication called Lorazepam. Little did I know that taking this drug would send me on a years-long journey of coping with ever-increasing depression, fear, loss of functioning, and social isolation.

Fortunately, in 2010, I changed course and began walking a new road. I engaged in the process of learning about how the medication had affected my life, and I went through the ordeal of weaning off it. As a result, my high level of functioning, my independence, and my zest for life have all returned.

Medication Withdrawal and Other Delights
From early 2005 until early 2009, I took one 0.5 mg tablet of Lorazepam upon awakening in the morning and another before going to sleep at night. After I had been on the medication for four years, another doctor increased the dosage to 0.5 mg in the morning and 1.0 mg at night. By early 2010, I was taking 2.0 mg per day. A third doctor also put me on Zoloft (an SSRI) and Topamax (for migraine prevention), in addition to Lorazepam and Amitriptyline (a tricyclic antidepressant).

By the spring of 2010, I had begun to realize that the medications, far from helping me, were making it increasingly difficult to manage my life. I was crying almost every day and I was nearly housebound. So I began the process of weaning off all of them — without medical supervision. My primary care doctor had fired me from her practice after I asked for accommodations for my disability, and it took me over a month to find another doctor who would accommodate me and guide me through the weaning process.

Meanwhile, I was on my own.

Tapering off Zoloft, Topamax, and Amitriptyline posed no problem whatsoever. Quitting Lorazepam, however, was another story. After attempting to withdraw from Lorazepam by decreasing my dosage by 0.5 mg per week, I suffered an acute reaction. I began to
have a tremendous amount of anxiety, and my sleep worsened. After I stopped taking the medication altogether, I hardly slept for two nights. I was sweating through my clothes. I was crying and frightened. I was in so much physical pain that it was almost unbearable. I felt as though my body and mind were coming apart. I found myself pacing up and down the floors of our house saying, “Misery, misery, misery.” Without a physician to consult, I couldn’t understand why the withdrawal was having this impact.

With nowhere else to turn, I went online and looked up information on how to taper off Lorazepam without pushing myself to the edge of sanity. When I did, I found out that it’s a benzodiazepine and a tranquilizer. In other words, it’s in the same category as Valium and Librium, and it’s highly addictive. In fact, in 1975, the U.S. Department of Justice demanded that benzodiazepines be classified as schedule IV drugs under the Controlled Substances Act.

And yet, this medication had been prescribed for me by three different doctors — even after I had told them, in no uncertain terms, that I absolutely did not want to take anything narcotic or addictive. What part of that statement did they not understand? Or did they just not know what Lorazepam does?

As I soon found out, I was not alone in suffering acute withdrawal symptoms. According to Professor Malcolm Lader, member of the UK Committee on the Review of Medicines, Lorazepam is a particularly difficult drug to withdraw from. “When somebody comes into my office and says that they’ve been trying to stop their Lorazepam,” he said, “my heart sinks, because I know I shall have twice as much of a problem as getting them off, say, Valium. The symptoms are more severe, they’re more persistent, more bizarre, and people are much more distressed by them.” (Ashton, “A Problem”)

In my online travels, I found a support site for people seeking to withdraw safely from benzodiazepines — and I learned that, when done properly, the process takes six to 12 months. So, in early May of 2010, I put myself on a stabilization dose of 1.5 mg per day, and I found myself able to sleep and to tolerate being in my body again. After three weeks, I began tapering very slowly, cutting my dosage by very small decrements, until I finally finished my taper, under the care of a new primary care doctor, eight months later.

Suffice it to say that, even over the course of a slow taper, the withdrawal process was brutal. Every time I made a cut in my dosage, I experienced extreme amounts of muscle pain, insomnia, anxiety, depression, and exhaustion. I was determined to rid Lorazepam from my body, though, and by the grace of God, I have.

But the havoc this medication wrought over the years I took it is, unfortunately, an all-too-common effect of benzodiazepines.

Daily Interdose Withdrawals
Lorazepam is a short half-life benzodiazepine. On average, the dose reaches its peak blood levels in about seven to eight hours. As I came to understand how quickly the concentration of the drug in my bloodstream was falling each day, my experience of the previous four years started to come into focus. Because I had been taking the medication only in the morning and in the evening, I had been going through interdose withdrawals on a daily basis, with all the same symptoms that would attend my eight-month taper.

That’s right: I had been having withdrawal symptoms every single day for four years. No one had ever warned me about how the medication worked, so I couldn’t figure out why I was on such a physical and emotional rollercoaster ride. Nothing in my life seemed to account for it, and the only response from my prescribing doctors was to increase my dosage.

These increases did not work. In addition to the impact of falling blood concentrations, daily withdrawal symptoms occur because of the tolerance that the body develops, very quickly, to the drug itself. As Dr. C. Heather Ashton writes in Benzodiazepines: How They Work and How to Withdraw, these drugs “lose much of their efficacy because of the development of tolerance. When tolerance develops, ‘withdrawal’ symptoms can appear even though the user continues to take the drug.” (Chapter II)

Because they quickly become ineffective and trigger daily withdrawal symptoms, benzodiazepines cause a host of problems, many of which they were intended to manage. In early 2009, after four years of benzodiazepine use, I exhibited difficulties common to benzodiazepine users. I was crying on a regular basis. I was falling into a depression unlike anything I had ever experienced. My anxiety was nearly paralyzing. And I had become almost housebound. The outside world felt overwhelming, and going out triggered both fear and exhaustion.

All of these symptoms amount to a textbook case of the impact of benzodiazepines. In her research, Dr. Ashton determined that people who use these drugs become ill with a number of psychiatric conditions. “Many patients,” she writes, “find that anxiety symptoms gradually increase over the years despite continuous benzodiazepine use, and panic attacks and agoraphobia may appear for the first time after years of chronic use.” She adds that long-term benzodiazepine use can cause depression in people with no history of it and can aggravate depression in people already suffering from it. (ibid, Chapter I)

Heightened Sensory Sensitivity
As a person with autism, I found that all of the symptoms that attend benzodiazepine use were exacerbated by the impact of interdose withdrawals on my sensory functioning.

By early 2009, I was more sensory sensitive than I had ever been in my life. Sometimes, my skin felt like tissue paper; at other times, loud noises were enough to send me into physical pain that took me days to recover from. Light seemed very bright, and I began wearing sunglasses, even on winter days. I became overwhelmed by this sudden severe spike in sensitivity, and every foray into the outside world took all the courage and energy I could muster. My level of functioning decreased significantly. Most days, I just stayed home. I couldn’t figure out what was happening.

Then, I read Dr. Ashton’s findings on benzodiazepine withdrawal and sensory sensitivity. She notes that “a characteristic feature of benzodiazepine withdrawal is a heightened sensitivity to all sensations — hearing, sight, touch, taste and smell. When extreme, these sensations can be disturbing.” She describes one woman needing to stop all the clocks in her house because their ticking seemed unbearably loud. Others have had to wear dark glasses because ordinary light seemed “dazzlingly bright.” (ibid, Chapter III) I’d finally found an answer to the question of why my sensory sensitivities had increased so dramatically in a relatively short period of time: the daily interdose withdrawals were sending my already acutely sensitive system into overdrive.

After four years of benzodiazepine use, I could barely socialize at all. I felt very isolated and I suffered from severe levels of stress that were lowering my levels of functioning. As I learned about the havoc that these drugs wreak, I considered myself lucky to be tapering off them before they stole any more years from my life.

Recovering from Benzodiazepines
The good news is that my functioning and my quality of life have improved dramatically since withdrawing from Lorazepam. Just halfway through a difficult taper, I found my mind becoming clearer and my mood lifting. I felt more physically and emotionally resilient than I had in years.

As my taper progressed, I began to feel alive again. I still had my sensory-sensitive “I don’t want to go anywhere” days, but even on those days, I forced myself to go out for a walk, just to keep intact my connection to the world. In so doing, to my great surprise, I found my connection to the world not limited to human beings, but to all of creation. I began to walk and appreciate the trees, the colors, the breeze blowing — even the humid weather of a New England summer. I carried my camera with me everywhere and I took pictures that enabled me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world became a fascinating place. Ultimately, I entered three of my best photos in a local contest, won second prize, and had the pleasure of seeing my work displayed in town with that of other photographers.

Since I’ve withdrawn from the medication entirely, the positive effects have only increased, and my sensory sensitivities have quieted down appreciably. I go out every day, in any weather, even in winter. I’ve made new friends and rekindled relationships with old ones. The depression and agoraphobia are both entirely gone, and my high levels of functioning and independence have returned.

My experience is not unique. In 1991, Karl Rickels, a researcher at the University of Pennsylvania School of Medicine, reported that patients who had gotten off benzodiazepines were doing “significantly” better than those who had failed to do so. A few years later, he found that after long-term users withdrew from benzodiazepines, they “became more alert, more relaxed, and less anxious, and this change was accompanied by improved psychomotor functions.” (Whitaker, 136-137)

As for Dr. Ashton, she found that agoraphobia in her patients disappeared within a year of withdrawal, even in patients who had been housebound. Furthermore, most users experienced a dramatic increase in quality of life after withdrawal:

“Clinical experience shows that most long-term benzodiazepine users actually feel better after coming off the drugs. Many users have remarked that it was not until they came off their drugs that they realised they had been operating below par for all the years they had been taking them. It was as though a net curtain or veil had been lifted from their eyes: slowly, sometimes suddenly, colours became brighter, grass greener, mind clearer, fears vanished, mood lifted, and physical vigour returned.” (ibid, Chapter II)

When I was on benzodiazepines, my emotions were scattered, my sensory sensitivities were through the roof, and I found it difficult to think clearly. Since I’ve stopped taking them, my emotions have become much more moderate, positive, and under my control; my sensory sensitivities have become much more manageable; my thoughts have become sharper by the day; and, best of all, my passion for living has returned.

References

Ashton, C. Heather. “Benzodiazepines: How They Work and How to Withdraw.” benzo.org.uk. August 2002, revised. Accessed 21 June 2011. http://www.benzo.org.uk/manual/

—-. “A Problem with Lorazepam?” benzo.org.uk. 1988. Accessed 21 June 2011. http://www.benzo.org.uk/ashloraz.htm

Coleman, Vernon. Life without Tranquillisers. Large print ed. Bath, England: Chivers, 1990.

Whitaker, Robert. Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America. New York, NY: Crown Publishers, 2010.

© 2011 by Rachel Cohen-Rottenberg

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Guest Post: Are We Prey Animals?

November 7, 2011 Rachel Guest Posts

This wonderful guest post is by Charli Devnet, a woman with Asperger’s, who wrote the piece for Autistics Speaking Day. I am honored to repost it here.

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Three weeks ago, I attended a series of lectures in Albany, New York by Dr. Tony Attwood on high-functioning autism and Asperger’s Syndrome. Among the many insights I gained, one observation really struck a chord. Dr. Attwood commented that Aspies are like prey animals. I had been pondering that very issue myself.

Last summer, I was riding Silverado out on the trails when the thought first occurred to me. I adopted Silverado two years ago after my parents died, when the loneliness became unbearable. He is an undocumented immigrant, a former worker on a Mexican cattle ranch. At 14.1 hands, the vet calls him a large pony. Everyone else refers to him as the small grey horse.

Despite the stories you hear, there was no instant bonding between us. I had ridden most of my life, yet I had no idea of the responsibility and the cost involved in actually owning a horse. There are board fees and vet fees and farrier fees and, of course, all that tack that must be purchased. We’ve also had trouble finding a barn where we fit in. In little more than two years, we’ve been at three barns, and now I’m looking for a fourth. There have been many times when I wondered what I was thinking, acquiring a horse. Yet, as time has gone by, we have bonded, and Silverado has taught me many things that are as true of myself as they are of him.

You see, a horse really is a prey animal. He spooks at the least little thing — a thunderstorm, a backfire, an animal as innocuous as a deer. A deer will run across his path, and he’ll spook and, if I were not there to pull on the reins, he would turn and run away.

At first I would reprimand him. “Silly horse, to be frightened by a deer!” Then I began to see things from his point of view. Silverado catastrophizes. “Sure,” he thinks, “it looks like a deer, but what if she’s a mountain lion in disguise, trying to lure me into a false sense of security, and all the while planning to lap on my back and devour me? Better flee now and ask questions later.”

Haven’t I become just the same way? There was a time when I did not act like a prey animal. As a child, I was strong and spunky and high-functioning. I had troubles enough, to be sure: schoolyard bullies who chased me down the street, classmates who mocked and taunted me, teachers who treated me with undue harshness in the belief that so bright a child — so bright a girl — should know better than to misbehave as consistently as I did. But I did not think of myself as a victim. Whatever problems I had, I was tough enough to confront them.

Of course, as a child, I had what experts now refer to as a support system. Although I did not fit in with many of the other kids, I had my circle of playmates and, indeed, a best friend just next door. If my parents were not the best of nurturers, it did not matter. In my hometown, I had a plethora of aunts and uncles and grandparents who took up the slack. Further, like most children in the sixties, I was accorded a measure of freedom that few kids enjoy today. If I left home in the morning and came back for dinner, it was not thought amiss. I spent my free time carousing with my playmates, in the library pursuing my favorite subjects, just exploring on my bike or perusing the latest comic books in the What-Not Shop. (My favorite was Superboy. Like me, he came from the planet Krypton).

The summer I turned thirteen, I lost all that. My parents sold our house and moved to a crumbling estate in the country. Suddenly, I had no one to play with, no one to talk to, and nothing to do. I still had my bike, but there was nowhere to go. From that time on, loneliness began to track me and would never let me out of its icy clutches.

Loneliness made me vulnerable. It disabled me. If I were a male, I would say it emasculated me. It was then that I began to think of myself as a victim and, internalizing that notion, acted as a victim.

How else to explain why, despite several advanced degrees, I have been unemployed much of my adult life, or settled for a series of part-time jobs, for all of which I was overqualified and underpaid? How else to explain a life of unwanted solitude or uneasy celibacy? The only skill a prey animal has to master is how to sniff out danger and run away. Of all the skills I had as a child, the one I honed was that. Other people thought I lacked suitable work or relationships because I was lazy, too picky, or simply did not try hard enough. In reality, it was the highly tuned instinct of a prey animal frightened of living in captivity.

Although I excelled at being a prey animal, I was not a happy one, and I suspect that most Aspies are unhappy in the victim role to which the world has relegated them. True prey animals in the wild have the solace of the herd, and that is the one comfort that autistics most sorely lack. We are usually loners and not always by choice. The true loners of the animal kingdom — the cat, the owl, the wolf — are hunters, not prey. I wonder if that is the reason behind the rapport that most Aspies have with felines. We like cats because they embody qualities we wish we could incorporate into ourselves: that overwhelming self-confidence, that devil-may-care insouciance, the cat’s security in its ability to take care of itself, its wit to design a plan and the patience to pursue it.

When I was younger, I alleviated some of my sense of victimization by engaging in some cat-like behavior. I became what other people might call a “stalker.” Now, I never meant to harm anyone; I had no bad intentions. I was excited by the thrill of the chase. Lying in wait or following stealthily empowered me. It provided the temporary illusion that I was the one in control, the decision-maker; in other words, the person I had been before I realized that I was a prey animal. On the contrary, when a man approached me, I reverted to form and ran away. In the end, I turned St. Paul’s admonition on its head. I decided it was better to burn than to marry. At least burning made me feel alive and free.

My mother, who might well have been an Aspie herself, had a similar concept. She rarely ate and, as a consequence, was amazingly slender. I asked her how she kept so thin. She replied that she liked “that hungry feeling.” It took me a long time to understand the theory, but now I do. I guess it made her feel alive in a world of strangers, one aspect of life that she alone could control. Of course, in order to retain “that hungry feeling” and refrain from doing what comes naturally, something must be sacrificed. My mother sacrificed her physical health. She smoked to suppress her appetite. When she developed lung cancer at the age of 74, she had no strength to fight and succumbed very quickly.

As for me, I gave up all that I might have had in life had I not surrendered myself to the flight instinct of a prey, had I had the courage or the pride in myself to stand up to trouble instead of spooking and running away.

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On Disclosure, or Why I Was Quiet on Autistics Speaking Day

November 2, 2011 Rachel Communication, Community, Self-Advocacy

You would think that, at this point, disclosing my autism would be no big deal. After all, anyone can find out I’m autistic by doing a quick Google search on my name, reading my blog, or checking out the titles of my books.

But recently, the issue of disclosure has come up, and I’m finding myself approaching it rather differently than usual.

As many of you know, I’ve recently begun a master’s program in History and Culture at Union Institute and University. The program is entirely online, and for each course, my fellow students and I discuss our work through a discussion forum on the Union website. I’ve been talking about my interest in the autism and empathy issue, about different ways to approach the issue, and about the challenges of reading research papers that, for all of their attempts at neutrality, put autistic people in a painfully dehumanizing light. So I’m making no secret of my interests. But I haven’t yet mentioned the fact that I’m autistic — not even after a fellow classmate told me about her godson who is on the spectrum and her desire to find ways to help and support him. In the past, I’d have run right in and said, “I’m on the spectrum. You might get a lot out of reading my blog. And feel free to ask me any questions you want!” I did refer her to the Autism and Empathy site. And when I did, my professor looked at the site and my blog, and responded very enthusiastically to both. So I’m not hiding, by any means. I’m just not being as blazingly direct as usual.

At first, I thought that it was just disclosure fatigue. After all, I’ve been writing on the subject of autism and disability rights for nearly three years, and I’m feeling rather private right now. And then, of course, fear was rearing its ugly head — fear that if I disclosed my autism, my fellow students would think that I’m an unemotional, unempathetic robot more interested in objects than people. And yes, I could disabuse anyone of that notion by referring them to my blog, or to the Autism and Empathy site, or to my books, or to my husband, or to my daughter, or to my friends, or to my neighbors, or to my employers, or to pretty much anyone who has ever known me, but the stigma that attaches to autism is still there, and I know it. Usually, I am quite pleased to fight against that stigma, but in the context of my online courses, I’ve found myself strangely hesitant.

Disclosure fatigue and stigma have definitely entered into my holding back. But something else is in play. It’s the feeling that I just do not want to run in and disclose my autism right away unless I consciously decide it’s necessary. It doesn’t mean I won’t disclose it. It just means that I don’t want to lead with it.

I think what I’m going through is very much akin to what my gay friends have mentioned regarding coming out. At first, a lot of them felt that they had to tell everyone up front that they were gay — both to show that they were proud of who they were, and to get any homophobic insanities out of the way. But then they came to handle it differently. Instead of announcing it up front, they just started letting it come up naturally, such as in conversations about partners, or social justice issues, or the like. So instead of leading with, “I’m gay,” they’d just say naturally in conversation things like, “My partner and I went up to the inn this weekend,” or “I started fighting for social justice causes way back when I came out and joined the gay rights movement.” After all, straight people don’t greet every new person with “Hi, I’m straight.” It just becomes apparent.

By the same token, neurotypical people do not show up in discussion forums and immediately announce the nature of their neurology. I don’t see any reason that I should either, unless I determine that it’s necessary, according to my own lights. And so far, I’m finding my new approach quite interesting.

The only really odd thing about holding back is that I’m noticing that my pronoun use is, shall we say, problematic? For instance, when I talk about autistic or otherwise disabled people, I say, “they” rather than “we.” There is a serious cognitive dissonance going on, because I’m basically referring to myself in the third person. I have a feeling that this dissonance alone will drive disclosure, but it will have to happen in its proper context.

So I wasn’t quite ready to participate in Autistics Speaking Day this year. I fully support it, of course, but I was in such a different place in my process that it was difficult to get into the gear of writing something for it. It will be interesting to see how I feel about the whole subject next year.

© 2011 by Rachel Cohen-Rottenberg

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Navigating Competing Worlds: The Elusive Ideal of Normalcy

October 19, 2011 Rachel Ableism, Belonging, Community, Disabilities, Medications, Spectrum Pride

Over the past few weeks, I’ve been very busy with my job and with getting acclimated to the routine of my graduate program. I’ve formed a great connection with the little guy I care for, and in my graduate program, I’m generating lots of ideas and questions as I go along.

For one of my classes, I recently read an excellent article called Orchestrating Voices: Autism, Identity, and the Power of Discourse by Nancy Bagatell, an assistant professor of Occupational Science at Quinnipiac University. The paper is the result of the author’s nine-month process of interviewing and observing Ben, a 21-year-old college student with autism, as he engages in the iterative task of constructing his identity in the face of social stigma and the demands of normalcy. Because it illuminated some of my own struggles and gave me insight into some of the issues that we face as disabled people, I thought I’d share my observations.

In Bagatell’s study, Ben’s struggle for identity goes through three phases:

1. Pretending to be normal
2. Finding the autistic community
3. Navigating competing worlds

Sound familiar, anyone?

Pretending to be normal
Summary: As a child, Ben knows he is different, has little interest in the things his peers are interested in, and is “teased mercilessly.” He initially resists attempts by his parents and teachers to “fit in” and “act normal.” As Ben gets older and wants friends and a girlfriend, he attempts to act in the ways that his parents and teachers suggest, but he has difficulty navigating social situations. The more “normal” he tries to act, the more he feels that something is “wrong” with him, and the more isolated and depressed he becomes. (416)

When Ben goes to college, his anxiety and depression worsen. He sees a psychiatrist who prescribes medication and sends him to a social skills group and psychotherapy in order to help him “fit in.” He begins self-medicating with marijuana, alcohol, and prescription drugs in order to try to navigate social situations. In this phase of his life, Ben relentlessly attempts to control his behavior by pretending to be normal and longs for a cure for his autism. (417)

Ultimately, he finds that pretending to be normal is enormously stressful. He experiences increased anxiety and panic attacks, and he engages in self-injurious behavior. This phase finds its climax when he climbs to the top of a building, intending to commit suicide. The result is a three-day stay in a psychiatric hospital. (417-418)

My thoughts: One of the things that struck me about Ben’s story is the Catch-22 in which he finds himself: the more he tries to “act normal,” the more “wrong” he feels. That is, attempting to attain an ideal of normalcy only results in a pervasive sense of failure.

As a child, I avoided that sense of being all wrong — partly because I was a good student, and partly because I was an athlete. On both counts, success built upon success, and my self-esteem was pretty solid. The trouble started in adolescence, when social situations became more complex, and it was clear that I was not engaging them as other people were. Each year of high school, I chose a different friend to emulate, just so that I could feel that I was getting it “right.” But, like Ben, the whole time, I felt a deep and pervasive sense that something was wrong with me, and that sense only deepened as I got older.

I am very fortunate in that I didn’t end up suicidal. Oddly enough, the abuse I had experienced at home created in me a powerful desire to live. I was determined that I was not going to let the abuse destroy me.

But suicidal ideation is not uncommon for autistic people, and the beginning of Ben’s story is something of a parable about the very significant dangers of the medical model of disability. In emphasizing impairment, it rejects that idea that a disabled person is whole, and thus supports the notion that one must be typically able-bodied in order to be a complete human being with a full and meaningful life. The medical model is a self-perpetuating one: if it is taken as axiomatic that one must be “normal” to have a good life, then most of society’s resources and energy go to attempting to get disabled people cured, assimilated, or out of sight. Very few resources and very little energy go into making the society more respectful and inclusive of diversity, when doing so is the only way to actually enable disabled people to have full and meaningful lives. Ben’s attempted suicide speaks to his instinctive perception that the medical model holds no promise for him. It simply leaves him feeling that he is wrong and cannot be made right, no matter how hard he tries. Under these conditions, he feels that his life is not worth living.

Bagatell notes that Ben’s attempt to construct an identity have led him to consider suicide because he knows that he cannot be “normal” in a society that privileges the normative, and so ends up in a state of self-hatred: “Within the discourse of ‘normalcy’ Ben was a failure… Like many others with disabilities, Ben became ‘tangled up in various forms of self oppression’ (Swain and Cameron, 1999, p. 75). Ben’s attempts at self-punishment climaxed on that April day as he literally teetered on the edge.” (418)

Finding the autistic community
Summary: After he leaves the hospital, Ben attends an autism conference and learns that his behaviors and perceptions are neurologically based, rather than a question of moral will or deviance. He begins to see them as “a normal part of my experience.” Ben meets other people with Asperger’s who have stopped pretending to be normal. He rejects the need for a cure, seeing Asperger’s as integral to who he is as a person, not something that can be “separated out.” He begins to accept and assert himself as he is and to reject attempts to render him “normal.” In so doing, he makes a very good distinction between acting normal and being normal:

“There really is basically no way to teach yourself to be more normal. You can teach yourself to appear normal but you can never really be more normal. And trying to do it is just stressful. I think that’s everybody’s experience.” (419)

Ben sees himself as part of the autistic community, where he can be who he is without attempting to conform to conventional social expectations. He enters and becomes engaged in the shared experience of a world in which he is not marginalized. He listens to the voices of other autistic people who reject the need for conformity in a quest to live an authentic life. He chooses to “come out” as a person with autism and to adopt it as a “valid, positive social identity.” (419-422)

My thoughts: Ben’s experience almost precisely mirrors how I felt when I found the online autistic community. Suddenly, there were other people like me. And for the first time, I felt “normal” in a group of people. It was very empowering and very comforting.

The problem, as I soon found, was how to navigate between the larger world and the autistic community. As grateful as I am to have found this community, and as empowered as I feel by all that I’ve learned, the dissonance between my own emerging truths and the social attitudes toward disability that I’ve encountered in others have been very painful to me. It was one thing to attempt to navigate the world with an interesting neurology I didn’t have a name for; it’s quite another to have become conscious of the issues in play and find that the world is still seriously behind the game in understanding them. This is part of the quandary in which Ben ultimately finds himself.

Navigating competing worlds
Summary: After a time, Ben experiences the tension between the “authoritative voices” of the neurotypical world (in which he is perpetually reminded of the importance of fitting in and, thus, of his perpetual position on the margins) and the alternative voices of the autistic community, which welcome him and let him know that he is fine as he is. He realizes that he cannot just choose between these voices in constructing his identity, but needs to figure out how to perceive himself in both worlds.

Bagatell suggests that we form multiple identities in which to navigate multiple social and cultural worlds, and that the trick for Ben is to figure out how to have a positive identity in each one. (422-423)

For Ben, by the end of the study, the process is not going well. He experiences more agitation, anxiety, depression, and sensory overload. He tends to see both the autistic and neurotypical worlds in negative terms. He does not see autism as a positive, nor does he see many possibilities for love and marriage, even within the autistic community. On the other hand, he is more and more upset that the medical community doesn’t seem to understand autism and that his psychiatrist is constantly “experimenting” with his medications. (423) Ultimately, he seems to see that his problem is social, not medical, asserting that he doesn’t need social skills classes, but true inclusion in society: “’I am sick of social skills groups … . Why can’t someone go to the bar with me or to chess club? That’s what I need.’” (425)

My thoughts: The reality of constructing multiple identities really rings true for me. Earlier in my life, I experienced this process in forming a Jewish identity within the Jewish community, and then attempting to figure out how to navigate the larger society without losing my sense of my own culture. Within Jewish culture, I could use certain words and have my meaning be understood, because we all shared the same basic paradigm; in the larger culture, those same words could be taken to mean something quite different, and I had to choose carefully how to present myself and my ideas. (For example, the word “salvation” means something quite different in Judaism than it does in Christianity. In Judaism, it refers to being saved from suffering and injustice in this life, while in Christianity, it has to do with being saved from hell after death.)

Forming multiple identities is the challenge for people of all minorities who must live within the larger culture. How does one live within different worlds — especially when one world takes a pejorative view of the other? It’s a very complex process. For disabled people, it’s particularly fraught, because the larger society defines us in terms of what we lack, and we tend to form identity in the face of it. Along these lines, Bagatell quotes Swain and Cameron (1999):

“From the viewpoint of disabled people, then, their personal and social identities have traditionally been formed within a framework from which they have been excluded. In defining the parameters that state emphatically what disabled people are not (i.e. ‘normal’), the dominant cultural discourses determine that disabled people’s self-reference is measured against this. (p. 75, emphasis in original)” (418)

The question is, how do we disabled people define ourselves in a context that embraces the deficit model and sees us mainly for who we are not? It seems to me that we always have a choice to make: Do we take in those voices of impairment, lack, deficit, and disease, and see ourselves as people who are “less than”? Or do we define ourselves as whole, as human, as essentially fine, just as we are? And in making this choice, how do we root out the deficit model from our thinking about disability so that we can see ourselves as different, not wrong?

I’d love to hear your thoughts.

—

Sources

Bagatell, Nancy. “Orchestrating Voices: Autism, Identity, and the Power of Discourse.” Disability and Society 22, no. 4 (June 2007): 413-426. doi: 10.1080/09687590701337967.

© 2011 by Rachel Cohen-Rottenberg

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Quote of the Day — and Month — and Year

October 15, 2011 Rachel Quotes

I very much need to read and recite this quote every day:

“Hope has two beautiful daughters. Their names are anger and courage; anger at the way things are, and courage to see that they do not remain the way they are.”

— St Augustine of Hippo

How about you, dear readers? Do these words speak to you?

© 2011 by Rachel Cohen-Rottenberg

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Blazing My Trail Reviewed at Life with Aspergers

October 5, 2011 Rachel My Books


Many thanks to Gavin Bollard at Life with Aspergers for a great review of my new book, Blazing My Trail. Please stop by and read his review — and, while you’re there, take a look at Gavin’s many other insightful posts.

Blazing My Trail is available in paperback and as an e-book from Amazon.com. You can also purchase Blazing My Trail as an e-book from eBookIt! and the Barnes and Noble online store.

© 2011 by Rachel Cohen-Rottenberg

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A Protest March is Not Dialogue

September 28, 2011 Rachel Communication, Community

I’ve been doing some more thinking about the Self-Advocate/Parent Dialogues on The Thinking Person’s Guide to Autism.

Like many people, I’ve felt frustrated, angry, and saddened by what I’ve watched go on there. And I’m realizing that it’s because, each day, I show up wanting peaceful dialogue, and each day, I find myself in the middle of a protest march that keeps turning into a brawl. It feels exactly like wandering into a demonstration and counter-demonstration in which the police barricades, put in place to keep people from tearing one another apart, keep getting overrun.

Maybe it’s just me (and judging from the events of the past week, I’m beginning to think that it may very well be just me), but there are things that I’ve always expected from a dialogue, and that I’ve always assumed were both necessary and reasonable:

  • Expressions of respect for the other party
  • Listening and responding rather than reacting
  • Speaking with civility, even in the midst of great anger
  • Asking questions that go to the heart of intent
  • Equal time and representation for both sides to express their perspectives
  • Care and concern for individuals across division
  • An ability to acknowledge errors on both sides

But here are the things that I’m seeing in the The Dialogues:

  • Yelling. And I mean yelling that happens IN ALL CAPS because otherwise, MAYBE other people won’t KNOW how WRONG they OBVIOUSLY ARE.
  • People taking their pain out on one another. I see parents doing it because they feel stressed and abandoned and get to do it everywhere else in the autism world, and I see autistics doing it because they feel stressed and abandoned and never get to do it anywhere else in the autism world. On behalf of both parties, it hurts me to watch.
  • Accusations of ill-intent along the lines of “You’re just trying to derail the conversation,” as though accusing someone of derailing the conversation — rather than bringing the conversation back on point — isn’t derailing the conversation.
  • Lots and lots of sentences beginning with “You,” such as “You just refuse to understand” and “You need to park your privilege at the door” and “You have no right to be upset about whatever it is you’re upset about, because it’s irrelevant.”

Anyone here ever try to carry on a relationship in which both parties start every sentence with “you” rather than with “I”? It doesn’t go well. Telling the other person everything he or she has done wrong, over and over, instead of talking about its impact on you and what you want to see change, usually doesn’t get you very far. It’s quite cathartic, but in the end, it damages the relationship, and then there is repair work to do on top of the problems that were there in the first place.

  • People laughing derisively at each other, judging each other, attacking each other, and accusing each other of saying things they never said and meaning things they never meant.
  • People treating one another as walking incarnations of all of life’s injustices, rather than as actual people with feelings and thoughts and tears. It’s easy to take a swipe at an incarnation of life’s injustices. It’s quite a bit more difficult to do it when you realize that a person is standing in front of you.
  • People getting their feelings trampled underfoot on the road to — what? Making life better for all of us? Excellent. But there’s one little problem: I’m not all that interested in creating change with people who think that’s the way to go about it — for the simple reason that I fear for what the world will look like when we get there.
  • People being unable to acknowledge any wrongdoing, either because they’re oppressed and the wrongs done them are so much worse than what they’ve done to others, or because as long as the cause is right, who cares? So, unlike most people who seem to have moved on as though nothing happened, I’m still pissed as hell at what happened to Emily, and I’m still waiting for someone else to sober up and say, “My God, we’re so sorry. You didn’t deserve that.” And I can feel, in my bones, just how irrelevant people seem to think that is. Who cares about Emily when we’re talking about oppression?

I do. It’s not that I think that Emily is still hurting. It’s the failure to take responsibility that concerns me so much. If we can’t engage in self-reflection and mend things that are broken in our community, how can we have a prayer of mending a broken world?

I’m having memories of my days in Berkeley, when I’d go to gatherings about social justice issues, hoping to listen to a few speakers and have a reasoned discussion, only to watch people yell and punch holes in walls and talk about how it wasn’t such a big deal because people were suffering in the world. Yeah, the wall doesn’t suffer, but the people in the room who watch it happen do. It’s scary, it’s intimidating, and it’s not conducive to dialogue.

Now, I can hear the objections to everything I’m saying here: “Well, we’re oppressed. You can’t expect us to be civil and well-spoken about it. There is too much at stake. And besides, we’re angry. And besides, why don’t you talk about what we’re saying rather than about how we’re saying it?”

All I can say is that, in a protest march, or in a diatribe, you have to yell and say what you have to say, however you want to say it. And I share your suffering, and I share your desire to be loud about it, and I want change to happen right now, just as you do. I’m a member of two minority groups that have suffered bitterly for generations upon generations, so I can hardly be accused of not getting it.

But a dialogue involves something very different. A dialogue involves saying things in a way that other people can hear them. This is not an argument from tone. This is a realistic appraisal of how to work around people’s defenses and get them to hear us so that we can make change. We can’t get people to listen to us by telling them that we’re right and they’re wrong, over and over. They’ll either put up their defenses and start beating up on us in the same way, or they’ll go away altogether. Either way, we’ve lost much-needed allies.

When I look at history, I see oppressed people creating change by forming alliances with the majority, and by doing it in a way that takes the moral high ground. The civil rights movement finally had its day because Martin Luther King, Jr. invited white folk to join him in taking that moral high ground. You had people who had watched their loved ones lynched and raped, but they came together, in the spirit of peaceful dialogue and a yearning for justice, with representatives of the privileged class whose members had done the lynching and raping.

That’s what I keep hoping for: that we carry this forward with some discipline, some respect for the perspective of the other, and some trust that we can make change by being the change we want to see. But after the events of the past week, my sense is that we’re a long, long way from there.

© 2011 by Rachel Cohen-Rottenberg

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Impact, Intent, and Dialogue in the Autism Community

September 26, 2011 Rachel Communication, Community

This post discusses an issue arising from the Parent/Self-Advocate Dialogues that began last week on The Thinking Person’s Guide to Autism.

For those who haven’t been following the Dialogues, a rather contentious argument arose about a Twitter exchange between Rob, one of the participants, and Emily, one of the editors, in which it appeared to many people that Emily had ill intent. As it turned out, she did not – quite the contrary – and the ensuing conflict was based on a misintepretation. Given that Twitter does not allow for much in the way of nuance or explanation, a misinterpretation wasn’t all that surprising. Twitter probably wasn’t the best medium in which to attempt a conversation about a serious issue in the first place.

K over at Radical Neurodivergence Speaking has a great post up about the whole incident, with a very good discussion of why the larger social/emotional/historical context in which it happened made misinterpretation almost inevitable. If you aren’t familiar with the situation and want to have some idea of what the rest of this post is about, take a look at K’s piece.

I originally began my post as a comment on what K had written. But as I wrestled with my feelings about the situation, I began to see larger issues that I want to explore here.

—

In the context of a world in which autistic people are so often rendered invisible, I understand why people interpreted Emily’s words as they did. We’re used to people not listening to us, and when it appeared to be happening again, people drew conclusions based on life experience. I completely understand it, and for anyone who doesn’t, I hope that K’s post makes the reasons clear. From the outset, I did not interpret Emily’s words the way that others did, but I understand why other people arrived at a different conclusion.

That’s not what troubles me.

What troubles me is that, despite Emily being a respected member of the community with an impressive track record on advocacy issues, the rush to judgment about her intentions was so swift. I watched it happen in the comments section to the Dialogues, and I kept wondering when someone was going to say, “You know, given that it’s Emily we’re talking about, we must be missing something. Perhaps we should ask for clarification.” Instead, I saw commenters looking at the Twitter exchange and then drawing very pejorative conclusions about Emily’s intent – that she was attempting to derail dialogue, to silence autistics, to encourage dismissal, and so on – without asking what her intent actually was, and without considering the fact that the conclusions being drawn and her track record were so much at odds.

In the context of dialogue, the failure to ask about intent worries me, because dialogue involves a willingness to ask questions in order to discern intent. Without that, a crucial part of the picture is missing, and dialogue becomes unproductive.

In fact, a failure to ask about intent ultimately discourages dialogue. Because of the pejorative things said about Emily’s intentions, it’s taken me days to post my feelings about the situation. For the first time since I’ve started blogging, I’ve felt inclined to stay silent about my feelings regarding an issue I care about. And if someone like me could feel that way, I can only imagine what people new to the community must have felt while they were watching the whole situation unfold.

As I’ve struggled with speaking to the issue, I’ve been asking myself questions along these somewhat worrisome lines: What will happen if people misread my words as an attack? What will happen if they think I’m dismissing the pain involved for everyone? What if they think I am assigning ill intent to them?

Will they ask me to clarify my intent? Will they try to understand where I’m coming from? Or will they assume ill intent where none exists?

It’s taken me four days to say: I hope they’ll read carefully. I hope they’ll consider who they know me to be. I hope they’ll ask if something is unclear. But I really can’t worry about that.

—

I know that this whole debacle came out of the pain that so many of us carry, and out of the injustices we’ve suffered. I do. When people read words that appear to be dismissive – even if they are in no way intended to be dismissive – the impact is going to be profound. That reality has to be part of these conversations. And what also needs to be part of these conversations is an understanding that it’s often very ill-advised to draw a conclusion about intent based on impact, especially in a dialogue. When that conclusion is wrong, it can cause a lot of hurt. As a community, we have a responsibility not just to explain why these misinterpretations happen, but also to acknowledge the impact on the person who was misinterpreted.

Emily had people saying some pretty awful things about her thoughts and intentions last week. She’d have to be made of teflon not to feel hurt while it was happening. So while it’s crucial that we talk about the impact of power and privilege and context and silencing and dismissal on us, it’s also crucial that we acknowledge what happens to individuals at the epicenter of these blow-ups, and about the ways in which these kinds of things can fracture a community and discourage dialogue.

So I’m doing now what I should have done in the Dialogues thread last week: I’m speaking up. I hope that people will understand that I’m doing so because I care about the future of dialogue in our community, and because I care about our community being a safe space. If this sort of thing can happen to Emily, it can happen to any one of us.

© 2011 by Rachel Cohen-Rottenberg

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Guest Post Series: Widening the Disability Perspective

September 23, 2011 Rachel Guest Posts

This month, I’m honored to publish a guest post from William Peace, a cultural anthropologist and writer interested in disability studies, body art and modification, and the history of anthropology. If you haven’t happened upon his blog, Bad Cripple, I highly recommend it.

Although Bill’s disability is visible and mine is not, his guest post touches on a number of issues with which I deeply identify. I think you will, too.

Identity and Disability
William Peace

I am a crippled man. I am a proud man. Hear me roar. Yes, I am ripping off the 1970s women’s movement song “I am Woman” by Helen Reddy and Ray Burton. Being a crippled man is an integral part of my identity. I cannot imagine life without paralysis. I never think about a cure to spinal cord injury, walking or running. Such thoughts are for others; people who without question accept that walking is the only means of locomotion. As a result of my paralysis and wheelchair use I am a member of a minority group even if the Supreme Court does not agree with me. I am often asked about cure, about walking, about wheelchair access, about sex, about work, about family. These questions make one thing clear–my privacy is not respected. I am not respected. I have a stigmatized identity. Hence, well meaning people ask, “Wouldn’t you want to be cured?”, or “Wouldn’t your life be easier if you were not paralyzed?” These types of questions are so far off base it boggles my mind. The people that ask me these questions never think why. Why is life with a disability such as paralysis difficult? The answer is obvious to people with a disability. Our physical and social environments are designed for bipedal people who learn at a prescribed rate. Deviate from the norm in American society and you will see the dark underbelly of a puritanical society. I know all about this because I have seen it for the last 30 years.

I am intimately familiar with the concept of identity. Identity is of central importance to anthropologists. It is a powerful organizing presence in all cultures. When we think of identity, social structures that come to mind include ethnicity, nationalism, religion, sexuality, gender, etc. When we seek to protect a given culture or minority group the underlying belief is that people have identities and that their identity is a vital part of their concept of self. This is a given when it concerns religion, gender, nationality and sexuality to mention but a few types of identity. No one would accost a woman and ask would you like to be a man? No one would dare ask a black man if he ever wished he was white. In sharp contrast people, strangers, feel free to ask me if I wished I could be cured. The idea I consider disability to be part of my identity simply does not cross the mind of others—non-disabled others. Disability for the vast majority of Americans is thought to be a medical or architectural problem—one that was solved a long time ago when the ADA was passed into law. This is dead wrong. Prejudice is alive and well. I experience it, as do all other people with a disability.

So why is identity so important to people with a disability? Disability identity is important because it will lead to social debate and careful consideration of disability well beyond the narrow way it is currently perceived. In the Foreword to Simi Linton’s ground-breaking text Claiming Disability, Michael Berube noted:

If disability is not understood in terms of complex, overdetermined and sometimes tenuous relations to identity, it will not be sufficiently incorporated into the curriculum of the liberal arts or into the definition of what constitutes the “humanities.” And if we do not imagine “disability” as a broad general subject that shapes the humanities, it is all the less likely that we will manage to imagine disability as a broad, general subject that shapes public life and public policy.

Like most people, disabled and non-disabled, I did not always think this way. Disability is after all the only minority group you can join—and not by choice. What connects all people with disabilities is a shared identity and the routine and unacknowledged violation of our civil rights. Disability scholars call the prejudice people with disabilities encounter ableism. While we people with a disability certainly understand ableism is a form of oppression, when we confront others and assert ourselves, we are classified as bitter. I am routinely told I have a “chip on my shoulder.” When told this, I sarcastically agree—hence I identify myself as a bad cripple—one not afraid to assert my civil rights. If this puts a chip on my shoulder, then I plead guilty. This takes some guts; we people with a disability are expected to be subservient, content with what society is willing to dole out for us. When we do not adhere to our prescribed role, our presence is not wanted. The type of disability is not relevant—it is a variation on a single belief that is deeply ingrained in schools, businesses and our culture. One person has railed:

People have a great deal of prejudice about autism & other developmental disabilities. I’ve been bullied out of activities and classes because I am autistic; I’ve been discouraged from even trying others. People and professionals who are familiar with autism but unfamiliar with me assume that I am less capable of many things I am—usually in a patronizing & insulting way. It is often assumed that I cannot be good at some of my hobbies and simultaneously assumed that I have some sort of magic autistic savant skill. That part of being autistic really sucks—having to prove my humanity & my individuality over and over and over again is exhausting (Timetolisten.blogspot,com).

I would venture to say every person with a disability can relate to the quotation above. I have repeatedly been lauded for the ordinary and told I am amazing. Conversely, I have been told I cannot do many ordinary things. This is nothing short of dehumanizing. It is also why all people with a disability should embrace an identity closely linked to disability with one proviso: disability identity is not defined by a given disabling condition or body centered feature. Identification here is not a medical diagnosis or arbitrary label. With an identity tied to disability it is logical to conclude our experiences are similar. The prejudice we encounter is socially sanctioned and deadly. With this realization I shudder to think of how many dreams and ambitions have been crushed. No one would tell a non-disabled child he or she cannot do something. That is an educational anathema. But this is exactly what happens to people with a disability.

Frankly, I have had it. I will not tolerate being told what I can and cannot do. I know with an identity tied to disability, by being proud and disabled, I can resist and thrive.

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Unwarranted Conclusions and the Potential for Harm: My Reply to Simon Baron-Cohen

September 19, 2011 Rachel Ableism, Alternative Theories of Autism, Critiques of Autism Theories, Empathy, Theory of Mind (ToM)

I want to thank Simon Baron-Cohen for taking the time to respond, in his September 10th post on the Autism Blogs Directory, to one of my early pieces on autism and empathy. I am very gratified that he did so.

Unfortunately, I found his response quite troubling. While there are a number of points that concern me, I’m going to focus on the aspects of his piece that speak directly to the most pressing issues.

The problematic nature of the test instruments

My first concern is that while Simon points to studies proving empathy and theory of mind deficits in autism, he does not address any of the many valid critiques of the test instruments themselves. For example, he chose to respond to a piece on the Empathizing-Systemizing (E-S) theory that I wrote over two years ago, when I was newly diagnosed and at the very beginning of formulating my thinking on the issue, rather than speaking to my recent systematic critique of the numerous flaws and biases in the Empathy Quotient (EQ) test or to my earlier piece on the Theory of Mind test. Both critiques discuss serious problems with the primary assessment tools on which his conclusions are based. If he would like his work to be better informed by the ways in which autistic people experience our sensory and emotional lives, and by the ways in which the test instruments fail to take account of the complexity of our experiences, I invite him to read both pieces, along with numerous other critiques and personal accounts on the Autism and Empathy website.

Simon also fails to mention that the false belief test used for the past 30 years to assess theory of mind in autistic children relies upon verbal interaction and language processing, areas in which autistic people are understood to have serious difficulties. In fact, in a 2005 paper, Morton Ann Gernsbacher and Jennifer L. Frymiare point out that the syntactic form of the questions posed by the test is one of the most complex in the English language. The authors go on to cite a study showing that performance on false belief tests correlates with language ability in children with and without autism. In fact, when autistic and deaf children are given a false belief test administered visually rather than verbally, they score higher than non-autistic hearing children: “If one creates a false drawing task that tests theory of mind without reliance on language, one finds that children with autism and children with deafness actually outperform children with normal hearing (Peterson, 2002).”

The misleading nature of the term “cognitive empathy”

My issues with Simon’s work go far beyond the problematic methodology of the test instruments, however, and extend to his use of the term “cognitive empathy” to describe an inability to read and to interpret nonverbal signals. If, as Simon asserts, “people with autism are very capable of an empathic response” when those around us verbalize (or otherwise make clear) their feelings, then our difficulties lie not in the area of “affective empathy,” but in the area of what he calls “cognitive empathy.” By this reasoning, Simon’s theory of autism as an empathy disorder rests on the latter term.

To make clear the misleading nature of the term “cognitive empathy,” a brief summary of Simon’s definitions is in order.

In The Empathy Quotient: An Investigation of Adults with Asperger’s Syndrome or High-Functioning Autism, and Normal Sex Differences, Simon and his colleague Sally Wheelwright draw on a definition of cognitive empathy as “using a ‘theory of mind’ (Astington, Harris, & Olson, 1988; Wellman, 1990) or ‘mindreading’ (Baron-Cohen, 1995; Whiten, 1991).” In Theory of mind in normal development and autism, Simon defines the term “theory of mind” and specifically describes it as a core component of humanity that is impaired in 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)

In his response to my post, and in numerous other pieces of writing, Simon asserts that both theory of mind and cognitive empathy rely upon an ability to see and to read nonverbal signals. If a person can’t do so, but relies upon verbal language or another form of communication, then that person has an impairment in theory of mind and in the cognitive empathy that depends upon it, resulting in a deficit in “one of the quintessential abilities that makes us human.”

It’s my contention that calling a physical inability to see and to interpret nonverbal signals a failure of any kind of empathy is to make an unmerited interpretive leap. After all, people who are blind cannot see and interpret nonverbal signals — they rely upon spoken language and/or Braille text — and yet, to my knowledge, no one has alleged that blindness is a low-empathy condition. Blind people come to understand the mental states of other people through other means, just as autistic people do. And yet, for an autistic person, a problem seeing and interpreting visual phenomena — and the necessity of taking alternative routes to acquiring the information expressed by such phenomena — is the basis for defining autism as an empathy disorder.

Please note the double standard at work.

Making a processing disability an empathy disability

When it comes to reading nonverbals, some sighted autistic people report not being able to see the signals at all. Others, like myself, receive a great deal of information from the eyes and face, but cannot parse the signals separately or intuitively. Perhaps we are really talking about the same thing here; after all, if I can’t separate the signals, the net effect is that I can’t see them as signals in the normal sense of the word. In any case, in my own experience, the problem is that all of the information from the eyes and face comes in very quickly. And while I cannot translate any of the more subtle nonverbals and use them in real time, my affective empathic response is quite acute. So, while I always understand that something is up, I may not always be able to discern exactly what it is at that very moment.

My visual processing of nonverbal signals is exactly analogous to my auditory processing of verbal speech: if you put me in a sound-rich environment, in which multiple conversations are going on at once, I can physically hear the sounds and the vocal tones, but I cannot separate the words from one another in order to understand and respond to them. The message becomes garbled.

No one has ever suggested that, because of my difficulties with auditory processing, being unable to understand what someone says to me verbally in a noisy room is evidence of low empathy. But when, because of my difficulties with visual processing, I can’t understand what someone says to me nonverbally, it’s adduced as prima facie evidence of a condition defined by low empathy.

That is a most illogical and unscientific conclusion.

If I cannot see nonverbal signals or parse them in real time, that is the sign of a visual processing issue, not the sign of an empathy disorder.

If I have to devote nearly every ounce of processing energy I have to decoding the words someone says to me, and therefore cannot afford to divert it for receiving visual information from the person’s eyes and face, that is the sign of an auditory processing issue, not the sign of an empathy disorder.

If, when I go to the market, I cannot stop and ask after people’s welfare because I have to focus on getting my shopping done before the sensory overload becomes disorienting and painful, that is the sign of a sensory processing issue, not the sign of an empathy disorder.

And if, when bombarded by sensory and emotional information, I find myself unable to express my empathy in real time and respond in any kind of conventional way, that is the sign of an information processing and communication issue, not the sign of an empathy disorder.

To define any of these issues as the signs of an empathy disorder is to take a physical disability and raise it to the level of a failure of humanity.

Hurt feelings, oversimplifications, and The Science of Evil

Suffering is nearly always the consequence of ascribing an inborn dearth of humanity to any child born to two human parents. And this is why any assertion that autistic people are born with a deficit in a core component of humanity is so terribly, terribly troubling to me.

I’m not talking about someone hurting my feelings, as Simon implies. What I’m concerned about are ill-conceived definitions and unwarranted conclusions that have the potential to cause tremendous suffering for autistic people at the hands of the larger world.

So, when Simon takes processing and communication difficulties and makes them evidence of an empathy disorder, then I have a problem.

And when, in a post for the Autism Blogs Directory, his words do not reflect the manner in which he describes our capacity for affective empathy in his latest book, my concerns only increase.

Consider the following: In his September 10th post, he provides a chart to explain the way that he profiles autistics and psychopaths in his recently published popular science book The Science of Evil (entitled Zero Degrees of Empathy in the UK). The chart in his blog post shows psychopaths and autistics with profiles that are a mirror-image of each other: psychopaths are positive for cognitive empathy but negative for affective empathy (they can intuitively read how people are feeling, but they don’t care), while autistics are negative for cognitive empathy and positive for affective empathy (we can’t intuitively read how people are feeling, but once we understand that a person is upset, we’re upset, too).

However, the information on this chart does not accurately represent the autistic profile that Simon delineates in The Science of Evil. For example, in a matrix in the latter part of the book, one finds that the profiles of psychopaths and autistics are not mirror images of each other; psychopaths show the same profile as in the blog post, but the autistic profile is negative for both cognitive and affective empathy (Table 1: Distinct Profiles of the Empathy Disorders, 154).

In fact, in contrast to his statement in his post that “people with autism are very capable of an empathic response,” The Science of Evil is relentless in its portrayal of the autistic capacity for affective empathy as highly impaired. In order to illustrate the nature of Asperger’s Syndrome, for example, Simon introduces a 52-year-old adult named Michael, whose dream “is to live in a world without people, where he can have total control.” Michael not only fails to read nonverbal signals, but “does not know how to respond to someone else’s feelings,” even when they are explicit (99).

The book does not differentiate between Michael not knowing what to do and not having an affective response at all.

The book does not explore the possibility that Michael may have long since shut down his emotional responses because of severe empathic and sensory overload, fear, anxiety, shunning, loneliness, bullying, despair, and other life experiences common to autistic people.

The book does not explore the possibility that Michael dreams of being alone because he seeks to comfort himself, in the midst of acute difficulties to which the world is largely oblivious, with a fantasy of control.

The book does not explore the possibility that Michael systemizes to an extreme degree in order to exert control over an extreme intensity of empathic and sensory experience.

And the book does not provide the story of Michael as only one example of the complexity of response among autistic people. It presents Michael as representative. Nowhere does Simon narrate any scenario in which any autistic person shows any affective empathic response to the feelings of another person. In fact, he does the following:

1. He asserts, without qualification of any kind, that for people with Asperger’s and people with classic autism, “Other people’s behavior is beyond comprehension, and empathy is impossible,” placing us all on the zero end of the empathy scale (117).

2. He then attempts to redeem autistic people as “Zero-Positive” (rather than “Zero-Negative,” which is reserved for psychopaths) because our “empathy difficulties” are associated with “having a brain that processes information in ways that can lead to talent” (citing the work of the savants Daniel Tammett, Derek Paravicini, and Peter Myers), and because “Zero-Positive” individuals are responsible for innovations in technology, science, mathematics, and other “systemizing” fields (96, 106-107, 122). Of course, he thereby leaves out the vast majority of autistic people who have no savant gifts and no special talent for innovation in any field at all. Hundreds of thousands of us therefore lose the already dubiously redemptive “Positive” label.

3. He goes to great lengths to insist that people with Asperger’s develop a moral code not because we are informed by an empathic response to others, but only out of a drive to systemize. When others act unethically, he writes, people with Asperger’s leap to the defense of the injured party — not because we are moved by empathy for the other person, but because unethical behavior “violates the moral system” we have “constructed through brute logic alone” (emphasis mine) (123). In other words, we’re simply upset that the rules have been broken.

Of course, this explanation rather begs the question of why anyone without an empathic response to the difficulties of other people would construct a moral code in the first place.

4. He characterizes people with classic autism as viewing their parents as “nothing more than a vending machine” to serve their desires. He thereby places people with classic autism outside the field of both empathic and ethical response, calling them “Morality-Negative” (119, 154).

And then he asserts in a post on the Autism Blogs Directory, four months after the publication of his book, that people with autism are, in fact, “very capable of an empathic response” — an assertion that appears nowhere, explicitly or implicitly, in the pages of The Science of Evil, published on two continents, and reviewed by critics the world over.

When someone writes a popular science book that will be read by far more people than any post on any blog, and in that book fails to address the depth and complexity of autistic experience, then we have a number of potential problems on our hands.

This is not about anyone hurting my feelings. It’s about the perpetuation of stereotypes and oversimplifications that, in my opinion, have the potential for tremendous harm. Consider the possibilities:

Autistic people describe our empathic experiences in detail, only to be told that we have such low empathy that we are the last to know it.

Autistic people protest abuse and ill-treatment, only to be told that we can’t understand other people’s motives and intentions, much less respond to them appropriately.

Autistic people are treated without empathy because other people believe that we have none ourselves.

Autistic people face lives of substandard care, isolation, and abuse because we are considered to have been born without a core component of humanity.

Autistic people lose opportunities for love, for friendship, and for caregiving work because people believe that we are incapable of them.

Autistic people lose our sense of who we are because we have to endure a constant and unrelenting barrage of messages that tell us that we are something else.

No, this is not about hurt feelings. It’s about the lives of people with classic autism. It’s about the lives of people with Asperger’s. It’s about the lives of people all along the spectrum. And it’s about the vulnerability, the rights, and the potential suffering of hundreds of thousands of living, breathing, fully human beings.

© 2011 by Rachel Cohen-Rottenberg

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