I’m guest posting today over at Static Vox. My friend Stat Mama asked me to write a piece about raising autistic children, and I was happy to do so. Hope you enjoy my article!
© 2010 by Rachel Cohen-Rottenberg
Archive for Spectrum Pride
Embracing the Social Model of Disability
In my last article for The Commons, our local weekly paper, I wrote about the distance I often feel from the non-autistic world, saying “[I]f you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do.” The feeling was an honest one, and yet, I’ve been troubled by these words from the time I first saw them in print.
I’ve thought long and hard about why, and I finally have an answer. I’ve come to realize that while I sometimes experience myself as living worlds apart from non-autistic people, this feeling is not a function of my autism. I am not actually worlds apart from anyone because I am autistic. I feel worlds apart because the world in which I live is not yet inclusive enough to take my particular set of strengths and sensitivities into account.
In the larger world, two models of disability are always in play. The first is the medical model, which posits that something is wrong with me, something from which I “suffer,” something that must be treated and perhaps someday “cured” by medical intervention. In this model, my autism is a disorder, and I am somewhere “over there,” apart from regular folks, separate and unequal.
I have sometimes found myself trapped by this point of view, mainly because I have imbibed about a half-century of negative ideas about autism and the general condition of being disabled. I had accepted without question the idea that all autistic people would rather be non-autistic, and by extension, that all physically atypical people would rather be typical. After reading the eloquent and searing words of many disabled people, I have come to understand that this point of view is a serious distortion. Many, many of us are proud to be who we are and would not want to be different. The Deaf community is a perfect example of a group that embraces its experience of the world as perfectly valid and celebrates its own unique culture. The Autistic community is beginning to do the same.
Of course, there are disabilities that require medical intervention for health and quality of life. However, not all disabilities fit this model and even when they do, they cannot be entirely defined by it. Personally, I have moved away from the medical model, mainly because it tends to create a hierarchy in which some people’s lives have value and other people’s lives do not. It creates a mindset in which we celebrate the lives of some people, while mourning the lives of others, simply based upon physical difference. I do not accept this way of understanding the richness and complexity of human life. I find it unjust and divisive.
An alternative lens through which to view disability is the social model. According to this model, disability is a social construct. That is, one can only be disabled in relation to an accepted norm. So, all the things I value about myself—my acute sensory sensitivities, my deep ability to empathize, my visual acuity, my ability to enjoy silence and a slow conversational pace—become disabilities simply because I live in a culture that does not value them. For example, because I have hyper-acute hearing, I have to wear earplugs when I go downtown or into any sound-filled environment. Until recently, I’ve thought of my hyper-acute hearing as a problem, because I find it very hard to converse with other people in public or to concentrate in the midst of noise.
But my hearing isn’t a problem in isolation. It’s only a problem because I live in a very loud culture—full of noise, full of words, full of TVs and radios and music playing everywhere I go. If I lived in a quieter culture, my hyper-acute hearing would not be a problem. In fact, when it comes to keeping people safe from harm, it would be an asset. In the same way, if I lived in a culture that valued deliberation and a more measured verbal pace, I wouldn’t have the problem of being constantly left behind. In a society in which impulsive action and rapid speech trump other ways of experiencing life, I cannot possibly keep up.
In the face of this mismatch, the only way for me to stay connected to others is to consistently ask for other people to adjust the environment so that I can be present. For example, at one of the stores in town, I ask a staff person to turn off the music when I come to shop, and whomever I ask is always happy to oblige. Everyone who works at the store wants the place to be accessible to me, and and they know that I cannot operate in an environment with music coming from every speaker. Because the staff is willing to be flexible, I have full access, just like everyone else. In stores with loud music playing, the environment is so aversive that I cannot enter, and full inclusion becomes impossible.
Moreover, when I go to my doctor’s office, I use a text-to-text device in order to communicate. Doing so allows me to avoid coming home in a state of auditory overload. My husband and I had to work long and hard to find a doctor open to this form of communication. Because it was a painful, discouraging, and exhausting process, I feel especially fortunate to have happened upon a sensitive doctor. At my last appointment, in fact, something wonderful happened. After we had been typing back and forth for about a half hour, she said, “I’m exhausted. I’m not used to typing so much. Now I know how you feel with your auditory processing challenges.”
And I replied, “That’s amazing. Writing and typing are so natural to me that I forget that other people could find them difficult.”
It was a perfect moment. She understood me. I understood her. I didn’t feel worlds apart at all. I had a different way of communicating during appointments—that was all. My way of communicating was no better and no worse than anyone else’s. At that moment, I became more than the sum of another person’s preconceptions. I felt myself a part of the world, able to express myself fully, with a presence equal to that of every other human being.
So, yes, if you are typically abled, I sometimes feel that we live worlds apart. But it doesn’t have to be that way. If we lived in a society that took human diversity for granted, that made room for difference as a deeply held value, every one of us would benefit. Our view of one another would become much more expansive, much more respectful, and much more compassionate. Ultimately, we might even see one other as perfectly different and perfectly human.
© 2010 by Rachel Cohen-Rottenberg
No More Disorders: Debriefing from DSM Diagnoses
Over the past few months, I’ve found myself moving further and further away from the mental health profession and its view of the world. It’s always difficult to know how these things begin, especially for someone like me, who spent many years in front of therapists. For a long time, psychotherapy helped me. It gave me a language with which to express the abuses of my childhood. It allowed me a safe place in which to work out the ways in which the trauma was affecting my life. It helped me to move beyond being a victim to a survivor, and then it helped me move beyond being a survivor to simply being Rachel.
So where did it all go wrong between the mental health profession and me? I’m not sure it did. As is my history with most large groups, I just outgrew it. And once I outgrew it, I began to see all the ways in which its definitions were still limiting me, because I hadn’t dislodged those definitions from my brain.
The process of debriefing from the mental health profession began when I was still in therapy. I had a conversation with my therapist in which I began to realize that the paradigm I was developing was altogether different from the one in which he was comfortable. We were talking about diagnoses, and I was still very much wedded to the idea of having one—or so I thought. The conversation went something like this:
Me: When you write up your paperwork about our sessions, do you include a diagnosis?
My therapist: No.
Me: If you had to give me a diagnosis, what would it be?
My therapist: Well, you definitely have a mood disorder.
Me: I do?
My therapist: Yes.
Me: How do you define that?
My therapist: Well, you’re anxious and sad a lot.
Me: That means I have a disorder?
My therapist: Yes.
Me: But look at my situation. I’m dealing with being disabled in mid-life. The world is not set up to bring someone like me into full membership. In fact, I feel invisible most of the time. It makes me sad. I’m grieving. Anyone would feel sad and upset in that situation. Why does that mean I have a disorder?
My therapist: Because it’s your problem.
Me: What do you mean it’s my problem? I live in a society that renders me invisible. Why isn’t it society’s problem?
My therapist: Because it’s your problem.
Me: But I can’t solve it alone. I realize that I have to deal with what I’ve been given, but you can’t possibly expect me to just bear up cheerfully under the weight of all this difficulty. There’s a relationship between me and the world here. What about the world’s dysfunctionality? Why is this all on me?
My therapist: [insert patronizing therapist look here]
Me: Do you understand what I’m saying?
My therapist: Yes, and it’s still your problem.
Me: I can see we’re not getting anywhere.
I left therapy soon afterward.
I’ve thought of this conversation a great deal over the past few months. To my mind, it encapsulates everything that is wrong with the mental health profession:
1) Having a human emotion such as sadness, grief, anxiety, or anger in response to an ongoing traumatic, life-changing, unjust, or otherwise maddening situation is evidence of a disorder.
2) The medications I was taking were never on the table as a cause of my anxiety and depression. (As it turns out, they played a major role).
3) We don’t need to talk about disabilism, its impact on people, and how we need to change it.
4) People become transformed into patients and put into diagnostic boxes.
5) We only need to talk about how screwed up the patient is and how we need to change the patient.
Over the course of my life, I’ve been labeled (officially and unofficially) with depression, general anxiety disorder, post-traumatic stress disorder, Asperger’s disorder (also known as an autism spectrum disorder), and sensory processing disorder. And next week, I’m going to an audiologist who will most likely diagnose me with auditory processing disorder.
I can’t tell you how depressing it is to keep collecting disorders like this. (I suppose that means that I have DODDD: Depressed over DSM Diagnoses Disorder.) All these labels have done a huge number on my head. If I’m going to live a full, happy, and empowered life, I need to send these diagnoses back to where they came from, because they are not me and they have nothing to do with me.
Let’s start with autism, since that’s what got me started thinking about this whole issue in the first place. Autism is not a disorder. It’s not a collection of impairments. It’s not a series of deficits. It’s not something that’s wrong with me. It only looks that way because I live in a society that values certain things to the exclusion of others. It values yacking about non-substantive things; I like substantive conversation. It values social chit-chat; I don’t do social chit-chat. It values being loud; I can’t spend any time in loud environments. It values going fast in every way possible; I cannot follow fast speech, fast-moving objects, or fast-moving graphics.
The society I live in is fearful of silence and deliberation. It thrives on mutually agreed upon deceptions. It abhors directness. It does not honor one’s word as one’s bond. It values appearance over substance. It tyrannizes us with the necessity for “positive thinking” above all else, as though it weren’t simply all right to give vent to one’s emotions when terrible things happen and heartbreak is the only sane response. In short, from my point of view, the society I live in is very unhealthy. Does that mean that something is wrong with me? Why? Because I’m in the minority and the majority is always right? Such nonsense.
My acute sensitivities are not a problem in and of themselves. My emotions are not a problem, in and of themselves. My post-traumatic stress issues are not even a problem, in and of themselves. All of these things can be a source of great power and heartfelt service to others if I use them properly. All of these things only become a problem when they go against an arbitrarily defined idea of “normal.” Then I get people trying to prescribe, discuss, and cure them out of me. But as a friend said to me the other day, please find me this “normal” person, because I haven’t stumbled across him yet. (And yes, the “normal” person is definitely a guy, because being male is part of the standard for “normal.”)
Of all the things that American culture values as “normal,” conformity is the most important. We talk about respecting difference, but if we respected difference, we’d just go around doing it and not talking about it all the time, now wouldn’t we? Here in America, the home of “rugged individualism,” we don’t respect difference. In fact, conformity is Job One. Here’s how it goes: You can only be a rugged individualist if you’re white, male, Christian, heterosexual, and fit into a certain unnamed place on the neurological spectrum. If you’re something else, it gets scary for those rugged individualists. I don’t know why all the rest of us on the racial, gender, religious, sexual, and neurological spectrum should make the rugged individualists faint, but apparently, we do.
When it comes down to it, autistic people, or bipolar people, or schizophrenic people, or traumatized people, or anyone in any other group of people, are just different from a mythic “norm” that simply doesn’t exist. There isn’t a person on the planet who won’t fit into a DSM diagnosis if you look hard enough—or who can’t be misdiagnosed into one if you don’t. They’ve got a diagnosis for everything a human being can possibly go through, which makes life itself a pathology and human beings nothing but walking disorders.
Well, I don’t believe that life is a pathology and that people are walking disorders. To heal this kind of mindset, I’m starting with my own distorted sense of myself as disordered—a distortion I’ve taken on as though it’s a clear reflection of who I am. It’s not. I know that now.
© 2010 by Rachel Cohen-Rottenberg
In Celebration
When I gave birth to my daughter, I was 34 years old. I remember quite clearly watching the nurses weigh and measure her. I remember how loudly she was yelling when they bathed and swaddled her. I remember how calm and quiet she became when they put her into my arms for the first time, because she could once again hear the familiar sound of my heart.
And I remember thinking, “She’s brand new. We’re at the beginning. When she’s 18 and ready to leave home, I’ll be 52. I’ll be so old! That’s forever away.”
And this year, I’m 52, and my daughter is talking about going to California after she graduates high school.
Please be assured that this post is not another meditation on how fast the time goes, or how brief it all is, or how hard it is to let go, even though all of those things are true.
This post is about reaching a crossroads, about making a commitment, about finding the strength to face what comes. It’s about doing all the same things I did on that day that my daughter was born, except that now I do them in celebration of my own birth and my own life.
It used to be that I hated thinking about my birth. It reminded me of my parents. It wove me back into the fabric of who they were, because I had to remember who gave me my body, my eyes, my face, my DNA, my life.
But now, suddenly, I want to celebrate by giving myself the only gift worth having: the gift of myself.
Yeah, I know that sounds hokey, but I am not in a hokey mood. Far from it. I’m not talking about a kind of New Age “love and embrace the special soul that you are” moment. I’m not talking about a kind of religious “I, too, am a child of God” moment. And I’m definitely not talking about a psychotherapeutic “I am lovable and worthy of love” moment.
No, I’m talking about something much more fierce and powerful than that. I am making a commitment to take myself back. Here is my declaration of intention, toward which I will strive with all of my ability:
I will no longer do anything that hurts my body, whether other people understand or not. If speaking hurts, I will not speak. If hearing hurts, I will not hear. If being touched is beyond my ability to tolerate, I will not be touched.
I will not attempt to shoehorn myself into some model of non-autistic consistency, in which if I can speak sometimes, I must speak always, and if I can hear sometimes, I must listen always, and if I can be touched sometimes, I must accept touch always. Those days are done.
Sometimes, I will speak and I will listen with my ears, only because sometimes, in specific situations, with specific people, at specific moments, when I’m calm and rested, and a million other factors that I can’t define come into play, everything comes together and it doesn’t hurt. I can’t always predict those moments, but I will recognize them when they arrive, I will choose to engage them with integrity, and I will not be pressured into doing otherwise, by anyone.
I will protect my health by communicating with others in a way that works for me, even if it takes time and other people would like me to go faster. When doing business out in the world—at the grocery store, at the bank, at a tag sale, anywhere—I will use my iPod Touch and any other appropriate assistive technology at my disposal.
I will no longer be a victim, living in fear, apologizing for who I am, and meekly asking other people to accept me.
I will live with all the fierceness and fighting spirit I’ve had from the day of my birth, and I will not turn them over to anyone.
I will insist upon my right to be treated as a complete human being, in all times and in all places, and I will not back down.
© 2010 by Rachel Cohen-Rottenberg
Disabled Like Me: An Autistic Woman in Search of Kindred Souls
Last night, I wrote the following article for submission to my local weekly paper. I’d like to get your comments, feedback, and constructive criticism before I send it in. Please let me know what you think.
Disabled Like Me: An Autistic Woman In Search of Kindred Souls
by Rachel Cohen-Rottenberg
If you are a typically abled person, you and I may have a great deal in common. I am married to a wonderful man. I have a teenage daughter getting ready to spread her wings. I love taking long walks in quiet places. I lose myself in creating things of beauty. I knit, I quilt, I sing, and I write. I try to eat healthy food, to exercise every day, to treat people with kindness, and to give a friendly hello to my neighbors.
Sometimes, I succeed. Sometimes, I don’t. In this regard, I am no different from you.
And yet, if you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do. I cannot go to parties or to restaurants; when too many people talk at once, I can’t distinguish one voice from another, and I become overwhelmed. I can’t go into stores with music playing and talk with others, because I can’t filter out background noise. In fact, there are stores in town that I cannot enter at all. The music is so loud that it assaults my nervous system and literally renders me incapable of thought.
I am able to speak, but sometimes, I have difficulty following the words that other people say. For this reason, talking on the telephone is an experience that I avoid at all costs. I have an extensive written vocabulary, but initiating and maintaining a typical social conversation is often beyond my grasp. Sometimes, I can’t find the words at all; at other times, I can’t find them quickly enough. Even when I find the words, I sometimes need to rest for hours or days afterward in order to recover from the effort.
Then again, there are people with whom I “click,” with whom talking is not a particularly difficult challenge at all. And then there are people with whom I am quite comfortable being almost entirely silent.
Despite my challenges, I do not consider myself a collection of deficits. In fact, I consider my autism my greatest strength. I am acutely empathetic and highly sensitive to all things emotional. I experience the visual world quite vividly and intensely. I have a childlike innocence that I value deeply. I am very direct and honest. I do not understand deception or cruelty. I think associatively and visually, and I arrive at insights and solutions impossible to locate with linear logic. I’m creative, intellectually curious, and fascinated by the diversity of the world. Much goes on beneath the surface.
Unfortunately for all of us—for you and for me—the word autism carries a stigma. I can’t count the number of times I’ve told someone I’m autistic and received a response along the lines of “Oh, I am so shocked and so sorry.” I’ve had friends back away. I’ve had potential allies in the community drop out of sight. I’ve seen people stare rudely at the noise-blocking headset I sometimes wear in public, and then I’ve seen them look away quickly, without a smile, without a wave, without acknowledgment that I am just like them, as though my disability has trumped my humanity.
In the year and a half since my autism diagnosis, I’ve learned firsthand what it means to be disabled. I’ve learned what it means to be invisible, to be marginalized, to be apart, to not be able to keep up, to not be understood, to not be seen as a person of equal value. I’ve known deep loneliness and isolation, and I’ve learned that these experiences are shared by many disabled people, whether our disabilities are visible or not.
I am fortunate in having a husband and a daughter who love me, friends spread throughout the country who support me, and places in the local community in which people welcome me as I am. And yet, I long for the friendship of other developmentally atypical people. I see other disabled people around me, and yet, I have not found a way to reach out directly. My sensory and communicative differences make reaching out problematic. And then, of course, there are people in the community with invisible disabilities, who look “typical” but experience the world in atypical ways. How are we to find each other?
I don’t know a better way than to write, so I am reaching out now, in the best way that I can. It matters not how old you are, what your disability is, or at what “severity” level a medical professional has diagnosed you. I am reaching out to say that I am here, that I would like to find you, and that I would like to affirm and celebrate who we are.
If you would like to connect, you can reach me by email at rachel@journeyswithautism.com. And if you see me around town, feel free to give me a friendly smile and say hello. It will mean the world to me.
Rachel Cohen-Rottenberg is a writer living in Brattleboro. Her memoir The Uncharted Path: My Journey with Late-Diagnosed Autism will be published later this year.
© 2010 by Rachel Cohen-Rottenberg
Across the Great Divide
Bob and I have been having some great conversations lately about the differences between neuro-typical and autistic modes of perception and communication. In the course of these conversations, I’ve felt immensely frustrated, strangely comforted, and very enlightened, sometimes simultaneously. I’ll share the highlights of two of these talks.
The Way Bob Says It Is Not The Way I’d Say It
On Saturday, Bob went to synagogue for the Shabbos morning service, came home for lunch, and then went back for the Torah study in the afternoon. I took a long walk in the morning, in the course of which I met a huge, grey, wonderfully shaggy dog and his person. As you know, I hardly ever take off my headphones and earplugs to talk to anyone, but this dog was just too cool and I had to say something to the woman with him. I knew that I’d last for about a minute or so of conversation, and I did, and it was fine.
The woman who was with the dog obviously loved and appreciated him, and said something like, “You know, he wants to go smell all of these great things and wonders why we can’t smell them, too!” Whoa. Another person who knows that human perception is not all there is. I had been missing these small moments of friendliness with people out on my walks, and as I continued down the street, I realized that I had made the exception for her based entirely on instinct and a sort of childlike delight in her dog. And I thought, “That’s a very good basis on which to make an exception.” When I was done, I didn’t need to go and chat it up with several other people about their canine friends. This dog was an exceptional being, so I made an exception, and it filled me up, and it was fine.
When Bob got home in the afternoon, he told me that he’d run into Fred at shul (the guy who’d magically rendered me invisible) and had “put him out of his misery” concerning my non-response to his email. Fred had copied Bob on his email to me (the one I’d deleted), the email had made Bob “want to weep,” and Bob had gently told Fred that there was nothing he could do to make things better except to keep moving forward. So, of course, the first thing I did was to get defensive about the “want to weep” part, until Bob reassured me that yes, he understood that I was the injured party. And then, of course, the next thing I did was to ask for a blow-by-blow of the conversation, just to make sure that Bob hadn’t put Fred out of his misery without Fred realizing why he was in a state of misery in the first place. I do this a lot, especially when Bob is talking to someone who has been crummy to me. Actually, I’ve been doing it for about eight years now, and it’s gotten old, and boring, and I hate boring, because being bored makes me miserable. This time, though, I’d finally had enough of boring and was able to get beyond making myself miserable. Here’s a synopsis of how the conversation went:
Me: “I’m glad you talked with Fred and resolved things. But did you tell him why things happened as they did?”
Bob: “He understood the whole thing.”
Me: “How do you know that?”
Bob: “I don’t remember all the words. It was clear. He knew what he’d done.”
Me: “But did you use the word invisibility?”
Bob: “No.”
Me: “Why not?”
Bob: “Look, I say things my way.”
Me: “Yeah, but the invisibility thing is really important!”
Bob: [Extremely unsubtle body language that says I'm going to get up and do something else now.]
Me: “Wait, wait, don’t get up! Look, I’m not resolved about this thing. I mean, I told the guy that I needed him to use his words, and that I needed him to be honest, and that I needed him to tell me what was going on, and then he didn’t. Did he understand all that?”
Bob: “Look, I’m not in the guy’s head, and I don’t know what words he’s using to understand things, but he understood that he’d screwed this up and why, okay?”
Me: “Yeah, but how do you know what he understood if he didn’t say so?”
Bob: “I was there. I know.”
Me: “Yeah, but…Oh.”
[Silence]
Bob: “What?”
Me: “This is a neuro-typical thing, isn’t it? You say words, and he says words, and you do this whole nonverbal dance, and you somehow get it, and it’s done, and it’s in your own language. And then you come home and you say it to me. And then I try to translate it back into my language, and it doesn’t translate well.”
Bob: “I think that’s right.”
Me: “You know, from now on, I think you should handle these kinds of conversations. They’re a mystery to me, but you’re very good at them.”
Bob: “Thanks. I try.”
Me: “I know. I don’t give you enough credit.”
Bob: “I know. And you do really well speaking your language to people who understand you. It’s not your fault that neuro-typical people so often don’t understand what you’re talking about, or can’t fathom how sensitive you are or what you need from them.”
Me: “Thank you, honey. I love you.”
Bob: “I love you, too.”
So here was a day in which I came to two very important conclusions: 1) If I’m going to talk to an apparently neuro-typical stranger, keep it short and make sure it’s for a very good reason, and 2) let Bob be neuro-typical and handle things in his own way, because after all, he is completely supportive of my being autistic and handling things in my own way. (I think I’ve got that reciprocity thing down now.)
I Stand By the Side of the Road and I Still End Up In a Crash
The other day, Bob and I were driving down the highway, and I was talking about my frustration with socializing and making friends with neuro-typical people. One of things that became clear is that all of my challenges started showing up when I left the controlled situation of the workplace in 2003 and entered the completely chaotic situation of unstructured human interaction.
In the software industry, I did very well. I lasted 15 years, much longer than I’ve lasted in any other group of people. Because it was a limited, goal-oriented situation, it gave me the opportunity to do one of the things I do best: observe process. I figured out how meetings worked, what people needed from me, how to set limits, how to keep from working overtime, how to get what I needed to do my job, and so forth. I moved from job to job, but each time, I moved to a better job, and I did so based on my reputation, both personal and professional. Plus, working in the software industry coincided with a number of other successes: marriage, parenting, buying a house, and becoming part of a neighborhood.
And then, I left work to become a full-time mom and oy, all my troubles started. All of a sudden, I couldn’t navigate. True, I had entered hostile territory in my old community, but not every single person there was hostile, and a neuro-typical person might have handled the situation with more, shall we say, subtlety? I handled the situation with almost nothing except honesty and directness, because after all, isn’t that what Judaism teaches? Thou shalt not lie? And isn’t that what all my years in therapy had led me to believe I was destined to do—state my needs and feelings with clarity and without apology? So what was the problem? Why was everyone so upset when I kept speaking my mind and getting down to business? The more I tried, the worse it got. I’m not saying that I was to blame. Not at all. I’m just saying that I didn’t understand how to do it any other way.
But now, I’m starting to see that the way I do it has caused me to collide with other people and has allowed them to collide with me. When it’s over, there’s usually a scene of twisted metal and steam rising from cracked radiators, and I’m always wondering what the hell happened. Again. Just like last time. Over. And over. And over. And over.
In the course of my conversation with Bob in the car, I began to understand why this pattern has gone on for so long, and that I am already moving to a different paradigm. Here’s basically how the conversation went:
Me: “I know that neuro-typical people often find me rather blunt and feel offended by me. And it’s very weird to me, because in my sensory and emotional experience of the world, I feel like I’m getting hit with a blunt instrument a fair amount of the time. It’s not that everyone has ill will toward me. They don’t. It’s just how acutely I feel things. Most people don’t know how sensitive I am, and so they can’t understand how they affect me. And I don’t understand how important all their social rules and nonverbals signals are, so I don’t understand how difficult I can be for people to deal with. I just think that all that social crap—I mean stuff—is bullshit.”
Bob: “I know. There definitely seems to be a difference in the way that neuro-typical and autistic people experience bluntness.”
Me: “So how do neuro-typical people experience it?”
Bob: “Well, for us, there are two levels to navigating socially. One level is knowing what you want. The other level is trying to make sure not to crash into people’s sensibilities. It’s as though social life is like driving down the highway we’re on. You have to know where you’re going and how to get there. But if that’s all you know, you’re going to cause an accident, because you won’t be looking in your rearview mirrors, you won’t be watching the flow of traffic, you won’t know when to slow down, or speed up, or let someone into the lane, or pass them. Everything works on a highway if everyone is paying attention to everything. But now and then, you get someone going 95 miles per hour who insists on switching lanes constantly, driving in the breakdown lane, and getting past everyone, because he just has to get where he’s going and that’s all he can think about. That’s when the flow is threatened and people start crashing into one another.”
Me: “Okay, so I recognize myself in the person who just wants to get there. I recognize myself so well that I’ve learned to hang back in a major way and let everyone else go around me. In fact, I’ve gotten out of the damned car altogether, and yet, I still end up in crashes.”
Bob: “What do you mean, exactly?”
Me: “Take the situation with Fred. I didn’t walk into a complicated social situation with Fred. I kept it simple. I know better than to drive a car on a highway. I’ve learned my lesson. I wasn’t even in a car. I was standing by the side of the road, looking at the trees, waiting for him to get done driving hither and yon and meet up with me. After awhile, I realized he wasn’t going to come by and get me, and that made me sad, but I dealt with it. And then, all of a sudden, he broadsided me. I was just standing by the side of the goddamned road, looking at the trees blossoming, and the next thing I knew, I was lying next to the retaining wall and my head hurt really bad.”
Bob: “I see what you mean.”
Me: “You know, whenever this has happened in the past, I’ve thought, well, screw this, I’m getting off this highway and finding me another highway, because the people on this highway are crazed. And then I go and find another highway, and I stand by the side of the road, and bang! There I go, flying through the air, just when I’m enjoying the view. And I think, well, screw this, I’m getting off this highway, because the people on this highway are crazed. But now, after all these years, I can’t keep looking for new highways. They’re too dangerous. I imagine that there must be state police shouting at me on their bullhorns that pedestrians are not allowed on the roadway, and there must be people leaning on their horns as they swerve away from me, and the ones who come a little too close must be larger than they appear in the mirror, but somehow, I can’t see or hear them.”
Bob: “I think that’s true. So what do you do?”
Me: “I need to go find myself a bike path. Not a bike path where people wear spandex and race by you like they’re on the Tour de France. I mean a bike path where people are taking leisurely rides and other people are standing by the side of the road.”
Bob: “Sounds like a plan.”
So how do I find these other souls on this mysterious bike path? Easy. I write an article for my local paper, asking “Where are all the other autistic or otherwise atypical people in this community, because I’ve only met two others, and it’s statistically impossible that we are the only ones here.”
I know, I know. It’s very direct. But that’s just me.
© 2010 by Rachel Cohen-Rottenberg
The Road to a Diagnosis: Ben’s Story
A little while ago, I interviewed my friend Ben about the road he took to an autism diagnosis. I related very much to Ben’s process. Perhaps you will, too.
Rachel: When did you first suspect that you were on the spectrum?
Ben: Well, I never suspected I was. I have a friend who had figured it out for herself about six months earlier and asked me if I had ever heard of Asperger’s Syndrome. It was almost like the time my mom asked me if I was gay. After we talked for a while, I went home and spent several days researching AS online, exhaustively. I got books out of the library (Pretending to be Normal and Tony Attwood’s guide, among others). I had spent my life knowing I was odd and different, and now I had a label to hang on it.
Rachel: How did you feel about discovering that you’re on the spectrum?
Ben: I swung back and forth between elation that I wasn’t the only person like this, that there was a name, that it was even a “syndrome,” to feeling that I now had to give up on some long-standing but pretty useless aspirations for myself. I was worried what this might mean for my relationship, too. After all, my partner already knew me and wasn’t going to be freaked out by a label, but I was worried he might be upset at what he’d have to give up as well—like the possibility that I would never be okay going camping, or out to clubs to go dancing (without my earplugs). The up side is that even though my partner isn’t an Aspie, he shares some significant AS-like traits, which helps in the areas of sympathy and understanding.
It’s been over a year, and I still have days that I’m sad when I realize there’s a particular something I’m never going to be good at.
Rachel: When did you self-diagnose and what assessment tools did you use?
Ben: Winter of 2008. I used the DSM-IV definitions, but found online personal experiences of people to be much more confirming. The DSM doesn’t cover weird AH HA! moments like:
Clothing tags!
Eating habits!
Sensory overload and extreme sensitivity!
Have I ever met a person with my amazing sense of smell? Not really. It’s fun but almost useless in daily life, and sometimes distracting or debilitating.
Rachel: Did you bring your self-diagnosis to a therapist?
Ben: I spoke with my therapist, whom I was seeing for cognitive behavioural therapy for depression (!) and anxiety(!). I don’t think he believed I could have AS because I made excellent eye contact (thank you!) and could be gregarious and talkative (nervousness channeled). He said we could find some specialists and get a formal diagnosis, but never pursued it. I stopped seeing him about four or five months after telling him about the AS.
Rachel: Why did you decide to seek out an “official” diagnosis?
Ben: I finally asked my family doctor for a referral, about ten months after my self-diagnosis. I wanted one for medical reasons, to be able to treat some of the anxiety and other complications that come up for many Aspies. I wanted to find out if I could access government programs or assistance for the disabled. I wanted a “piece of paper” that I could have ready when the world said I just needed to work harder at it and that I could be like everybody else.
What can I say? I was brought up in the same culture that values certification and credentials.
Rachel: How did you feel about the prospect of diagnosis?
Ben: Nervous.
Rachel: When did you have the assessment?
Ben: Last October, 2009.
Rachel: What did it consist of?
Ben: Sitting down with a psychiatrist and talking over the usual AS points.
Rachel: How long did it take, and when did you get the results?
Ben: About an hour, and he told me immediately. The results were forwarded to my family doctor.
Rachel: Has your “official” diagnosis been a positive step? Has it had any significant impact on your life, positive or negative?
Ben: Mostly positive. It kind of gets any “Am I or am I not?” questions out of the way. It makes sure my family doctor knows I’m not making it up, but it hasn’t had a huge impact on my life. I was quite certain I had AS before the diagnosis, but because the definition and the right to access services were controlled by others, I needed to be “officially” AS in order to consider telling anybody in authority (government agencies, employers, etc.) that I did indeed have Asperger’s Syndrome.
Rachel: What do you like most about being on the spectrum?
Ben: My slightly tangential approach to thinking and problem solving. My acute senses and “noticing” of things.
Rachel: Ben, thank you for sharing your experience.
© 2010 by Rachel Cohen-Rottenberg
And Now, A Word From My Daughter
My daughter Ashlynne is a junior in high school. For her journalism class, she keeps a blog about events and issues of interest to her. After seeing autism in the news recently, she decided to write about the most recent and infamous Autism Speaks video. She sent me the link to her post and gave me permission to mention it on my blog. If you’d like to read her piece, you can find it here.
It’s very heartening to know that my daughter sees the issues so clearly and that she is sharing her knowledge with her peers. Way to go, Ashlynne!
© 2010 by Rachel Cohen-Rottenberg
Autism and Self-Worth
When I first started therapy (in 1983), I learned that I had to work on improving my self-image. I learned that I had low self-worth, and that if I worked very, very hard, my sense of self-worth would improve.
And it did. I think. At least, I was under the impression that it improved, because I was feeling ever more confident about my abilities as a working woman, a wife, and a mother.
But now I’m experiencing a new phenomenon. I no longer have low self-worth. What I have is no self-worth. At all.
That’s right. None.
I am not exaggerating. Last night, I looked at myself and realized that there is a big empty space where my self-worth ought to be. How my self-worth snuck off without my noticing is beyond my comprehension. But it’s gone. I’ve looked, and it just ain’t there.
Perhaps it went like this: Seven years ago, when I married Bob, I quit my full-time job to become a full-time homeschooling mom; then, a few years later, my daughter went to regular school, and the homeschooling ended. So, in the past seven years, two of the most important ways that I built my self-esteem have gone away: working at a job and homeschooling Ashlynne. During much of that time, I lived in a community that was not very welcoming to me (to put it mildly), and that experience further contributed to my self-esteem issues.
But, you see, I still had “self-esteem issues.” There was some self-esteem with which to work. Now, it’s just up and left.
It’s possible that with working and homeschooling gone, my autism diagnosis set off a massive identity crisis, followed by the realization that my entire way of living had to change, followed by a toxic explosion of internalized disabilism. Whatever the reason, I feel no self-worth at all. I do a beautiful job repairing a quilt, and all I can see are the imperfections in my work. I knit my husband a sweater from the Icelandic wool he spun himself, and all I can see are all the mistakes I made. Everyone in creation is telling my husband what a wonderful sweater he’s wearing, and it has no impact on me at all. People tell me how much they like my writing, and it doesn’t penetrate the dense fog I’m living in.
It’s gotten me questioning how one builds self-worth in the first place. I mean, did I ever have self-worth, or did I just do a lot of things that convinced me I did? Having a job and being a homeschooling mother are both wonderful, but they were always going to end; therefore, I based my self-esteem on impermanent things. That seems like a dangerous move from where I sit right now.
I used to have a decent sense of myself because I always felt that I could fake it well enough to get by. I could make pleasant conversation; I could go to soccer games and act like I belonged; I could chat it up with the neighbors about anything and everything. But working hard to fake it no longer applies. I walk around with a headset and don’t speak or hear very much at all in the outside world. Pretending to be normal basically went up in smoke once I realized that I had to wear a device in public that most people use when mowing the lawn.
Worse yet, my conversations with my therapist seem to be having a negative impact on me. For instance, last week, I told him that I feel like I need to stop talking entirely when I’m out in the world. He kept saying that perhaps it wasn’t all that black and white, that I could be more moderate, check in with myself, and talk more when I wanted, and less when I didn’t. What he doesn’t understand is that for me, moderation and autism do not mix. Moderation can only apply when one has a fairly moderate experience of the world. When one’s experience of the world is extreme and intense, a moderate solution can be worse than none at all.
I’m not sure that my therapist realizes that the minute I open my mouth, I’m already in way over my head. I crave communication. I want to keep talking. So much. But I’m playing catchup with everyone. I’m always a few clicks behind the conversation, and I have to make a tremendous effort to follow what people are saying. When it comes time to speak, I have to call on resources I don’t often have. Plus, I am so used to working hard at speaking that I forget that I’m actually working hard at speaking. It’s always a strain, but the strain is so familiar that I don’t even notice something is wrong until it’s way too late and everything in my body hurts.
I know that my therapist is responding to my upset about my social isolation and trying to come up with solutions, but I don’t need solutions. Unless I happen to run into a dozen autistic people in my local community, my social isolation will remain. So perhaps a better strategy would be to talk about how to handle the seriousness of my disabilities and their consequences for my life. I will never be able to walk through the world as a hearing person. I will never be able to have a relaxed conversation out in public. I will never be able to pass for normal again. I would like some help dealing emotionally with the gravity of the situation, not all kinds of ideas about moderation that simply cannot work for me.
Some years ago, I ran across a book called Shambhala: The Sacred Path of the Warrior by Chogyam Trungpa. The author writes about the spiritual warrior in a way that describes the impulses and demands of my autistic experience. I was drawn to the following words even before I knew about my autism:
“[The spiritual warrior] has no room and no desire to manipulate situations. He is able to be, quite fearlessly, what he is.
[P]aradoxically, the warrior finds himself more alone. He is like an island sitting alone in the middle of a lake. Occasional ferry boats and commuters go back and forth between the shore and the island, but all that activity only expresses the further loneliness, or aloneness, of the island. Although the warrior’s life is dedicated to helping others, he realizes that he will never be able to completely share his experience with others. The fullness of his experience is his own, and he must live with his own truth. Yet he is more and more in love with the world. That combination of love affair and loneliness is what enables the warrior to constantly reach out to help others. By renouncing his private world, the warrior discovers a greater universe and a fuller and fuller broken heart. This is not something to feel bad about: it is a cause for rejoicing. It is entering the warrior’s world.”
I’m not sure I’m ready to rejoice.
© 2010 by Rachel Cohen-Rottenberg
More Thoughts on Labels and How to Use Them
I’ve been very gratified by how excited and supportive people have been about the new name for my blog and my reasons for choosing it. Apparently, a number of others feel as I do about wanting to distance themselves from anyone using the Asperger’s label in an elitist way.
For me, dropping the Asperger’s label is the right decision. It’s been a long time coming, and I feel liberated by letting go of the pretense that I am anything other than autistic. But the process of coming to terms with who we are, especially for those of us who discover that we are autistic in mid-life, is complex and personal. I would never judge the process of a fellow autistic who is trying to carve out his or her path. For many autistic people, the word Aspie feels absolutely right, and I would never want to take that good feeling away. So, I want to be very clear: I don’t have an issue with anyone who self-identifies as an Aspie or uses the Asperger’s label, so long as the person is not being elitist, divisive, or dismissive of anyone on the spectrum. If someone self-identifies as an Aspie, and wants to be called an Aspie, I will respect that choice.
Remember: The DSM criteria do not even come close to describing the experience of being autistic. Not even close. Not even in the ballpark. Not even in the same country. And I’m talking about the criteria proposed for the DSM-V as well as those already in the DSM-IV. They are so far off the track, it’s ridiculous.
So I don’t want to put too much energy into arguing over labels. I want to do what I’ve always done with this blog: to talk about the experience of autism from the inside, to give and receive support, and to discuss the joys, challenges, difficulties, and gifts that come with being autistic.
© 2010 by Rachel Cohen-Rottenberg
