Journeys with Autism

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. So here’s a running list of the things I was struggling with before and can now do:

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, 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, 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 making sure the bills get paid and that there is sufficient money in our accounts. Bob keeps track of the household finances in Quicken, and I’m going to leave that to him. Were it up to me, I’d keep track of the household finances using check registers and a series of running lists (which have always worked fine for me), but Bob is keen on using Quicken. So I’ll be communicating all the financial information to him, and he will enter it into the program and make sure it’s up to date.

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, mind you, 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 really 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. And it happened.

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 under my control now. 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

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

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

At the same time that I was spinning my wheels with previous prescribers, Bob and I were working together to find a new doctor. While we thought that starting out with a clean slate would make the situation easier, we were wrong. In fact, we exited the world of the maddening only to wander into the realm of the absurd.

June 3, 2010
Bob called Another Local Family Practice. Carla, the receptionist, said that the practice was accepting new patients and offered to give me an appointment with NP Charles on June 14 at 11:20 am. All I needed to do was to confirm the appointment. When Bob explained my communication needs, Carla said that they would supply an interpreter. When Bob explained that I don’t sign, Carla said that I could write notes back and forth with a provider.

Initially, I felt optimistic. Fool that I am, I always feel optimistic when people say the things I need to hear. As the day wore on, however, my optimism began to wane.

I installed TTY software on my computer in the late morning and called Another Local Family Practice using the TTY relay service. After a few technical glitches, I was able to reach Carla. I told her that because of my medication needs, it might be more appropriate for me to see a doctor than a nurse practitioner. Carla then gave me an appointment to see Dr. Mary. She asked me the name of my present doctor, and asked that I get the records transferred to them.

When I explained the situation with Dr. Fred and that I had requested that the records be sent directly to me, the situation began to change. Carla that Dr. Mary could not see me until the office received my medical records and she could look at my treatment history. She suggested that I try to expedite the situation by going to Dr. Fred’s office and getting the records in person.

Here are the relevant parts of the conversation from the TTY transcript of the call:

Me: You suggested that I make an appointment with NP Charles on June 14 at 11:20. I’m not sure he’s the right person, though, because I have some serious medication issues I’m dealing with and don’t know whether he’d be able to write prescriptions, guide me on this, etc.

Carla: ok in that case why dont u let me schedule u with Dr. Mary, she can see u on Wed the 16th at 10:15.

Me: Would she have any later appointment that day? I can do 10:15 but later would be better.

Carla: can u do 1:30?

Me: Yes, that would be perfect!

…………………………

Carla: Ok Rachel umm tell me who was ur Dr. before​​?

Me: My previous doctor was Dr. Fred….I no longer go to that practice. I asked for them to communicate by email because of my disabilities, and the next day they sent me a letter discharging me from the practice (with no reason stated)…. They know that I’m weaning off Loraz and yet they will not communicate in a way that works for me, so I am in a very bad situation…
…………………………

Carla: ok Rachel umm the big thing is right now is to get ur records…from Dr. Fred’s office…why dont u get a hold of them and see if u can come pick them up and bring
them over here, what I will do is get a message to Dr. Mary, letting her know they are coming and get u on her schedule asap…Dr. Mary will need to see them before she can see you so she knows the course of your situation.

Me: If you can get the situation expedited that would be great. I can’t stress enough what a terrible situation I’m in. I’m withdrawing from medication without a safety net here.

Carla: ok rachel ill do what I can….

Given that Dr. Mary now had to get me “on her schedule,” I began to wonder whether I still had an appointment at all.

Later, Bob called to ask, and Carla said that no, I couldn’t have an appointment until they received my records. At this point, the reason for the delay had changed: I couldn’t have an appointment because they wouldn’t know which doctor to assign me. So, first I had an appointment, but after I told them about the situation with Dr. Fred, I got two different stories:

a) I could not have an appointment yet, because Dr. Mary didn’t have my full medical history.

b) I could not have an appointment yet, because without my full medical history, they wouldn’t know what doctor to assign me.

These contradictions didn’t feel right. After my experience with Dr. Fred’s office, my trust was low, and I had the uneasy feeling that something was awry. It was becoming harder and harder to trust people to treat me well. I felt very, very alone.

June 4, 2010
Bob went to Dr. Fred’s office to request my medical records. At first, he was told that we could have the copies in two weeks. When he told the receptionist that I needed them much sooner, she told him to call the office manager after 3 pm. He did so, and the office manager promised to copy the records over the weekend and have them ready by Monday morning.

June 5, 2010
I got a patient registration form and a medical history form from the website of Another Local Family Practice, printed them out, and filled them out carefully and completely.

June 7, 2010
Bob picked up my medical records from Dr. Fred’s office.

June 8, 2010
Bob dropped off my medical records, patient registration form, and medical history form at Another Local Family Practice, but he was unable to make an appointment for me. The receptionist said that Laura, the person in charge, would decide “what to do.” She would be back tomorrow and would call him then.

Neither Bob nor I understood the meaning of “what to do.” I was hoping against hope that they were just deciding on the right doctor, and not deciding whether or not they wanted to treat me, but I knew that the story was changing yet again, and that did not feel good.

By this point, my worry and my sense of powerlessness were crushing. Bob was fighting the good fight by phone. I was at the point of exhaustion. Being refused by one doctor after another was increasing my sense of isolation, and my withdrawal symptoms were worsening. By this point, they included anxiety, depression, moodiness, sadness, anger, crying in the middle of each day, physical pain, and continuing insomnia.

June 9, 2010
Another Local Family Practice had my medical file, my insurance information, and my entire health history, and they still wouldn’t give me an appointment. Laura told Bob that it was up to Dr. Mary whether she would accept me as a patient, and that Laura would call back tomorrow with her decision. When Bob pointed out that, just last week, Carla had told him that the office was accepting new patients and that they had given me an appointment with Dr. Mary, the story changed again: Laura said that the office is accepting patients only on a very limited basis and that the decision to give me an appointment belonged to the doctor.

Just in case you’re having trouble keeping track of all the ways in which the story changed, here’s a recap:

1. The office was accepting new patients and the receptionist gave me an appointment with Dr. Mary.
2. I could not have an appointment with Dr. Mary until she saw my medical chart.
3. I could not have an appointment with anyone until someone saw my medical chart and decided on the best doctor for me to see.
4. I could not have an appointment until Laura, the person in charge, decided “what to do.”
5. It was the doctor, not Laura, who would decide what to do.
6. The practice was accepting patients only on a very limited basis and only the doctor could decide whether I could have an appointment.

At this point, I was beginning to wonder why I had to beg a doctor to see me, especially with a disability, and especially in the midst of a medication withdrawal. The situation was becoming unbearable, and I was at the point of despair.

June 10, 2010
Still no decision from Another Local Family Practice. Bob called at 2:30 pm and left a message for Laura. She never called back.

June 11, 2010
At 8:36 am EDT, the other shoe finally dropped. Laura left the following message on Bob’s voicemail:

“Hi, this is Laura from Another Local Family Practice. I’m just calling to let you know that the doctor does not want to take on a new patient at this time, um…so, unfortunately, we won’t be able to accommodate you. We’ll leave your medical records so that you can pick them up…um…at the front desk…um…uh…Thank you. Bye Bye.”

Yes, the woman used the word “accommodate” (as in “won’t be able to”) with reference to a disabled person. Bob called the practice four times, and left a message for Laura each time, asking what was going on and why I had not been accepted as a patient. She ducked all of his messages and never called us back.

I was beyond scared. I could hardly see straight. I went over my taper schedule with Bob, and I began to panic when I realized that as I got down to lower doses, I might have to slow down, and might run out of medication, and might not have a doctor to help me. I couldn’t figure out how to get anyone to hear the seriousness of the situation, even though my very personable and persuasive husband was doing a very good job of stating my case.

I had never been so terrified.

Fortunately, on Sunday, June 13, Bob called another doctor—the wife of one of his colleagues. He had called just to ask for advice on how to navigate the labyrinth of locating a new provider, but when she heard what had happened, she gave me an appointment for Thursday (even though she was not officially seeing new patients). I went to the appointment, and she was great. She completely supports my tapering process, and we now have a couple of follow-up appointments.

The only drawback? Dr. Fred is the on-call person when she is unavailable. I was very depressed to hear this news, but Bob pointed out the irony: The man discharged me from his own practice, but if I call my new doctor and I need assistance, he has to provide it. It’s unlikely that the situation will transpire, but the irony is rather just.

© 2010 by Rachel Cohen-Rottenberg

Although I was in shock over being discharged as a patient, I knew that I had to find another doctor to help me through the taper. So, I decided to go to the doctors who had originally prescribed Lorazepam for me. I figured that since they’d facilitated my unwitting dependence on the drug, they’d be willing to facilitate my conscious taper off it.

Guess what happened?

Well, one prescriber said that although he does prescribe Lorazepam, he does not feel qualified to help someone wean off Lorazepam, and that if I were still his patient, he would send me elsewhere for help. When Bob told him that I had thoroughly researched the tapering process, and that all I needed was someone to prescribe for me and keep an eye on things, the doctor said that the medication is too powerful and the withdrawal too complex for him to handle. End of story.

Yes, you heard that correctly. This doctor will prescribe a benzodiazepine without a clue in the world about how to help you stop taking it. And even when you tell him that you know all about how to wean off it, he will still not touch your withdrawal process with a ten-foot prescription pad.

Well, at least that got settled quickly.

Not so with Dr. Geraldine, another of my previous prescribers.

On Friday, May 28, the day I received the discharge letter from my doctor, I sent Dr. Geraldine an email briefly describing my situation, asking whether she would be willing to help me wean off Lorazepam, and requesting that she prescribe Silenor for insomnia. Because it was the beginning of a holiday weekend, I knew that I probably would not hear from her for a little while. In fact, I received an auto-reply message informing me that she’d be back in the office mid-week. Here’s how it went from there.

June 1, 2010
By Tuesday, June 1, I was in such a state of misery that I sent Dr. Geraldine another email, with the subject header Help!, in which I included the following plea for assistance:

Dear Dr. Geraldine,

Thank you,
RachelJune 3, 2010
On Thursday, June 3, I received an email from Dr. Geraldine that began with the following sentence:

l understand that face to face contact is not your preferred form of communication, but please understand that insurance companies require this and do not reimburse for care provided by e-mail.

Apparently, insurance companies don’t reimburse for compassion communicated by email either, because the first sentence set the tone for the entire message. Despite her tone, however, Dr. Geraldine was willing to see me, which was clearly what I needed. And yet, I felt hesitant. Something else bothered me about the opening sentence, and it took me awhile to understand what it was. Ultimately, struggling with Dr. Geraldine’s words helped me understand aspects of myself that I’d never fully grasped before.

As I considered the doctor’s assumption that face-to-face contact is not my preferred form of communication, I realized that Dr. Geraldine was quite wrong. Face-to-face contact is, in fact, my preferred form of communication. I like human beings very much, and I want to be able to spend time with them. The problem is that, with only a few exceptions, most people overwhelm my neurological system: their social expectations overwhelm me, their speech overwhelms me, their verbal pace overwhelms me, their emotional energy overwhelms me, their constant flood of nonverbals that I can’t parse overwhelms me, their indirectness overwhelms me, and their lack of understanding that they overwhelm me overwhelms me. So, I default to other ways of communicating (like email), but that doesn’t mean that I prefer these other ways of communicating. I like email, I like blogging, and I like my online friends, but I would love nothing better than to have face-to-face contact with each and every one of you.

The more I considered the whole issue of communication, the more I realized that not only are talking and hearing very difficult, frustrating, and fatiguing for me now, but they have been so my whole life. The difficulty, frustration, and fatigue have all constituted such a normal, everyday state of being for as long as I can remember that I’d never been able to see them for what they were. For most of my life, I’d pushed myself to talk (and talk, and talk), wondering why the whole process of conversing left me so completely wound up and undone, but never entertaining the idea that I could just stop. For a long time, I didn’t stop, for a number of reasons, the chief one being that talking is the way that most people communicate, and I didn’t think I had any other choice.

Sometimes, talking and hearing work: with certain people, on certain days, in certain situations, when an unpredictable number of factors in the world out there work in relative harmony with my current neurological state, the difficulties are manageable and do not leave me in pain. But all too often, with certain people, on certain days, in certain situations, when an unpredictable number of factors work completely against what is going on inside me, the difficulties are not manageable and the cost is very, very high.

However, I’m now realizing that I don’t have to talk and hear in order to communicate. In looking at alternatives, I’ve been rather amazed to find that they are not limited to email. In fact, I’ve discovered that different kinds of assistive technology give me the option of having face-to-face, in-person communication without talking or hearing. With this new understanding in mind, I responded to Dr. Geraldine and suggested some new possibilities:

Dr. Geraldine,

All the best,
RachelJune 4, 2010
Here is an abridged version of Dr. Geraldine’s reply:

I’m afraid such technology is not available here…. I am happy to keep conversations as brief as possible in order to avoid excessive stimulation. If unable to meet with me further, I believe there is a clinic in Easthampton, MA that specializes in autism disorder: www.communityresourcesforautism.org.
Please let me know what you decide.

One of the most upsetting things about this email is that Dr. Geraldine did not offer to discuss how we might work together to obtain assistive technology. Nor did she direct me to someone local (or even in the state of Vermont) for assistance. Instead, she ended her email by suggesting that I segregate myself from a place of public accommodation in my own community by going to a clinic that “specializes in autism disorder” in another state.

In fact, the clinic she referred to does not exist. The website that she specified belongs to a general autism support and referral agency in Massachusetts.

June 5, 2010
As you might have guessed, I was starting to get frustrated with Dr. Geraldine’s attempts to unilaterally define what I need. She offered to keep “conversations as brief as possible in order to avoid excessive stimulation,” but she didn’t acknowledge that her idea of “brief” might be my idea of “painful,” and that “excessive stimulation” does not even begin to describe my difficulties. In short, she didn’t demonstrate a willingness to meet me where I am and honor my understanding of my own experience. And so, in my response to Dr. Geraldine’s email, I continued to make my needs clear:

Dr. Geraldine,

RachelI did not hear from Dr. Geraldine again.

Next in this series: Part 3, When the Story Keeps Changing

© 2010 by Rachel Cohen-Rottenberg

I’ve been keeping track of the whole process I’ve gone through since first contacting my primary care doctor about weaning off my medication. Here are portions of notes, letters, voicemails, and emails that describe what happened during the very eventful and not-so-merry month of May.

May 4, 2010: Writing in advance of my appointment with my doctor
Dr. Fred became aware of my Asperger’s diagnosis shortly after I received it in November of 2008. My medical file also contained my full sensory assessment from January of 2009, and a letter in which I discussed the challenges of my autism with regard to a medical procedure that he wanted me to undergo. On May 4, I wrote another letter, this time in preparation for an appointment to discuss weaning off Lorazepam. Although I had been taking 2 mg/day of Lorazepam in the late winter, I was currently on a stabilization dose of 1.5 mg/day after attempting a near-cold-turkey withdrawal. In the letter, I described the impact of my withdrawal attempt, and I provided detailed information about benzodiazepines, how to do a Lorazepam-to-Diazepam crossover, and why. I also explicitly mentioned the potentially life-threatening consequences of a cold-turkey withdrawal or improper taper.

May 13, 2010: My appointment with my doctor
By the time I saw Dr. Fred for my May 13 appointment, I had changed my mind about doing a Lorazepam-to-Diazepam crossover. I had learned that I could safely do a direct taper using liquid Lorazepam, with the option of switching to Diazepam if it didn’t work. At my appointment, I gave Dr. Fred written information about using the liquid form of the medication. Bob was present at the appointment and helped communicate my needs to the doctor.

During the appointment, Dr. Fred stated that he was supportive of my original plan. When I gave him the information about the direct Lorazepam taper, he read it and asked me a number of questions about it. He then said that he would support this method as well, and that he was going to have to do some research about how the weaning schedule and dosages would work so that I could taper off safely.

We spoke about my concerns regarding the taper, especially my worry that I might experience a high degree of insomnia at some point during the process. I told him that being insomniatic was my greatest fear. When I spoke of my parents having consciously deprived me of sleep as a child, the doctor likened it to torture. Torture was the word he used. He understood why I was so traumatized regarding sleep, and we agreed that the goal was not necessarily for me to become entirely medication-free, but to wean off Lorazepam and still have relief from insomnia.

He also understood that my anxiety and depression tend to lift when I have deep, restful sleep. He assured me that he would not let me get anywhere near the point of being awake for days on end, and he said that he would prescribe anti-insomnia medication if that were my only alternative. I mentioned Silenor, a non-addictive anti-insomnia medication that had just come on the market. He said he’d never heard of it, but he wrote it down as an option for me. I said that I would do some research on it and see whether I thought it would work for me. I assumed that he would do the same.

From everything Dr. Fred said, it was apparent to both Bob and me that he understood the seriousness of my medication withdrawal, of my history of insomnia, and of my trauma issues. Talking to Dr. Fred during the appointment had been exhausting, but I left feeling that I had my doctor’s support. He told me that he wanted me to stay in regular contact with him during the Lorazepam taper so that he knew it was going safely for me. He also suggested that I make a follow-up appointment with him, and I made one for June 24.

May 24, 2010: Potential insomnia and my first request for email communication
As I thought about Dr. Fred’s concern that we stay in regular contact during the Lorazepam taper, I realized that I needed to request some way to communicate other than using the telephone. I no longer use the telephone because, cognitively speaking, I’m confused and exhausted by the whole experience, and my auditory processing system screams No! every time I even think about it.

So, I wrote a letter to Dr. Fred, which my husband hand-delivered to his office the same day. My letter covered the following two topics:

a) I requested a prescription for Silenor to have on hand during the Lorazepam taper in case the insomnia hit sooner rather than later.

b) I requested that if the office had email, I be able to use it for the purpose of making appointments, requesting prescription refills, contacting the doctor with questions, and so forth. I let Dr. Fred know that I had severe difficulties with using the phone, and that my medical care would improve if I had direct access to the office and could explain my own experience, without constantly using my husband as an intermediary. I asked Dr. Fred to respond by email (if he had email) or by leaving a message with my husband (if he didn’t have email). I supplied my email address in the letter.

When I wrote the letter, I figured that if Dr. Fred had Internet access in the office, it wouldn’t be a big deal to set up a free Yahoo or Gmail account so that I could reach him. If he didn’t have Internet access at all, I didn’t see any other choice at that moment than to have him send a message through my husband.

May 25, 2010: My doctor’s voicemail messages
Dr. Fred responded to my letter by calling my husband’s cell phone and leaving two voicemail messages. Here are the relevant portions:

Voicemail #1: Hi Bob. It’s Dr. Fred calling back. I just got a letter from Rachel and I was reading it. So…she talks about email and wanting to communicate that way. I know it’s rather stone age, but I don’t do emails with patients at this point. I’m going to ask if there’s any provision, if we have an office email that we might be able to use for that, but I will have to let you know about that part of it…Okay, and I’ll talk to you soon about the email. Thanks.

Voicemail #2: Hi Bob, Dr. Fred calling back…and again regarding the email: We do have an email address that Rachel can use. However, it is not checked regularly, and we have no other patients using it to communicate with us, so we do not check it on a regular basis. You know, in order to accommodate her request, she can write to us on it, but if she could also send a fax note or have you call or somehow call after hours and leave a message on our answering machine letting us know that yes, there’s an email there, we will check it. But it’s just not part of our routine to check on it, so she will need to give us an alert when she has something on the email for us to look at. All right, the address is ****, so again, she can use it, but again, the onus will be on her to alert us that there’s something for us to look at there. All right, thanks Bob, I hope that helps… Note that, at this point, Dr. Fred had my email address and declined to use it to communicate with me directly, even though I was the patient who had contacted him. Note that he also suggests that a) I use the phone when the point was not to use the phone, and b) I use my husband as an intermediary, when the point was to stop using my husband as an intermediary. His suggestion that I leave a message after hours meant that I would not have any access to him when he was actually in the office—something of a necessity in the middle of a medication withdrawal.

Wednesday, May 26: Real insomnia and my second request for email communication
I sent an email to Dr. Fred and, despite my complete opposition to the idea, had my husband call to alert him that it was there. In the email, I explained that the Lorazepam withdrawal process was speeding up because my body was becoming tolerant to the stabilization dose. I also let him know that I was already suffering from the effects of increasing insomnia, that my body desperately needed deep, restful sleep, and that I was attaching three pages of information about Silenor, for which I needed a prescription. I then took care to clarify my need for email communication:

Regarding using email…As I said in my letter, this is a disability and accessibility issue. I do not want to continue making Bob my intermediary to pick up messages or leave them for you, even if it’s just to inform you that I’ve sent an email. I’m capable of advocating for my own care given the right means of communication, and doing so is crucial to my sense of empowerment, my sense of dignity, and my sense of being a full and equal citizen. I do not have access to a land line or a fax machine, so I can’t signal you by fax that I’ve sent an email. And using the phone to call and let you know that I’ve sent an email really defeats the whole purpose, which is to stay off the phone! I know that to most people, it’s a small thing to call and leave a message on an answering machine, but it is not a small thing to me. It is very difficult and very stressful–rather in the same way that it would be difficult and stressful for a person in a wheelchair to drag themselves by the hands up a couple of steps and knock on the door to let you know they’re there.

All the best to you,
RachelMay 27, 2010: A letter from my doctor, sent by certified mail
On the day following my May 26 email message, Dr. Fred sent me a letter by certified mail. The letter was mailed exactly two weeks to the day that Dr. Fred had promised to stay in regular contact with me during my Lorazepam taper, to make sure that it was going safely, and to not let me get to the point of protracted insomnia:

Dear Mrs. Cohen-Rottenberg:

Yours sincerely,
Dr. Fred and His Office My husband, who had been a patient at the same practice for exactly the same amount of time I had, did not receive a discharge letter. My husband has since discharged himself from Dr. Fred’s care.

May 28, 2010: My receipt of the letter from my doctor
I received Dr. Fred’s letter on May 28, and when I read it, I felt like I’d been kicked in the head. By a doctor. In the middle of a medication withdrawal. From a drug he had prescribed. And did I mention I’d been sleeping badly? I’d been sleeping badly. It probably won’t surprise you to hear that both my sleep and my withdrawal symptoms got much worse very quickly. When I first received the letter, though, I just cried and cried and cried. I was shaking, terrified, and in shock.

Thoughts on patients’ rights and who makes the rules
From what I understand, guidance provided by the Vermont Board of Medical Practice stipulates that physicians give 30 days’ notice of termination and provide only emergency care during that time. There are no U.S. state or federal laws that require a physician to provide a reason for discharging a patient, nor is any physician required to continue a course of treatment, so long as the physician terminates the doctor-patient relationship “properly” (and in Vermont, “properly” appears to mean giving 30 days’ notice and 30 days of emergency care). In other words, being a patient in a doctor’s office is rather like engaging in at-will employment: there is no implied contract and the relationship can be terminated at any time. I’m not sure where the Hippocratic oath fits in here, but all this is news to me, and the news comes at a very bad moment.

In my opinion, only a typically abled person would think that 30 days is sufficient time in which to find a new primary care doctor. In fact, I think that such a typically abled person would probably also be living in a place in which there are many available doctors. In other words, I’d bet a bottle full of nickels that the Vermont Board of Medical Practice consists of typically abled people living in places with ready access to healthcare.

Unfortunately, I live in a small rural town in which most doctors’ practices are full. I also have communicative, cognitive, and auditory disabilities that keep me from being able to call one doctor after another, and I’m also in the middle of an exhausting medication withdrawal, which means that my stamina is very low. I am extremely fortunate to have my husband to help me, because without him, I don’t know how I’d even begin to find a doctor in 30 days. Even with his help, the process has been almost unbearably frustrating and painful.

Next in this series: Part 2, Turning to Previous Prescribers for Help

© 2010 by Rachel Cohen-Rottenberg

Since late May, I’ve been in the midst of one of the most painful and frightening crises of my life. I haven’t been sure how to write about it, or even how to begin framing it. At first, all I could see was my personal disaster, but as I’ve begun to plumb the depths of it, I’ve begun to realize that what is happening to me could happen to anyone. Because of my disabilities, I am more vulnerable than the average person, and I find these waters more difficult to navigate, but no human being on the planet should ever have to go through this situation.

On May 27, I was discharged, with 30 days’ notice and no explanation, from the practice of my primary care doctor. I therefore find myself in the midst of what should be a supervised taper, of six to twelve months’ duration, from a highly addictive medication, without anyone to prescribe for me. Lorazepam, the medication in question, is considered a controlled substance, and the maximum quantity a mail-order pharmacy can send is a three-month supply with no refills. So, I need a doctor to keep writing scripts on a regular basis or I will run out of medication before the end of my taper.

The results of running out of the medication before the taper is over can be devastating. As I’ve mentioned previously, a cold-turkey withdrawal or an improper taper can cause seizures, psychosis, acute suicidal ideation, and death. While people have been known to withdraw cold-turkey from benzodiazepines without this impact, the risks to life and health are very real, and even in the best case scenario, the experience of a sudden withdrawal is simply hell. Those who understand these medications do not support jumping off them suddenly any more than they would suggest jumping out a window and hoping for the best.

Fortunately, I have an appointment to see a new doctor this Thursday, and hopefully, she will take me on as a patient and see me through this process. Bob spoke with her yesterday, and she seemed quite concerned and willing to help. I am trying very hard to trust that everything will work out, but my faith in doctors has been shattered, and it will take a very long time to be repaired. I say this not only because of the actions of the original doctor, but also because the search for a new doctor has gone very, very badly. In fact, the action (and inaction) of potential new doctors has been causing me more pain, more fear, and more misery than the actual taper—and if you’ve ever been through a direct Lorazepam taper, you’ll know that’s saying something. (Most people don’t even attempt a direct taper. They cross over to Valium instead and taper from there, or they just stay on Lorazepam endlessly because it’s so unbearably difficult to withdraw from.)

I have decided to write about this situation because I want people to know what has happened to me, a real flesh-and-blood person: Rachel Cohen-Rottenberg, age 52, wife, mother, friend, neighbor, writer, singer, artist, photographer, and living human being. Right now, I am a human being living with so much fear and uncertainty that one of the only things powering me forward is the fact that I can still write and that I can still speak my truth. As long as I draw breath, no one can take those away. Those are mine, they are inviolable, and they might even do some good.

Although the current crisis has devolved only since late May, it will take a number of posts to explain it and all the issues that it raises. I will not be using these posts to engage in speculation concerning why the doctors in question have chosen to act in a particular way. I will only describe the facts: what people have done and what they have failed to do. I will simply tell the truth about what has happened, how I feel about it, and how it is affecting my life. The facts are far more powerful than any speculation.

Moreover, I will not disclose any names except my own. In fact, I will do everything I can to shield the identities of the people involved by randomly mixing and modifying their genders, titles, and any other information concerning them. I don’t have to do so, because everything I say is the truth and I have documentation of all that has occurred. However, despite my pain, my fear, and my outrage, I want good to come out of this mess, not harm. My long-term aims are to be consistently included in the kinds of services these professionals provide (although I do not wish to be treated by the particular people in question ever again), and to help make these services available to others who find themselves in a predicament similar to mine.

Of course, any action I take to remedy the larger situation will have to wait. At the moment, I have to make the quality of my life and my health the first priority.

Please send out your prayers, good thoughts, and fierce hope that the new doctor will help me through the current situation.

© 2010 by Rachel Cohen-Rottenberg

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

What This Post Is Not About: This post is not about healing autism or any of the expressions or manifestations of autism. Autism is not a disease or a disorder. If you interested in healing or curing autism, you are so on the wrong blog.

What This Post Is About: This post is about the fact that I have finally figured out that there is absolutely nothing wrong with me, and that I need to begin healing from my relationship with a mental health establishment and pharmaceutical industry that are doing me far more harm than good. I say this not as an anti-medical zealot, and I am certainly not telling anyone else what to do. I am speaking solely for myself, as an autistic individual who realizes that the system is all upside-down and backwards regarding what I need.

As many of you might have gathered, the past month or so has been very difficult for me. One of the triggers has been that I’ve inadvertently overcome (for the moment) my lifelong use of food as a means of sensory and emotional self-regulation. In other words, I’ve gone cold-turkey off my food addiction. Here’s how the current round began:

A few weeks back, I mentioned to the doctor who manages my medications that I had had a killer migraine and that it had been the first time in years I hadn’t been able to knock out the earliest warning signs with Sumatriptan. When he asked how many times a week I was taking Sumatriptan, and I casually answered, “Oh, about three or four,” he said that I was actually getting three or four migraines a week. The fact that I was recognizing the early symptoms and intervening did not mean that I wasn’t getting them; it just meant that I was stopping the worst effects of them. So, he suggested a preventive, Topamax, which is also an anti-seizure medication. I was to start out with one tablet a week, and progress to two, and then to three. He warned me that one side effect would be appetite suppression.

Nearly three weeks later, I’ve lost seven pounds I didn’t need to lose. Until yesterday, I was in so much emotional pain that it was physically almost unbearable. Much of the emotional pain was the result of withdrawing, without warning, from the food addiction and experiencing all the emotions that came screaming out into the open. As of Monday, the worst of the withdrawal and its attendant demons seem to have past. Now, I’m left mainly with the physical impact of the medication, which is not having an exactly inspiring impact on my emotional state: I’m nauseous almost all the time, I have no appetite, I lose my balance several times a day, and I’m suffering from acute exhaustion.

On Monday, I went to see an alternative practitioner. Bob had spoken highly of her, and I thought, “Why not?” Just to get the negative out of the way first: She was a complete and total pain in the ass about autism. She kept saying things like, “You’re not autistic” and “You don’t have to use such a negative word about yourself.” And yes, she kept saying these things despite the fact that I consistently responded with sentences like “Autism is a very positive word for me.” She kept on at random intervals until I just about wanted to explode. (I didn’t. Score one more for the autistic kid!)

But what she got right was astonishing. Right away, she said that I have a lifelong issue with feeling radically unsafe, as though every millisecond of every day, some disaster will happen and I won’t be able to handle it. I had said nothing past a few pleasantries and “Where is your bathroom?” She just saw it. At one point, she tried to do some mind-body work with me and, when I started crying uncontrollably, she asked if I were on any medication. When I listed out my anti-depressant, anti-anxiety, and anti-migraine meds, she said something to the effect of, “The medication is getting in the way of your being able to develop your mind and spirit. It’s numbing you out.” I had been thinking along similar lines of late. She suggested that I wean off my medications extremely slowly and carefully and go to an herbal healer (at the cost of about $600/hour—not happening) to cleanse and balance my system. Instead, when I got home, I bought an herbal cleansing system online that I’ve used before with very good results. It’s a first step. The package should arrive in the next week or so.

At the moment, healing my body is my life’s work and it doesn’t get much more basic than that. I’ve got a five-part plan, and I’m aware that it’s going to take a long while, and that it’s going to be a full-time job. It’s also going to be a very good reason to get up in the morning, because I like getting down to basics very, very much. Here’s the plan:

1. Cleanse my system using herbal formulae and lots of water (three months).

2. Wean myself off my medications and find natural alternatives.

I’m going to start weaning off the Topamax tonight. I added one tablet last week, and now I’m up to three, so going back to two should be fine. I reduced my anti-anxiety med, Lorazepam, by a third as of last night, and I actually slept better than I had in a long time. My aim is to wean off the Topamax and Lorazepam first, and leave the Zoloft for last. I figure a) the Topamax is new and I’ve lived without it for most of my life and b) the Zoloft takes care of anxiety, so I’m covered.

And yes, I’m being careful. Trust me. I value my health and my sanity very highly. Bob and I are going in together to see my prescribing doctor at the end of the month to discuss the whole matter.

3. Start buying nutritious food, cook it myself, and feed myself three times a day.

This one will be demanding, but I am determined.

4. Declare my independence of the so-called mental health profession.

If I don’t get myself away from the therapists and the psychiatrists and the mental health professionals, I swear to God, they’re going to drive me into insanity. Sometimes, I think that if I see my therapist one more time, my exhaustion will become so acute that I will never recover. And if my prescribing doctor tells me again that I just need to have more fun, I think my eyeballs are going to pop out.

I can’t begin to catalogue all the many things that aren’t working, so I will just give you my overall sense. First of all, my therapist, whom I see once a week, is a very nice man. However, I get the feeling that every week, we are practicing psychotherapy on each other. I am sitting there, trying to understand how his mind works, and he is sitting there, trying to understand how my mind works. The difference between us is that he thinks he understands how my mind works when he doesn’t, and I know that I don’t have a clue about how his mind works, except that it works differently from mine. This difference in both cognitive pattern and insight means that he consistently gives me advice that would work for someone who is neuro-typical and/or does not have my difficulties with language, auditory processing, and acute emotional/empathic sensitivities.

So, the last time we spoke, and I mentioned my desire to meet other autistic and otherwise disabled people, he reminded me not to forget about the neuro-typical people in my life with whom I get along and whom I love—namely, my husband and daughter—and that I should consider befriending neuro-typical people as well. Now, it’s not that I don’t have neuro-typical friends. I do. Some are in California, some are in Massachusetts, and one is in Minnesota. (I had another one out west, but he turned out to be on the spectrum. Yay! Next to Bob, I consider him my closest friend.) But all of these neuro-typical friends are ones I made when I could still pass for neuro-typical. In the present tense, which is where I currently live (sorry for the redundancy, but I couldn’t resist), I can’t pass. I can’t meet people in public settings and talk with them. I can’t go dancing. I can’t go to public lectures. I can’t go to synagogue. How exactly am I supposed to meet neuro-typical people, much less hang out with them in their usual haunts? My attempts to get them to hang out with me in ways that work for me have not been wildly successful.

However, all of these basic, logistical, physical, unchangeable realities of my autistic life, which I have explained patiently to my therapist, and in great detail, over the course of many months, seem to fly out of his brain for no apparent reason. Someday, someone will do some research as to why such important pieces of data would mysteriously disappear from the brain of an otherwise intelligent neuro-typical therapist with a PhD, but until he consents to be a research subject (and one of his peers consents to make him one), I just don’t see it happening.

And then there’s my prescribing doctor, who I like to call Dr. Meds. Like my therapist, he is a very nice man. As psychiatrists go, he knows his pharmaceuticals—to a point, that point being how medications react on the bodies of neuro-typical people. And of course, he would know only how they react on the bodies of neuro-typical people because, to my knowledge, pharmaceutical companies don’t seek out autistic people as test subjects. So, he gives me Topamax, which is an anti-seizure medication, which means it affects my neurological system—my very, very, very sensitive neurological system. So, cool, I’m not getting migraines. Or seizures. But then again, I never got seizures, so now, my brain is so overloaded with medication to keep it calm that I’m falling asleep in the middle of the day and falling down on a regular basis. And the appetite suppression? Appetite suppresion I could live with. The Topamax has put my appetite into a coma. It’s on life support. It’s got tubes sticking out all over the place and my former mother-in-law (who doesn’t speak to me anymore, and no, it wasn’t anything I said) has activated the prayer chain in her church on its behalf.

It’s pretty unbelievable when the people who are supposed to be helping you don’t know anything about autism. It’s even more unbelievable when they don’t think they need to know anything about autism. It’s even more unbelievable when they don’t think they need to know anything about autism and they prescribe you medication.

5. Publish my book.

I know that it doesn’t seem like publishing a book is up there with weaning off medication and eating more carrots, but it’s been immensely healing to nurture my book toward publication.

And so, dear friends and readers, if you have any wisdom regarding natural remedies that you have found beneficial, by all means, please share. And if you don’t and just want to comment on this post, by all means, please do!

© 2010 by Rachel Cohen-Rottenberg

Yes, my friends, it’s happened again. I have been rendered invisible. Not by a neuro-typical stranger. Not at the co-op. Not in western Franklin County Massachusetts, the scene of the horror of my collective shunning. Noooooo. I would have expected all that.

No, my friends. I have been rendered invisible by a neuro-typical friend. By a friend with whom I had discussed the whole invisibility thing. By a friend with whom I had discussed the whole “people seeing Bob as a real person and me not as a person at all” thing. By a friend who had read my blog and had made a commitment to getting together once a month, and who had told me that if it didn’t happen once in a while, it was because he was busy with his family and his work, and that I shouldn’t worry, and that we’d work it out and make it happen: his words, not mine.

I know, I know. I’m such an idiot, believing what people say and all that. Like I have a choice.

And the thing is, this is a really nice person. I mean, I may not pick up nonverbals, but my empathic intuition is excellent, and I’ve never gotten any kind of mean, underhanded, not-what-he-seems kind of vibe from this person. He’s just a sweet guy. What could go wrong? So, we got together in December for dinner, and we had a nice time, and he said he was looking forward to more, and then it didn’t work out for January, and the last email I sent was in January, and I hadn’t heard since, but I figured, okay, he’s busy with his family and his work. I let it ride. I was being flexible.

The next thing I know, I get an email from Bob on Friday, in which he forwarded an email from this friend (who I’ll now call Fred). Fred had sent this email only to Bob, inquiring as to whether he might get a grant from our non-profit for a project he’s doing, and whether it might be appropriate to meet just with Bob, or with Bob and me. Did he copy me on this email, or put my name in the salutation, or ask me whether I might want to meet with him, or address it to me in any way, shape, or form? Noooooo. Of course not. And he knows that I am involved in the non-profit because I co-founded it and co-direct it with Bob, and because the last time we gave Fred a grant, he came and talked with both of us together.

I am so done with this shit. So, so done. Every time this happens, I have the illusion that another piece of me has been seared out of my being, and that illusion needs to stop. Now.

So I said, “Time to stand up for myself. No more second chances for anyone who pulls this shit. No more trying to explain it till I’m blue in the face. Time to tell it like it is. For me. Not for Fred, not for Bob, not for God, not for the Man in the Moon, but for me, so that I get to maintain some shred of self-respect.” So I sent Fred the following email:

“Dear Fred,

Bob forwarded your message to me regarding your project. We’ve discussed the matter in detail, and I’m afraid that the answer is no: our organization will not be able to financially support this project, nor any other project you might be planning in the future.

The reason has nothing to do with your project, and everything to do with the fact that you sent your email to Bob rather than addressing it to both of us and sending us each a copy. After everything that Bob and I have gone through–after all the disrespect that people have shown our partnership, after all the discussions that you, Bob, and I have had about it–it was very shocking to me that you would absent me from your initial request. I was especially dismayed by it, given that you had shown a desire to rekindle our friendship, and had expressed a hope that we could meet once a month. My last attempt to set up a meeting with you was in January, and I was giving you the space to be busy with your life, hoping that you would contact me again. I see now that you were not so busy that you could not contact Bob.

I have to say this, straight out: I am a human being. Disabilities or not, I am of equal worth to every other human being on the planet. I have an absolute right to have people respect me, to have people include me, to have people communicate with me in a way that works for me, and to have people take the time to meet me where I am. If people choose not to do so, I will no longer recede into the shadows and apologize for being sensitive, for being disabled, or for being upset. I get to be here, too. As I am.

I more than welcome your continued presence in Bob’s life. I know it means a lot to both of you, and I want it to continue. But if you are now inclined to make any further attempts in my direction–please don’t.

Rachel”

You’ll never guess what happened? Are you ready? I got an email from him. A half hour later. Right after I said, “[I]f you are now inclined to make any further attempts in my direction–please don’t.” What part of that sentence did he not understand? What do I have to do to get some respect from him? Apparently, I have no control over the matter, except to completely absent myself from the situation, which is what I did. I deleted the email unread.

I’m exhausted.

© 2010 by Rachel Cohen-Rottenberg