Archive for September 29, 2009

Faces of Autism: An Antidote to the Latest Autism Speaks Video

September 29, 2009 Rachel Spectrum Pride

For anyone who hasn’t heard about the latest insult from Autism Speaks, see Stat Mama’s excellent review of their current piece of money-making, fear-mongering, bigoted, misleading, negative garbage video. For those of you who, like me, are easily provoked into day-long internal diatribes that go nowhere, give you a headache, and keep you up at night fuming upset, you might want to skip the video. Stat Mama’s review has enough quoted text to convince you that if you’ve been avoiding Autism Speaks videos like the plague, you should continue to do so.

Lucky for us, there are people on the Internet who have incredible blogs about their beautiful autistic kids. One of my new favorites is Mother of Shrek, written by the mom of C, a 21-year-old, nonverbal, autistic young man. In the course of reading this blog, I discovered a jewel. In addition to Mother of Shrek, C’s mom publishes a blog called Faces of Autism, on which she posts photos of autistic children and adults that her readers have sent in. On the right side of the page, there are even photographs of artwork by some of the folks in the pictures. The site is a labor of love, and it makes my heart sing every time I stop by.

Yesterday, I sent in a photo of myself, along with a picture of one of my mobiles. I’m pretty sure that I’m the oldest person on the site now, but I wouldn’t mind any of you one-upping me. C’s mom is happy to use only first names or even first initials to protect your privacy, and you can write a little blurb to go with the photo, too.

The positive images on Faces of Autism are a welcome relief from the work of Autism Speaks. I hope you’ll take a look.

© 2009 by Rachel Cohen-Rottenberg

11 comments

Comments and Coming into the 21st Century

September 29, 2009 Rachel Administrative

Hi everyone,

I’ve been thinking about my attachment to getting comments on my blog.

The main reason I’ve been craving your comments is that it’s been the only means by which I know that people are reading my posts. But I definitely don’t want anyone to feel pressured to comment. We all have enough struggles in the world without taking on more. I want my blog to be a place in which people can come to get information, to feel reassured, and to ease the isolation that can result from living with autism. While I welcome your comments, I don’t want anyone to feel obligated to leave them.

So, last night, I officially entered the 21st century and figured out a way to see how much traffic my blog generates. I’ve installed Google Analytics, which lets me know how many folks read my blog from day to day. As long as I know that people are finding my blog and reading even one article, I’m very happy. So please, feel free to read anything you like here while maintaining your anonymity and conserving your energy. I wouldn’t have it any other way.

© 2009 by Rachel Cohen-Rottenberg

11 comments

Getting Off the Wheel: How to Be Autistic and Deal with It Already

September 27, 2009 Rachel Belonging, Communication, Friendship, Loneliness, Spectrum Pride

I know I’ve written lots of posts with all kinds of ingenious solutions to the various sensory, emotional, social, spiritual, and logistical challenges of my autistic life. And yes, I’m a very creative person when it comes to thinking this stuff up, and I always live in hope that this time (as opposed to the innumerable other times), my wonderfully ingenious and creative solution will take care of whatever the problem du jour happens to be.

Well, my friends, I’m terribly sorry to have to inform you, but after 51 years of alternating between innocent hopefulness and complete desperation, it’s time to get off the wheel. I am who I am, and my life is my life. Some things will never change. Ready for a list? Of course you are!

1. I am invisible to the average person.

Yes, it’s true. I am just under 5’1″. I weigh almost 110 pounds. I have a head. I have a torso. I have two arms, two legs, ten fingers, and ten toes. I have mass, weight, and occasionally, momentum. I am a carbon-based life form. And yet, most people cannot see me, even when I am standing right in front of them.

Don’t ask me to explain it. I have lots of creative ideas for why it happens—I put out weird social signals, blah blah blah—but those ideas just don’t cut it when you consider the fact that I am actually an incarnate being. 

A case in point: Last week, I needed to get a ride to a 6:00 pm appointment. Because Bob was not going to be home, I called a friend a few days before and asked whether he could give me a lift. He was so happy I’d asked! I was so happy I’d asked! He said, “Sure! I’ve been wondering what I could do to help.” So, we planned for him to pick me up at 5:30 on Monday evening.

The appointed time came, and I sat on the porch to wait. It was 5:30. Then, it was 5:35. Then, it was 5:40. Uh oh. Had he forgotten?

I called. He picked up. He said, “Oh, my God! I forgot. I remembered this morning. Then, I forgot!”

To his credit, he got right in the car and came over. He also apologized profusely, and because he is a very nice person, I said lots of things to help him feel better, like “Hey, that’s okay, I have to practically tack a list to my forehead to remember anything!” But inside me, in my heart that broke one more time, I had that old familiar feeling of being invisible. After all, my friend had made lots of arrangements to see my husband for dinner, and he’d never forgotten any of them. This arrangement was the only one we’d ever made, just him and me, and he forgot.

Again, I have no explanation. I appear to phase in and out of people’s memories in the same way that I phase in and out of their fields of vision. It’s one of the great mysteries of creation. Why I’m not included in the Guinness Book of World Records or Ripley’s Believe It or Not! is beyond my comprehension.

2. Most people think I’m strange.

I know, I know. It seems impossible, but it’s true. Inside, I feel pretty goddamned normal, and even a little boring, but most of the world considers me an odd, autistic duck.

Quack.

3. I cannot connect with most people.

I try. I do. Like crazy. Why else do you hear all of those words spilling out of my mouth? Yeah, I know, they don’t help me connect. They tend to make people smile and back away slowly.

And yeah, I know, I could shut the hell up, but shutting the hell up doesn’t help either. I shut the hell up, and then I get to hear about everyone else’s life without getting a word in edgewise. It’s exhausting. And it pisses me off no end.

Now, bear in mind that I’ve read about the path of moderation. I’ve spent a lot of time trying to find the middle ground. I’ve watched so-called normal people operate, and I’ve tried to emulate them. My husband is particularly good on the moderation thing, and for many years, I tried to mimic his rhythm, his words, his affect. Guess what? Are you sitting down?

It didn’t work.

4. People tell me what a marvelous, spiritually evolved, loving, peaceful, giving, friendly, hard-working, and intelligent person I am, but no one asks me to lunch.

How is that possible? Does my spiritual radiance overpower them? I have no idea.

5. People ask my husband what they can do to help, but they don’t ask me.

Isn’t that odd? Oh, yeah, right. I’m invisible. You can’t look into my eyes and ask what you can do for me—I mean, not without looking like you’ve lost it.

Of course, you really shouldn’t be asking anyone what you can do to help an invisible person anyway—unless you are committed to the idea of making the person visible. But then again, if you were committed to that idea, you wouldn’t ask my husband how to help. You’d just pick up the phone and call me, or send me an email, or walk over and engage me in a conversation.

6. People tell me that they want to get together, but oftentimes, when I suggest a time, they don’t respond, and I can’t understand why.

Because he is a wonderful person and likes to think the best of people, my husband tries to explain these things. The problem is that every explanation comes down to “That’s just how it is.”

Yeah, I know that’s how it is. That’s why I brought it up in the first place.

7. When I write blog posts and don’t get much of a response, I feel sad and disappointed, and then I kick myself in the ass for being such a baby.

Come on, you other bloggers. Admit it. You KNOW you feel that way. Sometimes.

8. I try really, really hard to accept having only online friends, but I still crave a 3-D friend, big time.

9. I am afraid to reach out to people, because I’ve gotten disappointed so many times, but then I get pissed off when no one calls.

Yeah, okay, I admit it. I want someone to look at me and say, “Oh, my. That person is in distress. I must help. I will ask her how to help. And then, I will actually do at least one thing she suggests.”

You may say I’m a dreamer, but I’m not the only one…

10. I actually have moments in which I believe that if I just explain all of these things to your average human being, he or she will understand.

…I hope someday you will join us, and the world will live as one.

I’d like to accept this state of affairs. I really, really would. I’ve had enough great ideas blow up in my face that my body and soul feel like they’re trying desperately to wave a white flag and surrender. They want to negotiate a truce. They’ll take whatever terms I give them, so long as I stop coming up with Great Ideas That Will Solve Everything. They’re tired of the disappointment. They’re tired of watching my autistic mind spin in circles, trying desperately to find a way out of being an autistic mind.

And I’d really like a truce. I would. I just haven’t written enough hopeful letters to people who can’t understand, or cried enough bitter tears over how lonely I feel.

But I’m getting there. I can’t stay on the wheel forever.

© 2009 by Rachel Cohen-Rottenberg

30 comments

Arghh! Why Can’t I See and Hear at the Same Time?

September 25, 2009 Rachel ASL, Communication, Disabilities, Dyspraxia, Hearing, Sensory Processing Issues, Visual/Spatial Skills

I’ve been struggling in my ASL class, and Michelle’s comment about how visual input can affect auditory processing gave me some insight as to why. While my last post was about my auditory sensitivities overwhelming my visual sense, this post is about what happens when most of the stimuli are visual.

First things first, though: My ASL class, as it turns out, is not as quiet as I thought it would be. While the course syllabus says that there is no talking upon entering the classroom, people are still talking before class. When I asked the teacher for clarification, she said that she doesn’t feel she can ask people not to talk when they don’t know enough ASL to otherwise communicate. I was hoping that they could just be quiet and have the experience of how it feels to have to adapt, but alas, another of my great ideas is just…well, another of my great ideas. Anyway, with my earplugs and headset on, I can still hear people’s voices. I can’t hear words, but I can hear what sounds like undifferentiated noise, and it wears me out before the class even starts. Were I to show up right at the beginning of class, however, it wouldn’t make much of a difference. The teacher jokes around a lot, so there’s a lot of laughter, and it’s quite distracting. Most of the time, I feel exactly as I do in the rest of the world: I wonder why everyone else is making noise when I’m trying so hard to concentrate.

But the problem isn’t just sound. It’s the fact that being in a room full of people is very disorienting. Even if the room were silent for two hours, I’d have all the visuals of people moving around, using their hands, gesturing in nonverbal ways, expressing things with their faces, and thereby distracting the living hell out of me. In the class, I have to focus very hard just to communicate and respond to the simplest signs in the language—signs that I can easily use and understand when I’m watching my ASL DVD, or showing Bob or Ashlynne what I’m learning. I need more structure, more quiet, and fewer people in order to learn and to use what I’m learning.

Unfortunately, the class feels very unstructured and chaotic to me. The description says that we’re supposed to be learning Units 1 through 6 of the book we got, but we’re already three classes into a 12-week course and we’re not even all the way through Unit 1. When I asked the teacher about the homework after the second day of class, she said that she doesn’t give homework, and that we should just study the material in the book on our own. Then, when I asked whether we could use signs in class that we’ve learned from the book, she said no, because not everyone will have learned the same signs. She only wants us to use the signs that she’s taught us in the class so that we can all learn them together. 

I understand what she’s trying to accomplish, but my brain doesn’t work that way. I have to learn things outside of class in order to really understand how to do them; I can’t just pick them up from watching her once a week and remember them when I get home. There is far too much in my visual field for me to be able to discern what I’m supposed to remember. And of course, once I get back to class, I can’t remember what signs she’s taught and what signs I’ve learned from the book.

And then there’s my moderate dyspraxia. I have a lot of trouble watching, imitating, and sequencing moving visuals, and ASL is one long series of complex visuals. While it’s a beautiful language, and I love learning it, I’m also finding it very challenging. When visuals are static, I can focus on them to my heart’s content and see all kinds of patterns and colors. When visuals are moving, it’s very difficult. I can get there, but it takes time and work. I’m willing to put in the time and work, but I need a different learning environment. The present one isn’t working for me.

I finally understand why Aspie kids need IEPs and one-on-one aides. I need educational supports at 51 that just aren’t there in a regular classroom. I’ve emailed my contact at the school about finding some other way to learn and practice ASL. Perhaps someone would be willing to tutor me? I don’t know. Wish me luck!

© 2009 by Rachel Cohen-Rottenberg

4 comments

Hearing, Seeing, and the Empathic Experience

September 22, 2009 Rachel ASL, Communication, Empathy, Eye Contact, Hearing, Sensory Processing Issues, Visual/Spatial Skills

I’ve been wondering whether there is a connection between my auditory oversensitivity and my inability to see nonverbal cues. I rely on my visual sense a great deal, and I experience the visual world with great intensity, so being unable to see nonverbals that are (apparently) right in front of me is very puzzling. It’s as though some obstacle were in the way.

I have read posts by other Aspies who say that they can see a person’s nonverbal signals all at once, but that they can’t understand the signals until later. These folks can replay interactions in their minds in order to view the nonverbals individually and interpret them. I envy Aspies who have this ability. When I’m interacting with a person, I don’t see any nonverbal signals of which I’m aware, so understanding these signals later is out of the question.

In last week’s ASL class, I began to get a hint of what might be the source of the problem. I was blocking out sound almost entirely, so I could not make out any words for the entire two hours. Because people were allowed to speak in the first two classes, some of them were taking the opportunity to ask a lot of questions. I couldn’t hear the questions, but my virtual deafness allowed me to observe people without any auditory distraction. All at once, I noticed that I was watching how one of my classmates used her hands and her facial muscles when asking a question. The inclination to watch felt intuitive, but my interpretation was on a wholly conscious level. I thought, “She’s moving her hands in such a way as to appear authoritative about what she’s saying. Her face gives me the feeling that she takes the subject matter of the question very seriously.”

I have no idea whether my interpretation was correct, but based on my previous interaction with the person, it was (at the very least) a good guess.

So, I got to thinking: Have I failed to see nonverbal signals all my life because I’ve been so distracted and overwhelmed by sound? As compelling as the visual world is to me, the auditory world commands my attention. Whether I’m listening to someone use a hammer, whisper in a movie theatre, or talk in a large group, my response is always the same: I can’t help but hear it, and I can’t help but be overstimulated and overtaken by it. It’s entirely possible that I’m not interpreting the nonverbals because my ears have been using up too much of my attention. Besides, because I’m always a click or two behind in a conversation, I’m spending so much time parsing the words that I haven’t got time for the nonverbals. And once I parse the words, the nonverbals that went along with them are already gone.

It’s also possible that my visual and auditory systems function in analogous ways. Just as I can hear everything very clearly, but can’t prioritize, filter, or interpret competing sounds, so I might also be seeing all the nonverbal signals very clearly, but can’t parse, separate, or interpret what’s right in front of me. When I walk into a large, noisy social gathering, I hear very little except pure, undifferentiated sound, and I overload immediately. Perhaps each person has the same effect on me visually: all the nonverbal signals get piled on top of one another until I see nothing except undifferentiated gestures and facial expressions whose cumulative impact is quite pronounced. After all, a face-to-face conversation can be an extremely intense experience for me. Perhaps I avert my eyes because I’m actually overloading on nonverbals.

If taking in undifferentiated sound has an impact, taking in undifferentiated nonverbals must have an impact as well. With sound, the result is auditory overload; with nonverbals, it seems to be empathic overload. Although I can’t parse the nonverbals, I have a very powerful experience of almost every person with whom I come into contact. I can feel the person’s mood and emotion. It’s a wonderful ability to have in a scary situation, but it’s very distracting when I’m just trying to go grocery shopping.

Some people would call this kind of intuition a sixth sense, and perhaps it is. In any case, I seem to have exquisitely acute senses that bring me information in ways that I don’t always consciously understand.

© 2009 by Rachel Cohen-Rottenberg

8 comments

The Generosity of the Local Deaf Community

September 20, 2009 Rachel ASL, Communication, Community, Hearing, Sensory Processing Issues, Speech
I have been deeply moved by the generosity and kindness of the Deaf community in my area. Every single person I’ve contacted has been friendly and supportive. Every single person I’ve emailed has focused on my concerns and given me direct, practical answers.

When I first made contact with the local school for the Deaf, I left the following message on its website:
 
“I’m a 51-year-old woman with recently diagnosed Asperger’s Syndrome, a form of autism.
 
One challenge associated with my autism is a sensory processing disorder that causes all sound to come into my system at the same high volume. As an adaptive measure to keep myself from being housebound, I have begun wearing noise-blocking headphones and living much of my life in public as though I were deaf and not able to speak. Finding community under these circumstances is very difficult. I am thinking that ASL might give me a way to communicate with others and not be so isolated. I am wondering whether your organization or community would have any resources for people with an auditory disorder like mine. Any suggestions would be much appreciated.”
 
(When I wrote the email, I was still using the term “disorder” without much concern. I’m now attempting to banish it from my vocabulary.) The very next day, I received the following message from Karen, the school’s Director of Development and Public Relations:
 
“Hi Rachel,
 
What a creative way of handing your noise challenge!  I’d recommend you check out the DeafVermont yahoo group which posts a wide variety of local social events and news: http://groups.yahoo.com/group/DeafVermont/.  My colleague will contact you regarding our Brattleboro ASL classes. 
 
Would you also like to be put in touch with someone for work-related assistance?”
 
After thanking her for her email, I asked whether I might be able to find some volunteer opportunities at the school. I again received an immediate response:
 
“Hi Rachel,
 
Your offer of volunteering is wonderful!  Thank you.  I’m going to talk with some of my colleagues and get back to you about that.  How much time would you want to spend here and what hours?
 
In regards to ASL, even before signing up for classes you could try it out by taking an instructional video out from the Brattleboro library.  Videos are better than books because many signs rely on motion, which makes them hard to display in print.  (BTW, we have a school here for autistic, nonverbal children, not all of whom are deaf, who communicate via sign language, so you’re right that ASL can be an effective alternative communication tool.)  Just so that you know what to expect, ASL has its own grammar and rules so learning fluent ASL generally takes people several years.  However, you’ll probably feel comfortable with a basic conversation after one class…”
 
In a follow-up email, she suggested that I might enjoy volunteering at the school library or helping to work on the school’s email newsletter. I began an online conversation with her colleagues about volunteering, and then wrote to Karen about my most pressing need:
 
“I’m looking for some guidance on how to navigate the world ‘out there’ without hearing. I feel as though I am lost between two worlds: I can no longer go about my life in public as a hearing person, but I have not asked for any guidance about how to proceed from there. I’ve been coming up with my own strategies for doing simple errands, and I’ve signed up for the ASL 1 class, but I’m feeling very anxious about venturing into more unstructured situations (like browsing a book shop…). How do I communicate when I have a question or want to give information? How do I signal that I can’t hear if someone asks me a question? How do I let people know what I need or want? Right now, these questions feel very overwhelming.
 
I wonder whether someone in the Deaf community would be interested in exchanging some emails with me about how to go about these things. It would really help me to hear about strategies from someone who has more experience than I do. If you could put me in touch with someone, I would be very appreciative.”
 
In response, Karen suggested that I contact Will at Voc Rehab, a state government agency that helps disabled people in Vermont obtain job retraining and employment. She felt that he might be able to guide me. When I sent him a message, and explained that I do best by written communication, he was only too happy to set up an email appointment.
 
To begin our discussion, I sent him a list of questions. Following are my questions, together with his responses:
 
Question #1: When you are out in the world, walking through town or looking at items in a store, how do you communicate that you can’t hear if someone tries to talk with you or ask you a question? I have a lot of anxiety about this particular issue. I am afraid that I will feel so awkward that I’ll be tempted to take off my headset and talk, despite the acute impact on my system. If I have a strategy in place for how to respond, I will make a much better choice.
 
Answer #1: I recommend that you carry a pen and some paper with you.  That way, you can write notes with people if you are unable to decode what they’re saying to you verbally.  I have a blackberry with a feature that allows me to type notes to people. 
 
Question #2: How do you communicate in, say, a bookstore when you have a question or want to give information to someone?
 
Answer #2: I write back and forth with store reps.
 
Question #3: How do you do a task requiring a lot of back and forth communication, such as opening a bank account, without hearing or speaking?
 
Answer #3: I write back and forth when I’m in a bank.  However, so many services are available online now that I can do bank business, shopping, insurance adjustments, etc. online.  If you prefer to go to the bank or another place in person, writing notes might be ideal.  However, you would need to ask the person to look at you directly and speak slowly if you guys communicate verbally.  It also helps to do business in an area where the lighting is decent and there is less background noise.
 
Question #4: Do you have any suggestions for a short answer I can give when a person asks whether I am deaf or hard of hearing? I am neither, in the usual sense. In fact, I am all the way on the other side of the bell curve: my hearing is so acute that my experience of sound is aversive, and I have to block it out. Once I’ve blocked it, though, I am very hard of hearing. You see the problem.
 
Answer #4: You could say something like “I cannot hear well” or “hearing is hard for me.”
 
Question #5: I don’t much like using the term “disorder” to describe myself, any more than Deaf people like the term “hearing impaired,” and yet, “auditory processing disorder” is the only term that seems to make sense to others. If you have any suggestions for more positive terms, I’d be happy to entertain them!
 
Answer #5: I’m not sure if it’s imperative that people with hearing loss label themselves as deaf, hard-of-hearing, late-deafened, etc.  Everybody’s a bit different and has their own traits/needs. You could always describe yourself in a way that you want people to view you (emphasize good personal qualities). If you’re looking for specific words to use instead of auditory processing disorder, I’d suggest saying something like “I have hearing loss” or “I have a hard time hearing.” Even though you don’t actually have loss inside your ears, you still have hearing loss beyond your ears.  

Yes! I have hearing loss beyond my ears. Of all the suggestions he gave, I liked “Hearing is hard for me” the best. It’s absolutely true, and it’s very concise. So, later in the afternoon, I updated all of my “I can’t hear you” cards, removing the term “hearing disorder” entirely. The updated cards look like this one:

Hello—

I am wearing these ear protectors because hearing is hard for me.

My shareholder number is 1234.

I will bag my groceries
myself.

I will use my debit card with no cash back.

Thank you!

 
 
 

 

 

 

 


When I went to my second ASL class on Thursday night, I wore my most effective Peltor headset with a pair of earplugs. The combination allowed me to block out all sound almost entirely. I could only hear the interpreter’s voice on a very low frequency, as though she were quite far away, and the laughter of my classmates when the teacher made a joke. (The teacher, by the way, has an excellent sense of humor, and sometimes it seems that we are laughing as often as we are signing!)

At first, it felt strange to hear virtually nothing, and I got a little sad about it. But then I thought, “This is the reality of my life. I can either be paralyzed by it, or accept it and adapt to it.” Because I protected my ears so well and did not use my voice, my experience of the second class was much better than my experience of the first one. I began to understand why some autistic people just stop talking altogether. It was a tremendous relief to be able to focus on my greatest strength—my visual sense—and to leave listening and verbal communication outside the door. I like to speak and to listen to my family and friends, because they know me and they are willing to slow down their words for me. But out in the world, I am much better off keeping speaking and listening to a minimum.

The people I’ve contacted in the Deaf community understand that I have difficulties with my hearing, and they’re taking it seriously. I have to do the same. Although being in a room with fifteen other people is tiring, I’m determined to keep going. Fortunately, ASL is so interesting to me that I can’t wait to learn more!

© 2009 by Rachel Cohen-Rottenberg

5 comments

Autism, Language, and Living in Paradox

September 13, 2009 Rachel Communication, Community, Sensory Processing Issues, Spectrum Pride, Speech

As you might have gathered from my last post, I’ve been feeling a lot of internal pressure to explain myself to the outside world.

Pressure is not necessarily a bad thing, so long as it’s ultimately empowering. When I email someone at the school for the Deaf about volunteering, taking a class, or getting advice on how to navigate the hearing world, my drive to explain my sensitivities is all for the good. I’m advocating for myself. I’m making sure that people understand what I can do, what I cannot do, and what I need in order to keep myself healthy. Yes, it can be quite exhausting, and it can also make me feel very vulnerable, but that’s often the cost of self-advocacy, and I accept it.

But then there’s the pressure that doesn’t result in empowerment. This kind of pressure comes from my need to be understood for its own sake. Nothing is wrong with my need for others to understand me. It’s basic to being a human being. Why else do I write this blog, if not to be understood? Why else do autistic people read it, if not to feel comforted that someone else understands?

However, a significant problem arises when I go about my everyday life and expect that if I use enough words, everyone will understand. How is a stranger on the street going to understand the experience of being flooded by everyday sounds? How can even my husband know what that feels like? Unless they share the same experience, they can’t really know. They will always be understanding it from the outside in, rather than from the inside out. The best I can hope for is that others believe what I’m saying, that they respect what I’m saying, and that they support me.

So, I’ve been thinking a lot about my drive for self-advocacy on the one hand, and my insistence on tilting at windmills, on the other. Tilting at windmills is out of the question right now; I need every bit of energy I can get just to function well. But the drive for self-advocacy is itself taking a lot out of me, and I’ve been wondering why. What I’ve come to realize is that being autistic is essentially the experience of living in paradox, and that this experience makes self-advocacy very, very difficult for me. I’ll list (of course!) the paradoxes that have been occurring to me lately. Feel free to add ones I haven’t thought of.

1. I have acutely sensitive hearing—so acute that I have to use ear protection to get as close to being deaf as possible. So, can I hear or not? When someone asks me, I don’t have a ready answer.  What does it mean to hear, anyway? Does it just have to do with sound waves entering my brain? Or is it about whether those sound waves get filtered, prioritized, and understood? If the former, then yes, I can hear. If the latter, then no, I can’t hear.

2. I am capable of talking a blue streak, but because I am unable to follow the spoken word for very long or respond to it effectively, I find myself lapsing more and more into silence. So, can I speak or not? If speaking means being able to form words and string them together, then yes, I can speak. If speaking means being consistently able to keep up with a conversation so as to understand the meaning of the speaker and to respond in a purposeful way, then no, I can’t speak. 

3. I deeply want to be part of a community, but being autistic means that wherever I am, I am usually alone.

4. I deeply want to help people, but being around people is often impossible.

5. When I write, I know whether I’m making sense, but when I speak, I often have no idea whether I’m saying anything in a coherent manner.

6. I have difficulty sequencing tasks in time, but I have no problem ordering the things of space or perceiving visual patterns.

7. I have retained a kind of childlike innocence, and yet I feel old, pessimistic, and deeply sad when I look at the suffering of the world.

8. I do not read nonverbal cues intuitively, and yet when I walk into a room full of people, I can feel what everyone is feeling without anyone explicitly telling me.

9. I do not believe that I have a disorder, and yet I am unable to do things that most people take for granted.

10. I engage people as though what they say is what they mean, even though I have ample life experience to lead me to the opposite conclusion.

When it comes down to it, the problem of self-advocacy may simply be a problem of language. For autistic people, what it means to see, hear, smell, touch, taste, move through space, relate to other people, form friendships, and be successful is often fundamentally different from what it means to our more typical friends. When others lack this understanding, they can (and usually do) consider autism to be inferior to other modes of experience. I know that I am not inferior to other people, and yet I also know that when I say that I am autistic, many people will either a) assume that I am missing the essential pieces that make one human or b) consider me some sort of amazing anomaly because of my capacity for love and sensitivity. I know that when I block sound and refuse to speak (despite having superb hearing and a capacity to ramble on endlessly), many people will think I am simply being stubborn or perverse. And so, in order to give people an understanding of my needs and my experience, I can’t simply use words like autism, hear, or speak and let their normative, neuro-typical meanings stand. I feel compelled to explain what I mean as an autistic person.

These acts of translation are tiring, and yet, they feel like such important work that I don’t quite know how to manage them. The best I can do, at present, is to choose carefully the time and place in which I engage in translation at all. If I am advocating for myself, fine. I’ll translate and do my best (within the limits of my neurology) to keep it as concise as possible. But if I’m simply trying to enlighten someone who would just as soon go home for dinner, I’m wasting my time.

I must make these distinctions. If I don’t, I won’t have any energy left to do the things that I enjoy.

© 2009 by Rachel Cohen-Rottenberg

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My First ASL Class: I Live to Tell the Tale

September 11, 2009 Rachel ASL, Communication, Community, Hearing, Sensory Processing Issues, Speech

Last night, I went to my first ASL class. I’m not sure how to summarize my feelings about it except to report what I said to my husband when I got home: “That class was the most terrifying experience of my life!”

Don’t get me wrong: The class was great, but so many things happened that I hadn’t planned on that I came home reeling.

The class ran from 5:00 pm to 7:00 pm, with a 10-minute break in the middle. As always, I wore my sound-blocking headset, planning to say nothing aloud and to hear very little. As requested, I got there before 5:00 pm and stood in a short line to receive my book. When I got to the front of the line, I gave the registration person a note with my name and the class I was taking. She said that she understood my situation from the emails I had sent to people associated with the school, and she asked me whether I was hard of hearing. Uh oh. What she knew about my situation seemed partial, at best. So I had to explain myself—and it wouldn’t be the last time. It was only Round One. I said that I could hear, but that sounds are overwhelming and that processing speech is difficult, especially with ambient noise. She gave me the course materials and welcomed me, and I set off to find the classroom.

The classroom was nothing as I had imagined it. I was thinking of a small room with desks. Instead, I arrived in a large room in which the chairs were all arranged in a circle—of course! How else were we to see one another? I sat down and started reading my course materials, and the room started filling up with lots of talkative people. Then, we all got a piece of paper on which to write our contact information and our reasons for taking the class. Round Two of explaining myself. I wrote that I have an auditory processing disorder and difficulties with speech, and that I wanted to find a way to communicate with people outside my family. I felt somewhat uncomfortable explaining myself again, because I couldn’t really perceive how understandable it would be to anyone, Deaf or hearing, but given that I could do it in writing (my natural medium), I still felt okay.

Then, with my headset still on, I could hear someone speaking very loudly, and it turned out to be the teacher’s interpreter. Apparently, the interpreter would be present for the first two classes. Uh oh. I hadn’t been expecting that either. Of course, just by chance, I happened to be sitting about as far from the interpreter as one could possibly get without being outside the classroom altogether. I could hear her voice, but I couldn’t make out all her words. So, there I sat, somewhat panicked, and wondering what to do. Against my better judgment, I took my headset off my ears so that I could hear her, but then the ambient noise coming through the open window got jumbled up with her speech, and I nearly started to cry. However, I realized that if I were going to stay in the room, I had keep my headset on and do something constructive to help myself. As horribly conspicuous as I felt, I had to move my seat. So I got up, walked all the way around the room, showed the teacher and interpreter the paper on which I had written down my challenges, and asked whether I could sit right next to the interpreter. The teacher was fine with it, so I walked all the way around the room again, picked up my chair, and brought it all the way back around the room to where the interpreter was sitting.

Did I mention that I felt like a completely conspicuous autistic freakazoid? I did. I hadn’t counted on that. It’s one thing to wear my headset on a walk, or in a grocery store, where I can harmlessly ignore the necessity for hearing or for speech. It’s another to wear it in a roomful of people in which I had to communicate and be seen for two hours. I felt even more “other” than usual.

However, I just registered my feelings and kept on. The teacher introduced herself, explained how the class would work, and then, horror of horrors, asked us all to introduce ourselves and share why we were taking the class. Beginning with me. Uh oh. Round Three of explaining myself. So, I took off my headset, told everyone my name, and explained why I was there. I had actually written down a summary of my challenges before coming to class, just in case I needed it, and wow, did I need it! So, I gave them as much of my summary as I could articulate without the piece of paper in front of me: “I have an auditory processing disorder. All sound comes into my brain unfiltered and unprioritized. I can’t attend to one sound to the exclusion of another. I also have difficulties with processing speech, and without my noise-blocking headset, I am overloaded by sound almost immediately. I’m here to learn a way to communicate with people outside my house.” I hugely dislike using words like “disorder” to describe myself, but it often seems like the only way to explain my challenges to the neuro-typical world, so I defaulted to that term. Of course, because I was speaking and not reading what I’d written, I had no idea whether I was being understood, or even whether I’d said anything particularly coherent, which worried me no end.

Most of the class was devoted to learning about Deaf culture, and I loved the whole discussion. There are so many issues that parallel our issues as autistic people: the determination to be seen as whole human beings, on our own terms, rather than as broken prototypes of the dominant culture; the understanding that using terms like “disordered” or “impaired” to describe ourselves gives power to the idea that we are “abnormal;” and the struggle to create community and communicate in ways that are natural to how our minds and bodies work. Of course, there are differences, and I soon found myself deep in double culture shock. I had to simultaneously navigate neuro-typical culture and Deaf culture. Where did that leave me exactly? I’m not neuro-typical and I’m not Deaf. In fact, I have acute hearing—so acute that I have to block out sound. Because I had to block out sound, I had a hard time hearing the interpreter with my headset on, even though she was right next to me, and it was impossible to hear anyone else in the class. The fact that I was going through the experience of people who cannot hear and cannot sign was not lost on me, but I felt so anxious about it that I kept moving my headset slightly away from my ears, just to hear the things that my classmates were asking. Then, I’d move it back over my ears and strain to hear the interpreter. It was very, very difficult.

Just when I thought that I couldn’t feel any more lost, the teacher asked how many people in the room were right-handed. Everyone raised their (right) hands but me. Sigh. The teacher looked at me and said, “You’re left handed?” When I nodded, she explained that I had to sign with my dominant hand, and that because she was right handed, I would have to do the opposite of what she was doing. I could have gotten completely freaked about this, but I was actually relieved, because it meant that I would simply have to mirror her.

By the end of the class, the teacher had taken to writing on the whiteboard and teaching us signs without the benefit of her interpreter. Ah, silence. What a relief! When we were all done, I had to go up to the teacher for Round Four of explaining myself. You see, she had mentioned earlier that we would be asked to come to the front of the class and sign at times, and that if that was scary for anyone, we should let her know. She also mentioned that she might need to touch our hands in order to help us form the signs properly, and that if anyone had a problem with touch, we should say something. So, I wrote out a note to her, and this time, I explained that I’m autistic, that standing in front of people is hard, that being in groups of people is hard, that I can’t tolerate light touch, and that firm touch is okay. When I gave her the note, she was very supportive. She that she would stand right next to me any time I needed to be in front of the class, and that she would not touch my hands lightly. She ended by saying “I’m really glad you’re in this class.”

Wow. I really needed the reassurance, and there it was. I nearly started to cry. Again.

Because the class had ended earlier than I’d thought it would, I needed to borrow someone’s cell phone to call Bob and have him pick me up right away. I had consciously decided against bringing my cellphone, thinking that I wanted to enjoy the luxury of being in a place in which people do not hear or speak, but there was no way around using one. The person whose cell phone I borrowed offered to give me a ride home (along with two other people), and for some strange reason, I didn’t think that being in a car with three neuro-typical strangers would be stressful. I was just thinking of how nice it was that Bob wouldn’t have to drive. Uh oh. So, I got in the car and the person driving mentioned that she was an audiologist and that she was very curious about my headset. Round Five of explaining myself, and yes, this time, I used the word “autistic.” Okay, I know, I didn’t need to give her that information, but what can you do? I’m autistic. When someone asks me about myself, they get a direct answer. Unfortunately, no one in the car was particularly talkative, so I started getting uncomfortable, wondering what they were thinking of the strange autistic lady with the headset. (I know, I know, I shouldn’t care.) We finally arrived at my street, where I told said good-bye to all of them and stumbled in my door.

I was a mess. My nervous system was so overstimulated that I was practically having an out-of-body experience, and the only thing keeping me rooted to the ground was that Bob was listening to my shpiel about how the evening had gone. By the time I was done, I had arrived at three very important conclusions:

1) I had not counted on how exhausting and overstimulating it would be to listen to the interpreter speak for two hours. I’m not sure why this possibility hadn’t entered my mind the minute I heard her talking, but I think it had to do with being in the context of a classroom. I like classrooms. I like classes. They have structure, purpose, and focus—three of my favorite things in life. I was also concentrating on the teacher, because she was the one giving the class, and I was so fascinated by the visuals of her signs and her face that I forgot that listening to someone speak would have the same impact in the class that it has on me everywhere else. I generally lose the thread of a verbal conversation at the ten-minute mark, and my senses get overloaded by groups of speaking people almost immediately. Yet, here I was, in a group of fifteen speaking people, for two hours. Of course I was spent.

2) I should never have accepted a ride home from three people I didn’t know. They were nice people, but strangers stress me out, and neuro-typical strangers stress me out even more.

3) I need to email the teacher and let her know that I have to block out as much sound as possible for the next class. I wasn’t wearing my most effective headset last night (thinking that I wouldn’t really need it), but I’m going to do it next week. I don’t see any other way to approach things and not get overloaded. I hope she’ll be supportive and that I’ll be able to follow the class without hearing anything.

So, that’s the report from this left-handed, hearing-sensitive, speech-challenged, conspicuous, exhausted autist. I’m very glad that I have you all by my side.

© 2009 by Rachel Cohen-Rottenberg

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On Word Pictures, Intelligence, and Going Slowly

September 9, 2009 Rachel Communication, Hearing, Modes of Thought, Sensory Processing Issues, Speech, Word Pictures

I’ve arrived at a major breakthrough regarding my ability to process speech.

For the past week or so, I’ve been noticing that even Bob has been speaking too quickly for me. He speaks very calmly and very straightforwardly, but I’ve been feeling the strain of trying to keep up with him. I mentioned it to him a few days ago, and he’s begun slowing down his verbal speed. The other night at dinner, we were talking at a much slower pace than usual, and I noticed something extraordinary: The only way for me to grasp his meaning was to concentrate on the word pictures that were appearing in my mind. Only by taking the time to focus on the word pictures was I able to get a clear and substantial understanding of what Bob was trying to say. 

And what’s more: Having the time to concentrate on the word pictures gave me time to respond in a meaningful way. I didn’t go on endlessly and tire myself out. I didn’t stumble over my words, transpose letters, or try to speak at break-neck speed, anxious all the while that I’d forget what I was going to say. I just responded, in the moment, in a purposeful way.

It’s a minor miracle, really.

I finally get it: My understanding of speech is visual, not auditory. It begins with word pictures, not with sound. My natural way of being in the world is to start with the spelled-out words that form in my head. Perhaps it’s for this reason that I don’t remember learning to read. I’ve always known how to read. At some point, I must have intuitively figured out the relationship between the spoken and the printed word. I’ve heard about children with Asperger’s who can read at a very high level at a very young age. I wonder whether they, too, can see all the words spelled out in their minds.

I’m beginning to understand why I have trouble keeping up with a conversation, even with just one other person. If there are too many words coming at me too quickly, I can’t take the time I need to see them in my mind. The word pictures are still there in my head, but they’re going by so quickly that I can’t keep up. If you put me in a room with more than one other person, the problem increases exponentially. And if you bring me to an unstructured social event, in which people are talking, drinking, eating, laughing, and moving around, I still see the word pictures in my head whenever my ears pick up a particular group of words, but the word groups are going in several different directions at once, and I’m still trying to follow all of them. No wonder my brain feels like it’s melting the minute I enter the room.

So here’s what I need from my friends and family members: I need them to slow down the pace of their speech, and I need them to leave pauses in which I can form a response. I know that some of my friends will be able to adapt to my style of conversation, and I know that others won’t be able to do it. For some people, it will be fairly simple. For others, it will be physically impossible. So be it.

I’ve seen this day coming for a long time. From the time I was young, I’ve felt that I must keep up, that I must go faster, but as the world kept speeding up, I found myself falling further and further behind. As a child, I remember trying to explain something to my mother, only to have her roll her eyes and say, “Just come out with it, for goodness sake!” So I learned to talk very fast, hoping like hell that somewhere in all that verbiage, someone might understand what I was trying to say. But all the while, I’ve wanted so much to slow everything down.

Why didn’t I? I’ll tell you why, even though it’s my deepest and darkest secret. I’ve believed all my life that if I have to slow things down—if a slow pace is the only one that works for me—then I must not be very smart. Now, I know that for many people, being less than very smart would not be the cataclysm it is for me. For me, it’s in the realm of the unthinkable. The belief that I’m very smart has driven all my hopes and all my dreams for my entire life. It’s what’s fueled whatever self-esteem I’ve built. It’s been the bedrock of my self-worth. It’s kept me going when I didn’t think I had anything left.

And now, I have to say to my friends and loved ones, “Please speak slowly so that I can enjoy a conversation with you.” In so doing, I’ve come face to face with my greatest fear: If I have to go slowly, I must be stupid. As I look that fear in the face, I see it transformed. It’s no longer my greatest fear. It’s simply the greatest myth I’ve ever mistaken for the honest truth.

Going slowly has nothing to do with intelligence. Nothing at all. Speech just takes the scenic route through my brain. That’s it. The whole reason that I go so slowly with speech is also the reason I’ve always been able to read. I see words spelled out in my head. My brain translates sounds to visuals, and then it has to translate a response into speech. What’s that got to do with being smart? It has nothing to do with being smart. It has everything to do with being different.

My husband told me that when his late wife was dying, she began to lose her ability to speak. As a result, she had to become very disciplined about not wasting any words. She had to speak more slowly, and the people in her life responded by slowing down their own speech. I’ve always thought their arrangement was possible because it was temporary. People slowed down their speech because those conversations were the last ones they would ever have with her. 

But I don’t have a terminal condition. I’m autistic. I need people to slow down their speech for me, and I will need them to do it for the rest of my life. How many people can do it? I don’t know. Time will tell.

© 2009 by Rachel Cohen-Rottenberg

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Autism and Me: Difficulties with the Spoken Word

September 6, 2009 Rachel ASL, Communication, Hearing, Sensory Processing Issues, Speech, Word Pictures

I’ve mentioned in other posts that I see words spelled out in my mind when I’m thinking, talking, or listening. The Asperger’s specialist who diagnosed me said that seeing these word pictures must be very distracting to me. I had never considered the question before. I now believe that this way of thinking is part of the reason that I have a hard time keeping track of a lecture or conversation. I’m seeing the visuals while trying to listen.

College Lectures
In college, I learned that if I weren’t taking notes, I wouldn’t be able to concentrate on an hour-long lecture. Without a pencil and a piece of paper, I’d follow the lecture to a certain point, and then suddenly, it would seem as though the lecturer had taken a huge logical leap. For the life of me, I could not figure out how he or she had gotten there. I’d go back in my mind, trying to parse the beginning of the lecture, and before I knew it, we were in the middle. By the time the lecture was over, I had long since given up.

My sense is that I became so interested in the literal appearance of the words in my mind that I lost track of what the lecturer was about to say next. After a great deal of frustration, I learned that the best way around the difficulty was to take furious, copious notes. It was the only way I could remain present to what was being said. Later on, I could read my notes and put the logic together myself.

Conversations with Others
Every Friday morning, I used to volunteer at our local public library. Everyone was very friendly, the place was very quiet, and my job involved packing up books for interlibrary loans. One morning last winter, when I was still grappling with the issue of whether I was autistic, I had an opportunity to observe what happens to me when I don’t have recourse to the written word.

The first ten minutes after my arrival at the library were fine. I made eye contact, I smiled, and I was able to stay in the flow of the conversation. One woman complimented me on my scarf and asked whether I had knitted it myself. When I answered in the affirmative, another person said that I should talk with the lady on the second floor who was organizing a knitting circle. One of my co-workers took me up to meet her, where I gave her my contact information.

As I came down the stairs, I congratulated myself on my social skills, and I wondered why in the world I thought I was autistic. I took up my post, packaged the books, and talked to people on the staff when I needed help.

By the time I left two hours later, I was completely disoriented and overwhelmed. I felt out of sync in every conversation. It was as though each interaction were a dance to which I had never learned the steps. With every word coming out of my mouth, I knew that I was going on far too long and talking about all the wrong things, but my panic over feeling overwhelmed only made me talk more.

To make matters worse, I couldn’t remember anything that anyone had told me. Was the spinning class up the road or was that the knitting class? And there was something about a drop spindle in there, wasn’t there? I felt as though I were behind a glass, listening to people speak, but unable to remember the content of their words or come up with an appropriate response.

At that point, I was finally convinced that I have a problem processing spoken language. I couldn’t keep up with all the words coming into my brain, and I couldn’t figure out how to slow down the words coming out my mouth. Besides, if I just kept talking, surely someday, someone would understand what I was trying to say.

Learning New Languages
I love foreign languages and have studied French, Spanish, Latin, and Hebrew. I can read and write a foreign language fairly easily, but when it comes to speaking, I have difficulty arriving at fluency. I have a very hard time understanding a foreign language when it’s spoken, and I find it difficult to answer spoken questions in any kind of reasonable time frame. Until I was diagnosed with autism, I could never understand why. Now that I realize that I can’t converse very fluently in English, my difficulties with foreign languages are no longer a surprise to me.

As I get ready for my ASL class, I’m heartened by the knowledge that ASL is a visual language. Lou Fant, one of the founders of the National Theater for the Deaf, wrote the following about ASL: “The uniqueness of ASL lies in the simple fact that it is based upon light waves rather than sound waves.” I’m an intensely visual person. I can focus, attend to, and organize what my eyes can see far better than I can focus, attend to, and organize what my ears can hear. ASL may very well be the language in which I finally arrive at fluency.

© 2009 by Rachel Cohen-Rottenberg

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