Journeys with Autism

Disclaimer: In this post, I’m going to describe my ongoing experience with pharmaceuticals and my process of weaning off them. I speak only for myself, in the knowledge that each medication affects each person differently, and that the process of weaning off medications is unique to each individual. In other words, everything I write here is descriptive of my own experience and is not intended in any way as a form of advice.

Despite the severe symptoms that accompanied my abortive attempt at Lorazepam withdrawal, my progress with weaning off my other meds has been going very well. In fact, except for the Lorazepam, I have stopped taking all of them. In April, I went cold turkey off Amitriptyline (which I’d been taking for over 20 years) and weaned off Topamax (which I took for a truly horrible six weeks). On May 1, I began the process of weaning off Zoloft, and took my last 25 mg dose on the evening of May 14. Last night was my first Zoloft-free night in seven months, and wow, do I feel better! On May 4, I began stabilizing on 1.5 mg of Lorazepam per day in three .5 mg doses, and that seems to be going well.

When I was taking both Zoloft and Lorazepam, I was sleeping about 6-7 hours/night. Last night, with no Zoloft (and only Lorazepam), I slept for 8 hours and had a series of very powerful and vivid dreams. And I woke up happy! And energetic! Without an anti-depressant! Can you imagine? In researching the side effects of various medications, I learned that Zoloft can cause insomnia (!), so it wasn’t exactly the best thing for me to take, given that my main challenge is, um, insomnia.

Isn’t it amazing that I’ve figured this stuff out in the absence of a medical degree? It’s astonishing what you can do with an Internet search engine and the ability to read.

I’ve also found that weaning off Zoloft (and other SSRIs) can cause “discontinuation syndrome” (which sounds suspiciously like a euphemism for “withdrawal” to me). This “syndrome” can start 1-3 days after the last dose and can include irritability, agitation, anxiety, insomnia, dizziness, vertigo, lack of coordination, nausea and vomiting, and flulike symptoms such as fatigue, lethargy, muscle pain, and chills. You’ll notice that the subtle side effects of acute Lorazepam withdrawal (seizures, acute suicidal ideation, and death) do not appear on the Zoloft withdrawal list, so I feel confident that I can weather the Zoloft discontinuation for however long it lasts (and may it not last long).

As for weaning carefully off Lorazepam, I’m going to wait until the Zoloft withdrawal is over. Otherwise, I won’t know how much is due to the Zoloft withdrawal and how much is due to an overly confident Lorazepam taper. The good news is that my regular doctor has been a gem about this whole process. I sent her information about how I can very, very gradually taper off Lorazepam, and she’s completely supportive of what I want to do. She’s going to do her homework so that she makes sure I’m tapering slowly enough and at the right doses. And she also plans to stay in regular contact with me as I go through the process, which will take several months. She knows that weaning off benzodiazepines is no fun. At all.

Of course, at some point, I will get to so low a dose of Lorazepam that I’ll start to experience insomnia. This is the part of the whole process that scares the living shit out of me. My insomnia (first controlled by Amitryptiline in 1987 and now by Lorazepam) began in early childhood and was induced by protracted trauma that included consistent sleep interruption and deprivation. Very, very bad stuff. Coping strategies aren’t enough. I have many coping strategies, but the only thing that has ever helped me overcome the insomnia is medication. Fortunately, the other doctor at the family practice is very keen on homeopathic and other natural remedies, so he is going to help me try a non-pharmaceutical alternative when the time comes. If the natural remedies don’t work, however, I am going to get a prescription for a new medication called Silenor, which treats insomnia and is not addictive. It seems to be based on a tricyclic anti-depressant (similar to the Amitriptyline I used to take, but without many of its side effects).

I’ve come to realize that the goal here is not to be medication-free. The goal is to be able to sleep. Of course, if I can do that without pharmaceuticals, all the better, but I can’t be a purist. Without sleep, I have no quality of life at all.

Which leaves me wondering: how much of my insomnia is due to autism and how much is due to trauma? I’d like very much to hear what your sleep patterns are like and what your challenges have been—whether or not you have a trauma component thrown into the mix. Hearing from other autistic people about sleep will help me start to get more clarity on how to separate the effects of trauma from the effects of autism. Of course, to some extent, I can’t separate them. The trauma was even more acutely damaging given my autistic sensory and emotional sensitivities, and given how acutely the ordinary world affects me, the autism itself can cause my system to feel very traumatized. Nonetheless, I would like to understand the origins of the insomnia as well as I can, and hearing about your experiences would be very helpful.

© 2010 by Rachel Cohen-Rottenberg

Two weeks ago, I had an experience that was life-changing. It was so intense that I haven’t been able to write about it until now.

It was a Thursday afternoon, and I had spent two hours working at the nice, spacious, quiet new thrift store. I like working there, and the staff gives me good, tactile, straightforward things to do—like tagging items, stamping bags, pricing books, and so forth. Now that I’ve told them that I sew, they’ve been sending me home with quilts in need of repair, and I’ve been having a wonderful time bringing them back to life. For example, here are before and after photos of my latest quilt renovation project:

So, anyway, back to the day in question. That day, I decided to wear only my earplugs to the store, and to take them out when I wanted to talk with people. For awhile there, the Zoloft seemed to be helping my sensory sensitivities and language processing issues, so I was feeling confident. Unfortunately, moderation is very hard for me. When my power switch is turned to “On,” it gets stuck, and it takes something rather harrowing to get it turned to “Off.” As a result, on this particular day, I had a 5-10 minute conversation with one person, and listened to another 5-10 minute conversation between two other people, and talked with my friend Tom (who has auditory sensitivities similar to mine, though not as severe). In other words, I was chatty.

Then I came home and felt like I was getting the flu. I mean, everything hurt. Everything. My joints. My muscles. My skin. My stomach. My head. I told Bob how I felt, and he thought I was getting the flu, but I knew it wasn’t the flu. It was the stress of talking, listening, translating, falling behind, talking, listening, translating, falling behind, talking, listening, translating, falling behind, over and over and over and over and over until I couldn’t think straight anymore. It’s as though the stress were radiating to every part of my body. I’ve felt so often over the past year as though I were getting the flu, but then I take a day or two to myself, and I feel better. So I finally figured out why I was getting sick.

Once my nervous system calmed down, I decided that I had to grasp the bull by the horns before it gored me to death, so I wrote the following email to the lovely managers and volunteer coordinator at the store (titled “Working Around My Disabilities”):

Hi all–

I plan to be working at the store this coming Wednesday and Thursday, and then to switch to Tuesdays and Thursdays in the following weeks. I will need to come in from noon-2pm (rather than 11 am -1 pm), because I’m needing my mornings for better self-care. Please let me know whether those hours will work for you.

When I come to the store, I’d like to communicate with written notes as much as possible. Don’t get me wrong—I absolutely love talking with all of you—but talking and listening are getting more and more difficult. Everything in me just wants to be “normal” and chat it up with everyone, but I overdid it last week and came home with muscle pain and body aches. My body seems relentlessly committed to reminding me that my autism and sensory processing issues are disabilities (even though I look pretty typical, even to myself) and that I need to take care.

See you on Wednesday…

Love,
Rachel

When I got back to the store the following week, I wore my earplugs and my headphones, and I knew that I could not remove them for any reason. The store managers were totally cool about it and communicated with me via notes. They love the work I’m doing on the quilts, they’re glad to have me at the store, and all is well with that part of the world.

Except, of course, that my last piece of denial is in shreds—the piece of denial that says, “Oh, come on. You can talk. You can listen. How hard can it be?” It’s hard. Unless it’s a one-to-one conversation with a close friend, a fellow Aspie, or a family member, it’s a non-starter. Completely. I know it. And knowing it makes me feel both incredibly relieved and very depressed.

The thing about being autistic and not finding out about it for 50 years is that I’ve had a lot of practice at looking around at all the things that interest me and thinking about how much fun they would be to do. Despite the fact that the world is quite overwhelming to my senses much of the time, I find the things that people do quite interesting. In fact, except for accounting and flipping burgers, there is very little in life that I don’t find interesting. I’d love to know how to cut people’s hair. I’d love to know how to repair a car engine. I’d like to know how to play soccer. I’d like to speak five different languages. I’d like to walk into a situation with people and talk to them. My brain looks at things and thinks, “That looks like fun.” And then I try to do them and find that they involve extended interactions with other people, and that’s all she wrote.

So, I now understand that I’ve got a serious disability going here, and I realize that I must tell people what I need without feeling ashamed or apologetic. I have no choice. I must advocate for myself and ask for the accommodations I need. With this reality in mind, I went to my appointment at VocRehab yesterday, and had a very good conversation (in writing and a bit of ASL) with my counselor Will, who is Deaf. I filled out a bunch of paperwork, and we discussed the kinds of jobs I might be interested in. I still have to have my application for VocRehab services approved, but I don’t think I’ll have any problem there. [UPDATE: I'm approved! In response to an email I sent asking how long the approval process would take, Will wrote, "You are eligible for VR services based on the medical information that I already got from you. Clients who are interested in work and have a documented disability/employment barrier qualify for our services."]

All in all, it was very helpful to be working with Will and seeing how comfortable he is with himself and how empowered he feels. It gave me a lot of strength. Plus, the office is so spacious and quiet, and the people there are so friendly, that I felt pretty good by the time I left (taking into account, of course, how tired I felt from interacting with people in general).

So, there you have it. I’m seeing the reality of my life more and more clearly, but I’m not seeing what lies ahead. It’s a hard place to be standing. I’m hoping that I can get a clearer sense of how to shape the next part of my life.

© 2010 by Rachel Cohen-Rottenberg

I’m feeling very depressed. I was very “up” after my trip to New York City, and I seem to be in a slide now. I’m very teary and feeling very isolated.

My daughter is in two plays at school, her very first ones, and I won’t be able to go. It will be crowded and noisy before and after, and I will get seriously overloaded just being there. So, I talked to her, and she seemed fine with it. I offered her support around the play, like helping her practice her lines. She suggested that I contact her principal and arrange to get a DVD of the performances, which I’ve done. But I feel really sad about what I can’t do.

Then, yesterday, my ASL tutor was supposed to come over, but she forgot. We had changed the day from Monday to Tuesday this week, because she had a teachers’ meeting on Monday. So, since the schedule had changed, she got involved in other things and our session slipped her mind. I know that it wasn’t personal. I know that. It’s just that in order to see her—in order to see anyone—I basically have to orient my entire day around pacing myself, not doing too much, conserving my energy, and getting ready to interact. When she didn’t show up at 4:30, I was like a little kid, looking out the window every 10 minutes, wondering where she was. It was like my whole day was wasted. She sent me a really apologetic note this morning, and I’m not angry at her. I’m just sad.

I’ve begun feeling that perhaps I need to find a part-time job, just to have a routine and a context outside of myself. I contacted a counselor at VocRehab Vermont, a Vermont state agency that helps put disabled people to work.  The counselor’s name is Will. He’s the Deaf counselor I emailed several months ago regarding strategies for navigating the hearing world. I’ve got an appointment to meet with him next Friday. Here’s the email I sent him this morning:

Hi Will,

Next Friday would be fine. Please send directions to your office. It would also help me if we could communicate in a quiet room. If there is too much background noise, I won’t be able to hear your interpreter’s voice or think clearly.

Here is a short list of my disabilities/challenges:

Asperger’s Syndrome (a form of autism)
Sensory Processing Disorder (of the sensory over-responsivity type, mainly affecting moving visuals and sound)
Mild dyspraxia with fine motor tasks, moderate dyspraxia with gross motor tasks (Dyspraxia is a difficulty in sequencing novel tasks.)
PTSD, anxiety, and depression (all managed by medication)

And here is a list of what I’m good at:

Focusing on the task at hand
Organizing just about anything
Discerning and creating patterns
Doing strenuous physical work
Writing and editing
Creating art
Being honest and direct

I’d like to find work in the non-profit, social-service sector. Most of my employment has been in front of computers in corporate environments, and I don’t want to work in front of a computer or go back to the business world again.

All the best,
Rachel

I don’t know what he’ll be able to help me do. I’m seesawing between my fear that he won’t think I’m really disabled, and my fear that he’ll think I’m too disabled to work at all.

I seriously need to get some support for being out in the world again. I don’t know what I’m suited to do anymore. My level of confidence is at an all-time low, and no matter how many times I tell myself that I’m a good, intelligent person, it doesn’t seem to matter. I just want to cry.

© 2010 by Rachel Cohen-Rottenberg

Here I am, sitting in my loft, seeing almost nothing but bright yellow leaves out my window. It’s a beautiful New England autumn day, and life feels very peaceful. A number of wonderful things have been happening.

Another birthday comes around
My beloved husband turned 65 this week, and he spent his birthday as he always does: taking a long walk and writing in his journal. When he turned 64, I reassured him that I would still need him and still feed him. And now that he’s 65? Hmmm…I guess I’ll continue to. I’ve kinda gotten used to the guy. And he is a really nice guy, too.

My new ASL tutor is wonderful
I began one-to-one ASL tutoring with a new teacher named Brittainy. She came over to my house on Monday afternoon, and we had a great time together. She’s a 30-year-old painter who teaches art at the school for the Deaf. She’s become progressively hard of hearing over the course of her life and learned ASL only five years ago. It’s very encouraging to be learning from someone who acquired ASL as an adult. She’s a very focused, enthusiastic teacher, and I’m a very focused, motivated student, so I’m very much looking forward to practicing my skills and learning from her. It feels great to have turned the corner from a class that didn’t work to a tutoring situation that does.

My book goes out for review
After revising my memoir for the third time, I finally decided it was time to show it around. I sent the book out for review to a few people—none of whom, I assume, see any need to reorganize it, delete half the text, or add an encyclopedia’s worth of missing information. (Yes, I’m staying optimistic. More on that later.)

My meds get reassessed
The background: I’ve been taking the same tricyclic anti-depressant for twenty-two years, and a newer anti-anxiety medication for about five years. While they still help, their effects seem to have diminished over time. In addition to feeling depressed more often than I’d like, I’d been noticing that just about everything in life was causing me anxiety, from stepping out my door, to talking on the phone, to grocery shopping, to trying to get to sleep at night. So, I made an appointment with a psychiatrist to discuss my medications, and I saw him earlier in the month.

During the appointment, I described my anxiety, and I told him how often I seem to “bottom out” into depression. After I’d recited the short history of my awful childhood, my memories of my parents, and the challenges of my newly diagnosed autism, he said, “The combination of your childhood trauma, a possible family history of depression, and your neurological wiring creates a condition akin to The Perfect Storm. There is no way you could put those things together and come out with anything other than anxiety and depression.”

I just about hugged him. Then, he prescribed Zoloft. I just about hugged him again. He said that the Zoloft would help with both the anxiety and the depression, and that I wouldn’t have to quit taking my other medications. I’d been very anxious about the prospect of having to go off my regular meds before starting a new one, so when he said it wasn’t necessary, I almost hugged him again.

In addition to my old meds, I’ve been on Zoloft for about a week. The effect is pretty amazing. At first, I felt nauseated and tired out, but that often happens when I introduce anything new into my system. After a few days, I started feeling good. It’s not as though all of my problems are solved, but disappointments aren’t laying me low as they once did, and I’m maintaining a reasonably optimistic view of things. Better yet, I seem able to accept the limitations of my autism without guilt, frustration, anger, or the whole wishing-it-were-otherwise syndrome. And that mask of neuro-typical perfection I used to hide behind? I can’t find it anywhere, and I don’t even care where I left it.

In short, I seem to be focusing on my strengths and accepting the rest. It’s been a long time coming.

I have to admit, though, that in the midst of all this wondrousness, I’ve been having the strangest feeling. I keep asking myself: What has happened to Anxiety and Depression, my constant companions? Where did they go? They’ve been around for so long that things feel strangely quiet without them.

I could live with that kind of peace.

© 2009 by Rachel Cohen-Rottenberg