Archive for Communication

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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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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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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Disorder in Society, Disorder in Self

May 23, 2011 Rachel Communication, Community, Disabilities, Doctors

Some years ago, I took a two-year training course in Jewish shamanic healing. I came away understanding a great deal about the many ways in which ancient Jewish culture was similar to many other indigenous cultures, especially regarding the role of the healer, and the importance of ritual in maintaining the health of the individual and the society.

Ever since that training, I’ve become very interested in how various indigenous cultures view illness and healing, mainly as a way to understand our own culture’s attitudes toward sickness and health. So when I ran across the following in Robert Murphy’s The Body Silent, I began to think about the ways in which it illuminates the autism discourse:

“Among the Mundurucu, and many other South American Indian societies, the most serious threats to health are believed to arise from violations of the social order, specifically from the activities of malevolent and alienated individuals, people who, say the Mundurucu, ‘are angry at everybody.’ Most diseases, the Mundurucu believe, are caused by evil shamans who manufacture supernaturally charged objects, called caushi, that enter a person’s body and cause illness…

Just like the invisible malignant objects he manufactures, the Mundurucu sorcerer is thought to operate covertly, maintaining his everyday demeanor and mask of sociability while spreading disease and suffering. Killing the accused restores the body politic, and at the same time purges the populace’s fears, envies, and secret hostilities, which have been projected onto his person. The good shaman brings back life and normal function to the body and community; the evil shaman creates death and disorder — which are really the same thing.” (Murphy, 30-32)

One of the images that struck me right away was that of an outside force entering the body and rendering the individual ill. In the mainstream discourse, autism is sometimes imagined to be the result of a foreign substance being introduced into the body by way of vaccines, environmental toxins, or food additives. At other times, as in the infamous Ransom Notes campaign, autism becomes the outside invader itself.

In both cases, the seemingly inevitable corollary is that autism is a condition separate from the person. If the autism were removed, the narrative goes, the formerly autistic person would be well, normal, and whole. Thus, despite the vast diversity of the autism spectrum, despite the dozens of possible genetic markers for autism, and despite the fact that autism is a complex neurological condition, most people speak of autism as though it were a single entity that could be safely excised.

But where our own culture diverges from the indigenous view is the degree to which the “cure” is focused wholly on changing the person, rather than the social context in which the person lives and breathes. In cure circles, there is very little talk about changing the disorder in society in order to heal the individual.

The only exception comes in the form of the vaccines-cause-autism contingent, whose members believe that keeping people from introducing vaccines into their children will stop the “autism epidemic.” Just as the Mundurucu view the sorcerer as a malevolent entity who operates “covertly, maintaining his everyday demeanor and mask of sociability while spreading disease and suffering,” many who believe that vaccines cause autism view the pharmaceutical companies, the vaccine manufacturers, and the federal government as co-conspirators in a plot to render the American public ill, all the while going about their business looking as respectable as can be.

Of course, the anti-vaccine contingent does not help anyone become better. In fact, they only introduce more illness into communities by lowering herd immunity through their anti-vaccination efforts. In trying to heal disorder, they only create more of it.

As for the rest? Those who believe that autism is caused by environmental agents, rather than by genetics, show little to no interest in stopping the alleged cause of the autism. If you believe that pesticides cause autism, shouldn’t you be working against the use of pesticides? If you believe that food additives cause autism, shouldn’t you be working against the use of food additives? And some people are. But far more people devote all of their attention to altering or curing the autistic person, despite the fact the autistic person, in this scenario, is simply the canary in the coal mine. It’s as though, instead of working on better conditions to keep miners from dying of the methane poisoning that killed the canary, everyone involved decided to re-engineer the human body to tolerate high levels of methane. In that kind of scenario, the human body becomes the source of the disorder, and no one need alter the larger environment.

I read a comment recently on another blog that spoke very directly to this idea. In writing of the necessity for a cure for autism, the commenter said:

“The world isn’t going to get any less bright, less loud, less crowded, or less dependent on the need to communicate in our children’s lifetimes no matter how much we may wish it; and no matter how wrong it is, funding for a generation of children needing lifetime assistance will not be forthcoming.”

I found this comment quite interesting, because it clarifies so succinctly the impact of social disorder on autistic people while eschewing the necessity for healing the disorder in the body politic. The society we live in is not only very bright, very loud, very crowded, and very biased toward verbal communication; it is also a society in which humane, compassionate, lifetime care for severely autistic people is nonexistent. The commenter’s solution is to find a cure. He has wholly given up on the idea of changing the world around him, and he puts the necessity for change squarely on the autistic individual.

I think it’s apparent to most of us who have reached mid-life that the world has become quite a bit more disordered than it was when we were children. I remember my father limiting our TV watching; these days, you can hardly go into a restaurant or a waiting room without a television on. I remember a world of books and LPs; these days, there are iPods, computers, and all manner of technology that keeps us bombarded by visual and auditory stimulation. I remember when you weren’t supposed to play your music too loudly, so as not to inconvenience other people; these days, I hear music blaring out of people’s homes and cars on a regular basis. I remember when you could actually read the credits after a movie because they went by slowly enough for the average human to parse; these days, the text on the screen flies by so quickly that you have to click the pause button just to read it. I remember when classrooms were orderly and quiet; these days, in far too many places, they are loud and chaotic.

All of these factors mean that those of us who flew under the radar 50 years ago could certainly never do so now. It’s not our autism that has changed. It’s the environment. And yet, very few people talk about the environment in any thorough-going way. Yes, there are special ed classrooms, and some autism-friendly movie events, but there is a huge difference between providing separate venues for autistic people and addressing the disorder in the larger society that renders us disabled. Clearly, not all the disabling features of autism can be solved by re-ordering the environment. As one autism mom said to me recently, no accommodations can keep the world from being one in which bees buzz, babies cry, and dogs run — all of which are very painful to her autistic son. But there is much in the environment that can be changed so as to render the world less aversive and disabling to autistic people.

Few people want to talk about that kind of change because, frankly, most people have the privilege of accepting society just as it is; and those who see the enormity of the problem feel powerless to change it. So, instead of the social order changing, it’s individuals who must change. From what I have experienced, putting this burden on the individual is a core feature of the mental health profession, which largely sees difficulties like depression and anxiety as personal problems rather than social ones. Very few therapists are willing to engage the question of the ways in which skyrocketing levels of depression and anxiety have to do with the cold, lonely, stressful, alienating nature of American society. Instead, the solution is almost always to talk it out and take a pill.

After many years in recovery as an abuse survivor, and now as a late-diagnosed autistic, I’ve come to realize that American culture thrives on this individual illness paradigm. Everything is a disorder in the individual. If you’re depressed because you’re disabled and feeling isolated, you have a mood disorder. I actually had my last therapist tell me so. I said to him something along the lines of, “Wait a minute. I’m dealing with a disability in mid-life, in a world that is set up to exclude me more often than not. How does that translate to a mood disorder? Aren’t I having a perfectly normal response to the gravity of the situation?” He just kept telling me that it was my problem.

In the final analysis, it’s the person diagnosed as “disordered” who ends up in the position of the Mundurucu sorcerer and becomes seen as the source of social disorder. Disabled children are considered a “drain” on the school system. Disabled adults are considered “a burden” on society. Autistic people are called unempathetic, rigid, black-and-white thinkers in a society in which most political discourse is inhuman, inflexible, and polarized. People with mental illness are objects of fear and derision. The list goes on and on, the prevailing mythology being that if all these people could simply be cured — or just plain disappear — normality would reign, fear would be banished, and all would be well in the body politic.

In the popular imagination, we disabled people end up not in the position of the victim of an evil sorcerer, but in the position of the evil sorcerer himself. In the minds of so many, to cure a disabled person — or to render the disabled person invisible — “restores the body politic, and at the same time purges the populace’s fears, envies, and secret hostilities, which have been projected onto his person.” The larger society becomes the good shaman, “who brings back life and normal function to the body and community.” The individuals labelled “ill” become the evil shaman, who “creates death and disorder.”

And yet, unsurprisingly, no one is healed. We simply end up creating a society of alienated individuals who, as the Mundurucu say, “are angry at everybody.”

© 2011 by Rachel Cohen-Rottenberg

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Living with an Open Heart

May 7, 2011 Rachel Childhood, Communication, Friendship, Parenting

My daughter has been going through a difficult time in these past couple of months. I don’t want to share particulars, except to say that she’s dealing with having been abandoned by someone she was very close to — someone to whom she was a very loving and caring friend. It happened very unexpectedly, without warning, and left us all reeling.

Ashlynne has dealt with some difficult and heartbreaking things before, but there is something going on here that feels much different to me. It feels like a loss of innocence, as though her childhood has abruptly ended. Perhaps it’s because it’s yet another ending — like the end of high school, the end of living at home, and the end of the arc of her first eighteen years. Because it came so quickly and so painfully, it’s resonating across all these other endings.

It’s like a tear in the fabric of Ashlynne’s past. It hurts to imagine her going off to college without the tie to the past that this friend represents. There’s barely a thing that Ashlynne owns that doesn’t have the memory of her friend intertwined with it from the past five years of their lives together. And so, her friend’s absence is always palpable.

We’ve had a number of long talks about the situation, and Ashlynne is aware that she has done nothing wrong. So we’re not spending any time on second-guessing and self-blame, thank God. Instead, we’re starting to talk about the kind of people we are in this family, how it feels when people take and walk away, and how to care for our hearts and minds in these kinds of situations.

I have been in Ashlynne’s shoes many times in my life. It’s in my nature to be helpful. It makes me happy, and it rarely feels like a burden. And even when it does feel like a burden, it gives me satisfaction to carry it. Many times, I’ve been the person to give with an open heart, only to find that the other party is nowhere to be found when my hour of need arrives, or when it’s time to celebrate a joyful event.

I’m not talking about helping by giving money or material things, as I don’t give either away very easily at all. It tends to complicate friendships, and besides, I’m eminently practical and sensible when it comes to both. I’ve never been ripped off or taken advantage of financially, and I never will. In financial matters, it’s in my nature to be deeply suspicious and to exercise an abundance of caution.

But emotionally and spiritually, I flow outward. I used to think this basic approach derived from my autism. I used to think that, because I have neither the ability nor the desire to manipulate people, I’m just open to what they need and how I can help, and that I get blindsided when they don’t reciprocate.

But I was wrong. It’s not the autism at all. My neurotypical daughter, my neurotypical ex-husband, and my neurotypical present husband all operate just as I do, and they’re all just as capable of being blindsided. None of us thinks that life is all about us, none of us holds back from wanting to help people in difficulty, and none of us, in our heart of hearts, really expects things to go as badly as they sometimes do.

My ex-husband used to sum up his relationships with other people by saying, “I’m the guy who always picks up and drops people off at the airport, but when it’s my turn, people just tell me to take a taxi.” I spent a lot of time in that taxi with him, literally and figuratively, over the thirteen years of our relationship, so I know that he’s right.

My present husband is also a very generous person whose first impulse is always to ask how he can help. What’s troubling is how often people take that help completely for granted. He does it all so lovingly, so patiently, and so well that people often think that he’s some sort of higher being to whom it all comes naturally. They’ll recite an encomium on Bob and what a wonderful person he is, but deep down, most of them have no understanding whatsoever that he has worked very, very hard, throughout his life, to have the spiritual and emotional discipline to do what he does. It’s not something you’re just born being able to do. Yes, he’s got some great raw material to work with, but without all his years of spiritual and emotional work, all that great raw material would have come to nothing.

And what’s even more upsetting to me is how few people understand or appreciate how much the giving takes out of him, and how much support he needs.

And my daughter is all about counting her blessings and wanting to share them with others. She is welcoming, generous, and caring. I don’t think it ever occurred to her that what just happened was a possibility. Sure, people can have a falling out, but you’ve got some warning there. You know that things are not good, and you’re in conflict. In this situation, there was no warning. Absolutely none. It just happened, like a piano being thrown out a fourth-story window and barely missing your head.

It tears my heart out. It really does. I feel sad, and I feel well and truly pissed, too.

But all I can do, in addition to supporting Ashlynne emotionally, is to work through the current issue with an eye to how to approach these situations in the future. So I’ve been reflecting on relationships lately, and on the things I’ve learned that might be helpful to Ashlynne as she enters adult life.

There are some situations in which you can make a conscious choice to give, without any expectation of reciprocity. That’s a very high ethical level of giving, and perfectly appropriate in some situations. It’s not a bad way to live, so long as you’re aware of what you’re doing and why.

But you can’t base a friendship or an intimate relationship on that kind of imbalance. There has to be reciprocity. So I’ve learned, over the years, to scope people out better. I don’t just pour out all my giving at once anymore. I see what the other person is capable of, and I try to match it. It’s never perfect, but I’m getting better at it. So I’ve suggested to Ashlynne that she stay mindful of holding a balance and that, when the balance is upset, that she be aware of it and how to bring it back to center.

Of course, part of what feeds an imbalanced relationship is a failure to articulate needs. When I don’t assert my own preferences, I have no way to gauge the other person’s level of commitment to me and what he or she is truly capable of giving. In the absence of that information, there is no way to adjust the level of giving in a friendship. I just end up “on” until the other person is done taking or I’m exhausted, both of which often happen pretty much simultaneously.

It’s been good to look at these things, because it means that I can help my daughter along the path. But in the final analysis, everyone in this family is going to be open to the kind of hurt that Ashlynne is going through right now. I don’t think there is any way to completely protect against it without closing off and distorting our true natures. We can take steps to avoid these kinds of situations, but we’ll never be immune to them, because we will so often take the emotional risks that come with doing the right thing.

I’ve come to accept the situation for myself, to some degree, but I’m having a much harder time accepting it for Ashlynne.

In my worst moments, I feel like an absolute fool for having raised Ashlynne to be a kind and ethical person. In the past week, I’ve actually thought to myself, “What an idiot I’ve been! If only I’d just said to her, ‘Honey, just go out there and take from the world. Giving is for saps.’” Instead, throughout her entire childhood, we discussed Torah, and did role ethical playing, and made a commitment to being the hands of God in the world. Sometimes, it feels as though I’ve sold my daughter a bill of goods.

But I know I haven’t. I know I’ve taught her about what’s highest and holiest in life. The solution to the madness of “me, me, me” isn’t to become part of the problem. If I’d raised my kid that way, I’d have done major damage to her essential nature — and to mine.

So am I a fool to be giving in a world in which so many people just take? Perhaps. But I’m beginning to realize that if I’m a fool, I’m a fool in the service of what’s right. I’m not big on the question of belief in God, but I am very big on my experience of God, and doing right is the experience of God in the world for me. In the eyes of the world, maybe I look like a fool to think about giving before taking. But I’m learning not to care. Doing what’s right makes me feel safe, and sane, and connected to something greater than myself. The opinions of other people really can’t hold a candle to that feeling.

So screw the wisdom of the world. Yes, there’s a lot of difficulty and disappointment on this path, and sometimes, I wish I could save my daughter from it. But I know that I’d be interfering with the beauty and wonder of who she is, and with her connectedness with all that is, and that, I will never do.

© 2011 by Rachel Cohen-Rottenberg

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Audiology and Neurology

February 28, 2011 Rachel Communication, Community, Disabilities, Doctors, Hearing

I had my follow-up audiology assessment on February 15, and my follow-up appointment with a neurologist this morning. I don’t have much to report in terms of answers, but I’m continuing to find insight along the way.

February 15 audiology assessment: I walked to the audiology center, which is a mile or so from my house, and I was in a state of extreme resistance the entire way. I just didn’t want to go through the testing again. It wasn’t an intellectual resistance. In my head, I was interested in knowing how things would come out. The resistance was physical and instinctive. If I were a little kid, I probably would have said, “I just don’t wanna! Please? Can’t we go home?” But I’m an adult, so I kept on walking.

There are only two aspects of my audiology assessments that I like: seeing Beth Ann (my audiologist), and sitting in the sound-proof room she puts me in for the testing.

Beth Ann is a wonderful, friendly, quiet-spoken person who seems to talk at just the right tone and pace for me. She talks very little, too, which makes her very easy to be around. She says what’s needed, and then she gets down to business. She says that she likes when I come in for testing because she gets to use her normal voice; most of her patients are elderly people who are hard of hearing, and she tends to have to speak very loudly most of the time.

And the sound-proof booth? I want one. So. Very. Much.

At this particular appoinment, Beth Ann didn’t even bother trying to talk to me in her office. She did the pre- and post-assessment interviews in the sound-proof room. She figured I’d have an easier time of it. Nice person, eh? I really appreciated the gesture.

But God, did I hate the testing! My body was in a state of major tension the entire time. I just couldn’t wait to get out of there. I saw, once again, that verbal processing—any verbal processing—is very difficult, very tiring, and in some ways, very unnatural for me. According to the latest assessment, some of my scores have gone down, and one went up slightly. Here’s the breakdown of scores since my first assessment in July of 2010:

Frequency Patterns (pattern matching)
July, 2010: Right: 100%, Left: 100%
November, 2010: Right: 100%, Left: 100%
February, 2011: Right: 100%, Left: 100%

Compressed Speech (fast speech)
July, 2010: Right: 52%, Left: 48%
November, 2010: Right: 52%, Left: 48%
February, 2011: Right: 36%, Left: 36%

Speech in Noise
July, 2010: Right: 68%, Left: 80%
November, 2010: Right: 30%, Left: 20%
February, 2011: Right: 36%, Left: 40%

Dichotic Digits (integration of sound binaurally)
July, 2010: Right: 93%, Left: 90%
November, 2010: Right: 65%, Left: 28%
February, 2011: Right: 50%, Left: 25%

Except for my apparently ceaseless ability to do pattern matching, all of my scores are still in the Poor range. The good news is that they haven’t dropped as significantly as they did between July and November of last year, and I’m grateful for that. No one has ever suggested that my hearing will ever be normal, so I didn’t go in expecting miracles.

After the testing, Beth Ann asked whether I had any questions or concerns. My mind was kind of blank at that point, except for fact that I was cognizant of the huge enchilada in the room—the huge enchilada that is so large and so ever-present that I often can’t even register that it’s there.

So, I said, “Yes, I have a concern. How am I supposed to live my life this way?”

It wasn’t as pitiful as it sounds. I didn’t mean, “How am I supposed to get up in the morning?” I meant, “I don’t have a road map here. I do my best to understand what’s going on with my hearing. I take adaptive measures. I advocate for myself. But I feel like I’m doing it in a vacuum. If I were Deaf, I’d have a community to guide me. But I’m completely on my own here, and it’s very difficult.”

She was very kind, and she said that she’d talk with some people at Austine (the local school for the Deaf and Hard of Hearing) and see whether there might be any services or guidance for me. Later on, it occurred to me that there’s a crucial service that she can help me find: counseling from a Deaf practitioner. I need emotional support from someone who isn’t going to give me well-intentioned but useless advice. My last therapist told me that, of course, people wouldn’t approach me because, by blocking my ears, I was communicating that I didn’t want to communicate. I tried to explain to him that, um, no, I was blocking my ears to protect them, and that I wasn’t communicating a thing, except that I have a problem with my hearing. You can guess how that went. It was like saying, “You know, sometimes a cigar is just a cigar,” and being told I was in denial.

I don’t need to listen to that kind of thing anymore. In fact, what I need is a therapist who can help me deal with the exhausting, mind-numbing, crazy-making cluelessness implied by that kind of remark.

And I need someone with whom I can sit and text during appointments and not talk at all. I remember when I used to see my Deaf counselor at Voc Rehab. We’d sign a little and then write back and forth, or use the Ubi-Duo. After awhile, finding employment became secondary to just being in the same room with someone who wasn’t going to exhaust me. It was so peaceful. I came out feeling full instead of empty.

When I emailed Beth Ann about my idea of finding a Deaf therapist, she wrote me back and said, “Wow! I was just thinking the same thing!”

I’ll keep you posted about my progress in this area.

Today’s neurology appointment: Back in November, when my audiology scores plummeted, my audiologist strongly suggested that I see a neurologist “to get to the bottom of it.” I got an MRI right away, which showed nothing wrong. I also scheduled an appointment at Dartmouth-Hitchcock for February 2 (the first available one), but there was a blizzard that day and driving was out of the question. So I decided to see someone in town, figuring that even in a blizzard, I could walk.

The neurologist was lovely. I had gone expecting some high-powered, well-dressed doctor who would rush me mercilessly through the appointment. Instead, she was a very calm older woman dressed in a button-down shirt and corduroy pants that were balding in several spots, and she let me take my time. She did a bunch of testing and basically said, “I don’t see a thing wrong with you—except for the auditory and other sensory issues, that is.” My core muscle strength is good, my coordination is good, my balance is good, and nothing seems to be structurally wrong. She ordered some bloodwork to rule out autoimmune conditions that can lead to hearing loss, but she said that she expects that everything will come back normal.

Basically, she couldn’t explain the sudden drop, but after hearing about my father’s auditory processing and its extreme similarity to mine, she said that it’s probably all genetic. She gave me the option of going to an ENT clinic in Boston, but when I asked whether she thought it was actually worth it to shlep to Boston for more testing, she said, “I’m not sure. Let me think about that.”

I finally said to her, “You know, whatever is causing the drop-off, no one has ever breathed a word to me about it getting better. I think it’s good that we rule out really serious stuff that could be causing it, but if it’s something otherwise benign, that can’t be changed, what’s the point? I’ve accepted that my hearing is the way it is. I just need some support for dealing with it.”

She seemed to understand what I was talking about, and we agreed to have another appointment in a month to discuss things further. I got the bloodwork done (after having to flee the building for several minutes because they decided to test the alarm system while I was waiting), and then I came home even more convinced that my next order of business is not medical, but support-oriented.

I’ve got to get some support from a therapist for living with a disability and all the nonsense that the world throws at me about it—including all the ableist stuff I’ve still got to weed out of my own head. And I need some support for becoming more assertive and confident about the adaptive measures I need to take and the ways in which I need to advocate for them. I can’t continue to go this alone. I mean, actually, I can if I have to, and it’s good to know that I’m capable of doing so, but I really shouldn’t have to.

It’s all a work in progress. More later, as the work progresses.

© 2011 by Rachel Cohen-Rottenberg

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My Most Recent Audiology Assessment

December 16, 2010 Rachel Communication, Disabilities, Hearing, Self-Advocacy, Sensory Processing Issues

Several months back, I wrote about the results of my July audiology assessment. A few months after the assessment, I began to feel that something had gone terribly wrong and that my auditory processing had gotten significantly worse.

My first inkling came in the form of a visual. One night, as I thought about the way I’d been processing auditory information, the image that came to mind was a feeling of the walls closing in. It was as though I were in a room that was getting smaller and smaller, so that every way I turned, I hit a wall. It was terrifying. I decided to call my audiologist’s office and schedule another appointment right away. When I told the receptionist what was wrong, she agreed that I needed to come in as soon as possible.

When I went in for the appointment on November 11, the audiologist asked me how the process of tapering off Lorazepam was coming, and I told her that I was almost done. (I am now completely off the Lorazepam—for good!) In all other respects, my health has actually been improving. I’m sleeping better. My other sensory sensitivities have lessened. My thoughts are clearer. My emotions are more manageable. All of these things have gotten better while my auditory processing has felt like it’s been spiralling downward. The audiologist suggested that perhaps my auditory processing abilities were stable and only seemed worse when contrasted against everything else.

I was hoping she was right. Unfortunately, once we did the tests, we found out that she wasn’t. My auditory processing abilities have drastically gone downhill. Here are the results of each test:

Pure Tone Audiometry
This test consisted of a series of tones. When I could hear a tone, I pushed a button. The test showed no change since July. The mild hearing loss in my right ear and moderate hearing loss in my left ear have remained stable.

Auditory Patterning
The auditory patterning test measures how well the subject can hear and replicate relative pitch. The audiologist played a series of three sounds and asked me to tell her whether the pattern was “low-low-high,” “high-high-low,” and so on.

July assessment: I scored 100% in my left ear and 100% in my right ear.
November assessment: I scored 100% in my left ear and 100% in my right ear.

These results didn’t surprise me. As I’ve said before, ordering things into patterns will be the last of my faculties to go.

Auditory Closure
The auditory closure test measures how well the subject can hear words spoken very quickly. Auditory closure is an area of processing that concerns the listener’s ability to fill in missing or disorted patterns of the auditory signal and recognize the whole message. It is an area of processing that can have a direct impact on a person’s ability to understand degraded speech.

July assessment: I scored 48% in my left ear and 52% in my right ear.
November assessment: I scored 48% in my left ear and 52% in my right ear.

During both assessments, this test was very difficult because I couldn’t hear the words clearly enough to form a word-picture in my mind. I’m unable to hear soft consonant sounds like “p” or “th”; they’re at a frequency that my ears don’t pick up. Any sound at this frequency drops out at the end of a word. When words come at me slowly, I can usually run through the list of possible meanings in my mind’s eye, but when the words come at me quickly, the sense of the sound fading away is especially acute, and my ability to see the words in my mind breaks down.

When I couldn’t see the word in my mind, I became very frustrated with the process, which probably accounts for why I become overwhelmed when people around me are talking too quickly.

Both sets of scores are in the Poor range, but at least there had been no change since July. The audiologist concluded that I am “presenting below normal limits in this area of processing.”

Binaural Integration
The binaural integration test measures how well the subject can hear out of both ears simultaneously. Binaural integration is an area of processing that can have a significant impact on a person’s ability to understand multiple auditory signals at the same time. People with difficulties in this area often have a difficult time understanding when more than one person is speaking at the same time.

The audiologist played a series of four numbers: two in one ear, and two in the other. I had to repeat the numbers to her.

July assessment: I scored 90% in my left ear and 92.5% in my right ear.
November assessment: I scored 28% in my left ear and 65% in my right ear.

This test was immensely frustrating. In my July assessment, I had dealt with my processing limitations by memorizing what I’d heard, visually lining up the image of the numbers in my mind’s eye, and then speaking them. In my November assessment, I could not line up the numbers in my mind’s eye at all. By the time I had gotten to the last couple of numbers, I’d have forgotten the first ones. A few times, I remembered three of the four, but mostly, I could only identify one or two. At one point, I noticed myself listening only out of my right ear in order to simplify the process, so of course, I only heard half of what came into both ears.

The November scores are in the Poor range. The audiologist concluded that I am “currently presenting with significant difficulty in this area of processing.”

Binaural Interaction
The binaural interaction test measures word recognition in noise. Binaural interaction is an area of processing that can have a significant impact on a person’s ability to understand speech in the presence of background noise. The noise can include anything from the scraping of chairs to the hum of fans and overhead projectors or speech. People with difficulties in this area often require a greater signal-to-noise ratio in order to pick up and understand more of what is being said.

For this test, the audiologist played a series of words spoken in the midst of noise. For each word, I had to repeat what I had heard.

July assessment: In my left ear, I scored 80%, and in my right ear, I scored 68%.
November assessment: In my left ear, I scored 32%, and in my right ear, I scored 20%.

In my July assessment, I had been able to fish many of the words out of the noise, hold them in my visual memory as word-pictures, and then speak them. In my November assessment, I couldn’t make out enough sounds in most of the words to form a word-picture in my mind at all. A number of words simply disappeared into the background noise. For others, I could make out a vowel sound and a consonant, but I could not even venture a guess as to the other letters.

At one point, when I was nearly in tears, the audiologist stopped the test and simply played a series of words in quiet, first in one ear, and then in the other. It was as though I were looking at black letters standing out against a white background. I scored 100% in quiet. Then, she kept going with the words in noise and the letters began fading out again.

Needless to say, the November scores are in the Poor range. The audiologist again concluded that “I am currently presenting with significant difficulty in this area of processing.”

The audiologist was perplexed about my scores dropping so sharply, so she gave me a referral to a neurologist. My sense of what’s happening is that my compensatory mechanisms have broken down, probably from decades of overuse, so that I’m now left to deal with an auditory processing system in shambles. In February, I have an appointment with a neurologist at Dartmouth-Hitchcock to do further testing, so I’ll let you all know if anything interesting comes to light.

© 2010 by Rachel Cohen-Rottenberg

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Self-Advocacy Begins at Home

December 7, 2010 Rachel Communication, Community, Self-Advocacy

Last week, we received a fundraising letter in the mail from a local agency that serves people with developmental disabilities and mental health issues. It’s a very good organization that we wholeheartedly support, but the letter contained a moment of “us and them” thinking that I could not let go unanswered. And so, as the ASAN-VT chapter leader, I wrote and sent the following letter to the executive director. (I’ve changed her name for the purposes of this post.)

December 1, 2010

Dear Ms. Graham,

This week, I received your fundraising letter in the mail. My husband and I intend to send in a contribution to your organization, as we fully support all the great work that you are doing.

I was troubled, however, by the following sentence in the second-to-last paragraph of your letter:

“We have found, over and over again that people with disabilities want the same thing that you and I want—family and friends, being connected to their community, and meaningful employment.”

The phrase “you and I” is set off in contrast to “people with disabilities,” as though the reader addressed as “you” could not possibly be a person with disabilities. Many of us who are disabled receive and read your letters, and being excluded from the audience of the letter does not engender a feeling of connection to our community.

Words have a great deal of power. Given that one in five Americans is disabled, and that all of us run the risk of becoming disabled at some point in our lives, we must remember that there is no “us” and “them” here. We are all in this together.

Sincerely yours,

Rachel Cohen-Rottenberg
Chapter Leader
Autistic Self Advocacy Network of Vermont

I’ll let you know whether I receive an answer.

© 2010 by Rachel Cohen-Rottenberg

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Speak Up on November 1st!

October 22, 2010 Rachel Communication, Community, Marginalization, Self-Advocacy

On November 1st, people all over the world are being asked to stay off social networking sites as part of a Communication Shutdown. This initiative is the brainchild of an Australian organization called the AEIOU Foundation for Children with Autism. To join, you make a donation to receive a CHAPP (charity app). The CHAPP gives you a shutdown badge to wear online and adds your picture to a whole collection of photographs of other supporters, including celebrities. (Wow! Celebrities!) The donation you make goes to an “autism charity” in your home country.

In addition to raising money, the aim of the Communication Shutdown is to help people understand what it’s like to be autistic. According to the website devoted to the initiative:

Social communication is one of the biggest challenges for people with autism. By choosing to shutdown your social networks for one day, you will have some idea of what it’s like for people with autism who face this challenge every day.

Rachael Harris, a counsellor and supporter, who herself is on the autism spectrum, put it best when she said, “Electing to shutdown social communication mirrors autistic silence. But it also draws attention to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others. The CHAPP is a powerful way to create a sense of empathy towards those on the autism spectrum.”

Whenever I hear ideas like these, I’m reminded of those Highlights magazine games where you look at a picture and start scanning for all the things that don’t belong there. Where to begin?

First of all, what is the AEIOU Foundation for Children with Autism? It’s an organization devoted to early intervention strategies for autistic children between two-and-a-half and six years of age. Looking at the website, I can’t find any specific information about what those early intervention strategies might be. If we’re talking ABA, I’m outta here.

Despite the lack of specificity about therapeutic strategies, I have no trouble finding information on the website about the people who run the organization. And guess what? Not a single one of them is autistic. Not one. Running an autism organization without any actual autistic people in it is like running a synagogue without any actual Jewish people in it. Of course, if they had autistic people running the place, they might not be raising money for such organizations as the National Autism Association, whose motto is “Think Autism. Think Cure.”

Which leads me to my next question: If “electing to shutdown social communication mirrors autistic silence,” what is the source of that silence? Is it that some autistic people aren’t verbal? If so, our nonverbal fellow autists are certainly communicating in other ways: through art, through writing, through nonverbal behavior. I thought non-autistics are supposed to be stellar about picking up nonverbal behavior. When they’re communicating with one another, they use nonverbal signals all the time. It makes up 90% of their communication. It’s what we autists supposedly lack the ability to do. But when we autists communicate by our behavior, well, that’s just a tragedy.

What’s the tragedy? That people can’t speak? Or that too few are listening?

Whether we’re verbal or nonverbal, does telling people to stay off social communication networks really create empathy for us? The Internet is how we find one another. It’s where many of us feel heard. It’s where many of us feel most comfortable. Staying away from any form of online communication will not draw attention “to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others.” We’re not impeded from connecting socially online. And we wouldn’t be impeded from connecting socially in the rest of the world if people had a little more empathy for how we feel and met us halfway. At any rate, it’s counterproductive to tell non-autistic people to stay away from online sites when so many autistic people overcome “isolation and intense loneliness” by connecting with one another online. How can anyone possibly develop empathy for us if they’re not even aware that we speak loudly and clearly in our online communities?

The big pink elephant in the livingroom, of course, is that autistic people are not silent. Far from it. We communicate all the time, just like anyone else. But we are being silenced every day by the world we live in, and absolutely nothing about the Communication Shutdown speaks to the multitude of ways in which we are silenced:

We are silenced every time non-autistic people say we are silent.

We are silenced when “autism organizations” speak for us rather than including us.

We are silenced when the “autism community” isn’t led by autistic people.

We are silenced every time non-autistic people call each other “experts” and ignore the fact that we actually live the autistic experience every day.

We are silenced when people give to “autism charities” on our behalf, as though we are victims in need of rescue.

We are silenced every time we are ignored, in situations large and small.

We are silenced when people do not have enough empathy to invite us into a conversation.

We are silenced every time we are told we are “too sensitive” in the face of bullying, harassment, and social ostracism.

We are silenced every time that non-autistic people treat us as though we’re broken.

We are silenced by every act of disrespect, dismissal, and ignorance we encounter.

But we do not have to remain silent. Corina Becker at No Stereotypes Here has a counterproposal: Make November 1st Autistics Speaking Day. She writes:

[O]n November 1st, Autistic people should speak up and be heard…[I]n the absence of NT voices, Autistics should reclaim the Autism community by communicating in our own ways on our life experiences…I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our “obsessions”…And so, for the intent of raising Autism awareness and battling negative stereotypes about Autism, I call that November 1st be Autistics Speaking Day.

Her proposal mirrors my initial response to hearing about the Communication Shutdown. Flood the social networking sites with our voices. Provide lots and lots of links to blogs by autistic people. If you’re like me, and don’t use Facebook or Twitter, ask that someone you know publish a link to your best blog pieces.

Raise up your voices. Let us be heard.

And for all of you who want to raise “autism awareness,” I have a simple solution: Listen to us.

© 2010 by Rachel Cohen-Rottenberg

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