Journeys with Autism » Speech

Autism in the Classroom: Personal Reflections

Rachel — Sat, 30 Apr 2011 11:31:52 +0000

Earlier this month, a teacher at a school in Florida contacted me about helping with a training session. The training will take place on May 5. She wanted to get an insider’s perspective about navigating the school environment as a person with autism, and she was hoping that I would put together a video about my childhood experiences in the school system.

Of course, I said yes. I had never put together a presentation like this one before, but it was a lot of fun to do, and I’m very happy with the result.

I’ve love to hear your comments. If you are a parent or a teacher, did you find the information helpful? And if you are autistic, how do you remember your own school experiences?

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For those with visual difficulties, and for others who prefer reading text, here is a transcript of the video, slightly edited to remove references to the photographs in it:

Autism in the Classroom: Personal Reflections
A Presentation by Rachel Cohen-Rottenberg

The Lewis School
Valparaiso, Florida
May 5, 2011

My name is Rachel Cohen-Rottenberg.

I’m a 52-year-old wife, mother, writer, and artist with Asperger’s Syndrome. I was diagnosed at 50. I’m married to a wonderful man named Bob, and I have a beautiful daughter named Ashlynne.

In order to give you some insight into what your autistic students might need in the classroom, I’d like to share my memories of my years in elementary school.

I was raised in Brookline, Massachusetts. I attended the Edith C. Baker School, a public elementary school, from the second grade through the eighth grade.

I had symptoms of autism, but no one picked up on them.

As a child, I was extremely sensitive to sensory stimuli, especially sound, and I felt the emotions of the people around me acutely.

Fascination and alarm: Those two words describe the nature of most of my responses to the physical and emotional world throughout my childhood.

I did not speak a word until I was 2 1/2, but I could read when I was three years old. I taught myself.

As a child, I had great difficulty making eye contact. Even now, when I look into a person’s eyes, I have such a profound experience of the person that I feel his or her soul coming directly at me. When I was a child, looking into the eyes of another person was an overwhelming experience.

My small, very conservative school gave me the structure to indulge my fascination with the world while protecting me from the kinds of experiences that inflamed my anxiety.

At school, we had many, many rules, and they governed nearly every aspect of the school day. We had rules for how to enter the cafeteria, with whom to sit, and at which table. We had rules for how to form a line and use the proper side of the stairway. We had rules for what constituted proper school attire.

The rules created a predictable, structured environment in which I could thrive.

My school environment was very spare and quiet. We did not have all the visual and auditory distractions of today’s world — no iPods, no computers, no cell phones. All of our learning was text-based. For me, it was the perfect environment.

My teachers demanded respect from all of us. And they did an excellent job of returning it. But they were not my friends. They were better than friends. They were allies. The vast majority were kind, patient, and supportive.

My teachers created an environment in which I developed faith in myself. I could never have achieved so much without this solid basis.

As you work with your students, please keep in mind that autism is not intrinsically a condition of deficit, but of overabundance — an overabundance of sensitivity to sensory and emotional phenomena.

I spend every day living with an experience laden with perception. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world, in every detail: color, texture, pattern, and motion.

The intensity and acuity of autistic perception causes many of the behaviors that can be so perplexing to non-autistic people. Stimming is a way to calm our nervous systems, and it serves to block an abundance of input by creating an abundance of output. Concentrating on visual or auditory patterns allows us to bring some measure of control to our perceptions of an overstimulating world.

Living with this level of intense perception is a great deal of work. Please know that your autistic students are working very hard, all the time, to filter and process sensory and emotional information.

It may not look as though they are working hard. Please look beyond what you see to what lies beneath the surface. When you do, you will go a long way toward helping your students succeed.

Thank you so much for taking the time to watch this presentation. Please feel free to contact me through my blog, Journeys with Autism (www.journeyswithautism.com),with any questions you might have.

Grieving the Dream and Living What Is

Rachel — Sat, 09 Oct 2010 19:03:14 +0000

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.

The Generosity of the Local Deaf Community

Rachel — Sun, 20 Sep 2009 12:41:59 +0000

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!

Autism, Language, and Living in Paradox

Rachel — Sun, 13 Sep 2009 13:04:20 +0000

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.

My First ASL Class: I Live to Tell the Tale

Rachel — Fri, 11 Sep 2009 10:22:23 +0000

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.

On Word Pictures, Intelligence, and Going Slowly

Rachel — Wed, 09 Sep 2009 12:00:25 +0000

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.

Autism and Me: Difficulties with the Spoken Word

Rachel — Sun, 06 Sep 2009 16:27:19 +0000

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.

Speaking, Listening, and Social Expectations

Rachel — Sat, 22 Aug 2009 20:00:36 +0000

I’ve signed up to take an introductory course in American Sign Language. The class begins in early September.

Initially, I had two reasons for signing up. First, because I hope to volunteer at a school for the deaf, I want to learn the local language. Second, when I’m out in public wearing my headset and people want to interact with me, I want to have some way to communicate that I can’t hear or speak. At the thrift store, I now wear a tag on my shirt that says, “I have a hearing disorder. Please ask a staff person for assistance.” It works just fine, but I can’t possibly make enough tags to cover every situation in which I might find myself. I have to be able to communicate in some recognizable way. Of course, if I sign, most people won’t know the particulars of what I’m saying, but they will recognize ASL when they see it and draw the appropriate conclusion. In addition, I’ll feel that I’m communicating, just as if I were speaking French or Hebrew. I won’t feel so anti-social, so cut off, so frustrated about how to let people know that there’s a human being in here.

When I got the registration materials in the mail, another reason for taking the class nearly jumped off the page at me: each two-and-a-half-hour session is carried out entirely in ASL. No voices. Just signing. Full, silent immersion, once a week. Can you imagine? A room full of quiet, hearing people? I know you can find them at silent meditation retreats, but I don’t meditate and besides, I want to communicate with other people. I just don’t want to have to speak all the time.

For much of my life, I was a stereotypical, talkative Aspie. I could talk anyone under the table. Anyone. Of course, I completely exhausted myself and everyone else, but the point is that, once upon a time, it was possible. My husband would probably tell you that it’s still possible, because as he said the other night, “There are always a lot of words flying around in this house.” And it’s true: I can talk his ear off. But these days, he’s really the only one with whom I ramble on, and to tell you the truth, I’m starting to wear myself out.

As I look back, I understand so much about my formerly talkative self. Although I didn’t know it at the time, talking a blue streak was my favorite way of fending off the prospect of auditory overload. If I could talk at someone, they never got a chance to overwhelm me. If the person were just as talkative as I was, it didn’t matter. It was like upping the ante at a poker game. I could get out in front and stay there. Of course, I was tiring myself out, but at least I was in control of the situation.

Well, sort of.

Another great thing about this strategy was that I didn’t have to face the fact that I couldn’t initiate a typical conversation. I didn’t have to confront my ignorance about where to jump in, when to step back, and how to stay in the flow. I didn’t have to face my awkwardness or my shyness. I didn’t have to register the fact that I couldn’t process another person’s speech as rapidly as I thought I could. I’d just go on a rant or a ramble with my favorite topic and talk myself into oblivion.

And now, it seems, I’ve used up the greater part of my lifetime quota of speech. It feels a little weird, but that’s life. Some days, I’m comfortable having conversations with other people, and some days, I’d just as soon not try to summon the energy.

So much for speaking. But then, there’s listening. There’s being out in the wide world, with all kinds of conversations going on around me, and not being able to attend to one at the exclusion of another. I hear everything, loud and clear. And of course, because I hear everything, I try to follow everything. My brain says, “Oh, these people are talking. I must process what they’re saying.” It’s completely involuntary. When people are talking about something interesting, sometimes it’s worth the effort (until I crash and burn at the 10-minute point). But when people are talking about nothing at all, when they’re engaging in social niceties, when they’re filling up space with chitchat, when they’re saying words whose purpose I cannot possibly comprehend, then all that brain processing is a complete waste of time.

I will concede that when people seem to be “talking about nothing,” they may actually be communicating meaning by the tone of their voices, their body language, and the associations that words carry between friends. But since I don’t see any of those nuances, I just process a whole lot of (apparently) meaningless words like, “Yeah, great to see you, too. Yeah, we just got back from the beach. Yeah, it sucks being back from vacation. Yeah, you look great. Yeah, good to see you, too.” And in the process, I get a little angry. Until recently, I never understood why. I thought perhaps I was a misanthrope, or angry at my parents, or a madwoman cleverly disguised as a sane human being. But now, I realize that when my brain works on chitchat, it’s working very, very hard on nothing. Working hard on nothing would make anyone a little annoyed.

Now that I’ve figured out that I don’t want to talk much in public and that I cannot leave my ears unprotected, exactly how do I navigate? Well, I know (at least theoretically) that I can put on my headset and go to the grocery store, the post office, my therapist’s office, the bank, and the pharmacy. I’ve got my “I can’t hear you” cards at the ready, and life is good. This strategy will likely work fine for errands, but for longer stays out there in the world, I’m having difficulty getting comfortable with the idea of not hearing or speaking.

For instance, last Thursday was the second day I’d worked at the thrift store with my headset on. The staff knows why I wear it, and that I have a new version with a “push to listen” button on one side. If any staff member needs to talk to me, I can push the button and listen without taking the entire headset off and hearing everything going on in the store. The staff seems fine with my adaptive measures, but I feel the pressure of social expectations weighing down on me like a force. There I am, in the linen department, focusing on my work, organizing everything to my heart’s content, and pretending that no one else is there. That feels weird. After all, I’d love to be able to act like my old, closeted self, smiling at people and offering my help, but I can’t. It’s just not possible to be in people mode and task mode at the same time.

I don’t think that anyone else is consciously beaming social expectations in my direction or trying to control me with their sense of how I must be. I feel the social expectations coming from inside myself. I’ve internalized so many of them—that I must smile, that I must make eye contact, that I must show interest, that I must be pleasant, that I must play my part to give people a good experience of me, and on and on and on.

But I can’t do it anymore. I have to protect my ears. I have to conserve my speech. I have to be careful of how much energy I use for any given task.

I’m hoping that ASL will help me develop safe boundaries for sound and speech while I create bridges to other people. As much as I enjoy the experience of silence, I need to communicate that there is a human being in here, and that I’m not simply an anti-social creature with a funny headset.

Deafness and My Experience of Autism

Rachel — Wed, 12 Aug 2009 14:00:02 +0000

First things first: I am neither deaf nor hard-of-hearing, although hearing is very hard for me. Sometimes, I wish I were deaf, but my condition often seems to be the very opposite of deafness. As I’ve said before, I hear everything at the same volume and cannot filter or prioritize sound at all. For awhile, just to get away from unforeseen auditory assaults on my system, I spent most of my time indoors.

Now, however, I am in the phase of Desperate Times Call for Adaptive (and Creative) Measures. So far, this week has been an interesting series of adventures in the land of autism, auditory processing, and the world of other people.

Sunday
My husband and I sat down with our Support Strategy List that I mentioned in my post on creating a support network. The purpose of the list is to develop a network of people I can call on to do essential tasks if Bob is ill or if he passes from this life before me. Without such a network, I’m a mass of anxiety and insecurity whenever Bob travels away from home for very long.

In the course of our discussion, we modified the list. It now has the following form:

Resolved issues:
Housecleaning (We’ve hired someone to clean the house once a week.)
Understanding home and non-profit financials. (Rachel is up to speed on this subject.)
New activity to try:
Rachel will try shopping at the co-op for herself and Ashlynne.
Remaining issues:
1. Driving Ashlynne where she needs to go until her 17th birthday (when she can drive herself). Bob will talk to the parents of one of Ashlynne’s friends to set up logistics.
2. Cooking meals.
3. Picking up prescriptions at the pharmacy.
4. Bringing envelopes or parcels to the post office.
5. Accompanying Rachel to doctor appointments or hospital procedures.
6. Getting respite assistance for #1-5 when Bob is ill.
7. Making telephone calls (to the insurance company, doctor’s office, gas company, cable company, etc.).
8. Asking a friend to have power of attorney and seeing a lawyer for the proper documents.
9. Moving bank accounts from our old town to our new town.
10. Applying for disability (?)

Our updated list is very straightforward, but on Sunday, the road to it was full of twists, turns, and potholes. Basically, I found it very difficult to choose just one task from the list and strategize on it. The more I tried to do so, the more overwhelmed I felt. After awhile, I started saying really supportive things to Bob like, “You just don’t get it!” to which he responded with equally helpful (and completely understandable) statements like, “Why are you treating me like I’m screwing up?”

After many tears, I realized that I was scared. Really, really scared. Half of my brain looked at the list and said, “No problem. These tasks are easy, and they fit on a single sheet of paper, too!” The other half of my brain was freaking out in the worst way. I don’t like depending on other people to do things for me. It’s not just that my ego is attached to my independence. It’s also that I like routine and fear change. So, the part of my brain that was freaking out was thinking, “What if we get everything set up, and then one day, the person who helps me make phone calls moves to Tahiti, or breaks her leg, or goes to graduate school? Then, I’ll have to make phone calls (gah!) to find another stranger (gah!) to help me make phone calls (gah!), because I find it hard to make phone calls (gah!). “

You see the labyrinth in which I often get lost.

While the strategy list is helping us to create a support network, I am finding myself drawn to the tasks that I most deeply want to do on my own. And although the list has only one new activity for me to try, I later decided on two tasks that I could attempt this week: going to the bank to open an account, and going to the co-op to do a little food shopping.

Monday
In the morning, I made the five-minute walk to our local bank. Fortunately, our bank is set up in a very organized way. In most banks, when you’re looking to open an account, you have to stand around and wait to pounce on the next available account representative. I find that approach stressful. At our local bank, thank goodness, there is a very lovely woman whose only job is to find out why you have come to the bank and how she can help you. So, I told her why I was there, and she immediately brought me over to the desk of another very lovely woman, who helped me set up the account.

I had worn my beloved Peltor Optime 101 noise reduction headset when I was walking, but of course, I had to take it off in order to converse about the account. Fortunately, the bank was fairly quiet. Even more fortunately, my account representative did not feel it imperative to fill up every available silence with annoying chit-chat about the weather or her mother’s hernia operation. She stayed focused. I was pleased. All was going well.

And then, suddenly, I realized that I’d lost track of the conversation. It happens Every Single Time. Though I didn’t look at a clock, I am relatively certain that my ability to process incoming speech ended about 10 minutes after my arrival. That’s my usual window. After that, I start getting lost. It goes like this: I’m following along, doing just fine, following along some more, and then, the words being spoken just disappear into thin air, and my brain feels as though it’s in zero gravity. I try to follow the word pictures that get spelled out in my mind while the person is speaking, but I can never keep up. When I start falling behind, I hang onto some “keyword” that I can see in my head and completely miss what the person is continuing to say about it. In this case, the woman was talking about how all the accounts at the bank will soon be online and accessible from my home computer. I saw the word “computer” in my mind, and after that, the woman might as well have said, “I think your haircut is dorky,” because I could never have parsed the sentence.

Despite the usual setbacks, it was a successful trip, and on the way home, I was able to reflect on what had happened. I realized something significant: for all intents and purposes, I am like a deaf person who cannot speak. That is, I am limited in my ability to hear speech in such a way as to understand everything that people are saying, and I often cannot come up with the words with which to make a meaningful response. It’s ironic that the word “mindblindness” gets tossed around to describe autism when my experience feels much more akin to being deaf than blind. While I can’t see nonverbal cues, I can visualize perfectly well what might be going through the mind of another person; in fact, from time to time, this question becomes one of my Aspie obsessions special interests. But unless I am in a highly structured situation (like my therapist’s office) or in a very familiar environment (like my own home), I can’t process speech very well at all or speak in a truly purposeful manner to what is being said to me.

This major realization led me to the adaptive measures that I put into effect on Tuesday.

Tuesday
I went to the co-op as though I were deaf and could not speak. I wore my noise-reduction headset and left it on for the entire duration of the trip.

Up to that point, I had been making exceptions. At the thrift store, for instance, when I couldn’t hear someone, I’d take off the headset. It worked well, but I know that it’s a risk to go without ear protection, even for a minute or two. In that short space of time, I might hear a siren, or loud music, or people shouting, and then my nervous system is like a wire that won’t stop vibrating for several hours. So, I made up my mind that for my co-op trip, there would be no exceptions.

If this experiment were to work, I had to prepare. So, the night before, I typed up a card that said:

Hello—

I am wearing these ear protectors because I have a hearing disorder.
My shareholder number is 1234.
I will bag my groceries myself.
I will use my debit card with no cash back.

Thank you!

While I was at it, I typed up analogous cards for depositing a check at the bank, checking in at the clinic to see my therapist, mailing an envelope or parcel at the post office, and picking up my prescriptions at the pharmacy. If the experiment at the co-op worked, I might be able to have some success at other places in town.

The next day, before I left for the store, I emptied out the backpack I usually use when I’m outside my house and replaced it with a small bag containing my wallet and the card I’d written out. Then, I tossed a tote bag into my now-empty backpack to use for hauling the groceries home. I wrote up a grocery list for Ash and me, put on my headset, and set out on my great adventure.

When I got to the co-op, I started in the produce section, and then walked around the store, finding most of the things on my list. A few times, some people were talking loudly, and I could hear them, but not to the point of feeling jangled by it. My only anxiety was that I’d meet up with someone I knew and feel pressured to hear and to speak. Fortunately, that didn’t happen. After I’d filled up my basket, I walked over to a place near the checkout line and got out my explanatory “I can’t hear you” card, along with my debit card. Then, I picked an empty checkout line and threw myself at the mercy of fate.

The cashier I’d chosen smiled and said hello (I imagine), so I immediately put my “I can’t hear you” card on the conveyer belt and pointed to it. She nodded, read it, and then looked up and beamed a smile at me that was nearly blinding! I couldn’t believe it. At one point, as I was putting the groceries in my bags, someone came over to help, and the cashier waved the person away on my behalf. The only glitch was that I’d forgotten to put the PLU number on the tofu bag, so the cashier didn’t know which type of tofu she should charge me for. This led to her attempting to ask me how much it cost by showing me different numbers of fingers and mouthing the words. I had no idea how much it cost, but I just accepted her choice and moved on. I finally got everything paid for, put my groceries in the bags, waved goodbye, and walked home feeling about as jazzed as I’ve felt for a very, very long time.

When I got home, I was so excited that I forgot about the “coming home” part of the deal: whenever I go out into the world, I must get under my weighted blankets upon arriving home, even if I don’t see the need. I had remembered it after the trip to the bank, but after the co-op, I was practically flying around the kitchen, telling Bob all about the trip, putting the perishables into the refrigerator, and showing him what I’d bought when he said, “Aren’t you supposed to be under a couple of weighted blankets right now?”

What would I do without that man? I’d have to wear post-it notes right over my eyes.

Later that day, I sent an email to a school for the deaf in my area, explaining my situation and asking whether they might have any community support services for someone like me. This morning, I got two emails. In one, the person asked whether I wanted to sign up for a class in American Sign Language. In the other, the person congratulated me on my creative strategy for dealing with noise, directed me to a Yahoo group called DeafVermont, and asked whether I wanted to be put in touch with someone for work-related assistance. Wow! I don’t know what will come of these contacts, but it’s pretty nice to have someone write back and offer to help.

I could get used to it.