Archive for August 30, 2010

Working in Harmony with Myself

August 30, 2010 Rachel Disabilities, Happiness, My Books, Self-Advocacy

As I watch my book make its way into the larger world, I find myself looking back over the changes that have happened since I finished writing it this winter, and I’m amazed. I’m able to do a great deal more than I thought possible back then. Many of the things I can now do are very humble according to the values of the world we live in, but they mean a great deal to me, because I’ve always enjoyed doing the little things in life. In addition to doing the laundry and washing the dishes (two activities that have always stayed with me), I can do the following things once again:

Food shopping: Going to the co-op is no longer the aversive experience it once was. As I’ve mentioned before, I go in with my earplugs, I communicate in writing, and I enjoy the whole thing. I would love to be able to take out my earplugs there and just talk, but it’s far too crowded and noisy, even during a slow time, and I know that it would cost me too much energy, so I conserve. I love being able to go and buy my own food, though. Since my life, now and always, is a triumph of organization, I try to plan things so that neither Bob nor I needs to go to the store more than a couple of times a week. On the other hand, if we’re missing a few things, I don’t mind popping down to the store to pick up what’s needed on an ongoing basis. I enjoy it. Go figure!

Housecleaning: A couple of months ago, our housecleaner shattered her wrist playing softball. (Ouch!) While she’s recovering, Bob and I have been cleaning the house ourselves, and it’s been okay for me. My main difficulty has always been the dizziness that comes with my vestibular issues, but I’ve learned how to move my body slowly and carefully so as to avoid a lot of it. I’ve been sweeping, mopping, cleaning the bathroom, and straightening the house. I’m one of those very weird people who actually likes housecleaning, so this is a big plus for me.

Cooking: I have rediscovered the fun of cooking. For a long time, those vestibular issues kept me from it, because it was difficult to lean down to get pots and pans out of lower cabinets, and to reach up for bowls and dishes in upper cabinets. But, as with housecleaning, I’ve learned to move my body slowly and carefully to avoid dizziness as much as possible. As a result, among other things, I now make a great Mexican Mole and Curried Tofu; the latter is simmering on the stove as I write. I’ve also been making gluten-free, dairy-free peach crisp (courtesy of our peach tree that gave us fruit in abundance this year) and having it for breakfast every morning.

Driving: I’m driving again. I’m not commuting 50 miles every day, mind you, but when I need to get somewhere, I can get in the car and go. For instance, I have a friend who doesn’t drive. When she comes over to watch a movie, I pick her up, bring her here, and then drive her home afterward. I’m fortunate in that I live downtown and much is available to me without driving. I love to walk and I can get just about anywhere on foot. But it’s very nice to be able to drive when I want to. I’m planning on driving to my daughter’s outdoor soccer games this fall.

Keeping track of finances and paying bills: For most of my adult life, I paid every bill and accounted for every penny. I was the primary (and for several years, the only) breadwinner in my first marriage, and keeping track of the finances was always my responsibility. I chose it, because it gave me a sense of competence and control—and because I hugely disliked trusting someone else to get it right. When I married Bob and quit my job, I let him take over the bill paying and finance tracking, because I trusted him and wanted the break. Lately, though, I’ve missed it. So now, in addition to handling the finances for my book, I’ve again taken on the responsibility for paying the bills, for keeping track of our expenses from day to day, and for ensuring that there is always sufficient money in our accounts.

Running errands: Remember when I cringed at the idea of running…an…an…an…errand? Now, I look forward to it. I don’t try to do too much in one day, but I like going to the post office, the bank, the art supplies store, the hardware store, and any other place without loud music cranked up. I use my earplugs much of the time for running errands, mainly to keep out competing sounds that my auditory system has to work too hard to process and manage. But if I have a question, or need to pay for my items, I can take out my earplugs and talk a bit. Of course, if I sense that any ambient noise is going to become aversive, I put my earplugs back in and let the person know why.

Staying at home while Bob is travelling: This task used to be my biggest challenge. For instance, I’d been going down to New York City partly because I liked travelling out of town once in awhile, partly to see Bob’s dad, and partly to avoid being by myself. But now, I find myself really enjoying the time alone. The last time Bob was out of town, I painted the door and baseboards in the hallway, cooked up a storm, ran a few errands, did artwork, and slept well, without any fear and trembling at all. What a tremendous change! It’s been a long time coming. Glad I got there.

Going to appointments in which I need to talk and listen for extended periods: Now, sometimes talking works, and sometimes, it doesn’t. Everything depends upon the level of ambient noise, whether the other person is in a rush and talking quickly, how many people are in the room and participating in the conversation, and whether I have time to write things down and ask for clarification. The last time Bob was away, I went up to the local community college to discuss taking some online courses there. I needed to sit down with an advisor for an hour or so, and before I went, I called the office (via TTY) and told the advisor just what I needed. I told her that if there were too much noise or too much rush or too many people, I’d need to use my UbiDuo text-to-text device. As it turned out, she was very sensitive to my needs and we had a very enjoyable conversation in a very quiet place. Unbelievable. I decided not to take courses this fall after all, but I was glad that I was able to explore the option. Six months ago, it would have seemed overwhelmingly beyond me.

Doing community work: I’ve had some false starts and stops on the way to figuring out what works for me. Working at the thrift store really can’t work, because of the crowds and the music, and I’ve been able to let go of that. I’ve been making knitted items for the store to sell this winter, and I’ll continue to do mending work as needed, but I can’t put myself out into the community by working in crowded spaces. However, I’ve begun to find my stride since becoming the Chapter Leader for the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). In this role, I’ve been working to find a space to create a sensory-friendly art studio and gallery in town for people on the spectrum. I went over and looked at a place last week, and loved it, but it wasn’t wheelchair accessible; since full inclusion is the name of the game here, I am continuing to look. As anxiety-producing as it is to talk with people I don’t know, I am getting out there and doing it, making contact with people about possible spaces, and beginning to get more comfortable with the whole process.

In addition, I’ve made contact with the people who run The Vermont Partnership for Fairness and Diversity, a civil rights organization based in Brattleboro that has disability rights as part of its larger charter of supporting a culturally diverse, safe, and respectful community. We are beginning a conversation about the ways that ASAN-VT can work with the organization to further our mutual goals. I’ve also begun to work on putting myself out there as a speaker on issues related to autism and disability rights. So all that is very positive.

Making friends: Yes, Virginia, autistic people can have friends. I have begun making new friends, both autistic and non-autistic, and I really enjoy my time with them. I have learned that I have to seek out sensitive people, no matter what their basic wiring. Sensitive people will respect my experience and listen to what I need, and I can offer exactly the same to them. I am a highly sensitive person, so it makes sense that I would be most compatible with other highly sensitive people.

So Rachel, what happened? Did your autism get better? No, my autism didn’t get better. And, as I understand it now, it hadn’t gotten worse before. It’s becoming clear that the loss of abilities I was experiencing for a few years wasn’t the result of autism, but of failing to take autism into consideration and live my life accordingly.

As I’ve mentioned before, I spent the first 50 years of my life doggedly attempting to eat, work, play, speak, act, and drive myself to achieve like a typical person, and then some. I didn’t just go full steam ahead like a person with a typical neurology. I went beyond even that, probably in an attempt to compensate for what was different about me. Even if I had had typical wiring all those years, I could have easily driven myself into the ground. As it was, I was like a person with mobility issues trying to run a marathon every day and keep up with people whose bodies worked differently from mine. Burnout was inevitable.

In a few short years, I seemed to go from super-functional to struggling with basic things, like going food shopping. I thought it was the autism catching up with me. It wasn’t. It was my lifelong ignorance of my being autistic that was catching up with me. For 50 years, I didn’t know that I was autistic, so I couldn’t take care of myself properly. I never rested. I never gave myself a break. I never took care of my sensory needs. I never said “I can’t” when I couldn’t do something. I just drove myself, and drove myself, and drove myself, thinking that with just a little more effort, everything would work out. And then, when the burnout hit, I had to stop, and suddenly, I found myself unable to do a great deal.

And now, nearly two years later, I can feel how much my body and mind have healed from the effects of burnout. Now that I understand how I work, taking care of myself has become a reflex. Taking breaks has become integrated into the fabric of my life. Making my needs clear has become a necessity. Being open about the adaptations I need to make has become a source of pride. And acknowledging what I cannot do has become an enormous relief. And what are the things I cannot do? I cannot tolerate noise, so I wear earplugs. I cannot talk with people with a lot of ambient noise, so I ask for quiet. I cannot follow a constant stream of speech, so I ask people to slow down. I cannot afford to burn up energy by going into auditory overload, so if I feel that it might happen, I bring my text-to-text device and let people know that we may need to use it. I am unable to focus in the midst of crowds of people, so I find other ways to be with people, and I feel free to excuse myself from situations that push me past my sensory limits. I cannot schmooze, make small talk, be indirect, or do social networking, so I do not try. I socialize my own way: I talk about substantive things, I listen to people’s problems and attempt to come up with solutions, and when no solutions are possible, I do my best to be friendly, compassionate, and present.

And yes, the world is not exactly set up to make my way of being easy, and so I have to advocate for myself as well as I can. Self-advocacy has been the single most healing, empowering endeavor of the past two years, and I am actually getting pretty good at it. Being a woman and disabled, I’ve got a double set of messages to overcome about sitting down and shutting up, but I am overcoming them just fine, day by day, and I am committed to doing so.

And, just to give credit where credit is due, I have to mention the fact that the process of getting off the Lorazepam has been one of the most healing things I’ve ever done for myself. I’m down to .35 mg per day, and if all goes according to schedule, my last drop of Lorazepam will be on January 9, 2011. And what a difference it’s making! When I was taking 1.5 mg/day of the stuff, my emotions were all over the place, my sensory sensitivities were through the roof, and my brain was so fogged that I couldn’t think straight. My husband has been noticing that my emotions are much more moderate, positive, and under my control. I’m becoming increasingly aware that my sensory sensitivities have become more manageable. And my thoughts only become sharper by the day.

Accepting my disabilities and working with them have been the key to healing the burnout and enjoying the things that are meaningful to me. The first 50 years of my life were about surviving. I’m no longer just surviving. I’m living and thriving, and I intend to continue doing so every day for the rest of my life.

© 2010 by Rachel Cohen-Rottenberg

4 comments

My Memoir Reviewed on Aspie From Maine and Aspitude!

August 29, 2010 Rachel My Books


I’m very happy to announce that Kate Goldfield, my fellow New Englander over at Aspie from Maine, has written a great review of my new book. Kate is the author of the recently published Common Sense: Adventures with Autism and Chemical Sensitivity.

In addition, my friend Elesia Ashkenazy of Aspitude! wrote a pre-publication review of my book that you might find informative. Elesia is on the board of the Autistic Self Advocacy Network (ASAN) and a tireless advocate for the rights of autistic people.

Thank you, Kate and Elesia!

© 2010 by Rachel Cohen-Rottenberg

2 comments

On Puzzles, Privilege, and Missing Pronouns

August 24, 2010 Rachel Ableism, Critiques of Autism Theories, Marginalization, Privilege, Theory of Mind (ToM)

When I read blogs by the parents of autistic children, I often happen across the puzzle metaphor. It finds its way into statements such as “My autistic daughter is such a puzzle” or “We’re still putting together the pieces of the puzzle that is my son.” I’ve always had a visceral response to the puzzle image to describe autism and autistic people, especially when used in the puzzle-piece logo of the Organization-That-Shall-Not-Be-Named. It’s so offensive on a gut level that I’m having difficulty even beginning to write about it.

A puzzle suggests the idea that there might be some pieces missing. Of course, such an idea is anathema to me, when applied to any person on the planet. The only way in which you could look at a person and see pieces missing is if you begin with a preconceived notion of what a person is supposed to look like. If the person doesn’t fit that preconceived picture in your mind, then you see all kinds of gaps. But if you see the person for himself or herself, and accept the person as a given, without reference to an outside standard, then the picture becomes whole. The person is simply a person, on his or her own terms—nothing more and nothing less.

If you begin with an idea of “normal” that says that a person should be able to speak by the age of two like “normal” children, enjoy the same kinds of activities as “normal” adults, and socialize in a “normal” fashion, you’ve got a seriously complex, preconceived image of what it means to be a whole person. It’s nearly impossible that any atypical person could even begin to approach that image of normal. When we don’t, some of us are told that we’ve got pieces missing. Autistic people are told that we lack empathy, theory of mind, central coherence, and the ability to live as social beings—which, by the by, is all complete and utter nonsense, just in case you were wondering.

So who gets to decide what picture is normal? Other people who have the privilege of defining themselves as normal, that’s who. It’s a nearly invisible privilege for the most part, because it’s everywhere. It’s taken me a long time to see it and, ironically enough, I’ve begun to see it by virtue of what is missing from the language of many of the non-autistic people who talk about us.

Two words are missing from the statement “My autistic daughter is such a puzzle”—two little words that would change that sentence from an expression of privilege to an expression of a personal experience. And those two little words are to me. If someone were to write, “My daughter is such a puzzle to me,” then we’d be getting somewhere. All it takes is the inclusion of the personal pronoun. Of course, there is still that little issue of the puzzle metaphor, which runs the risk of portraying the child as a series of pieces, but at least the source of the fragmented perception would stay where it belongs: in the eye of the beholder. The speaker would be taking responsibility for describing his or her own limited perception rather than an objective fact.

Another example of this limited perception appeared on a recent blog by a parent who said that her autistic child is afraid of things “that just aren’t scary.” She didn’t say “that just aren’t scary to me.” She said, “that just aren’t scary,” as though there were an objective measure of what’s scary. These words imply that somewhere in the far reaches of the universe, there is some ideal called scary, we all know what it is and, if we’re scared of things that don’t measure up to that ideal of scary, something is terribly wrong. Now, I have always assumed that being frightened was a subjective experience, and that an image or a situation that frightened one person might not frighten another. I have never assumed that what went on in my own mind was exactly the same as what went on in other people’s minds. Far from it.

But wait a minute. I remember reading somewhere that being able to understand that other people think differently than I do is called having Theory of Mind (ToM). So, miracle of miracles, I actually have ToM, autistic though I am! And when a non-autistic person can’t imagine why an autistic person might be afraid of something, that non-autistic person seems to lack ToM. I see evidence that non-autistic people lack ToM regarding autistic people all the time. In fact, I see it in the work of “experts” on autism, and yet rarely does anyone call them on it. Usually, the ones who do the calling out are autistic people like me, who by definition don’t understand ToM, so we’re dismissed before we begin.

And once we’re dismissed, people can own the discourse about us and say just about anything they want. Consider the following:

A non-autistic person says that the world of an autistic person is a puzzle. That statement is taken as objective truth by most non-autistic people. In fact, it is irrefutable evidence that the person speaking is “normal” and that the person being spoken of has a “disorder.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Yes, you’re right. Poor thing. He certainly is a puzzle!”

An autistic person says that the world of neurotypical people is a puzzle. That statement is taken as a purely subjective perception by most non-autistic people. In fact, it is irrefutable evidence that the person speaking has a “disorder” and that the people being spoken of are “normal.” All too often, family, friends, teachers, and professionals look at the autistic person, shake their heads, and say, “Poor thing. He’s so impaired. He just doesn’t understand us.”

Could the arbitrary nature of privilege be any clearer when one set of people has “understanding” when they don’t understand, and the other set of people is “impaired” when they don’t understand? Maybe it’s that I’m autistic, or a born democrat, or hopelessly addicted to fairness, but I find this kind of imbalance deeply disturbing and painfully unjust.

So what do I do when I meet the puzzle metaphor? Well, obviously, I write about it. And yet, the best response to it I’ve seen is a photo on the blog of my friend Elesia Ashkenazy. I’ve taken her lead and created a sign of my own:


















If you want one, send me a photo by email and tell me what colors you’d like for the top and bottom, and I’ll make you your own sign. And if you’re comfortable with my publishing it on my blog, let me know. I’d love to have a post filled with signs like this, but only if people are comfortable with their faces being out there for the world to see. I do not “out” people, and I never will.

© 2010 by Rachel Cohen-Rottenberg

18 comments

Visual Hearing and Self-Advocacy

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

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

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

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

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

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

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

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

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

This test was very difficult because I couldn’t hear the words clearly enough to form a picture in my mind. I’m unable to hear soft consonant sounds like “p” or “th”; they’re at a frequency that my ears don’t pick up. (Later in the assessment, the audiologist ran a test that showed that the cilia in my left ear, which should be picking up these frequencies, are inactive. I believe she referred to them as “dead.”) Any sound at this frequency drops out at the end of a word. When words come at me slowly, I can usually run through the list of possible meanings in my mind’s eye, but when the words come at me quickly, the sense of the sound fading away is especially acute, and my ability to see the words in my mind breaks down. For instance, for the word stop, I was hearing sto-. For all I knew, the word could have been stop, stock, or stall. When I couldn’t see the word in my mind, I became very frustrated with the process, which probably accounts for why I become overwhelmed when people around me are talking too quickly.

Auditory Patterning
The auditory patterning test measures how well the subject can hear and replicate relative pitch. The audiologist played a series of three sounds, and asked me to tell her whether the pattern was “low-low-high,” “high-high-low,” and so on. I took this test twice. The first time, I used my hand to replicate each sound. If the pattern was “low-low-high,” I moved my hand twice on the same plane before moving it up once. By doing this, I was able to see the sound visually and give the answer. When the test was over, I told the audiologist about the method I’d used, and she said, “Okay. We’re going to do the test again. This time, sit on your hands!”

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

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

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

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

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

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

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

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

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

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

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

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

© 2010 by Rachel Cohen-Rottenberg

13 comments

Am I More Than My Autism? I Refuse to Answer the Question

August 15, 2010 Rachel Ableism, Diagnosis, Mainstream Theories of Autism, Marginalization

I’ve recently read two articles in which mothers of autistic children wrote that their children are “more than their autism.” Something about this assertion has been bothering me, and I want to explore why.

When I read the first article, I thought I’d entirely put my finger on the problem. The writer, a non-autistic mother of two autistic boys, had only negative things to say about autism, and it seemed clear to me that she was saying that her children were more than a collection of negatives. Because I consider autism a condition with both positive and negative aspects (like every other condition in life), I attempted to argue with her on that basis. I didn’t get very far, mainly because the writer kept asserting that her children were human beings, not just autistic human beings, which pretty much ended the discussion. After all, who is going to argue with the inherent humanity of any person? I didn’t see anywhere to go, even though something still felt very wrong to me.

Then, I read another article, this time by someone on the spectrum who has two children on the spectrum. She, too, asserted that her children are “more than their autism.” Like me, she sees both the positive and negative aspects of autism, and so I had a much easier time reading and thinking about what she had to say. And yet, the assertion still bothered me. To try to get at why, I decided to apply the question to myself: Am I more than my autism?

That’s when I began to understand the problem.

The term autism is itself very problematic. I agree with Amanda Baggs when she says that there is no such thing as autism, and that there are only autistic people. I don’t feel that autism has an existence separate from me in any kind of quantifiable, objective way. In fact, I’m coming to feel that the word autism is simply a social construct. After all, if it’s all about behaviors, with some behaviors considered impairments, how can it not be a social construct? In some cultures, making eye contact, especially for long periods of time, is considered rude. In some cultures, it’s perfectly acceptable to rock back and forth on a regular basis. After all, observant Jews pray three times a day, and rocking back and forth constantly is part of the ritual. We’ve been doing it for centuries. And yes, some people find it very strange, but their experience of us is a cultural judgment, not evidence of an objective reality.

Even if you move toward describing autism in terms of subjective experience rather than externally verifiable behaviors, it’s still difficult to escape the social implications of what happens to our descriptions of our own experience. I can describe, for example, my inability to filter sound, my extreme sensitivity to the emotions of other people, my lack of guile, my visual acuity, and my hunger for color, texture, and pattern. And yet, if I take those together and make them part of the definition of something called autism, I’m moving them from the realm of autistic experience into the realm of a category—a category in which my experience can be broken down into a list, in which it can be medicalized, in which other people can become “experts.” That’s a realm that the culture constructs constantly and values excessively.

So the very idea of using the word autism as though it is separate from my personal, subjective, daily reality is very fraught.

But there is something more about the question Am I more than my autism? that is very troubling. Or perhaps it’s the expected answer that’s troubling—the expected answer being Yes, I am more than my autism. I am a human being. Autism is just a part of whom I am. This answer is very problematic, for a number of reasons, not the least of which is that it threatens to divide me up into component parts: part autistic, part Jewish, part female, part this, part that. I don’t feel like a series of component parts. Everything I am is completely me: I am autistic, Jewish, and female. If you split one of those things off, I wouldn’t be myself anymore. You can’t take away my Jewishness and think that you will recognize me. You can’t take away my being a woman and end up with a complete human being. And you can’t take away my being autistic and think that I will continue to exist, any more than you can take away all my veins and capillaries and arteries and think that my heart will continue to circulate blood throughout my body.

Even more important, though, is that my humanity is implicit in my being a woman, in my being Jewish, in my being autistic. After all, am I more than a woman? Is my husband more than a man? To say yes, we are both human beings, is to miss the point entirely. Being a woman automatically means that I am a human being. Being Jewish automatically means that I am a human being. Being autistic automatically means that I am a human being. Being female, and Jewish, and autistic, are not component parts of being human, nor is being human somehow above and beyond them. Being human saturates them. Being human is what makes being female, and Jewish, and autistic worth the effort.

And make no mistake: being a woman and being Jewish are not easy, any more than being autistic is easy. Being a woman and being Jewish are not entirely positive experiences, any more than being autistic is an entirely positive experience. For some reason, it’s easier to speak of the mixed experience of gender and ethnicity than the mixed experience of being autistic, at least in this day and age. No one but a misogynist would deny that being a woman is a wonderful experience in some times and places, and a horrendous one in others. No one but a dyed-in-the-wool anti-Semite would deny that being Jewish can be extremely joyous and extremely difficult, depending on circumstances, and often at the same time. But there are days in which I’m hard pressed to find anyone saying anything positive about being autistic, as though being autistic were in some other sort of category, as though the usual paradoxes of being human don’t apply.

Many, many people don’t really see being autistic as being fully human, and in that blindness lies the problematic basis of the original question. When people say that their children are more than their autism, I think what they’re reacting against (and rightly so) is the pernicious idea that somehow being autistic and being human are mutually exclusive. And yet, at the same time, they run the risk of playing into this idea by asserting that there is something more than being autistic, and that is to be human. Separating the categories autism and human does not always result in the two becoming mutually exclusive, but it sets up a dichotomy that can easily reinforce the prejudices of a great many people.

When you come down to it, perhaps what parents are really saying is that their children are more than the stigma of the word autism. They are more than a medical diagnosis. They are more than the cultural refusal to celebrate them. They are more than the daily reminders that there is a construct called “normal” in which life is supposed to be easy and they don’t fit.

I have no argument with any of that.

But I’m not going to answer the question Am I more than my autism? because I do not accept its premises or its implications.

I am an autistic person, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-autistic people do not. I am a woman, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that men do not. I am Jewish, and I’m deeply thankful for it, even though I struggle and find myself vulnerable in ways that non-Jewish people do not. I am thankful for my life, whether or not it’s painful, whether or not it’s easy, and whether or not it measures up to the dreams I once had for myself or that other people had for me.

A dream is only a starting place. Life is where the action is.

© 2010 by Rachel Cohen-Rottenberg

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My Memoir Reviewed at Life with Aspergers

August 14, 2010 Rachel My Books


I’m honored that Gavin Bollard, over at Life with Aspergers, has done a glowing and informative review of my book. You can find his piece here. And while you’re around, please spend some time reading his most excellent blog.

Thank you, Gavin!

© 2010 by Rachel Cohen-Rottenberg

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Prejudice, Interrupted

August 12, 2010 Rachel Ableism

I’ve decided to delete my Facebook account. I’m not just deactivating it, because it’s too easy to reactivate it in a moment of boredom or weakness. I’ve done the deactivation/reactivation cycle about a half dozen times this week, and I feel like I need a Facebook Anonymous meeting:

“Hi, I’m Rachel, and I can’t keep myself off Facebook.”

(Chorus of voices) “Hi, Rachel.”

“Hi. I’m going to my Higher Power on this, because my willpower is availing me not. It’s the same old story you’ve all heard: After a late evening foray onto Facebook, I think ‘Okay, I can’t take it anymore. I’m never doing this again.’ So I deactivate my account. Then, the next day, after I’ve slept off the whole soul-destroying experience, I think, ‘I can do Facebook. I am strong. I am invincible. I can reactivate it!’

I just can’t live like this anymore. (sniff) I need to let go. (sniff) Thank you for being here. (sniff sniff)”

(Chorus of voices) “Thanks, Rachel. Keep coming back! It works!”

So, that’s it. I’m going cold turkey. I’m deleting my Facebook account. You can do actually do that, you know. The Facebook Team doesn’t make it easy to find out how to leave “The Land of People Who Have Twelve Thousand Friends and You Only Have 89,” so I Googled “Deleting Facebook Account” and found this link. It works. You submit the deletion request, and if, by the grace of your Higher Power (however you choose to define it), you can keep yourself from reactivating your account for 14 days, said account is gone forever.

But don’t get the wrong idea from the title of this post. I’m not deleting my account because I think that the people who own and operate Facebook are bigots. I have no opinion on the matter, because I don’t know them from a hole in the ground. I’m deleting my account because too many people on Facebook express retrograde, mind-numbing prejudices about autism on a regular basis, and I just can’t stand it anymore. It’s like being on Usenet, except with commercials.

See, the problem with Facebook is the same problem we face in the age of AIDS. When you have sex with someone, you might think that you’re just having sex with that one person, but you’re actually having sex with everyone that person has ever slept with. On Facebook, you seem to be able to set up your privacy settings, choose your friends, and share tidbits about your life only with them, but in reality, all of your friends’ friends get to share with you. You get to read everything that the friends of your friends say in response to what your friends say, and some of the things that the friends of your friends say are well, let’s face it: complete garbage. In the past week alone, I’ve heard enough crazy-making prejudice about autism on Facebook to last me a lifetime.

To give you just one example of many: A friend of mine who works with autistic children and young adults mentioned that he’d spent the past several days in the company of people on the autism spectrum. The response?

One person said, “Story of my life. I feel your pain.”

What? Was that supposed to be funny? If someone had said, “I just spent the last several days with African-Americans” and had gotten the same response, more than one person would have been all over it. After all, people who are in touch with their humanity pretty much agree that it’s unacceptable to say something like that when it comes to race.

However, there is no such agreement when it comes to saying such things about autistic people, even to someone who works with autistic people, even though that person might, by some astronomically insignificant probability, have autistic friends on Facebook who might, by some astronomically insignificant probability, have feelings. Go figure.

And then there was the nice woman who mentioned that she worked with an autistic child and expressed her empathy for my friend’s (supposed) plight by saying of autism, “It’s a strange little condition.”

A strange little condition. That’s what I have. A strange little condition—a condition in which, by the by, I don’t know how to empathize, like this fine woman does. Okay dokey. If this woman worked with African Americans, I can’t imagine her saying that they have “strange little skin,” but apparently, it’s perfectly okay to say something like that about the very nature of an autistic human being.

Being an autistic human being who just can’t stand this kind of talk, I realized that I had to say something. So I quietly opined, “It’s only a strange condition if you don’t have it. For me, it’s perfectly normal.”

I thought that might quiet things down. But no. Someone else said, “But aren’t all of us on the spectrum?”

I couldn’t let that stand. I mean, I just couldn’t. So, I began, in an even tone, “Well, there is a neurological spectrum, and on that spectrum, some of us are on the autistic portion and some of us are not.”

I know, I know. It was like saying, “Well, you know, some of us have daddies who work in offices, and some of us have daddies who work on firetrucks” after someone has asserted that everyone’s daddy works on a firetruck. But, of course, that was hardly satisfying, because it didn’t really speak to the heart of the matter, so I decided to go for it: “And by the way, I thought [our friend] was talking about working with autistic people as a positive. I enjoy hanging out with autistic people. I also enjoy hanging out with non-autistic people—although they sometimes say negative things about autistic people when they don’t think that autistic people are listening, which is very troubling to this autistic person.”

Yeah, it was kind of an autistic thing to say. Someone else might not have bothered. But back in the day, before I knew I was autistic, it was just an ethical thing to say, and truth be told, it still is. I mean, how is it okay to say something like “Story of my life. I feel your pain” about hanging out with autistic people? Is it because we’re almost universally seen as a burden? A freak show? The walking weird? Why is that kind of statement considered acceptable? It was like hearing a “Jew joke” when the people involved couldn’t tell I was Jewish, except that no collective gasp went up from anyone else involved.

This kind of thing is simply prejudice, as defined by such unimpeachable sources as the Merriam-Webster dictionary:

a (1) : preconceived judgment or opinion (2) : an adverse opinion or leaning formed without just grounds or before sufficient knowledge b : an instance of such judgment or opinion c : an irrational attitude of hostility directed against an individual, a group, a race, or their supposed characteristics

And what are our supposed characteristics, on which we are judged, and laughed at, and stigmatized, and discredited, and dismissed, to the point that lots and lots of autistic people stay closeted for fear of losing their jobs, and their friends, and whatever level of acceptance they’ve managed to acquire from the world in which they live? Here’s the short list:

Rude
Lacking in empathy
Self-centered
Abnormal
Burdensome
Bizarre
Impaired
Disordered
Not quite human

I suppose if you think those things about an entire group of people, it’s perfectly okay to say just about anything about them. And then, of course, if someone from that group of people gets angry about it—well, it’s just further evidence that they’re just who you say they are, because after all, why should someone get so pissed off at an offhand comment, and be so blunt about expressing it, and not realize that she shouldn’t take things so seriously, because there was no ill intent, don’t you know?

I have only one answer to that: It’s because we’re perfectly human. I’m not sure how many people would believe me. After all, I’m autistic, and thus, discredited before I even open my mouth. But hey, that’s not going to stop me. Not anymore. I’m not going to step into a cesspool of this kind of bigotry if I can help it, but when I meet up with it, I’m going to interrupt it. I’m not going to give it a place to stand. I’m not going to be quiet. Not again. Not anymore. I’m done standing there, feeling sucker punched, with tears in my eyes, saying nothing.

The world deserves better of me. I deserve better of myself.

So I will continue to fight anti-autistic prejudice, but not on Facebook, which I only joined to keep up with friends, and where serious, considered, constructive discussion is virtually impossible. I can keep up with friends in other ways, and I have other venues for fighting the good fight—venues that are far more positive for me and far more constructive for others.

© 2010 by Rachel Cohen-Rottenberg

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Disabilism and the Demonization of Autistic Children

August 5, 2010 Rachel Ableism

This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.  
                                                                                —Jim Sinclair, Don’t Mourn For Us

Most of you have heard about the case of Saiqa Akhter, the woman in Texas who allegedly murdered her two autistic children, Zain (age 5) and Faryaal (age 2). In her 911 call, she described trying to force them to drink bathroom cleaner and, when they refused to swallow it, strangling them with a length of wire. Zain died later that day; Faryaal was placed on life support and died the following evening. In explaining why she had killed her children, she said “Both are autistic. I don’t want my kids to be like that. I want normal kids.”

The deaths of these two children are a tremendous loss, but you’d hardly know it to read the responses of “autism experts,” who spend more time bemoaning the stress on the mother than the horrific nature of her actions. For example, Marguerite Colston, vice president of constituent relations at the Autism Society of America, told ABCNews.com, “That a family got to that point of stress is unfortunately not uncommon…The stress levels on parents [of autistic children] are extraordinarily high,” she said, noting that one study found that “stress levels were comparable to combat soldiers…You’re now a case manager and a specialist, and it’s almost like you’re not a parent anymore.”

This kind of statement blames the victim. I will not argue the fact that the stress of raising an autistic child can be extreme. What I will argue against is the idea that an autistic child creates stress that somehow explains the taking of that child’s life. I’m troubled by the fact that people look for “extenuating circumstances” when an autistic child is killed, but rarely when a non-autistic (or otherwise non-disabled) child is killed. In the latter cases, most of the time, the mother is painted as a monster, and there is no attempt to explain her actions at all.

Take the case of Susan Smith, who killed her two (apparently typical) children in 1994 by strapping them into their car seats and sending her car into a lake. I can’t remember a single “expert” saying that her being a single parent, or being involved in a sexual relationship with her stepfather, or having a history of depression, explained her actions. The single parenthood, incestuous relationship, and mental health issues were almost universally seen as moral failings on her part, aspects of her life that she could have changed and overcome by an act of moral courage and sheer force of will. She was condemned for what she did, and that was the end of the story.

Nor can I recall a case in which a minority woman killed her children and an expert attempted to explain it, with a straight face and on the national news, as the logical outcome of circumstances such as isolation, racism, a family history of abuse, urban violence, and poverty. These are circumstances that mirror battleground conditions far more acutely, and for far more people on the planet, than the stress of raising an autistic child and yet, the outcry against using the “race card” would be immediate were anyone to try to use these circumstances to explain killing one’s children. And rightly so. So why is there so little outcry against people using the “autistic card” to explain the deaths of two innocent disabled children?

Could it be that so few people see autistic children as “innocent”? Could it be that autistic children are stigmatized with words like “unemotional,” “lacking in empathy,” and “inhuman,” language that makes it nearly impossible to see the children as the actual living, breathing, whole human beings they are?

Equally troubling is the fact that so many people seem willing to ascribe the killing of the children to the mental illness of a lone individual, rather than to the social and cultural messages acted out by that individual. In responding to the deaths of Zain and Faryaal Akhter, Dr. John Lutzker, director of the Center for Healthy Development at Georgia State University, said that raising autistic children can result in mental health issues for parents: “Parents who have children with autism have disproportionate stress and depression compared with the general population,” he said. “It seems like this woman may have some other issues that went undetected.”

While I can’t pretend to know what went on in the mind of a mother who slowly killed her children by strangling them with a piece of wire, there are many other possible explanations for her behavior besides mental illness, explanations that have everything to do with the underlying messages of the society at large—a belief that her children weren’t whole people, a sense of entitlement to a “normal” life, a lack of empathy for her children’s acute experience of the world, and a general sense that life had cheated her by not fulfilling her dreams. I’m troubled to read so many people say that she must have been insane when there are very deep-seated, widely accepted social beliefs implied by her words. I suspect that it’s easier to think that the individual must be insane than to look at society’s beliefs about the worth of autistic people, how dangerous those beliefs are, and how deeply they are entrenched in the minds of so many people.

With all the concern for the difficulties of the mother, where is the concern for the difficulties of the children? Where is the empathy for their acute experience of the world? Why does no one say that there are rational, explicable, understandable reasons for their behavior—reasons that put the burden on their mother to protect them every day of their lives? Where are the voices explaining the struggles of autistic children everywhere?

By her own admission, Saiqa Akhter killed Zain and Faryaal because she wanted “normal” children. She killed them because they were autistic. She killed them because she didn’t want the children life had given her. Far from simply being the actions of a lone and troubled individual, her decision to end the lives of her children speaks volumes about how our society sees people who are different from a mythical “norm.” In fact, it speaks volumes about the very power of the word “normal” and its insidious impact upon all of our lives.

© 2010 by Rachel Cohen-Rottenberg

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