Archive for Empathy

From Empathic Response to Emotion to Cognition: An Illustrated Journey

August 3, 2011 Rachel Empathy, Modes of Thought

I have a new therapist whom I like very much. She is an Asperger’s specialist and teaches at one of the local colleges. She has a lot of respect for me and understands disability issues far better than any therapist I’ve ever met.

We’ve been talking lately about my biggest challenge, which is my tendency to be an unshielded empath. Being an empath can be a great gift, when I am able to channel it well, and being an unshielded empath can be a great help in certain situations, such as when I am entrusted with the care of a child. But it’s quite distressing when I feel myself the recipient of misdirected hostility or any form of creepiness; and feeling all the conflicting emotions in a crowded room is not the most enjoyable experience, either.

I’ve gotten better at shielding as I’ve grown older, but much of the time, I have a strong empathic response before I even consciously realize what’s happening. It’s as though a person’s energy becomes part of my atmosphere. When that happens in any kind of negative way, I need to take care of myself while the whole thing plays out.

In the past, the therapists I’ve worked with have all talked about the necessity for developing my shielding. But my new therapist understands that shielding will only get me so far. When the energy slips in before I even know it, putting up a shield after the fact is irrelevant. And certainly, the level of shielding required to keep out everything I need to deflect would be so thick that it would numb me out and completely alienate me from other living beings. That would be bad.

So the question is not “How can I better shield?” but “How do I care for myself when I’m having an intensely empathic response?” I’ll lead you through the process of how I experience these things, noting along the way the new things I’m learning.

Consider the following scenario, which is a composite of various things that have happened to me in my life.

I’m sitting on my porch on a beautiful summer day. The flowers are in full bloom. The sun is shining. All is well with the world, and I’ve got nothing but love in my heart for my fellow human beings:

 

 

 

 

 

 

 

And then, someone comes strolling down the street and into my idyllic moment — someone with, shall we say, a low level of respect for women. And, as he is strolling down the street, he decides to throw some very creepy energy in my general direction. Before I even begin to consciously register what’s happening, here’s what has become of my otherwise beautiful, sunshine-y day:

 

 

 

 

 

 

 

 

 

I feel as though an oppressive weight is bearing down on me. I am annoyed. I am perplexed. Then, I notice that the guy who has decided to mess up my idyllic moment is wearing the following t-shirt:

 

 

 

 

 

 

And while I am still registering the full impact of his attire, he says to me with a leering grin:

 


 

 

 

 

If I happen to be in touch with my deeply outraged inner feminist, I might come up with a snappy rejoinder:

 

 

 

 

 

 

 

 

 

More than likely, however, I will have gone past the point of empathic response into pure emotion, and as such, I will find it somewhat difficult to find the proper words. I will feel so disgusted, so depressed, so upset, so anxious, and so angry that the inside of my head will look rather like this:

 

 

 

 

 

 

 

 

 

At this point, I rush inside the house, throw all the locks, hyperventilate, and begin stimming like crazy. First, I pace up and down:

 

 

 

 

 

 

 

 

 

 

Then, I rock:

 

 

 

 

 

And hand-flap:

 

 

 

 

 

 

 

And put things in order:

 

 

 

 

 

Now, I would like to note that my new therapist has recently given me two very important pieces of information that I find very helpful in this stage of the process:

a) Emotion always precedes cognition. Being someone who feel things acutely, I find that to be a very helpful fact. It means that it’s going to take me a bit longer than the average person to get through the emotion. It also means that when I get to cognition, I will analyze the living hell out of everything.

b) Tony Attwood says that when you’re in a state of high emotion or upset, it’s important to get your heart rate up. I’d never thought of this before, but it makes sense. In fact, it may be what stims like pacing, rocking, hand flapping, and organizing my entire house are all about.

The important thing is to take care of myself in the midst of the upset. So, to get my heart rate up, I will finish stimming and go out for a very brisk walk — so brisk, in fact, that I reply rather tersely to any friends and neighbors I might meet on the way:

 

 

 

“Big hurry. Bye.”

 

Ultimately, I walk with such determination that my friends and neighbors may be somewhat taken aback:

 

 

 

 

 

 

 

Finally, though, I arrive at the moment in which emotion subsides and cognition takes over. At this point, I begin analyzing the hell out of the creepy situation:

“I wonder whether his mother had low self-esteem. Was her father a violent alcoholic? Did she have a distorted body image? Or was she simply a victim of the misogyny that flows like a river through our culture?”

“Patriarchy sucks.”

“How the hell can he expect to get a date with a T-shirt like that? It makes absolutely no sense.”

“Perhaps there are women with low self-esteem who actually like T-shirts like that???”

“Perhaps he’s very bored. I should probably have some compassion for him.”

“Perhaps he’s very lonely. I should probably have some compassion for him.”

“Of course he’s lonely. He wears offensive T-shirts.”

“Okay, so what he said and did has nothing to do with me. It’s all about him. This I know.”

“I will make a note to discuss this episode with my therapist.”

“I will also write about it on my blog. Yes. That is exactly what I shall do.”

And then, once I’ve thought things over enough, I generally decide to move on and start thinking about other more pleasant things.

Like Idris Elba in The Wire:

 

 

 

 

 

 

 

Or Idris Elba in Luther:

 

 

 

 

 

 

 

Or Idris Elba, in general:

 

 

 

 

 

 

 

And then, I’m happy. See how easy?

© 2011 by Rachel Cohen-Rottenberg

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Cognitive Empathy at the Dinner Table

July 12, 2011 Rachel Empathy, Marriage

I’ve long felt that everyone has difficulty with cognitive empathy and perspective taking when it comes to minds that work differently from their own. A couple of weeks back, I had an interesting experience along these lines.

At the dinner table, I asked my husband Bob the following question:

Do you think I’m odd?

Now, if you’re on the spectrum, you probably realize that I asked the question because I wanted to know what he thought. If you’re not on the spectrum, you might wonder whether the question were a setup, along the lines of Do you think I look fat?

My husband, who is neurotypical, was absolutely stymied. Now, please understand that he is a very empathetic man in every sense, and that he is also very socially adept in conventional ways. He can read most people extremely well. He’s very sensitive. He’s the sort of person who can listen to you and make you feel like you’re the only person in the room. He can also can walk into a large social situation and chat it up with anyone. I’m often in awe of his social graces.

But when I asked him the question, he hesitated. He looked very uncomfortable. In fact, he had a look on his face that I recognized immediately. It’s the one that I’m sure I have on my face in most social situations. It was as though he were thinking about all the possible ways he could respond and couldn’t figure out which one was the right one.

I felt a pang of recognition.

It was very clear to me that he wasn’t able to figure out by my facial expression, my body language, my nonverbal cues, or the look in my eyes where I was coming from. So I decided to help him out in a way that I wish more people would help me out: I told why I’d asked the question.

“Honey,” I said. “I’m asking you a straightforward question to which I want a straightforward answer. I’m interested in how you see me.”

I could see he was still stuck. His neurotypical brain was saying, “I really have to finesse this somehow.” And the part of him that knows that I’m nothing if not direct was thinking, “Okay, I should just be a mensch and answer the question.”

So I helped him out again. “Really,” I said, “you must know me well enough by now to know that I don’t ask a question to which I don’t want the answer.”

He seemed relieved, and he said, “No, I don’t think you’re odd. But I do think you’re different.”

I found that helpful. The thing is, he couldn’t figure out why.

We talked more about it the next morning. He was still curious as to why I’d asked the question. Our ensuing conversation was a crystal clear example of the fact that like minds understand like minds, and that my experience of other people is very different from his experience of other people:

Bob: “Why do you want to know what I think of you?”

Me: “Because I’m interested.”

Bob: “But what does it matter? My opinion is purely subjective. It doesn’t say anything essential about you.”

Me: “Oh, okay. Let me clarify. I wasn’t asking you to tell me something essential about myself. I was asking what you thought.”

Bob: “I don’t understand that. You’re the only one who knows whether you’re odd or not!”

Me: “You’re right. Inside myself, I feel perfectly normal. After all, I’ve always been me. But I’m not always able to read how other people see me, because I don’t think like they do, and your opinion helps me imagine how another person might view me. In other words, I’m information gathering.”

Bob: “Okay. I see. That makes sense.”

Me: “I’m glad you understand now.”

Please note the sheer number of words expended to explain my state of mind and where I was coming from. He could not tell until I verbalized it.

Sound familiar? I thought so.

The way I see it, everyone has difficulty empathizing with experiences and ways of thinking that seem foreign to their own.

It’s not an impairment. It’s just called being human.

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A New Blogger on the Block

July 6, 2011 Rachel Empathy

I’ve just discovered a new blog called From Inside the Heart. It’s written by Miranda, a teenager with Asperger’s, and it features heartfelt writing and keen insight.

Miranda has been so kind as to write a piece especially for my new Autism and Empathy site. The post, Possessing But Not Expressing, is up today. I hope you’ll come by to read and to share your thoughts.

Welcome to the autism blogging community, Miranda!

© 2011 by Rachel Cohen-Rottenberg

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Introducing the Autism and Empathy Website

June 29, 2011 Rachel Empathy

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

June 25, 2011 Rachel Ableism, Alternative Theories of Autism, Communication, Critiques of Autism Theories, 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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PBS to Autistic People: If You Can Speak, We’re Not Listening

April 27, 2011 Rachel Ableism, Disabilities, Empathy, Marginalization, Self-Advocacy

On an April 26 NewsHour segment, Robert MacNeil fielded several viewer-submitted questions regarding his Autism Now series. Among other things, Mr. MacNeil was asked why he had not made visible the lives of autistic adults all along the autism spectrum, and why he had not invited autistic people to share our experiences and our concerns.

His answers were, in a word, disgraceful.

In the entire six-part series, Mr. MacNeil talked with only one autistic person. He asked Zach Hamrick, a young man with autism, about his job. Here is the exchange, in its entirety:

Robert MacNeil: Almost finished?
Zach Hamrick: Yes.
Robert MacNeil: Do you like the job?
Zach Hamrick: Yes.
Robert MacNeil: Do you find it easy, or is it hard?
Zach Hamrick: Yes.

Needless to say, asking an autistic person basic questions that require one-word answers, for a total of ten seconds, on a program that extends over six nights, does not even begin to address the nature of our lives. And so, I was very interested in seeing how Mr. MacNeil would handle questions about having excluded us from the program.

The interchange on the NewsHour segment took place between Mr. MacNeil and correspondent Hari Sreenivasan, with Mr. Sreenivasan forwarding the questions, and Mr. MacNeil supplying the answers. Two particular sets of questions caught my attention.

First, Mr. Sreenivasan asks, “[H]ow did you choose the stories that you did? And what else do you wish you could have done?”

Mr. MacNeil replies, “We didn’t talk about adults living now with autism, which is a very interesting story, and what their lives are, how they work, where they live, what kind of support they need.”

He considers our lives “a very interesting story” — an outsider’s perspective, par excellence. It’s as though we are a fascinating anthropological research project, rather than people, with basic human needs, in the here and now.

He continues, “We did concentrate on those about to become adults. And if anybody is interested in this and wants to read the transcript of the interview with Peter Gerhardt of the McCarton School in New York who is an expert on this, it’s really fascinating on what he envisions the lives of adults can be and should be.”

Yes, let’s talk to a non-autistic person who is an “expert” on what our lives can and should be, rather than to autistic people — who not only know how our lives can and should be, but who also know how they actually are. Why Mr. MacNeil feels the constant need to sidestep us in this way, to talk to other people about us, and to direct people to speak with those who “envision” our lives, rather than to those of us who actually live them, is beyond my capacity to fully understand. For a journalist whose only aim should be to uncover the truth, continually ignoring the primary source of that truth violates all journalistic standards, as well as basic common sense.

Rest assured, though, that things only go downhill from here. In forwarding another concern from a viewer, Mr. Sreenivasan says: “There’s a comment from John Horton, who writes in and says: ‘I think an adult with autism should have been included on the roundtable. They’re talking about them but not to them.’”

Mr. MacNeil’s response is so appalling, so illogical, and so dismissive that it will take me awhile to untangle all its implications.

He begins by saying, “Well, perhaps he’s right.”

Perhaps? It’s as though the question of interviewing the subjects of his series had never occurred to him before.

And he continues, “We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it.

But they speak for themselves. And we didn’t see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism.”

Oh, God in heaven, where to begin?

Let’s begin by discussing the urgencies that attend the lives of autistic adults, shall we? Unemployment rates for autistic adults are skyrocketing, and services for developmentally adults are being ruthlessly cut. In a 2009 study in the UK, the National Autistic Society found that “79 percent of adults with autism who receive government assistance would like to work. But limited resources and lack of understanding mean that few have jobs and many have trouble even getting government assistance, leaving them ‘consigned to poverty’.” The picture in the US is equally bleak.

Moreover, autistic adults are especially vulnerable to becoming victims of crime. According to the Department of Justice, people with developmental disabilities, including autism, have a four to ten times higher risk of becoming crime victims and are twice as likely to be sexually abused as people without those disabilities.

Is it any wonder that the rates of clinical depression, anxiety disorders, and suicide of autistic people are higher than those of the general population?

Is all that urgent enough for you, Mr. MacNeil?

As for the idea that autistic adults who have “busy and productive lives in the world” should be excluded from a discussion about autism because “they can speak for themselves” — well, it’s absurd on the face of it. Why should being able to attain independence — which, by the way, is what every autism parent wishes for his or her child — disqualify us from speaking about our insights, our experiences, our concerns, and our views in order to improve the public’s understanding of the lives of autistic people? After all, Mr. MacNeil gave non-autistic people with “busy and productive lives in the world” more than their fair share of airtime on his program. Their level of functioning did not enter into his decision about whether to include them. Why should it affect his decision about whether to include us?

And why, oh why, should our ability to speak for ourselves be a reason not to allow us to speak at all? How does that improve the lives of autistic children in the here and now? How does it improve their prospects for the future? If they attain some measure of fulfillment and independence in adulthood, will they, too, be excluded from the conversation?

The logic of Mr. MacNeil’s statements works along familiar and divisive lines: If you can speak for yourself, you are not autistic enough to speak for other autistics. But if you cannot speak for yourself in any kind of conventional way, we will not allow other autistic people to speak about you, to express concern for you, to enter into the discussion about how to support you, or to share their reflections about what your experience of life might be like. We will only allow non-autistic people those privileges.

If “high-functioning” autistic people are considered ill-equipped to understand the experience of others on the spectrum, then on what logical or ethical basis can Mr. MacNeil, who is not autistic at all, justify speaking for any of us? If Mr. MacNeil has the right to speak about autistic people, then surely, we do, too.

Of course, I categorically reject the idea that only “high-functioning” adults can speak for themselves. There are many people, all along the spectrum, who can speak for themselves in a myriad of ways. Consider Carly Fleishmann, a nonverbal teenager diagnosed with classic autism and apraxia, who has learned to type over the past two years, and now attends honors classes in a mainstream high school. She is a funny, insightful, passionate young woman who travels the country helping people understand the nature of autism.

Or learn about Eric Duquette. When he was a child, his parents were told that he would end up in an institution. Last year, he was the salutatorian of his high school class, after having been accepted into every college to which he applied.

Or listen to the words of Jeremy Sicile-Kira, a severely autistic young man who graduated from high school last year and gave a speech, using a voice synthesizer, at his graduation ceremony. He, too, is going to college.

So, Mr. MacNeil, if you think that those of us who can speak are too “high-functioning” to talk about the lives of people diagnosed with classic autism, please go ahead and talk with them yourself.

You will find us describing the experience of autism in much the same terms. And you would do well to listen. After all, anyone who wants to create an “authoritative” series on autism needs to portray the lives of people all along the deep, wide, and diverse autism spectrum.

We will continue to expect nothing less.

© 2011 by Rachel Cohen-Rottenberg

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Responding to Old-Fashioned Anti-Semitism

April 21, 2011 Rachel Community, Empathy, Judaism and Jewish Life

I’ve lived a charmed life. I really have. I’ve encountered very little anti-Semitism directed at me personally. Of course, I take any anti-Semitism (and any other form of hatred) personally, but I’ve rarely found myself the object of it. The last time I did, I was at Princeton, and I was still in my teens.

Imagine my surprise, then, to find myself the target of an anti-Semitic slur on another blog — a blog I’ve always enjoyed. It came out of the blue, and the blog owner’s response to it was as offensive to me as the original slur. I’m writing about it partly because it’s an important issue, and partly because I want to find out whether others have the same level of feeling that I do about such things. So, I’d really appreciate it if you’d share your feelings about it.

Here’s the story: Another blogger wrote a short post about Simon Baron-Cohen, calling him out for his tired theories about how autistics lack empathy, and asking him to have some empathy for us. Of course, you all know that this issue is near and dear to my heart, so I posted a supportive comment that began “I totally love you,” agreeing with her on all points. Then, I went about my business.

A day later or so, I tuned in to see whether anyone else had weighed in on the issue and found the following comment from another reader:

“As Professor Grandin wrote in one of her recent books, as my Mom (from Mississippi) and Dad (from Georgia) were careful to point out to me when I was young, manners are very important, and even more so when dealing with strangers.

I am afraid that the patrimony of the person in Cambridge with the hyphenated surname might be starting to show a bit, there. Call that a blood libel if you like, Rachel. (Had you let my comment on your blog stand, and answered it, I don’t think I would be writing this one.)

Gentile White guys have feelings too, even though they might be somewhat autistic.”

My first response was “Whoa fuckin’ whoa! Did that comment say what I think it said?” That’s usually how I react when people say this sort of stuff: I question my own stellar reading comprehension. Obviously, I’d seen it all before, but in my shock, I went to disbelief.

The disbelief wore off pretty quickly, though, and then I got to work on a response. Before I share some of that response, let me unpack all the levels of the comment for you:

1. The commenter is assigning Simon Baron-Cohen’s theories of impaired autistic empathy to his being Jewish.

2. The commenter says he made this comment because he’s angry that a comment he wrote concerning my post about Sarah Palin, and her use of the term “blood libel,” did not appear on my blog, and I did not respond to it. I published the Palin post back in January. (January, people!) And I never saw the comment in question.

3. As many of you might know, the blood libel was a medieval anti-Semitic myth to the effect that Jews use the blood of Christian children to bake matzah for Passover. It’s been responsible for the persecution and murder of countless numbers of Jews throughout the centuries. In fact, there is evidence that it set the stage for the Holocaust. In other words, it’s not a term you throw around for fun.

Not only did this guy throw it around for fun, but he also threw it around for fun just before Passover. Oy.

4. By referring to Simon Baron-Cohen’s Jewish patrimony, he is referring to the second portion of his hyphenated name, which happens to be the name I share with the good doctor. I took the name Cohen and added it to my maiden name back in 1981, in memory of my grandparents, who had both died when I was a teenager, and who were singlehandedly responsible for the fact that I survived my childhood, both physically and emotionally. So the name Cohen has very deep emotional and spiritual resonance for me. Putting a stink on it is so not cool with me, you shouldn’t know.

Now, I am not a big fan of Simon Baron-Cohen’s work, as evidenced by my posts here, here, and here. So I’m not defending what the guy says. I’m defending his right — and mine — to be a Jew and be free from anti-Semitic slurs. (You all knew that, I know. It’s kind of obvious. But I figured that just in case your head is spinning, it wouldn’t hurt to be very clear.)

Okay, so. You know moi. I don’t let this kind of thing go without a response. It’s too important. It’s not just about disagreeing. It’s about the fact that saying this kind of thing is destructive, on so many levels, that I feel the need to speak up. So here’s how I responded, in part, to the commenter:

“If you’re referring to my Sarah Palin/blood libel post, I let all comments I saw come through on that one — some with editing (which included editing posts from the right and the left so as to keep the flames low). If your comment didn’t make it through, it’s because I didn’t see it. My spam filter is ridiculously inconsistent, and all kinds of valid stuff gets stuck there all the time. Usually, I catch it, but occasionally, I don’t. I’ve had long-time readers ask me where their comments went, and even though I’d looked carefully through the spam, I hadn’t caught them. It happens. I’m a human being.

In any case, your comment here that SBC’s Jewish patrimony aligns with his lack of manners is really beyond the pale. And to justify it by saying that it’s my error that caused you to engage in anti-Semitism is absolutely astonishing. You are responsible for what you say. You don’t get to indulge in an anti-Semitic barb and blame it on someone else. At least, not in my ethical universe.

My Jewish parents taught me better, and I’m damned proud of it. If any of my readers said something similar about conservative white guys, I would never publish it. Ever. Political disagreement? Yes. Attacking an entire group? No.

If you’d like to apologize for your anti-Semitic statement, fine. If you don’t, I wouldn’t let you post a thing on my blog, any more than I’d let someone who makes unapologetic slurs against conservative Christians onto my blog. And yes, I’ve gotten some, and no, they’ve never seen the light of day.”

At that point, I decided that, in the absence of an apology, I’d stop the interaction. I had had my say, and that was fine.

But the blog owner’s responses were less than helpful and, in certain ways, just as troubling as the original comment. First, she said that she was letting through the comment in the interests of free speech, but that she didn’t “want a race war” breaking out on her blog. On the free speech issue, fair enough. It’s her blog, and if she wants to let that stuff through, she gets to. But her comment about a race war breaking out implies that I was about to respond in kind — that is, that I’d attack the commenter for being a conservative white guy in the same way that he’d attacked me for a being a liberal Jewish woman. I decided to let it go, however, in the interest of seeing whether anyone would ante up, kick in, and become the least little bit outraged.

After I left my response to the original comment, this was the blog owner’s reply:

“I hope I have not upset anyone. I do not approve of racism and those other bad ‘isms’, and I try to avoid being a racist myself, but I do recognize that stereotypes can at times be a useful short-cut in decision making, including racial and ethnic stereotypes.”

Arghh! Where to start? My response:

1. I vehemently disagreed that racial and ethnic stereotypes can be useful.

2. I suggested that slurring Simon Baron-Cohen over being Jewish was not a useful short-cut to anything.

3. I came on the blog to be supportive, and ended up becoming the target of an anti-Semitic slur. I sure hoped that someone felt upset about that. I mean, besides me.

4. I’d be taking my comments and support elsewhere.

The response did not address any of my points at all. In part, it read:

“When I’m at the park do I avoid settling to read a book at the seats in the corner of the park where the Aboriginal people like to hang out? You bet I do! Do I pretend that I didn’t hear when indigenous people beg for money in the street, because I believe they probably waste money on booze and drugs? Damn right, I know what an indigenous person who is totally smashed looks like! Do I avoid discussing issues to do with Palestinian people with most people of a certain other ethnicity? You bet I do! Do I know that I’m risking being branded a Holocaust denier when I question the truth of a Nazi atrocity anecdote that a Jewish professor has written about lately in a number of different publications? Damn right I do! Did the qualified university-teaching surgeon that I asked about this anecdote reply that he thought it ‘Sounds like nonsense to me’? Yes indeed, he replied with those exact words! Do I believe that Google and the Australian Broadcasting Commission have both censored questioning of this very sus anecdote? Yes I do! Do I think that is an unjustified infringement of free speech and scientific enquiry? Yes I do!”

I don’t have the time at the moment to state the obvious on each of these points, but let’s just say that absolutely nothing in this paragraph has to do with ethnic stereotyping at all. Ethnic stereotyping, for those who don’t get the concept, has to do with saying “So-and-so did this highly objectionable thing, or so-and-so is about to do this highly objectionable thing, or so-and-so has this highly objectionable trait, because so-and-so is a member of [insert ethnic group here].” So, if I don’t give money to an African-American guy who happens to be drunk, because I know there’s a good chance that he’ll spend the money on getting more drunk, that is not ethnic stereotyping. If, however, I don’t give money to the guy because of the color of his skin, that’s racism. And if I say to myself, “He’s drunk because he’s black,” that’s ethnic stereotyping. (And, by the by, I’ve refused to give money to people who are drunk, but I’ve never refused on the basis of ethnicity, or assumed that they were drunk on the basis of ethnicity.)

And just to be clear: Stereotyping does not include making sensible, nuanced decisions to stay away from sensitive topics with individuals whom you know to be incapable of rational discussion. I’m not going to get into a long discussion with a Muslim who thinks that the blood libel is a reflection of reality, or a white guy who is convinced that the Holocaust did not happen, or a Jew who believes that all Muslims are terrorists, or a liberal who thinks that all conservative Christians hate women and want to kill abortion doctors. I’ll speak out against such idiocy, but I’m not going to have a useless discussion with someone whose mind is officially closed. That’s not called stereotyping. That’s called making the best use of my time on earth. I will, however, engage in debate with any reasonable Muslim, Jew, Christian, staunch conservative, bleeding-heart liberal, or anyone else, so long as that person keeps it civil, I have sufficient time and energy, and the subject interests me.

As for the blogger’s questioning an anecdote regarding a Nazi atrocity, suffice it to say that, having been the recipient of anti-Semitism on her blog, I didn’t feel that she’d exactly chosen the optimal moment to raise the issue. I have no idea what she’s talking about, and at the moment, I don’t care to know, because it’s an utter distraction from the question at hand. I mean, if any Muslim who posts to my blog were the recipient of an anti-Muslim slur that had somehow slipped in under my radar, I wouldn’t start talking about how difficult it is to participate as a Jew in a reasonable discussion on the Internet about the Israeli-Palestinian conflict. It is difficult, but that’s my difficulty, and not my reader’s problem. All of my attention would be focused on the fact that someone had come onto my blog in good faith and experienced an ethnic slur. We can have a discussion about the other issues later.

And, just so you all know, when I ran my Sarah Palin post in January, I spent a good deal of time editing comments from both a conservative Jewish woman and a liberal Muslim man, so that none of my Jewish or Muslim readers, of any political persuasion, would feel trashed on my blog. I do my best to practice what I preach.

It’s my belief that, as autistic people, we should be at the forefront of expressing outrage at any form of ethnic slurs or stereotyping. After all, we have to deal with stereotypes and slurs against us on a regular basis. In my view, it’s all equally destructive, and it’s all equally our responsibility, as human beings, to speak up against it.

© 2011 by Rachel Cohen-Rottenberg

57 comments

When Objects Resonate with Memory

March 16, 2011 Rachel Alternative Theories of Autism, Empathy, Grieving

Over at Kitaiska Sandwich, Sarah has a great post about the upset that her autistic son feels when things get broken or spilled. In reflecting upon the reasons for M’s upset, she finds that his response may not derive simply from a sensory experience, but also from a certain amount of grief over the fact that things can cease to exist. This post is one of Sarah’s best, and I urge you to read it if you haven’t already.

I’ve decided to post a slightly modified version of my comments to Sarah’s piece, because I identify with her son’s feelings so keenly, and because her post helped me to articulate my own experience regarding objects and the associations that they carry with them.

I recognize in M the grief I feel in myself when something breaks or gets lost. I’ve had that kind of grief all my life. It’s not overwhelming grief, as when a person dies; it’s more a sense of keen disappointment at something passing. And that something isn’t just the object, but the associations I have with the object. In fact, I’m not sure that it really has to do with the object per se, although the object is definitely the marker.

For many of us on the spectrum, objects aren’t just objects, but full of associations. I have very strong emotive associations with the things I own—which is one reason that I don’t own a lot of things, and that I don’t buy things that can be easily broken or lost. (In order to avoid cluttering my house, I am always giving things away, which I find both difficult and extremely liberating. Somehow, knowing that they will go to another good home is different from simply losing them or finding them broken.)

I can remember the day I got each of the rocking chairs in my living room: where I got them, who I was with, what the light was like, what time of year it was, and how I felt. The same holds for everything I have. Everything has some sort of emotion or memory attached to it—even the very ordinary set of dairy plates that I bought at The Dollar Store when we first moved into our house. Given that we autistic people tend to have extremely vivid visual and emotive memories, an object can end up being resonant with feeling, even if it looks like a very mundane object to other people. So, when something gets lost or broken, it can feel as though its whole history has gone with it; the event is a reminder that those experiences are in the past, and that time moves on.

There’s a sadness there that goes way beyond the object. I wouldn’t minimize the extent to which a child feels this sadness; what people sometimes lack in language, they more than make up for in depth.

I’m thinking that an autistic child may believe that his or her parents have the same strong associations with objects, and so may feel upset on the parents’ behalf, which only increases the level of distress. I can remember feeling that kind of empathic grief from a very young age, because my parents tended to react very emotionally to things, and I felt their emotions very intensely. If parents can stay calm in the midst of a mishap—as Sarah has been doing—it lets the child know that the parents are not grieving broken items, and it undoubtedly helps the child shift perspective. As I grew and spent more time around people who reacted calmly, I began to react more calmly as well.

And, of course, objects associated with painful memories can trigger very difficult emotions, which leads me to wonder: when an autistic child ends up in an otherwise unaccountable meltdown, could it be that he or she sees a reminder of a painful, frightening, or overwhelming experience?

© 2011 by Rachel Cohen-Rottenberg

29 comments

The Misleading Nature of the Deficit Model

February 26, 2011 Rachel Ableism, Alternative Theories of Autism, Empathy, Modes of Thought, Myths about Autism, Spectrum Pride

Those who danced were thought to be quite insane by those who could not hear the music.
—Angela Monet

I’ve never been shy about my feelings concerning the deficit model of autism. I object to its focus on “impairments” and its dismissal of our gifts as “splinter skills.” I dislike the hierarchy of human value it implies and, every time it leads a parent to believe that his or her autistic child will never feel love, I want to cry.

Lately, though, I’ve come to feel that the deficit model isn’t simply prejudicial, but entirely misleading.

In my view, the language of deficit hides the intrinsic nature of autism. In my experience, autism is not a condition of deficit, but of overabundance. I’ve never viewed my difficulties as deficits, because I spend a great deal of my daily energy dealing with an experience that is laden with perception and feeling. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world: color, texture, pattern, and motion. I have a vivid emotional and visual memory, both for events that have just occurred, and for experiences long past. I feel other people’s emotions immediately upon meeting them, and it’s in my nature to see things from a multiplicity of points of view.

When I look at autistic people who have been deemed “low-functioning,” I see people whose sensitivities make me look absolutely wooden. Our presentation is very, very different and, obviously, I can do a great many conventional things that others cannot. But intuitively, I know that they are not dealing with perceptual deficits. I see people whose overabundance of feeling and perception is both fundamentally different from mine and altogether overwhelming to their ability to function in any kind of normative way.

It’s this relative lack of normative functioning that brings in the deficit model. And, in terms of helping people to qualify for services and obtain needed assistance, it’s not a bad model. After all, if you need a service, you need to be able to document why. The problem is that once the deficit model is in place, it becomes impossible for most people to see beyond it. If you start talking about your internal experience, you get dismissed, because what becomes important is how you appear and what you do, not who you are or what you feel.

And how you appear is generally what shows up on an assessment, because the questions are geared to the surface level, and not much else. So, for example, if one were to ask whether I hold tenaciously to my own feelings and ideas, it might appear that I have difficulty seeing multiple points of view. But part of the reason I am so tenacious is that I’ve gone through a process of looking at things from so many different points of view that I would drown in the sea of other people’s perceptions if I didn’t make a judgment as to where I stand and what I believe. In arriving at a conclusion, I work through an immense number of possibilities and, once I’ve gone through the process, I generally form a strong opinion. It doesn’t mean that my mind is closed; it means that I’m not going to be convinced out of an idea or a feeling simply for the sake of social form or expectation.

Apparently, because I hold firmly to my conclusions, I can appear to be unempathetic to those who do not think as I do. If people only knew how intuitively I bounce from one person’s perception to another, how intensely I feel other people’s feelings, and how much mental and emotional discipline it takes to parse experiences that aren’t even on most people’s radar, they would see that my way of thinking is anything but inflexible—or easy.

Fortunately for me, I can speak, write, and express my internal life to other people. Where would I be if I didn’t have words? Where would I be if I weren’t able to navigate the world in a language it understands? Then I’d just look like a walking deficit model. And people without the empathy to see what’s going on below the surface would call me unempathetic, incapable of seeing things from other points of view, and without feeling. And they would be very, very wrong.

In describing autism as an experience of abundance, I don’t want to minimize the difficulties of living a life of intense perception, especially for those who cannot function in conventional ways. What I want to do is to signal that far from lacking the basic essentials of humanity, we feel our humanity acutely, and we suffer when others choose not to honor it.

© 2011 by Rachel Cohen-Rottenberg

23 comments

Autism Parents: It’s Time to Stand Up With Us

January 8, 2011 Rachel Community, Empathy, Friendship, Marginalization, Parenting, Self-Advocacy

I’ve recently had a very painful experience on another site. It’s not the first such experience I’ve ever had, and it likely won’t be the last. I’m not going to mention the name of the site, partly because I like the people who run it, and partly because what happened is not at all particular to them. It happens all the time, and it wouldn’t be fair to call them out specifically without naming every other equally problematic situation. Similar instances are so abundant (and multiply so rapidly) that I’d never get to the end of it.

The site I’m talking about is not someone’s personal blog. What people say and do on their personal blogs is none of my business, really. I mean, if I don’t like what they say, I can just stop reading, yes? No one invited me in, and I can always find the door. However, the site in question is one of the many “autism community” sites that posts articles from folks involved with autism in one way or another. I tend to have more of an investment in those sites, because most of them actively invite participation from all comers and present themselves as being inclusive. I’m a sucker for all that. Truly.

But it’s one thing to say “We want to hear a range of perspectives” and “We’re an inclusive community” and quite another thing to make it safe for everyone to participate. When it comes to places being safe for all comers in the autism community, we Autistics tend come in last.

I’m pretty certain that most people who read my blog can come up with any number of examples of what I’m talking about. In fact, these experiences are probably the reason that a lot of people come to my blog, and others like it, in the first place. But for the sake of clarity, I’m going to be specific about the kinds of things that make places feel unsafe. In addition to references to autism as an “epidemic,” these things include, but are certainly not limited to, posts and comments in which the writer says the following:

How disappointed the person is to have an Autistic child
How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)
How altogether unfair it is not to get the child the person dreamed of
How getting an autism diagnosis is like finding out that someone has died
How autism is analogous to a fatal disease

Now, I’m not saying that it’s not okay to feel these things. Everyone is human, and everyone has the experience of life not aligning with their deepest hopes and dreams. That’s where grief comes from and, trust me, we Autistics have had these experiences—not because something is Terribly Wrong With Us, but because we once had a dream that the world would love and respect us for who we are, as full human beings with a complete set of human feelings, and the world seems bent on reminding us that it just ain’t happening.

So yeah, we totally get it. Truly. And as I said, it’s fine for people to have these feelings. What’s not fine, to my mind, is to create a forum that is supposed to be inclusive, and then allow people to say demeaning things without a hint of self-reflection or self-criticism. It’s one thing to say, “When I got my kid’s autism diagnosis, it felt like I’d just been told she had cancer, but then I realized how demeaning that is and, for the sake of my child and others like her, I’m not going there again.” I support that. But it’s quite another thing to say, “When I got my kid’s autism diagnosis, I felt like I’d just been told she had cancer, and why should such a thing happen to me?” And when ten, or twenty, or thirty, or a hundred people chime in with a version of “I know! It’s all so unfair!” without any pushback at all from anyone, it just adds insult to injury.

Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours? To tell you the truth, I don’t know and, at this point, I don’t care. Over the past couple of days, I’ve realized that I’ve got to stop asking the Why is this happening? question. It’s a bottomless pit of a question, because the answers all have to do with people’s personal issues and, if we keep waiting until people get clear on their personal issues, nothing will ever get better.

Rather than framing it as a personal issue, I’m going to frame it as an ethical issue, because that’s really what it is. So I’m not going to burn a lot more grey matter on the Why is this happening? question. Instead, I going to turn my attention to the What can we do to stop this from happening? question.

As one of my fellow Autists said to me, just imagine if someone compared his or her gay child’s coming out with a Tragedy of Epic Proportions. There are some people in the world who do consider it a Tragedy of Epic Proportions to have a gay child, but a large proportion of straight people would consider that perspective to be seriously messed up. And not only would they consider it seriously messed up, but they’d take the expression of that perspective as a golden opportunity to say so. It’s not that they’re insensitive to the feelings of people who believe that their gay children are literally headed straight to hell. The pain of that must be excruciating. It’s that they’re sensitive to the impact of this kind of talk on people in the LGBT community and what it does to the lives of living, breathing, fully formed human beings, every minute of every day.

But I have never—and I mean, never—seen any non-Autistic person on any blog, anywhere, stand up and put a stop to this kind of talk about Autistics. I’ve seen Autistic people try to put a stop to it. I’ve been one of them. But not once has any non-Autistic person backed us up by telling their fellow non-Autistics to knock it off.

Usually, when I protest, I get roundly ignored. If I do get a response, it’s generally along the lines of, “Thank you for your perspective, Rachel. It’s very valuable.” When I’m posting on a mom blog, and I share my insights about what the person’s Autistic child might be going through, I love hearing exactly that response. In fact, I only read mom blogs in which people appreciate my contribution, because those moms realize that Autistic adults can give them a perspective that no one else can. But when I’m crying out against demeaning words that harm the minds and hearts of Autistic people, telling me that what I’m saying is valuable isn’t nearly enough. Not even close.

Parents, you have to stand up against demeaning words. You have to push back. You cannot leave it to us to carry this burden alone. When I protested about the situation on the site in question, one of the site owners said, “I think it’s important that you keep coming back here to educate people.” And sure, I’m all for educating people—but it’s a bit much to put that responsibility solely on the shoulders of the beleaguered minority, and to walk away from the responsibility yourself. If you don’t understand that you need to stand up with us, how successful can my “educating” really be? And if you’re a member of the majority, and you don’t serve notice to other people in the majority that you will not tolerate people using words that batter our hearts and minds, they will feel permitted to keep using those words. Forever.

If it were only people of color who had fought for civil rights in America, we wouldn’t have any civil rights legislation at all. If it were only LGBT people who had fought for gay marriage, I woudn’t have lived in two states that have legalized it. The outrage of the majority is necessary to the civil rights of the minority. Always. We can keep your feet to the fire, but we can’t change the world alone.

Look at all the violence against women in our world. Why does it happen? We’ve had feminism, and the women’s movement, and all kinds of powerful women in all kinds of positions of authority, for many decades now, and yet, women are still being battered at an alarming rate. It’s not because women haven’t worked hard to end it. It’s because most men consider it a woman’s problem. Plenty of men do not assault women, but how many of these peaceful men actually get together and say, “We must put a stop to this. We must do everything we can to stop other men from believing that it’s perfectly all right to beat up a woman”? Precious few. They figure that they’re not doing the battering, and that’s enough for them.

It isn’t. And if you really want to make the world better for your Autistic children, it isn’t enough to respond with “Thank you for your perspective” when Autistic people say, “Stop using words that demean and belittle us.” It isn’t enough to be the one who doesn’t use those words. It’s time to start calling out the people who do. It’s time to say, “Stop using those words. They’re not just demeaning to your child. They’re demeaning to my child. They’re demeaning to any Autistic person who hears them, and they’re demeaning to Autistic people everywhere.”

In my own community, there are a number of Autistic young adults that I cannot reach. They do not want to spend time with other Autistics—not because they’re decided that they have better things to do, but because they have spent their lives so battered by the talk of pervasive wrongness and tragedy and brokenness that they are in complete rebellion against being Autistic at all. And I can’t say that I blame them. But these are not people who are “passing” for neurotypical. These are people who are struggling with everyday tasks and seriously in need of support. And yet, they want nothing to do with the very people who could include them in a supportive community.

I don’t think that every Autistic has to self-identify as Autistic; there are plenty of ways to construct identity, and as long as that identity is positive, I’m happy. But we’re not talking about people who have constructed a positive identity. We’re talking about people who are fleeing from themselves and ending up completely isolated, with neither a clear, healthy sense of self nor a welcoming group of people in which to be themselves. And why? Because they’ve heard one, long, unbroken message all their lives that they are one big tragic disappointment, and no one in their lives has put a stop to it.

I will spend the rest of my life helping Autistic people to create a strong, empowered, positive Autistic identity, free of shame and stigma. I know many people in the Autistic community who have the same commitment. And community is crucial; without it, we’re stranded. But creating a refuge is not enough. We have to create a world in which people do not feel like walking disappointments. We can talk about inclusion all we want, but if people feel that their very existence is a tragedy, they can’t even begin to avail themselves of what inclusion really means.

So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.

© 2011 by Rachel Cohen-Rottenberg

75 comments
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