Archive for June 29, 2011

Introducing the Autism and Empathy Website

To autistic people, autism parents, family members, friends, and supporters:

In light of the prevailing mythology that autistic people lack empathy, and in response to the damage that this stereotype does to our lives and to our psychological well-being, I’ve created a new website.

Autism and Empathy: Dispelling Myths and Breaking Stereotypes exists to undo the myths about autism and empathy that have stigmatized autistic people for so long.

It will feature writing by autistic individuals, by autism parents and family members, and by others who understand that autistic people, all along the spectrum, can experience the world in highly empathetic and sensitive ways. Telling our stories, describing our experiences, and speaking the truth in our own voices, we can break dehumanizing stereotypes and increase understanding.

I welcome all submissions, including previously published work. Please submit your piece or a link to your work to rachel@autismandempathy.com.

If you have a blog, help spread the word! Provide a link to the Autism and Empathy website, and post an announcement. Together, we can make a difference.

© 2011 by Rachel Cohen-Rottenberg

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On the Matter of Empathy

It’s an oft-repeated and erroneous stereotype that autistic people lack empathy.

When I hear another iteration of this myth, I have an immediate, visceral reaction that combines impatience at its perpetuation with a keen understanding of its power to wreak havoc on the lives on autistic people. When it comes to our ability to find partners, to form friendships, to be welcomed in community, and to find work — particularly in the helping professions — this myth can have a devastating impact. It’s one of the main reasons that so many autistic people remain in the closet, living their entire lives in fear of exposure.

Ironically, in the face of the myth of nonexistent autistic empathy, I have an intensely empathetic response. I intuitively recognize the potential for harm and suffering to millions of people, and I feel grief, anger, and a powerful need to speak to the issue.

Once my anger and my adrenalin rush subside, I’m able to take a good long look at where the myth comes from. I find that it derives, in part, from an oversimplification of what empathy means. The popular media likes to disseminate oversimplifications of all kinds, and autistic people often find ourselves stereotyped in ways that would be impossible if we lived in a culture in which asking the right questions — and listening to the answers — were considered of any value.

Unfortunately, we don’t live in such a culture, and so, even as I write, I am aware that my impact is limited. The people who read these words, and who are inclined to reflect upon them, will come away understanding something new. Those who never read these words, or who read them and dismiss them for their own personal reasons — well, there is little I can do to change their minds.

All I can do is to speak my truth, as clearly as I can.

So let’s look at the question of empathy. There are three types: cognitive empathy, emotional/affective empathy, and expressed empathy.

Cognitive empathy
Cognitive empathy has to do with being able to visually and intuitively read subtle nonverbal signals in order to understand what is going on in the mind of another person. It includes being able to read facial expressions, body language, and the emotions communicated by the eyes.

In general, people all along the autism spectrum have difficulty with cognitive empathy based on visual nonverbals. I certainly do. I can read some nonverbals, but the more subtle ones elude me, except when they come from a) other people on the spectrum, whom I seem to have no trouble reading at all, or b) non-autistic people with whom I have a relatively long acquaintance. With someone I know well, I can see the subtle signals, because I’ve gone through a process of learning about the person and being able to associate the signals with the person’s emotions.

When relating to non-autistic people, my process isn’t intuitive, but after my 53 years on the planet, it has become quite reflexive. For example, I can read my husband’s nonverbal signals relatively well. We’ve known each other for over ten years, and he takes care to verbalize his feelings as much as he can. Both the extended time we’ve spent together and his ability to verbalize result in my increased capacity to link the signals with their source.

In other words, like many autistic people, I’ve grown and learned over the course of a lifetime.

Emotional/affective empathy
Emotional/affective empathy is entirely different from cognitive empathy. It is what most people consider true empathy.

Emotional/affective empathy has to do with the emotional response triggered in the face of the experience of another person. According to recent studies (such as Markram and Markram’s 2007 The Intense World Syndrome: An Alternative Hypothesis for Autism, and Adam Smith’s 2009 The Empathy Imbalance Hypothesis of Autism), autistic people have extremely high levels of emotional/affective empathy. In the online world, there is a veritable treasure trove of writing by autistic people and our loved ones that bears out the conclusions of both studies.

The Markram study and the Smith study reflect my experience far more accurately than say, the work of Simon Baron-Cohen, who has never given any credence to the idea that the emotional/affective empathy of autistic people might exceed that of others. How sensitive am I? If a person next to me is suffering, I feel it as though the suffering were mine. If the person next to me is joyful, I feel especially happy. If I see a film in which a person is being shot, I immediately imagine the bullets tearing into my own body. I have read story after story by autism parents who say that their children cry when they see scenes of animals suffering; others say that their children can always pick up on all the emotions in a room. I share these experiences.

I can feel absolutely drenched in the emotions of other people, even when people are not expressing their feelings directly, and I feel those emotions very intensely. I can walk into a crowded room and feel all the emotions of the people there; being so empathic can be absolutely overwhelming. From what I understand, most non-autistic people do not experience anything close to that kind of empathy, but it’s a common experience for those of us on the spectrum.

How can I pick up all those emotions in the absence of reading the nonverbal signals? On some level, I probably register all the visual nonverbals, but I can’t parse them individually or respond to them in the way that a non-autistic person would. In other words, I can literally see them all — and they have a clear emotional impact — but I can’t read them in real time.

I also have a kind of intuition, a sixth sense about people that can never be measured in any objective fashion. As I’ve learned from hard experience, the only time that my intuition fails me is when I ignore it.

I’m also coming to recognize that I use another sense, one that is hyperacute and entirely overlooked in studies of how autistic people perceive the world: my hearing. I can read the subtle details of vocal tones very, very well, especially when people are using vocal tones that don’t match the content of their words. If a person is upset or angry, but is using words that seek to mask it in some way, I can tell right away. It’s as though I am hearing strands of music that are out of harmony.

My experience as a musician, in which I feel myself inside the emotion of the music and feel the power of the music inside me, extends to hearing such signals as vocal tones, or the relative force with which someone brings his or her hand down on a table, or how quickly a person is walking, or with what determination an individual’s feet hit the floor. It’s an intuitive way for me to gauge what is going on in my environment, especially regarding the moods of other people. And because I don’t filter sound well, and have very little ability to put any sound in the background, I miss nothing when it comes to my auditory experience.

I am quite certain that my hearing enables me to read the subtleties of emotional states in other people, because when I go out into the world and prevent auditory overload by wearing earplugs, I avoid emotional overload as well. It’s a blessed relief to be able to go out into public and hold people’s emotions at a distance, let me tell you.

Expressed empathy
Expressed empathy has to do with responding to the feelings and thoughts of another person. Clearly, it’s not enough to feel empathy. It has to be expressed so that the other person knows that you understand and feel compassion.

This type of empathy is almost entirely a cultural construct. In some cultures, when you see a person in pain, you give a hug, or verbalize your concern, or invite the person to have a conversation. In other cultures, simply being a quiet, compassionate listener is considered appropriate.

Personally, I tread fairly carefully about how I express my empathy, because in a multicultural, neurodiverse society, I am sensitive to the fact that a response that might work for one person might not work for another. Given my own sensory and emotional sensitivities, I make no assumptions about what another person might need. So, for example, instead of rushing in and giving a person a hug, I will ask if the person would like a hug. This kind of concern, I think, shows a fairly sophisticated level of emotional empathy, although I admit that it will sometimes leave me stymied as to what to do, which is ultimately unhelpful to the person concerned.

In general, I tend toward the practical. I will begin by verbally acknowledging the other person’s feelings; I grew up when doing so was simply considered good manners, and being drilled in good manners as a child has greatly helped my level of conventional empathetic expression. But I feel most comfortable rolling up my sleeves and getting to work. Does the person need me to do some grocery shopping? Bring a meal over? Help with chores? Watch the kids? To me, words aren’t enough. They have to be followed up with action.

As far as conventional measures of expressed empathy go, I am fortunate in being verbal. For many autistic people who have difficulties with verbal communication, responding in culturally acceptable and conventionally understandable ways is impossible. And for autistic people who are even more sensitive than I am, there are limitations to being able to respond at all, because most environments generate such a high degree of emotional and sensory overload that withdrawal becomes a necessity.

And yet, if you pay attention, you will often find that autistic people express empathy in a myriad of ways, many of which are quite unexpected in any conventional sense but reflect true emotional understanding. For example, I recently read a piece by an autism parent who said that, though her child has difficulties with reading nonverbal cues and understanding social communication, he will come over to her when she is upset and say, “I love mama.” He knows what she is feeling, and he expresses his care and concern. It’s enough to melt your heart.

And of course, nonverbal autistic people who can express themselves in text often show great responsiveness to other people and a keen sensitivity to other people’s feelings.

One difficulty with much autism research is that it privileges conventional experiences and expressions of empathy, and considers non-normative expression an impairment. It begins with a definition of cognitive empathy as being able to visually parse nonverbal signals, rather than being able to hear signals, intuit them, or see them all at once; it defines emotional/affective empathy without the merest consciousness of the extreme levels of emotional sensitivity that many of us experience; and it uses culturally constructed norms of empathetic expression as a measure of what is true and right.

Of course, no test can measure the kind of emotional empathy that many autistics experience. I have started training as a personal care assistant to a child with multiple disabilities. What test can possibly measure the ways in which my heart and soul flow outward to him? What test can measure the level of attentiveness, of concern, of love that I feel for him? What test can pick up the sheer happiness it gives me to care for him? Who can measure how much I respect him, and how clearly I see the human soul inside him?

No test, no research, no science can prove love, or measure awareness, or gauge emotional sensitivity, especially when that sensitivity is literally off the charts. Unfortunately, in the absence of a scientific test, many “experts” spend no time at all listening to the experiences of the people they purport to understand. They listen to other professionals, they read medical journals, and they go to conferences, but how many of them listen to the life experiences of the people they’re researching? Not many. Those who do should be held up as role models.

And, unfortunately, too many lay people look to credentials as opposed to experience when it comes to understanding non-normative conditions. Recently, in response to one autistic person’s upset at mainstream theories of impaired autistic empathy, an autism parent said that the experts should know all about it, since they’ve been studying the issue for years. And those of us who have lived it for even longer? If we were talking about the difference between a non-Jewish scholar of Judaism and a practicing Jew, most people would say that the practicing Jew would be the expert on Judaism. And yet, autistic people are rarely accorded this level of respect.

A refusal to listen to our experiences and to be sensitive to the real-life consequences of pervasive stereotypes shows a problematic relationship with empathy, to put it mildly. In the midst of this lack of true autism awareness, any assertion that autistic people lack empathy is nothing less than a textbook case of the pot calling the kettle black.

© 2011 by Rachel Cohen-Rottenberg

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Miscellaneous and Sundry

My life has been very busy of late — in very good ways. I thought I’d bring you all up to date.

Since coming through the long Vermont winter, I’ve been spending a great deal of time outdoors, much of it spent gardening. Over the past couple of years, Bob and I have been preparing some garden space on the north side of our house. We let the fall leaves remain on the beds to suffocate the weeds, and we added a lot of goat manure as fertilizer. This spring, I decided that it was time to start planting, so we went out and got mountain laurel and dogwood bushes; raspberry, gooseberry, and honeyberry plants; and an apple tree with four different varieties grafted together. Everything is thriving! Plus, I’ve been planting new flowers, keeping everything weeded, adding more herbs to our herb garden, and tending the vegetables that Bob planted on the south side of the house.

There are very few things I love better than going to a garden store and coming home with new flowers to plant, and I’ve been having a great time with it. I love being outside, and I’m determined to spend as much time at it as possible before it gets too cold to be enjoyable.

I’ve been feeling so good of late that I decided to go back to work part-time. So, in addition to serving as the copy editor for The Commons, I’ve started training to work as a personal care assistant for a little boy with multiple disabilities who lives right in my neighborhood. I did an online search for personal care assistant positions in Brattleboro and Keene, and I ran across the listing for the job on the Keene State College website. It was amazing to find it, because it turns out that his parents used to live in our house before us! As soon as I saw the listing, I recognized the name. And even more incredible? The little boy was born right here in our front room — where I’m sitting right now! Once I’m trained, I’ll be able to care for him at his house and at mine. He’s a sweet little boy, his moms are friendly, down-to-earth people, and his younger brother has a smile to melt your heart.

In addition to my jobs, I’m hard at work on two new books. One is a sequel to The Uncharted Path; it will cover all the ways that my life has improved over the past two years and will tell the story of how I got there. The other is an anthology of poetry and prose by autistics over 35, which I’m working on editing. I’m hoping to make a lot of headway on both before the fall, because I’ll be starting a part-time Master’s program in History and Culture at Union Institute and University. It’s a fully online program that will take me three years to complete. I’ll be putting together a curriculum in Disability Studies.

I love the fact that the program is online for many reasons, not the least of which is that I’ll be able to continue it when I go out to visit Ashlynne in Santa Cruz next year. I’m planning on an extended stay from late January to late March, which will have the dual effect of allowing me to see Ashlynne on the west coast and making it possible for me to escape the winter on the east coast. When I get back, it will be spring!

So that’s the news from here. Life is good. I hope all of you are well and thriving.

© 2011 by Rachel Cohen-Rottenberg

Interview Today at Achieving Extraordinary Success

I’m honored to be featured today in an interview on Robert Hickman’s Achieving Extraordinary Success.

I’d love it if you’d come by and add your comments to the conversation!

Music and the Positive Side of Auditory Processing Disorder

Most of you know my challenges with my auditory processing condition: difficulties filtering sound, fatigue when trying to carry on a conversation with too much ambient noise, words getting jumbled in the midst of too many competing conversations, processing delays deriving from the visual nature of my hearing, and so on.

In general, sound always feels very close to me. If I’m in the midst of very loud sound, such as the loud rock ‘n roll music they play at the local pharmacy, I literally feel as though the sound is inside me, and as though I am inside the sound. It’s exhausting. I can’t concentrate, and it takes my nervous system some time to calm down afterwards.

Since auditory processing has been my greatest challenge, I’ve been thinking lately about whether there is an upside to my condition. Certainly, in another culture, having acute hearing would be a plus. I’d undoubtedly be the first to hear the tiger approaching the village, or to perceive some other sign of impending disaster. But in a noisy culture like our own, I hadn’t been able to see much benefit in it.

And then I started thinking about my relationship with music.

It’s not something I’ve talked about a lot, perhaps because I take it so much for granted. When I was a child, I was a classical pianist. I didn’t just play the piano. I was a pianist, performing in recitals in Boston and playing in statewide piano contests, one of which, to my great surprise, I actually won. I began playing when I was eight years old, and I was told right away that I had a lot of talent.

It wasn’t that I was more technically proficient than the next person. It’s that I was musical. I felt the music, from the inside out.

Back then, I couldn’t see what the big deal was. To me, it all came naturally, and I could never understand the fuss. But now I think I do. I had the same experience back then that I have in the pharmacy with the loud rock ‘n roll music — the music was inside me, and I was inside the music. The only difference was that the music was classical, and that the sound of the piano thrilled me. The melodies, the harmonies, the timbre, the volume — all of them were a delight to my auditory system.

I used to play Chopin and cry. I used to play Beethoven and feel as though I were communing with his spirit. It was a complete physical, sensory, and emotional experience. It took me over and spoke to my soul. It resonated through me.

As a child, of course, I thought that everyone experienced music that way.

I stopped playing the piano because I became very stressed out by all the performing. I was an extremely shy child and received no guidance for how to handle the pressure. Performing brought with it perfectionism, and perfectionism created pressure, and pressure ultimately created a lack of enjoyment.

So I turned to singing. People have told me that I have a good singing voice, but I’ve never felt that I was particularly talented as a singer, so there has never been any pressure involved. I just enjoy it, and other people seem to enjoy it, too. As an adult, I’ve mainly sung Jewish liturgical music — first as a prayer leader when the rabbi at my local synagogue was on sabbatical, then as an assistant when my husband was the spiritual leader at my next synagogue, and then as a lay rabbi when my husband and I led our own services some years back. I’ve sung at weddings, life-cycle events, and weekly services.

Whenever I sing, whether the music comes from another culture or my own, I am in the music, and the music is in me. I am in the history, the culture, the laughter, the sorrow, and the struggle of the people who came before. All of it takes up residence in my body, my mind, and my soul.

I’ve struggled with whether I’d want my auditory processing condition cured. I’ve decided that I wouldn’t. I’d lose the gifts along with the difficulties. I’ve adapted quite well to the difficulties, and the gifts are an essential part of who I am.

© 2011 by Rachel Cohen-Rottenberg

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I Am Now the Mother of a High School Graduate!

I can’t believe it. I really can’t. It was just yesterday that I had that liberating experience of leaving high school behind forever, and now, my daughter has just graduated. How can she have grown up so quickly when I’ve hardly aged at all? It’s a mystery.

But grow up she has, and yesterday, she graduated in a beautiful outdoor ceremony at her small, rural school. Her graduating class consisted of only 15 students and, in keeping with tradition, each of them got up to give a short speech. Here is a photo of Ashlynne speaking:















And here is a photo of Ashlynne listening to the other speeches (and looking beautiful besides):


















For her graduation, her aunts, uncle, grandma, and cousin from her dad’s side all came up from Connecticut. I had been very apprehensive about seeing them again — it had been 10 years since the last time — but everyone was very friendly. Some friends of ours also came to wish Ashlynne well, including her best friend’s mom, who made her an amazing 15-foot Doctor Who scarf, knitted to specification to match the scarf worn by the fifth Doctor:


















And then, of course, there were the proud mom and stepdad:


















And the very, very, very happy graduate:


















© 2011 by Rachel Cohen-Rottenberg