Journeys with Autism

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

I was going to write a post about just one of my medication horror stories, but I now have two medication horror stories, and the second story is even more troubling than the first. I’m writing about these experiences partly to vent, but mainly to provide information about how some of the meds my doctors have prescribed have caused some very serious problems.

Topamax
I’ve written about my terrible experience with Topamax in a previous post, but I left out the scariest part of the whole ordeal. To recap, here are the side effects I experienced when taking Topamax to prevent migraine headaches:

Nausea 24/7
Complete loss of appetite
Sudden and unwelcome weight loss
Loss of balance and motor coordination
Falling asleep in the middle of the day
Feeling like a toxic mess inside

In the middle of all these side effects, something happened that was potentially life-threatening. We were in New York City, and I was taking a shower, when I turned to reach for the soap and slipped. I fell in the tub, and then I fell out of the tub. I had never slipped in a bathtub in my entire life, and I realized only later, as I watched my balance and motor coordination deteriorate, that the Topamax had caused it. The one thing that saved me from serious injury was that I had studied karate for several years and had learned how to fall safely. So, I instinctively kept my head up and my hands up, and rolled my torso onto solid ground. I was left with sore hips and shoulders for a few days, but given that I could have sustained a serious head injury or broken bones, I consider myself very lucky.

I have now weaned off Topamax and will never, ever take it again. I’d rather have the migraines, and that’s saying a lot.

Lorazepam
WARNING! WARNING! WARNING!
Don’t ever take Lorazepam unless you are dying, it helps with the anxiety, and you will never need to withdraw from it.

I have taken 1-2 mg/day of Lorazepam for about 5 years now, and had no idea that it created physical dependency until last week. Yup, that’s what I said: physical dependency. In fact, it’s been prescribed by three different doctors, and each time, I told them directly that I absolutely could not take anything narcotic or addictive. What part of that statement did they not understand? Or did they just not know what Lorazepam does?

After attempting to withdraw from Lorazepam myself, I suffered an acute reaction that was far worse than any withdrawal reaction I’ve ever had from any other med. I hardly slept for two nights. I was sweating through my clothes. I was crying and frightened and in so much pain that it was mentally and physically unendurable. I felt like my body was coming apart. I found myself pacing up and down the floors of our house saying “Misery, misery, misery.” I couldn’t imagine why it was having this impact. Then, I looked up information on how to taper off the Lorazepam in order to avoid pushing myself to the edge of sanity, and I found out that it’s a benzodiazepine and a tranquilizer. In other words, it’s in the same category as Valium and Librium. It’s addictive. There are many people who want to get off benzos, who know that they’re having no positive effect, but who can’t because the physical withdrawal is so unbearable.

Because I highly value my sanity, I’m back on about 1 mg/day now and can finally sleep and tolerate being in my body. I found a great support site for people withdrawing from benzos, with instructions for how to withdraw from Lorazepam using (ugh) Valium. My next step will be to try to find someone who knows what they’re doing to monitor me. Wish me luck, because I’m not feeling a great deal of trust in medical professionals at present.

My Future with Meds
After the hellish insomnia of last week, I remembered the constant, intractable, trauma-induced insomnia of the first 29 years of my life. It was awful, and I never want go back to that. I used to take a non-addictive tricyclic anti-depressant to help me sleep, but it stopped working. Decades of psychotherapy did nothing to help the insomnia; the tricyclics really gave me my life back. The benzos help me sleep, but obviously, they’re not a long-term solution. I’m beginning to feel that the insomnia is really at the root of my anxiety and depression. When I sleep well, my anxiety and depression start to fade. I’m starting to accept that I might need to take medication for insomnia for the rest of my life, but I have to find a non-addictive alternative.

If, in fact, a prescription medication is the only alternative, I’m not going to another doctor and saying, “So, what can you prescribe for me that won’t be addictive?” I’ve tried that. It didn’t work. Instead, I’m going to research alternatives, find the one I want, walk into my doctor’s office, and say, “Write me a prescription for this one.”

From now on, I’m doing my homework.

© 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

Bob and I have an appointment to see the doctor on Friday about my blood work and EKG results. When I say “Bob and I have an appointment,” I mean that Bob will be physically present, and that I will be present in the form of a letter that he will bring with him.

Going to the appointment alone was Bob’s idea. He said “It’s always stressful for you to go to the doctor, and this time, you’re dealing with the prospect of discussing tests that you don’t want to have. Since we’ve talked out all the options, why don’t I go to the doctor, discuss any additional test results, and then bring them home to you? Meanwhile, you can write a letter stating your thoughts, and I’ll give it to the doctor.”

Isn’t he a great husband? I think so, too.

So, I wrote and signed a statement giving the doctor permission to talk to Bob about anything related to my health and medical history. Then, I wrote the letter to my doctor. I want to share it on my blog because it provides an example of the way in which writing empowers me by giving me an alternative to sitting in an office, overwhelmed and unable to express myself properly.

Disclaimer: I am not a medical professional or a medical authority, and I am not advocating that anyone follow the path that I am following. What works for me won’t necessarily work for anyone else.

Here is the letter. Some of the information has come from previous posts, so parts of the letter will probably sound familiar to some of you. (I’ve left out my doctor’s name to protect her privacy.)

“Dear Doctor:

A word of explanation: I’m writing this letter because I find it much easier to say things in writing than in person. Because I’m autistic, conversation with even one other person is difficult. I cannot read nonverbal cues, so I can’t use the same kinds of “shortcuts” that neuro-typical people use to understand the meanings behind the words. My brain has to work very, very hard on words alone, and it gets tired very, very easily. After just a few minutes, I am “full,” and I can’t integrate any more information.

I want to let you know my thoughts about the ST depression on my EKG. I’ve done some research as to possible causes. While the ST depression could signal heart disease, I have no risk factors. I exercise regularly and have done so for all of my adult life. I don’t drink alcohol or coffee. I haven’t smoked a cigarette in thirty years. I have never been overweight. My blood pressure is always in the low-to-normal range. I have taken care to eat healthy food since my early 20s, and my diet presently consists of fruit, vegetables, chicken, fish, soy products, tahini, almond butter, whole grains, and very little salt. I have allergies and sensitivities to a wide range of foods, including dairy products, gluten, refined sugar, and hazelnuts. In addition to removing these foods from my diet, I have also removed the processed, high-fat, and high-salt foods that contribute to heart disease.

Other possible causes of an ST depression are:

1) An electrolyte imbalance
I don’t know yet whether an electrolyte problem will show up on the blood work you ordered, but I wouldn’t be surprised if it did. I take a multivitamin, but I do not take any supplements containing potassium, magnesium, or calcium.

2) Positional vertigo
I have a condition called severe gravitational insecurity, a problem with my vestibular system similar to positional vertigo.

3) Stress during the EKG itself
I have appreciated your sensitivity to my sensory needs and your willingness to learn how autism affects me. However, going to any public place is very stressful on my body, and coming to your office is no different. Part of being autistic is feeling that I am always in the range of an unforeseen sensory assault, whether auditory, visual, tactile, or olfactory. For me, auditory overload is a particularly significant problem. Because I have no ability to filter or prioritize auditory stimuli, I have started to use a noise-reduction headset, which has given me my first experience of “background noise.”

Unfortunately, during the EKG, I had no hearing protection, and the woman who administered the test talked continually. She talked mainly about her autistic son, a subject that would have interested me were I not about to have an EKG. When people talk and talk, without understanding that I have a great deal of difficulty processing speech, my nervous system response is extreme. I feel fearful and overstimulated to the point of panic. During my EKG, I was in a state of acute sensory overload. These kinds of responses have been shown to cause ST depressions in otherwise healthy people.

And of course, for some people, ST depressions are a normal part of an EKG, with no ill effects at all.

I understand that it’s your responsibility to suggest an echocardiogram and a cardiac stress test, so I want you understand the impact of these tests on my body. An echocardiogram may seem like a simple test to most people, but for me, going to the hospital, waiting in a room with other people, wearing a gown, having gel put on my body, and having a complete stranger do an ultrasound would put me out of commission for several days afterward. I don’t simply mean that I’d be fatigued. I’d be completely exhausted. I’d have bladder pain, neck soreness, stomach upset, nausea, migraine, and sleep disturbance. I would lose my appetite and my ability to focus. As you can imagine, a 3-5 hour cardiac stress test would amplify these responses by several orders of magnitude. I would be very sick and completely nonfunctional for a week or more.

Tasks that are simple to other people, like going to the grocery store or to the post office, are very difficult for me. Medical tests in a hospital are beyond difficult; they border on the impossible. Unless there is a clear medical need to go through them, I don’t see anything to be gained by having a procedure that is going to make me sick. Therefore, I am going to decline the echocardiogram and the cardiac stress test. I understand there is some risk involved in doing so, but there is also great risk to my well-being if I take the tests at all.

Regarding other medical tests, we’ve talked about scheduling a yearly physical, mammogram, and colonoscopy for the same month each year. While logically this plan makes sense, physically it would be a disaster. One test a month is all I can do, and I cannot have several scheduled in advance. I need to have one test and then recover before making the next appointment. I have started keeping a list of the dates of my tests so that I can see when I am due to have them again.

Because I’m having difficulty seeing clearly out of my glasses, my next medical visit is to the ophthalmologist in September. After that, I will consider having a mammogram, though the level of neurological stress involved is comparable to what would result from an echocardiogram. I definitely do not want to have a colonoscopy each year; my nervous system would have a very bad reaction to it, and I can’t go through it.

It might seem that I am making the wrong trade-offs here. It might seem that I am unwilling to go through a short period of “discomfort” in the service of finding out whether I have a treatable illness. However, please know that in the 50 years that I lived with undiagnosed autism, I drove myself mercilessly against my neurology in ways that have irreparably harmed me. At present, and for the foreseeable future, my most important priorities are to spare my nervous system undue stress and to improve my everyday quality of life—even if that life might be shortened for lack of the proper test at the proper time. I have given this matter a great deal of thought, and I know that this course is the best one for me.

All the best to you,

Rachel Cohen-Rottenberg”

© 2009 by Rachel Cohen-Rottenberg

I was going to write a post about my time at the thrift store today, but then I came home to a wonderful little packet of papers scheduling various medical tests that I may or may not need. The result of receiving said wonderful little packet of papers is that I’m stressed out, pissed off, upset, and generally in a bad mood.

The backstory: I had a physical about a month or so ago, at which time I got a baseline EKG. About a week or two later, I got a phone message from the doctor, saying that there was a “slight abnormality” on the EKG called an “ST depression.” She said that I should have an echocardiogram (basically, an ultrasound for the heart) and a cardio-stress test. Fool that I am, I called back and told them to schedule the tests. Three weeks later (today), I got my lovely little packet of papers.

The echocardiogram is no big deal—that is, compared to the stress test, which is an autistic’s nightmare. It entails going to the hospital for three to five hours (or, if I can’t stand that, I can stretch out the ordeal over two visits of two hours each). During this time, they will inject me with a radioactive tracer. Twice. Through an IV. Doesn’t that sound like fun? The rest of the time I’ll be walking/running on a treadmill, recovering from walking/running on a treadmill, or staying very, very still for 18-22 minutes while they do the imaging. Twice.

So, good little Aspie that I am, I slowly but surely panicked. Then, I went online and started looking up information in, shall we say, a somewhat hyper-focused, perseverating, leave-me-the-hell-alone kind of way? Of course, I started out by finding all kinds of scary information about heart disease. Then, I started to feel slightly better when they described what to do in order to decrease your risk of heart disease, like decreasing salt and not eating so much red meat. Hello? I don’t buy anything with salt added, I don’t eat red meat, I exercise daily, I don’t smoke, I don’t drink alcohol, and I eat mostly fruits, vegetables, tofu, fish, and chicken. And did I mention that I have low-to-normal blood pressure? And that there is no history of heart disease in my family? 

Fending off my growing fear that I might die of a heart attack any second, I kept searching and found out that the ST depression could also be caused by an electrolyte imbalance. Hmmm. I eat lots of bananas (which have potassium), but I may not get enough magnesium. An electrolyte imbalance could definitely be the culprit. Okay, so maybe my arteries aren’t hardening as we speak. I felt relieved. Slightly.

Finally, I found some online articles by actual doctors who said that an ST depression can be completely benign. It can be caused by things like anxiety or panic during the EKG. Wanna know what happened during my EKG? Well, when the talkative nurse was putting all the little patches on me, she was prattling on and on about her autistic son, and how they never, ever, ever use the word “autism” with reference to her son, because that would just make the little guy seem, well…I don’t really know. Autistic? Then, I told her that I’m autistic, too, and then she started prattling on and on about how inspiring I am, and how I give her so much hope for her little guy who they never, ever, ever say is autistic. Can you say major freakin’ sensory overload? Extreme hyper-reactive nervous system response? Fear, anger, anxiety, panic—as though my entire system were saying “Who the f*ck let this woman in here, anyway?”

When the doctor came back in and asked how the EKG felt, I said it was fine, except for the nurse who kept talking.

So, here’s how it looks to me:

Three weeks ago, I got a phone message from the doctor saying that I have a slight abnormality on my baseline EKG. She didn’t ask me to come in for an appointment to discuss the results of the EKG. She didn’t tell me how slight the abnormality is. She didn’t refer me to a cardiologist. She didn’t tell me that it could be a sign of anything dangerous. She didn’t ask me about my diet. She didn’t tell me that I have any risk factors for heart disease. (I don’t.) She just told me that I had to have an echocardiogram and a stress test. I didn’t freak until I got the papers today and realized that they’re going to inject me with radioactive dye and make me hang around other people in a hospital gown for 3-5 hours.

I called the doctor’s office back and left her a message saying that maybe we ought to start with the echocardiogram and see the result before we start with the stress test. A couple of hours later, I started thinking that maybe we should just start with a blood test to check my electrolyte balance. Now, I’m thinking that maybe they should sedate me and give me an EKG in a room in which the nurse is NOT prattling on about her autistic son.

My grandmother never saw a doctor from the day she gave birth to my mother in 1933 until the day she died in 1975. And guess how she died? She went to sleep and never woke up. She was 74, and they don’t even know why she died. There wasn’t a thing wrong with her. It was just her time to go.

Now I understand why she made that choice. I don’t know whether it’s for me, but it sounds more and more appealing all the time. 

© 2009 by Rachel Cohen-Rottenberg

I had a very frustrating experience at the doctor’s office on Wednesday. It taught me a lot about my Asperger’s challenges, my limits, and the necessity of getting the right support.

But first, I need to vent.

Since moving up to Vermont, I’ve been seeing a new doctor. I went to her office on Wednesday because I had requested a referral to my OT, and the doctor wanted to check in each month about my OT visits. We also needed to do some “housekeeping” tasks, like figuring out when I had my last physical.

When I saw her last month, my chart did not have any information in it from my last doctor. I’d requested that the records be transferred about five months before, and it was surprising that they weren’t there. I later got a very apologetic message from the office manager, saying that the records had arrived long ago, but had not been placed into the folder with my new patient information.

Unfortunately, that mistake was a harbinger of things to come.

On Wednesday, I had a 3:00 PM appointment. I showed up about 10 minutes early to check in and give the receptionist my co-pay. I then sat in the waiting room, which was slowly filling with people, until 3:20, 3:30, 3:40…You see where this is going. At some point, a woman with two small children came in. The older boy was coughing constantly, and the younger one (who undoubtedly was carrying his older brother’s germs) was crawling around putting everything in his mouth that wasn’t tacked down, and touching every object he could find, including the walker of an elderly woman who was there to see the doctor. The mother of the two boys sat with a magazine held up to her face (literally) and paid very little attention to the children.

By about 3:45, I was long since overwhelmed and had begun to realize it. So, I went up to the receptionist and asked whether there was a quiet place in which I could wait. Luckily, a room had just opened up, so the nurse brought me in there and took my blood pressure, my pulse, and my temperature. When she was done, she said that the doctor would be there “in a few minutes.” I began to enjoy the solitude until I realized that it would be more than a few minutes, at which I point, I started to silently cry with frustration and anger. At 4:10, the doctor walked in, and without offering an apology or an explanation for the long wait, said: “So, you’re here for an osteopathy appointment?”

I just about spit. It was everything I could do to keep from rolling my eyes and snarling. Instead, I used my best humorless monotone voice to say, “No, I’m here because I’m seeing an OT and you said I needed to come in once a month.”

“Oh,” she said. “That’s right.” (Did I mention that she had the seven-page OT evaluation I’d brought in a month before?)

Then, we spent about ten minutes talking about health insurance, during which time she told me that I needed to call the insurance company and find out whether the referral had been approved. She suggested that I carve out about 45 minutes and put my phone on speaker while I got the run-around. Again, in my most humorless voice, I said, “No, I absolutely cannot do that.” She finally said she’d get someone from the office to call the insurance company.

Terrific. So, about scheduling that physical, I said. I couldn’t remember exactly when I’d had my physical last year, so I asked her to look it up on my chart. She said, “Well, I see you had a physical in 2007.”

“Okay,” I said slowly, “in what month did I have my physical in 2008?”

She said she’d have to figure that out. So then, and I am not kidding you, she began to remove the pages from my chart and spread them out onto the examination table. She still couldn’t find the pages from 2008, so she said, “I’ve got to go and get someone on the case about this.” She left the room. I know, I should have grabbed onto her ankles and kept her from leaving, but I figured she would be back in a minute or two. Why I made that assumption, given how swimmingly everything was going, I don’t know. Anyway, the minutes ticked by. First, I started crying again, and then I walked out into the corridor, just to make sure everyone hadn’t gone home. I couldn’t decide whether to just walk out of the office altogether. I probably should have.

Finally, after ten minutes, she came back and told me that I’d had my last physical in June of 2008. Halle-freakin’-luyah.

Then, she gave me some new prescriptions for my medications. Did she ask me anything about my visit to the OT? Anything at all? Nope. And that was the reason for the whole visit. I could have gotten my prescriptions called in and found out the date of my last physical over the phone.

I drove home crying in utter frustration.

So what have I learned about my Asperger’s from this little disaster?

1. As the saga in the doctor’s office wore on, I could see a meltdown on the horizon, and I steered myself away from it. Nothing would have been gained by it, and I wasn’t about to lose my dignity in front of everyone. However, steering clear of the meltdown was so exhausting that it left me without a clear sense of how to express my frustration and my needs in a constructive way. Instead, it took a huge effort just to ask the simplest questions, and by the time we were done, I could hardly put a sentence together.

2. I don’t do well when my expectations are thwarted. I generally expect some wait at a doctor’s office, but I had not imagined a 70-minute wait for what should have been a 15-minute appointment. That was more out-of-whackedness than I was prepared for.

3. I don’t do well when people are very late after I’ve done everything I can to show up on time. I’ve gotten more flexible about some lateness, but over an hour is really over the top.

4. I don’t do well when people don’t apologize. A simple, “So sorry about the long wait, but we’ve had a series of mishaps today” would have sufficed. But then again, I’m an Aspie and don’t understand social graces. I guess I’ll have to work a little harder on that.

5. I can’t sit in a crowded waiting room for very long.

After telling the story to my husband, he said, “Look, you’re dealing with a disability here, and they need to make accommodations for you. Otherwise, you can’t go to that doctor’s office again. If you had a mobility problem, they’d make allowances, so what’s the difference?” (A smart man, my husband.)

So we’re going to write a letter to the doctor’s office, making it clear that my AS and SPD make certain things very difficult. We want to be able to call before coming in, so that if they’re running late, we can wait at home, rather than in a crowded waiting room. If they can’t accommodate us, we’ll find someone who can.

I realize that what I need most in these situations is an advocate, rather in the same way that an Aspie kid in school needs an aide. So my husband will go with me to future appointments. He won’t be overwhelmed, and he’ll have enough clarity of thought to express what I can’t express while I’m just trying to process what’s going on.

My next appointment isn’t until June, so we have some time to continue thinking it over. I’m not going to accept that what happened is so common that I should let it go. I know it happens a lot, but that doesn’t mean I shouldn’t protest it and advocate for what I need. Nothing will change otherwise. Nothing ever changes without people making themselves heard.

© 2009 by Rachel Cohen-Rottenberg