Archive for Communication

“I’m Ignoring You Because I’m Just So Terribly Busy!”

October 18, 2010 Rachel Communication, Community, Parenting

Are you sick of the “I’ve just been so terribly busy!” excuse for rudeness? Do you have the uncomfortable feeling that it’s just another form of rudeness? You’re not alone.

Yesterday, I felt like I was up to my eyeballs in this kind of discourtesy. Two situations came together at just the same moment. Both scenarios involved, I kid you not, offers that I made to help others in the community. For free. Yes. For free. Just because it seemed like a good thing to do.

In the first case, I’ve been asking to help out at a place in town since February. Every couple of months, I send the guy in charge an email, reminding him that I’m available to help–for free–and I inevitably get a response along the lines of “I’m just so terribly overextended, and I’ll get back to you soon” and then, I hear nothing. Two months later, I write another email, asking why I’m being ignored and restating my interest in helping out with my highly paid professional skills–for free–and I get much the same response. Sometimes, he throws in, “You know, I’m ignoring a lot of other people too, so don’t take it personally.” It makes me feels so much better to know that other people are being treated equally rudely, don’t you know? And did I mention that I’m trying to help the guy from being overextended by offering my skills? For free? Yes, I am.

The second case involves an individual I was going to do some work for—again, for free. I’ve emailed three times, offering my help. The first time, the other person said, “Email me again in three weeks.” I did. Twice. When I finally said, “You know, if you’ve changed your mind, you can just tell me,” I got back an explanation of how the person was just so terribly busy, and my email just got left on the back burner, because their kid is applying to college, and everything is so hectic, and so on, and so forth, and could I come over on Thursdays? Wha-hah? Did I mention that I spent last weekend providing support and comfort to my own daughter as she worked on her college application essays? And that I still managed to find the time to actually be courteous to people who asked me things? And that even when I was working full-time and homeschooling, I kept track of who needed a response and made sure that no one got left behind? I did.

And do you know why I did? It’s simple: because I was raised that way.

My parents taught me that if someone offers to help with something, or wants to get together, or asks you a sincere question, you get back to the person in a timely manner. My grandfather’s immigrant parents raised twelve kids in a tenement, so they were a little busy and stressed out, you know? And yet, they weren’t too busy and too stressed out to instill this teaching in their children. My grandfather passed this teaching to my mother, who was in agreement on the whole concept with my father, and they passed it on to me. As you know, my parents were about four or five cans short of a six-pack, and yet, even they understood the concept of consideration for the time and the feelings of others.

When I was a kid, I learned all the social rules. I observed them, I listened to people talk about them, and I followed them. And then, at some point, when I was focusing on something even more fascinating, all the rules changed and no one sent me the memo. These days, as far as I can tell, the rule is that you can disregard the value of someone’s skills, time, feelings, and goodness of heart just because you’re busy. It’s the all-purpose explanation. Surely, you understand?

This weekend, I really thought I must be nuts. I felt like the only person left on the planet who even uses words like “rudeness” and “courtesy” in a complete sentence anymore, and the only human who considers them to be something more than the ancient relics of a bygone civilization. I started wondering who was upside down—me, or the world?

So I said to my husband, “Am I nuts?”

And my husband said, “No, honey. You’re not nuts. The world has gone crazy.”

I told the story to a friend on the spectrum this afternoon, and she had the same response. She just couldn’t understand the idea of leaving someone hanging for months on end without an update or an explanation. Neither can I.

I’m old-fashioned, I know. And I suppose that there are people out there who will pathologize my desire for courtesy as a symptom of being neurotically attached to rules and consistency. Well, guess what? That’s how civilization goes on, people. Rules and consistency. Otherwise, you have chaos. You have callousness. You have gross insensitivity to the feelings of others. You have bullying. You have the survival of the fittest.

You have the world we live in.

© 2010 by Rachel Cohen-Rottenberg

34 comments

Grieving the Dream and Living What Is

October 9, 2010 Rachel Childhood, Communication, Diagnosis, Grieving, Parenting, Sensory Processing Issues, Spectrum Pride, Speech

When I first began delving into the words written by parents of autistic children, I found myself troubled by phrases like “the heartbreak of an autism diagnosis.” At the time, I was just beginning to develop a positive identity as an autistic person, and I felt offended that people would feel heartbroken at having a child like me. At the same time, I recognized that the grief was sincere, and that I couldn’t possibly tell someone that his or her feelings were wrong. I’ve been known to argue with an outlook or an idea, but not with a feeling. Feelings, in my view, are not open to disagreement.

I’ve come to understand the grieving, I think. I’ve come to understand it because, having received a diagnosis at 50, I’ve gone through my own grieving process. And what I’ve come to learn is that my grief is not about being autistic. I don’t feel that it’s unfair to have been born autistic. I don’t feel as though some terrible tragedy has descended upon me in mid-life. I don’t curse my fate and wish I were just like everyone else. I’ve never asked who I might have been were it not for my parents’ abuse, and I have no inclination to ask who I might have been without being autistic. Being autistic is intrinsic to my life experience, to my insight, and to the gifts I bring. The One Above made me just as I am, and I respect that.

And yet, I grieve. I grieve the loss of the person I thought I was—the person who could navigate the world like everyone else, the person who could do anything she wanted if she worked hard enough. I grieve the things that I’ve always wanted to do but am physically unable to do. I grieve the loss of my apparently privileged status as an apparently neurotypical person. In short: I’m grieving what was never there to begin with. I’m grieving an idea of myself and of my place in the world. I am not grieving what is or what was. I am grieving what doesn’t exist and what has never existed, except in my own thoughts.

This understanding came into focus in the days after I met with a woman at a local civil rights organization. She works in the area of disability rights, and I approached her in my role as the leader of the Vermont chapter of the Autistic Self Advocacy Network (ASAN). When we set up the meeting, I told her about my auditory processing condition and about the kinds of accommodations I need—namely, a quiet space and a slow conversational pace. She was quite welcoming and offered to meet anywhere I wanted so that the environment would work. We ended up meeting in her office, which is just five minutes from my house.

In some ways, the two-hour meeting went very well. She was very friendly and very dynamic. I learned that she works as an advocate for parents, attending IEP meetings and helping to protect the rights of children. I learned that she does a great deal of anti-bullying and anti-harassment work, running compliance trainings for schools throughout Vermont. I learned that, as a person of color, she had been through severe racial harassment as a student, and that much of her work is powered by the conviction that no child should ever go through bullying at school.

The downside? She spoke very, very fast and provided a great deal of verbal information. I was able to see, right away, that asking her to slow down would not have worked. I don’t think she would have been able to do it. Her work is very stressful, and she was clearly up to the task, but what made her so good at her work also overwhelmed my auditory processing system. As the meeting progressed, I felt more and more overstimulated, and less and less able to find the words I so badly wanted to say. And because I’ve never seen a nonverbal signal in my life, words were all I had. Without nonverbal shortcuts, the process of listening and speaking became exhausting. I probably should have cut the meeting short, but I wanted so much to make connections with other people working on disability rights that I stayed glued to my chair. Needless to say, I needed a few days after the meeting to get my nervous system back into a state of calm and balance.

Helping advocate for the rights of parents and children, especially bullied, harassed, or otherwise vulnerable parents and children, is something I’ve wanted to do all my life. I have a fire inside me when it comes to injustice, and much of the recovery work I’ve done for 25 years has been aimed at being able to go out there into the world and fight the good fight. I want to go to IEP meetings and be a supportive advocate; I want to be able to walk into any situation and do workshops and trainings. When it comes to making right the wrongs of the world, I’ve got the spirit of a warrior. And yet, no matter how patient, how brave, and how intelligent I am, I can’t make my auditory processing system do what it isn’t made to do. I can’t change, by an act of will, the way I process speech and sound. I can’t see a nonverbal cue, and no amount of explaining is ever going to get me to.

As I’ve looked at what happened at the meeting, the truth has become clear: I am an experienced and conscientious researcher, writer, and editor. I am highly intelligent. I am very sensitive. I am absolutely tenacious. But there is something I cannot do: I cannot implement my work in a chaotic or dysfunctional environment. In the quiet of my own home, I can put together a fact sheet about children’s rights. I can interview people and develop materials on bullying and its impact. I can help to create an anti-harassment workshop. I can gather large amounts of information and organize it in a myriad of ways. I can do the behind-the-scenes work, but I cannot go into the thick of things and be effective.

It’s not that I’m incapable. It’s that I cannot find an environment in which it would work. An IEP meeting is not such an environment. A compliance training is not such an environment. Any situation in which people are under stress, not at their best, and talking at cross-purposes is not such an environment. In those environments, almost by definition, accommodation for my disabilities becomes impossible. After all, if the situation were friendly, functional, and fair, there would be no need for me to be there in the first place.

This realization represents the end of a decades-long dream, and there’s sadness there. I imagine that it’s an emotion similar to what a parent feels upon receiving an autism diagnosis for his or her child; it’s the end of a dream, and there’s sadness there, too. I remember how many years I planned for the birth of my daughter, how many years I dreamed of all the fun we would have, how many times I told myself that I couldn’t determine the future and yet found myself looking forward to a multitude of things. Being autistic, I might have had an easier time with an atypical child than most, because I’ve always been the one who is different. But a typical parent has typical dreams, and there is grief in letting go.

In large part, those dreams have to do with life being safe and welcoming to a child and, as we all know, the world is often not a safe and welcoming place for autistics. I have been bullied, and ignored, and left behind, in many different ways, all my life. And yet, I don’t wish I were different. I wish the world were different. I wish that more people defended the bullied rather than the bullies; I wish that more people took the time to get to know me and find out what a great good friend I am; I wish that more people were sensitive to all the things that autistic people need in order to live our lives with more joy and less fear, more inclusion and less loneliness.

The grief I feel is for what never was and for what has yet to be. It’s not for who I am. And I imagine that, for parents, the grief is for the dreamt-for child and the dreamt-for plans; it’s for the opportunities and the safety and the welcoming that the world does not yet make possible. And it’s absolutely right to grieve that child and those plans and the state of the world as we know it. But grieving all those things is different from grieving that we are autistic. I want to say to parents, “The child who is here does not need to be grieved, any more than I need to be grieved. There will be new dreams, different dreams, dreams that are based on what is real—not on the doomsday prophecies of doctors with God complexes, not on research that barely scratches the surface, but on the child you see in front of you, whose life you are committed to nurturing. That’s the only basis for a dream—your flesh-and-blood child, longing for a way to manifest his or her reason for being in the world.”

Each of us is here for a unique purpose that no other person can ever serve. There is so much to be done. So let us grieve our dreams. Let us carry our grief with dignity. And let us get to work.

© 2010 by Rachel Cohen-Rottenberg

26 comments

Word of Honor

September 30, 2010 Rachel Communication, Social Gatherings

Over at Life in the House that Asperger Built, there’s been a great discussion about what happens in the minds and hearts of those of us on the spectrum when people don’t mean what they say. One of the examples in the comments section is the ubiquitous line “We should hang out sometime.”

I’ll admit, I used to believe those words. After all, why would someone say they wanted to hang out and not actually mean it?

Wait….Wait….Don’t tell me….I know this one…..Just give me a moment to think and….

Oh, right! It’s a social formality. A mere pleasantry. A little bit of chit-chat to wile away the precious hours of one’s life. A curious way that neurotypical people say, “I hereby acknowledge that you have not completely alienated me or freaked me out.” That’s all. And yet, I used to think that people actually meant that we should hang out! Then, one day, I looked at my research and realized that the data did not bear out this conclusion.

I won’t lie. (For those of you not in the know, that’s a sign that I have a disorder. More on that later.) When I realized that I couldn’t take people at their word, it pissed me off, but I knew that the only thing to do was to accept the data and proceed appropriately. I didn’t much like the idea of giving in and not believing what people actually said, and yet, I understood that follow-through means everything, and that my life would be much happier if, when people said, “We should hang out sometime,” I just heard “Blah blah blah blah blah.” After all, they might just as well have said, “Blah blah blah blah blah” for all the good it was doing my poor heart and mind, right? Right. So now, I just hear “Blah blah blah blah blah,” and my life is, in fact, much happier. I don’t complain in tones of high self-righteousness to my husband. I don’t get angry. I don’t get disappointed. In fact, I feel myself just a tad closer to being a full-fledged member of American society.

Now, there are some very good things about American society, don’t get me wrong, especially if you are privileged enough to partake of them. And then, there are some really, really fucked up dysfunctional things about American society, too, as most people in America will tell anyone who will listen. The problem is that so few people agree with me on the dysfunctionality of saying words you don’t mean that my unhappiness with the phenomenon has become evidence of a neurological disorder.

I’m reminded of an incident that happened a few years back around my daughter’s birthday. She had invited four friends to go to the movies, then out to dinner, and then back to our house for a sleepover party. All four kids had said they were coming, and we got the house set up for our visitors. When the day of her party came, two of the kids didn’t show up at all, and no one called to let us know they weren’t coming. My daughter had been in school for about a year at this point, and she was completely nonplussed about the whole thing, saying, “Yeah, mom, it happens all the time.” I was very upset, though, and Bob thought it was pretty rude.

So, later that night, I emailed the mother of one of the kids and asked what had happened. Well, it turns out that the family was very busy, you understand, with relatives coming in from out of town, and their daughter had to babysit, and well, they were so terribly, terribly busy that they just plain forgot about my daughter’s birthday party, but they’d be ever so happy to reimburse any expenses I’d incurred on behalf of their child. I told them that I didn’t want their money, and that I was hoping for them to take some actual, um, responsibility. The response? “Apparently, we’ve really disappointed you.” No shit, Sherlock.

A few days later, I spoke about the incident with my counselor, a neurotypical woman who completely agreed with every word I said. She had come to America from Portugal as a child, and she knew right away that something was very much awry with the society she had entered. She said that in the culture she came from, your word was your bond, and people had a sense of honor. If you said you were going to do something, you did it. Your reputation, your honor, and your sense of ethics all demanded it.

So there. I have it straight from the mouth of a neurotypical woman that this whole thing is a question of social and ethical norms (or the lack thereof), not a question of neurology, literal thinking, failure to read nonverbals, or any other goddamned thing that other people want to lay on us to excuse their own behavior.

And so, dear readers, if we ever meet up, and I say, “We should hang out sometime,” rest assured that I mean it. It may not happen right away. It may not mean that we’ll actually want to hang out a second or a third or a fourth time. It means that we should hang out sometime. I say what I mean and I mean what I say. If you are willing to meet me halfway, we will hang out. Word of honor.

© 2010 by Rachel Cohen-Rottenberg

22 comments

Visual Hearing and Self-Advocacy

August 19, 2010 Rachel Communication, Disabilities, Hearing, Modes of Thought, Photography, Self-Advocacy, Sensory Processing Issues, Visual/Spatial Skills, Word Pictures

Back in July, I underwent a two-hour audiology assessment. I got the full report in the mail last week, so I thought I’d share the results and how they lend themselves to self-advocacy. From a medical point of view, I have the following:

A mild hearing loss in my right ear
A moderate hearing loss in my left ear
Tinnitus
Auditory processing disorder

I hadn’t been aware of the hearing loss, so I wonder whether it’s really a “loss,” or whether I’ve always heard that way. I also wasn’t aware that the intermittent, high-pitched sound in my head was tinnitus; I’ve experienced that sound, on and off, all my life. Of course, the interesting auditory processing system I carry around was not news to me, although it was fun to have it show up in an audiology report instead of constantly having to convince people to take my word for it.

But that’s the medical point of view. From my internal point of view, the assessment showed me, in new and interesting ways, just how much I rely upon my visual sense to translate sound, and just how much I need to advocate for myself as a visual hearer.

The audiologist gave me several hearing tests, all of which took place in a sound-proof booth. (Heaven!) After I told her that my experience of sound is acute, she adjusted the volume for each test so that the sound would not be aversive. For the first test, in order to get a baseline for what I could actually hear, she simply gave me a series of words to repeat. Then, things got really interesting.

Binaural Interaction
The binaural interaction test measures word recognition in noise. The audiologist played a series of words spoken in the midst of noise—noise that I can only describe as a combination of static and the sound of an airplane flying somewhere in the vicinity of your house. Not fun. In my left ear, I could recognize 80% of the words, which rates somewhere in the middle of Good; in my right ear, I could recognize only 68%, which lies at the border of Poor. (Poor is below 68%.) What’s interesting to me is that I could distinguish sound better out of my left ear, in which I have less hearing, than in my right ear. It’s possible that hearing less allows me to filter out sound a little better. I’m not sure. At any rate, during the assessment, the only way for me to distinguish the words from the noise was to see them as spelled words and hold them in my memory. Each time, my repetition of the word was delayed because I had to work quickly past being overwhelmed, somehow fish the word out of the noise, hold it in my mind, look at it, and read it out loud.

Binaural Integration
The binaural integration test measures how well the subject can hear out of both ears simultaneously. 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. I got very anxious at the prospect of having to decode competing sounds, but I did surprisingly well on this test: 90% in my left ear and 92.5% in my right ear. However, the high scores are deceiving, because the process was not in the least intuitive. I kept my eyes closed, I listened very hard, I memorized what I heard, I visually lined up the images of the numbers in my mind’s eye, and then I spoke them. I did lots and lots of work, which resulted in lots and lots of delay. It’s a good thing I’ve developed lots and lots of patience.

Auditory Closure
The auditory closure test measures how well the subject can hear words spoken very quickly. Yikes. For most of the test, I was guessing. Sometimes, I simply couldn’t hear a thing; I’d just throw up my hands and shake my head. When all was (very quickly!) said and done, I scored 48% in my left ear and 52% in my right ear. On the overview from the audiologist, those numbers don’t even show up in the range of possible results. In the understatement of the year, the report notes that I am “presenting below normal limits in this area of processing.”

This test was very difficult because I couldn’t hear the words clearly enough to form a 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. (Later in the assessment, the audiologist ran a test that showed that the cilia in my left ear, which should be picking up these frequencies, are inactive. I believe she referred to them as “dead.”) 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. For instance, for the word stop, I was hearing sto-. For all I knew, the word could have been stop, stock, or stall. 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.

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. I took this test twice. The first time, I used my hand to replicate each sound. If the pattern was “low-low-high,” I moved my hand twice on the same plane before moving it up once. By doing this, I was able to see the sound visually and give the answer. When the test was over, I told the audiologist about the method I’d used, and she said, “Okay. We’re going to do the test again. This time, sit on your hands!”

I tried not to panic. She played the sounds again. This time, I saw the sounds in my mind as colored dots: pink for low and red for high. Apparently, this is a form of synaesthesia, something I don’t remember having experienced before. Since I’ve long had synaesthesia-envy, this was very cool.

Using my visual strategies, I scored 100%, in each ear, on both tests. After all, ordering things into patterns will be the last of my faculties to go.

Recommendations for Self-Advocacy
The audiology report lists recommendations for how to walk through the world and self advocate with my way of hearing:

1. During communication, decrease background noise (such as scraping chairs, running water, fans, and talking).

2. If instructions or directions are given verbally, check in with the person providing them to make sure that I’ve understood what has been said, particularly if no written instructions are available.

3. Request written information to supplement any auditory information. For example, when making an appointment with a doctor, request a card with the date and time.

4. As often as possible, ask that others present information sequentially, especially if more than one person is providing the information. For example, instead of “Before you watch TV, can you walk the dog and take out the trash?” ask others to say, “Can you walk the dog, take out the trash, and then sit down to watch TV?”

5. Ask if I do not understand or if I have missed something. It is important to be as open as possible about communication so that when breakdowns occur, they do not result in anxiety, frustration, and anger.

6. Repeat what I have heard to clarify that I have understood. If I have heard part of the message but not the whole, I need to repeat the information I did hear while asking for clarification of the information I missed. For example, if someone says, “The elephant is sitting on the sofa in the livingroom,” and I heard the part about the elephant, I need to say, “The elephant is sitting where?” If I heard only the part about the sofa in the livingroom, I can say, “What did you say about the sofa in the livingroom?”

I find it a challenge to put these kinds of recommendations into play, but I am making progress. It’s really just a question of inertia. I’ve spent so many years covering up my difficulties and guessing at what people are saying that it’s an adjustment to switch to words like, “I don’t know. Could you clarify?” But it’s been an immense relief to find out that my difficulties are due to differences in the way I hear sound, rather than absent-mindedness, or lack of intelligence, or just plain not caring (all false explanations with which I’ve bludgeoned myself over the years). It’s not a question of attention, intelligence, or love. It’s that I hear sound visually. It’s a simple difference. It’s much easier to ask for help with a difference than with a moral failing. At least, it is for me.

It’s now clear why I’ve been a writer since I first learned to hold a pencil. I’ve spent most of my life struggling to decode sound and render it into words. It’s only in the past year and a half, since I’ve allowed myself to block my hearing, that I’ve realized that my pure visual sense is extremely acute. Because I now don’t need to decode sound constantly and to the exclusion of all else, I can notice what my other senses are doing. There are days in which I can’t even think about putting something into writing. I’m too involved with the pure fascination of the visual world and with rendering it in drawings, paintings, photographs, and other kinds of art.

But I’ll never lose my attachment to the written word. In the world of sound, it’s my anchor.

© 2010 by Rachel Cohen-Rottenberg

13 comments

Alternative Communication Technologies

July 21, 2010 Rachel Communication

For those of you who have difficulty speaking and listening, here are some of the alternative communication technologies I’ve discovered.

TTY Relay Service
If you obtain your own TTY number, you can call any phone number and communicate via a relay operator. Using your computer, iPhone, or iPod Touch, you type your part of the conversation. The relay operator speaks your words to the person at the other end, and then types the person’s response for you. This service is wonderful and has allowed me to make phone calls again—and this time, without difficulty and exhaustion. And best of all, it’s free!

You can immediately obtain a TTY number through Purple Communications’ IP-Relay for use on your computer, iPhone, or iPod Touch at www.ip-relay.com. You can also obtain a TTY number for use on your computer through NexTalk at www.nextalk.com. It takes a while to obtain the number through NexTalk, but you can begin making outgoing calls right away. I find that using my iPod Touch is good for leaving short messages. If I want to have a longer conversation, I use my computer. If someone calls when I’m not online and leaves a voicemail message, I receive the message by email.

Text-to-Speech Synthesizers
Speak It! is a very nice little text-to-speech synthesizer for use on your computer, iPhone, iPad, or iPod Touch. It costs $1.99 and is available through iTunes.

For use on your computer alone, you might want to try NaturalReader at www.naturalreaders.com or SpeakComputer.com’s TTS (Text to Speech) Software at tts.speakcomputer.com. Both are free.

Text-to-Text Devices
If you find yourself in a place with your laptop, a wireless connection, and another person with a laptop, Skype and IM are great ways to communicate in a text-to-text fashion. However, in situations in which a wireless connection is not available, I use SComm’s Ubi-Duo, a portable text-to-text device consisting of two consoles with their own wireless connection. So far, I have used the Ubi-Duo at my doctor’s office and my attorney’s office, with great results. You can even save the text of each conversation; my doctor finds this feature very helpful, because I can print the entire contents of our appointment and she doesn’t need to take notes. I plan to start using the Ubi-Duo at my Voc Rehab appointments as well. You can find more information about this device at www.scomm.com.

The only drawback to the Ubi-Duo is its steep price: $1,995.

I am very glad to have found all these technologies, because it’s now official: I have an auditory processing disorder. I’ll write more about my appointment with the audiologist when I receive her full report.

© 2010 by Rachel Cohen-Rottenberg

2 comments

Embracing the Social Model of Disability

July 15, 2010 Rachel Belonging, Communication, Community, Disabilities, Self-Advocacy, Spectrum Pride

In my last article for The Commons, our local weekly paper, I wrote about the distance I often feel from the non-autistic world, saying “[I]f you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do.” The feeling was an honest one, and yet, I’ve been troubled by these words from the time I first saw them in print.

I’ve thought long and hard about why, and I finally have an answer. I’ve come to realize that while I sometimes experience myself as living worlds apart from non-autistic people, this feeling is not a function of my autism. I am not actually worlds apart from anyone because I am autistic. I feel worlds apart because the world in which I live is not yet inclusive enough to take my particular set of strengths and sensitivities into account.

In the larger world, two models of disability are always in play. The first is the medical model, which posits that something is wrong with me, something from which I “suffer,” something that must be treated and perhaps someday “cured” by medical intervention. In this model, my autism is a disorder, and I am somewhere “over there,” apart from regular folks, separate and unequal.

I have sometimes found myself trapped by this point of view, mainly because I have imbibed about a half-century of negative ideas about autism and the general condition of being disabled. I had accepted without question the idea that all autistic people would rather be non-autistic, and by extension, that all physically atypical people would rather be typical. After reading the eloquent and searing words of many disabled people, I have come to understand that this point of view is a serious distortion. Many, many of us are proud to be who we are and would not want to be different. The Deaf community is a perfect example of a group that embraces its experience of the world as perfectly valid and celebrates its own unique culture. The Autistic community is beginning to do the same.

Of course, there are disabilities that require medical intervention for health and quality of life. However, not all disabilities fit this model and even when they do, they cannot be entirely defined by it. Personally, I have moved away from the medical model, mainly because it tends to create a hierarchy in which some people’s lives have value and other people’s lives do not. It creates a mindset in which we celebrate the lives of some people, while mourning the lives of others, simply based upon physical difference. I do not accept this way of understanding the richness and complexity of human life. I find it unjust and divisive.

An alternative lens through which to view disability is the social model. According to this model, disability is a social construct. That is, one can only be disabled in relation to an accepted norm. So, all the things I value about myself—my acute sensory sensitivities, my deep ability to empathize, my visual acuity, my ability to enjoy silence and a slow conversational pace—become disabilities simply because I live in a culture that does not value them. For example, because I have hyper-acute hearing, I have to wear earplugs when I go downtown or into any sound-filled environment. Until recently, I’ve thought of my hyper-acute hearing as a problem, because I find it very hard to converse with other people in public or to concentrate in the midst of noise.

But my hearing isn’t a problem in isolation. It’s only a problem because I live in a very loud culture—full of noise, full of words, full of TVs and radios and music playing everywhere I go. If I lived in a quieter culture, my hyper-acute hearing would not be a problem. In fact, when it comes to keeping people safe from harm, it would be an asset. In the same way, if I lived in a culture that valued deliberation and a more measured verbal pace, I wouldn’t have the problem of being constantly left behind. In a society in which impulsive action and rapid speech trump other ways of experiencing life, I cannot possibly keep up.

In the face of this mismatch, the only way for me to stay connected to others is to consistently ask for other people to adjust the environment so that I can be present. For example, at one of the stores in town, I ask a staff person to turn off the music when I come to shop, and whomever I ask is always happy to oblige. Everyone who works at the store wants the place to be accessible to me, and and they know that I cannot operate in an environment with music coming from every speaker. Because the staff is willing to be flexible, I have full access, just like everyone else. In stores with loud music playing, the environment is so aversive that I cannot enter, and full inclusion becomes impossible.

Moreover, when I go to my doctor’s office, I use a text-to-text device in order to communicate. Doing so allows me to avoid coming home in a state of auditory overload. My husband and I had to work long and hard to find a doctor open to this form of communication. Because it was a painful, discouraging, and exhausting process, I feel especially fortunate to have happened upon a sensitive doctor. At my last appointment, in fact, something wonderful happened. After we had been typing back and forth for about a half hour, she said, “I’m exhausted. I’m not used to typing so much. Now I know how you feel with your auditory processing challenges.”

And I replied, “That’s amazing. Writing and typing are so natural to me that I forget that other people could find them difficult.”

It was a perfect moment. She understood me. I understood her. I didn’t feel worlds apart at all. I had a different way of communicating during appointments—that was all. My way of communicating was no better and no worse than anyone else’s. At that moment, I became more than the sum of another person’s preconceptions. I felt myself a part of the world, able to express myself fully, with a presence equal to that of every other human being.

So, yes, if you are typically abled, I sometimes feel that we live worlds apart. But it doesn’t have to be that way. If we lived in a society that took human diversity for granted, that made room for difference as a deeply held value, every one of us would benefit. Our view of one another would become much more expansive, much more respectful, and much more compassionate. Ultimately, we might even see one other as perfectly different and perfectly human.

© 2010 by Rachel Cohen-Rottenberg

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My Father and Selective Deafness

June 29, 2010 Rachel Childhood, Communication, Hearing, Sensory Processing Issues

I’ve had an epiphany lately regarding my father and some of his formerly most mysterious and annoying habits.

As I’ve written before, it’s apparent to me that my dad was on the spectrum. Of course, no one ever talked about such things back then, so when I was growing up, the family explained my father’s oddities by saying that he was hard of hearing. Of course, he never went to an audiologist or had hearing aids or any of that nonsense. My mother used to say that he’d been born with nerve damage in his ears, and that no one could do anything about it. I’m virtually certain that she made up that story to explain the inexplicable, since she made up a lot of stories, and she believed them, too.

My father’s hearing issues were very aggravating to me as a kid, because every single time I said something, the very first thing out of his mouth was, “What?” Every single time. It was a reflex. It didn’t matter how loudly or how softly I spoke, or what else was happening in the room. He’d always say, “What?” When I had the patience, I’d repeat myself, in exactly the same tone of voice, and then he’d hear me. When I’d get exasperated with him and say, “Why aren’t you paying attention to me the first time?” his response would always be the same: “You’re mumbling.”

And that response would send me into the stratosphere, because I Did Not Mumble. No one else in the entire world ever said I mumbled. I knew that I was enunciating the English language perfectly well, and I still get an adrenaline rush just thinking about my father telling me otherwise. He knew how much it bothered me because, after awhile, he took on a new annoying habit: when he couldn’t hear me, he’d say “You’re mumbling,” and he’d laugh. And then I’d say, “I am not mumbling. You are not hearing me.” But it never made a difference. It was always “What?” and “You’re mumbling.” By the time I left home, it had nearly driven me up the wall and back.

For several years afterward, I continued to buy the idea that my father was hard of hearing. Then, one day, when my parents were visiting in California, everything changed. We were all in the car; my father was driving, and I was in the back seat. There was lots of ambient noise: highway noise, the sound of the car wheels running over the pavement, and everything else you hear in a car going 65 miles per hour on a six-lane freeway. Nonetheless, I said something to my father. I can’t even remember what it was, because I figured he wouldn’t hear it anyway. But, miracle of miracles, he heard me. The first time. Without saying “What?” or “You’re mumbling.” He just heard me, like a regular person, and he just answered me, like a regular person.

I suppose I should have felt angry, as though he’d been playing some sort of weird game all those years, but I wasn’t. I intuitively knew that he really had heard me clearly at that moment, and that he hadn’t been able to hear me before. I became fascinated by the contradiction, but I really didn’t know how to explain it.

These days, though, it makes perfect sense to me. After all, when I go out into the world, I often block my hearing—with earplugs, a Peltor headset, or both. Today, I’ve been able to wear just my earplugs, and hear people as though they’re at a distance, and say a few words in order to get my errands done. But tomorrow, when I go to my Voc Rehab appointment, I will have to wear the headset in order to block out ambient noise and allow myself to concentrate. In other words, I render myself more or less able to hear as needed.

I’m now realizing that my father must have had the same amount of auditory sensitivity and processing difficulty that I have, and that he intuitively came up with a survival strategy. Somehow, he selectively rendered himself deaf. It’s as though he just shut down his attention and literally couldn’t hear, and his saying “What?” was his signal to bring his attention back up. This strategy also provided him with a way to cushion himself against having to hear everything loud and clear the first time, and thus avoid becoming overloaded by it. It really was quite a brilliant strategy, and I’m in awe that he was able to pull it off. As for me—I simply cannot let my auditory attention wane. It’s always on alert, unless I block my ears. Then, even if I can hear somewhat, the person talking feels further away and the sound of his or her voice doesn’t penetrate my nervous system with anything like the same intensity. Somehow, my father was able to give himself the same experience without having to explain why he was wearing a lawnmower headset to go shopping.

My father is now gone, and even if he were still alive, he would not for a moment accept anything that I’m saying. He wouldn’t accept that we were both on the spectrum, he wouldn’t accept that we both had extraordinary sensory sensitivity, and he wouldn’t accept that I couldn’t overcome all of it by sheer force of will. In fact, he’d laugh me right out of the room for even broaching the subject.

So I’m just left with a new understanding of my dad, and it makes me feel closer to him. It consoles me to understand him better now.

© 2010 by Rachel Cohen-Rottenberg

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Happiness

June 27, 2010 Rachel ASL, Communication, Community, Happiness

I am happy. Why? Well, let me tell you!

I am halfway through my medication taper, and while it’s been a rough road, I am feeling better and better every day. Just the knowledge that I am getting these benzodiazepines out of my system makes me feel good. My mind is clearer, my mood is better, and I feel more resilient. The benzos were literally depressing the hell out of me. They caused me no end of problems, some of which they had originally been prescribed to treat. I’ve learned that there are thousands upon thousands of others who have discovered the same thing, and who are now working hard to say good-bye to these medications forever.

I am going out for long walks every day, whether I feel like it or not, whether it’s raining or not, whether I feel like a train wreck or not. I’ve taken my stationary bike out of my loft and stored it in the garage, because cycling indoors just symbolizes isolation to me. I have to get outside everyday and feel part of the world, and I will continue doing so even when it’s cold out. I’ve done it before, and I will do it again.

I’ve started cooking delicious, healthy meals. I can now make a great tofu curry dish and today, I’m going to make a Mexican-style meal. It’s amazing to enjoy cooking again. I’ve discovered that what overwhelmed me was not the cooking per se, but the feeling that I had to come up with a new dish every other day, instead of just building up my repertoire, one dish at a time, over a more manageable period of time. I’m still learning the concept of “slow and steady.”

I have started using the library, and it feels so calming. It sure is nice to go into a building without piped-in music.

I’m continuing to experiment with alternative communication technology, and I’m studying ASL again. I’m realizing that it’s time to get serious about giving myself alternatives to speech when I need them.

I have met some new autistic people in town! It happened in the oddest way: A local guy named Jesse emailed an ASAN board member in Oregon, looking for an ASAN chapter in Vermont. It just so happens that this ASAN board member in Oregon is also a friend of mine (Hi Elesia!), and told him that I was starting up an ASAN chapter in southern Vermont. (I had corresponded with Elesia some time ago about being the chapter leader here, but hadn’t done much to move it forward.) So, she put us in touch with each other. As it turned out, Jesse is on the spectrum, and works with autistic middle schoolers and high schoolers! He was putting together an event for Autistic Pride Day on June 18, so I showed up for that, and met some new people. Since then, he and I have been emailing and discussing all kinds of things, including ideas for getting an ASAN chapter off the ground here. He and I are both very interested in self-created autistic community and he plans to introduce me to others.

And, last but not least, I have finally remembered what I learned long ago: creating happiness is up to me. For reasons having nothing to do with me, people will not always come through, and I have to be able to maintain my self respect, my dignity, my individuality, and my sense of self. In other words, whatever happens, I have to hold onto my power and use it for my own good and for the good of others. It’s not always easy, but it’s always necessary.

It’s tough to keep learning the same things over and over, but I think that’s what we humans do. We get lost, and then we have to find the way back, again and again.

© 2010 by Rachel Cohen-Rottenberg

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In Celebration

May 31, 2010 Rachel Aging, Communication, Spectrum Pride

When I gave birth to my daughter, I was 34 years old. I remember quite clearly watching the nurses weigh and measure her. I remember how loudly she was yelling when they bathed and swaddled her. I remember how calm and quiet she became when they put her into my arms for the first time, because she could once again hear the familiar sound of my heart.

And I remember thinking, “She’s brand new. We’re at the beginning. When she’s 18 and ready to leave home, I’ll be 52. I’ll be so old! That’s forever away.”

And this year, I’m 52, and my daughter is talking about going to California after she graduates high school.

Please be assured that this post is not another meditation on how fast the time goes, or how brief it all is, or how hard it is to let go, even though all of those things are true.

This post is about reaching a crossroads, about making a commitment, about finding the strength to face what comes. It’s about doing all the same things I did on that day that my daughter was born, except that now I do them in celebration of my own birth and my own life.

It used to be that I hated thinking about my birth. It reminded me of my parents. It wove me back into the fabric of who they were, because I had to remember who gave me my body, my eyes, my face, my DNA, my life.

But now, suddenly, I want to celebrate by giving myself the only gift worth having: the gift of myself.

Yeah, I know that sounds hokey, but I am not in a hokey mood. Far from it. I’m not talking about a kind of New Age “love and embrace the special soul that you are” moment. I’m not talking about a kind of religious “I, too, am a child of God” moment. And I’m definitely not talking about a psychotherapeutic “I am lovable and worthy of love” moment.

No, I’m talking about something much more fierce and powerful than that. I am making a commitment to take myself back. Here is my declaration of intention, toward which I will strive with all of my ability:

I will no longer do anything that hurts my body, whether other people understand or not. If speaking hurts, I will not speak. If hearing hurts, I will not hear. If being touched is beyond my ability to tolerate, I will not be touched.

I will not attempt to shoehorn myself into some model of non-autistic consistency, in which if I can speak sometimes, I must speak always, and if I can hear sometimes, I must listen always, and if I can be touched sometimes, I must accept touch always. Those days are done.

Sometimes, I will speak and I will listen with my ears, only because sometimes, in specific situations, with specific people, at specific moments, when I’m calm and rested, and a million other factors that I can’t define come into play, everything comes together and it doesn’t hurt. I can’t always predict those moments, but I will recognize them when they arrive, I will choose to engage them with integrity, and I will not be pressured into doing otherwise, by anyone.

I will protect my health by communicating with others in a way that works for me, even if it takes time and other people would like me to go faster. When doing business out in the world—at the grocery store, at the bank, at a tag sale, anywhere—I will use my iPod Touch and any other appropriate assistive technology at my disposal.

I will no longer be a victim, living in fear, apologizing for who I am, and meekly asking other people to accept me.

I will live with all the fierceness and fighting spirit I’ve had from the day of my birth, and I will not turn them over to anyone.

I will insist upon my right to be treated as a complete human being, in all times and in all places, and I will not back down.

© 2010 by Rachel Cohen-Rottenberg

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Disabled Like Me: An Autistic Woman in Search of Kindred Souls

May 11, 2010 Rachel Communication, Community, Disabilities, Friendship, Self-Advocacy, Spectrum Pride

Last night, I wrote the following article for submission to my local weekly paper. I’d like to get your comments, feedback, and constructive criticism before I send it in. Please let me know what you think.

Disabled Like Me: An Autistic Woman In Search of Kindred Souls
by Rachel Cohen-Rottenberg

If you are a typically abled person, you and I may have a great deal in common. I am married to a wonderful man. I have a teenage daughter getting ready to spread her wings. I love taking long walks in quiet places. I lose myself in creating things of beauty. I knit, I quilt, I sing, and I write. I try to eat healthy food, to exercise every day, to treat people with kindness, and to give a friendly hello to my neighbors.

Sometimes, I succeed. Sometimes, I don’t. In this regard, I am no different from you.

And yet, if you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do. I cannot go to parties or to restaurants; when too many people talk at once, I can’t distinguish one voice from another, and I become overwhelmed. I can’t go into stores with music playing and talk with others, because I can’t filter out background noise. In fact, there are stores in town that I cannot enter at all. The music is so loud that it assaults my nervous system and literally renders me incapable of thought.

I am able to speak, but sometimes, I have difficulty following the words that other people say. For this reason, talking on the telephone is an experience that I avoid at all costs. I have an extensive written vocabulary, but initiating and maintaining a typical social conversation is often beyond my grasp. Sometimes, I can’t find the words at all; at other times, I can’t find them quickly enough. Even when I find the words, I sometimes need to rest for hours or days afterward in order to recover from the effort.

Then again, there are people with whom I “click,” with whom talking is not a particularly difficult challenge at all. And then there are people with whom I am quite comfortable being almost entirely silent.

Despite my challenges, I do not consider myself a collection of deficits. In fact, I consider my autism my greatest strength. I am acutely empathetic and highly sensitive to all things emotional. I experience the visual world quite vividly and intensely. I have a childlike innocence that I value deeply. I am very direct and honest. I do not understand deception or cruelty. I think associatively and visually, and I arrive at insights and solutions impossible to locate with linear logic. I’m creative, intellectually curious, and fascinated by the diversity of the world. Much goes on beneath the surface.

Unfortunately for all of us—for you and for me—the word autism carries a stigma. I can’t count the number of times I’ve told someone I’m autistic and received a response along the lines of “Oh, I am so shocked and so sorry.” I’ve had friends back away. I’ve had potential allies in the community drop out of sight. I’ve seen people stare rudely at the noise-blocking headset I sometimes wear in public, and then I’ve seen them look away quickly, without a smile, without a wave, without acknowledgment that I am just like them, as though my disability has trumped my humanity.

In the year and a half since my autism diagnosis, I’ve learned firsthand what it means to be disabled. I’ve learned what it means to be invisible, to be marginalized, to be apart, to not be able to keep up, to not be understood, to not be seen as a person of equal value. I’ve known deep loneliness and isolation, and I’ve learned that these experiences are shared by many disabled people, whether our disabilities are visible or not.

I am fortunate in having a husband and a daughter who love me, friends spread throughout the country who support me, and places in the local community in which people welcome me as I am. And yet, I long for the friendship of other developmentally atypical people. I see other disabled people around me, and yet, I have not found a way to reach out directly. My sensory and communicative differences make reaching out problematic. And then, of course, there are people in the community with invisible disabilities, who look “typical” but experience the world in atypical ways. How are we to find each other?

I don’t know a better way than to write, so I am reaching out now, in the best way that I can. It matters not how old you are, what your disability is, or at what “severity” level a medical professional has diagnosed you. I am reaching out to say that I am here, that I would like to find you, and that I would like to affirm and celebrate who we are.

If you would like to connect, you can reach me by email at rachel@journeyswithautism.com. And if you see me around town, feel free to give me a friendly smile and say hello. It will mean the world to me.

Rachel Cohen-Rottenberg is a writer living in Brattleboro. Her memoir The Uncharted Path: My Journey with Late-Diagnosed Autism will be published later this year.

© 2010 by Rachel Cohen-Rottenberg

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