Archive for Self-Advocacy

My Most Recent Audiology Assessment

December 16, 2010 Rachel Communication, Disabilities, Hearing, Self-Advocacy, Sensory Processing Issues

Several months back, I wrote about the results of my July audiology assessment. A few months after the assessment, I began to feel that something had gone terribly wrong and that my auditory processing had gotten significantly worse.

My first inkling came in the form of a visual. One night, as I thought about the way I’d been processing auditory information, the image that came to mind was a feeling of the walls closing in. It was as though I were in a room that was getting smaller and smaller, so that every way I turned, I hit a wall. It was terrifying. I decided to call my audiologist’s office and schedule another appointment right away. When I told the receptionist what was wrong, she agreed that I needed to come in as soon as possible.

When I went in for the appointment on November 11, the audiologist asked me how the process of tapering off Lorazepam was coming, and I told her that I was almost done. (I am now completely off the Lorazepam—for good!) In all other respects, my health has actually been improving. I’m sleeping better. My other sensory sensitivities have lessened. My thoughts are clearer. My emotions are more manageable. All of these things have gotten better while my auditory processing has felt like it’s been spiralling downward. The audiologist suggested that perhaps my auditory processing abilities were stable and only seemed worse when contrasted against everything else.

I was hoping she was right. Unfortunately, once we did the tests, we found out that she wasn’t. My auditory processing abilities have drastically gone downhill. Here are the results of each test:

Pure Tone Audiometry
This test consisted of a series of tones. When I could hear a tone, I pushed a button. The test showed no change since July. The mild hearing loss in my right ear and moderate hearing loss in my left ear have remained stable.

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.

July assessment: I scored 100% in my left ear and 100% in my right ear.
November assessment: I scored 100% in my left ear and 100% in my right ear.

These results didn’t surprise me. As I’ve said before, ordering things into patterns will be the last of my faculties to go.

Auditory Closure
The auditory closure test measures how well the subject can hear words spoken very quickly. Auditory closure is an area of processing that concerns the listener’s ability to fill in missing or disorted patterns of the auditory signal and recognize the whole message. It is an area of processing that can have a direct impact on a person’s ability to understand degraded speech.

July assessment: I scored 48% in my left ear and 52% in my right ear.
November assessment: I scored 48% in my left ear and 52% in my right ear.

During both assessments, this test was very difficult because I couldn’t hear the words clearly enough to form a word-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. 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.

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.

Both sets of scores are in the Poor range, but at least there had been no change since July. The audiologist concluded that I am “presenting below normal limits in this area of processing.”

Binaural Integration
The binaural integration test measures how well the subject can hear out of both ears simultaneously. Binaural integration is an area of processing that can have a significant impact on a person’s ability to understand multiple auditory signals at the same time. People with difficulties in this area often have a difficult time understanding when more than one person is speaking at the same time.

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.

July assessment: I scored 90% in my left ear and 92.5% in my right ear.
November assessment: I scored 28% in my left ear and 65% in my right ear.

This test was immensely frustrating. In my July assessment, I had dealt with my processing limitations by memorizing what I’d heard, visually lining up the image of the numbers in my mind’s eye, and then speaking them. In my November assessment, I could not line up the numbers in my mind’s eye at all. By the time I had gotten to the last couple of numbers, I’d have forgotten the first ones. A few times, I remembered three of the four, but mostly, I could only identify one or two. At one point, I noticed myself listening only out of my right ear in order to simplify the process, so of course, I only heard half of what came into both ears.

The November scores are in the Poor range. The audiologist concluded that I am “currently presenting with significant difficulty in this area of processing.”

Binaural Interaction
The binaural interaction test measures word recognition in noise. Binaural interaction is an area of processing that can have a significant impact on a person’s ability to understand speech in the presence of background noise. The noise can include anything from the scraping of chairs to the hum of fans and overhead projectors or speech. People with difficulties in this area often require a greater signal-to-noise ratio in order to pick up and understand more of what is being said.

For this test, the audiologist played a series of words spoken in the midst of noise. For each word, I had to repeat what I had heard.

July assessment: In my left ear, I scored 80%, and in my right ear, I scored 68%.
November assessment: In my left ear, I scored 32%, and in my right ear, I scored 20%.

In my July assessment, I had been able to fish many of the words out of the noise, hold them in my visual memory as word-pictures, and then speak them. In my November assessment, I couldn’t make out enough sounds in most of the words to form a word-picture in my mind at all. A number of words simply disappeared into the background noise. For others, I could make out a vowel sound and a consonant, but I could not even venture a guess as to the other letters.

At one point, when I was nearly in tears, the audiologist stopped the test and simply played a series of words in quiet, first in one ear, and then in the other. It was as though I were looking at black letters standing out against a white background. I scored 100% in quiet. Then, she kept going with the words in noise and the letters began fading out again.

Needless to say, the November scores are in the Poor range. The audiologist again concluded that “I am currently presenting with significant difficulty in this area of processing.”

The audiologist was perplexed about my scores dropping so sharply, so she gave me a referral to a neurologist. My sense of what’s happening is that my compensatory mechanisms have broken down, probably from decades of overuse, so that I’m now left to deal with an auditory processing system in shambles. In February, I have an appointment with a neurologist at Dartmouth-Hitchcock to do further testing, so I’ll let you all know if anything interesting comes to light.

© 2010 by Rachel Cohen-Rottenberg

20 comments

Self-Advocacy Begins at Home

December 7, 2010 Rachel Communication, Community, Self-Advocacy

Last week, we received a fundraising letter in the mail from a local agency that serves people with developmental disabilities and mental health issues. It’s a very good organization that we wholeheartedly support, but the letter contained a moment of “us and them” thinking that I could not let go unanswered. And so, as the ASAN-VT chapter leader, I wrote and sent the following letter to the executive director. (I’ve changed her name for the purposes of this post.)

December 1, 2010

Dear Ms. Graham,

This week, I received your fundraising letter in the mail. My husband and I intend to send in a contribution to your organization, as we fully support all the great work that you are doing.

I was troubled, however, by the following sentence in the second-to-last paragraph of your letter:

“We have found, over and over again that people with disabilities want the same thing that you and I want—family and friends, being connected to their community, and meaningful employment.”

The phrase “you and I” is set off in contrast to “people with disabilities,” as though the reader addressed as “you” could not possibly be a person with disabilities. Many of us who are disabled receive and read your letters, and being excluded from the audience of the letter does not engender a feeling of connection to our community.

Words have a great deal of power. Given that one in five Americans is disabled, and that all of us run the risk of becoming disabled at some point in our lives, we must remember that there is no “us” and “them” here. We are all in this together.

Sincerely yours,

Rachel Cohen-Rottenberg
Chapter Leader
Autistic Self Advocacy Network of Vermont

I’ll let you know whether I receive an answer.

© 2010 by Rachel Cohen-Rottenberg

14 comments

Speak Up on November 1st!

October 22, 2010 Rachel Communication, Community, Marginalization, Self-Advocacy

On November 1st, people all over the world are being asked to stay off social networking sites as part of a Communication Shutdown. This initiative is the brainchild of an Australian organization called the AEIOU Foundation for Children with Autism. To join, you make a donation to receive a CHAPP (charity app). The CHAPP gives you a shutdown badge to wear online and adds your picture to a whole collection of photographs of other supporters, including celebrities. (Wow! Celebrities!) The donation you make goes to an “autism charity” in your home country.

In addition to raising money, the aim of the Communication Shutdown is to help people understand what it’s like to be autistic. According to the website devoted to the initiative:

Social communication is one of the biggest challenges for people with autism. By choosing to shutdown your social networks for one day, you will have some idea of what it’s like for people with autism who face this challenge every day.

Rachael Harris, a counsellor and supporter, who herself is on the autism spectrum, put it best when she said, “Electing to shutdown social communication mirrors autistic silence. But it also draws attention to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others. The CHAPP is a powerful way to create a sense of empathy towards those on the autism spectrum.”

Whenever I hear ideas like these, I’m reminded of those Highlights magazine games where you look at a picture and start scanning for all the things that don’t belong there. Where to begin?

First of all, what is the AEIOU Foundation for Children with Autism? It’s an organization devoted to early intervention strategies for autistic children between two-and-a-half and six years of age. Looking at the website, I can’t find any specific information about what those early intervention strategies might be. If we’re talking ABA, I’m outta here.

Despite the lack of specificity about therapeutic strategies, I have no trouble finding information on the website about the people who run the organization. And guess what? Not a single one of them is autistic. Not one. Running an autism organization without any actual autistic people in it is like running a synagogue without any actual Jewish people in it. Of course, if they had autistic people running the place, they might not be raising money for such organizations as the National Autism Association, whose motto is “Think Autism. Think Cure.”

Which leads me to my next question: If “electing to shutdown social communication mirrors autistic silence,” what is the source of that silence? Is it that some autistic people aren’t verbal? If so, our nonverbal fellow autists are certainly communicating in other ways: through art, through writing, through nonverbal behavior. I thought non-autistics are supposed to be stellar about picking up nonverbal behavior. When they’re communicating with one another, they use nonverbal signals all the time. It makes up 90% of their communication. It’s what we autists supposedly lack the ability to do. But when we autists communicate by our behavior, well, that’s just a tragedy.

What’s the tragedy? That people can’t speak? Or that too few are listening?

Whether we’re verbal or nonverbal, does telling people to stay off social communication networks really create empathy for us? The Internet is how we find one another. It’s where many of us feel heard. It’s where many of us feel most comfortable. Staying away from any form of online communication will not draw attention “to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others.” We’re not impeded from connecting socially online. And we wouldn’t be impeded from connecting socially in the rest of the world if people had a little more empathy for how we feel and met us halfway. At any rate, it’s counterproductive to tell non-autistic people to stay away from online sites when so many autistic people overcome “isolation and intense loneliness” by connecting with one another online. How can anyone possibly develop empathy for us if they’re not even aware that we speak loudly and clearly in our online communities?

The big pink elephant in the livingroom, of course, is that autistic people are not silent. Far from it. We communicate all the time, just like anyone else. But we are being silenced every day by the world we live in, and absolutely nothing about the Communication Shutdown speaks to the multitude of ways in which we are silenced:

We are silenced every time non-autistic people say we are silent.

We are silenced when “autism organizations” speak for us rather than including us.

We are silenced when the “autism community” isn’t led by autistic people.

We are silenced every time non-autistic people call each other “experts” and ignore the fact that we actually live the autistic experience every day.

We are silenced when people give to “autism charities” on our behalf, as though we are victims in need of rescue.

We are silenced every time we are ignored, in situations large and small.

We are silenced when people do not have enough empathy to invite us into a conversation.

We are silenced every time we are told we are “too sensitive” in the face of bullying, harassment, and social ostracism.

We are silenced every time that non-autistic people treat us as though we’re broken.

We are silenced by every act of disrespect, dismissal, and ignorance we encounter.

But we do not have to remain silent. Corina Becker at No Stereotypes Here has a counterproposal: Make November 1st Autistics Speaking Day. She writes:

[O]n November 1st, Autistic people should speak up and be heard…[I]n the absence of NT voices, Autistics should reclaim the Autism community by communicating in our own ways on our life experiences…I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our “obsessions”…And so, for the intent of raising Autism awareness and battling negative stereotypes about Autism, I call that November 1st be Autistics Speaking Day.

Her proposal mirrors my initial response to hearing about the Communication Shutdown. Flood the social networking sites with our voices. Provide lots and lots of links to blogs by autistic people. If you’re like me, and don’t use Facebook or Twitter, ask that someone you know publish a link to your best blog pieces.

Raise up your voices. Let us be heard.

And for all of you who want to raise “autism awareness,” I have a simple solution: Listen to us.

© 2010 by Rachel Cohen-Rottenberg

46 comments

Working in Harmony with Myself

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2010 by Rachel Cohen-Rottenberg

4 comments

Visual Hearing and Self-Advocacy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2010 by Rachel Cohen-Rottenberg

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Embracing the Social Model of Disability

July 15, 2010 Rachel Belonging, Communication, Community, Disabilities, Self-Advocacy, Spectrum Pride

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

9 comments

No More Disorders: Debriefing from DSM Diagnoses

July 6, 2010 Rachel Ableism, Critiques of Autism Theories, Diagnosis, Self-Advocacy, Sensory Processing Issues, Spectrum Pride

Over the past few months, I’ve found myself moving further and further away from the mental health profession and its view of the world. It’s always difficult to know how these things begin, especially for someone like me, who spent many years in front of therapists. For a long time, psychotherapy helped me. It gave me a language with which to express the abuses of my childhood. It allowed me a safe place in which to work out the ways in which the trauma was affecting my life. It helped me to move beyond being a victim to a survivor, and then it helped me move beyond being a survivor to simply being Rachel.

So where did it all go wrong between the mental health profession and me? I’m not sure it did. As is my history with most large groups, I just outgrew it. And once I outgrew it, I began to see all the ways in which its definitions were still limiting me, because I hadn’t dislodged those definitions from my brain.

The process of debriefing from the mental health profession began when I was still in therapy. I had a conversation with my therapist in which I began to realize that the paradigm I was developing was altogether different from the one in which he was comfortable. We were talking about diagnoses, and I was still very much wedded to the idea of having one—or so I thought. The conversation went something like this:

Me: When you write up your paperwork about our sessions, do you include a diagnosis?

My therapist: No.

Me: If you had to give me a diagnosis, what would it be?

My therapist: Well, you definitely have a mood disorder.

Me: I do?

My therapist: Yes.

Me: How do you define that?

My therapist: Well, you’re anxious and sad a lot.

Me: That means I have a disorder?

My therapist: Yes.

Me: But look at my situation. I’m dealing with being disabled in mid-life. The world is not set up to bring someone like me into full membership. In fact, I feel invisible most of the time. It makes me sad. I’m grieving. Anyone would feel sad and upset in that situation. Why does that mean I have a disorder?

My therapist: Because it’s your problem.

Me: What do you mean it’s my problem? I live in a society that renders me invisible. Why isn’t it society’s problem?

My therapist: Because it’s your problem.

Me: But I can’t solve it alone. I realize that I have to deal with what I’ve been given, but you can’t possibly expect me to just bear up cheerfully under the weight of all this difficulty. There’s a relationship between me and the world here. What about the world’s dysfunctionality? Why is this all on me?

My therapist: [insert patronizing therapist look here]

Me: Do you understand what I’m saying?

My therapist: Yes, and it’s still your problem.

Me: I can see we’re not getting anywhere.

I left therapy soon afterward.

I’ve thought of this conversation a great deal over the past few months. To my mind, it encapsulates everything that is wrong with the mental health profession:

1) Having a human emotion such as sadness, grief, anxiety, or anger in response to an ongoing traumatic, life-changing, unjust, or otherwise maddening situation is evidence of a disorder.

2) The medications I was taking were never on the table as a cause of my anxiety and depression. (As it turns out, they played a major role).

3) We don’t need to talk about disabilism, its impact on people, and how we need to change it.

4) People become transformed into patients and put into diagnostic boxes.

5) We only need to talk about how screwed up the patient is and how we need to change the patient.

Over the course of my life, I’ve been labeled (officially and unofficially) with depression, general anxiety disorder, post-traumatic stress disorder, Asperger’s disorder (also known as an autism spectrum disorder), and sensory processing disorder. And next week, I’m going to an audiologist who will most likely diagnose me with auditory processing disorder.

I can’t tell you how depressing it is to keep collecting disorders like this. (I suppose that means that I have DODDD: Depressed over DSM Diagnoses Disorder.) All these labels have done a huge number on my head. If I’m going to live a full, happy, and empowered life, I need to send these diagnoses back to where they came from, because they are not me and they have nothing to do with me.

Let’s start with autism, since that’s what got me started thinking about this whole issue in the first place. Autism is not a disorder. It’s not a collection of impairments. It’s not a series of deficits. It’s not something that’s wrong with me. It only looks that way because I live in a society that values certain things to the exclusion of others. It values yacking about non-substantive things; I like substantive conversation. It values social chit-chat; I don’t do social chit-chat. It values being loud; I can’t spend any time in loud environments. It values going fast in every way possible; I cannot follow fast speech, fast-moving objects, or fast-moving graphics.

The society I live in is fearful of silence and deliberation. It thrives on mutually agreed upon deceptions. It abhors directness. It does not honor one’s word as one’s bond. It values appearance over substance. It tyrannizes us with the necessity for “positive thinking” above all else, as though it weren’t simply all right to give vent to one’s emotions when terrible things happen and heartbreak is the only sane response. In short, from my point of view, the society I live in is very unhealthy. Does that mean that something is wrong with me? Why? Because I’m in the minority and the majority is always right? Such nonsense.

My acute sensitivities are not a problem in and of themselves. My emotions are not a problem, in and of themselves. My post-traumatic stress issues are not even a problem, in and of themselves. All of these things can be a source of great power and heartfelt service to others if I use them properly. All of these things only become a problem when they go against an arbitrarily defined idea of “normal.” Then I get people trying to prescribe, discuss, and cure them out of me. But as a friend said to me the other day, please find me this “normal” person, because I haven’t stumbled across him yet. (And yes, the “normal” person is definitely a guy, because being male is part of the standard for “normal.”)

Of all the things that American culture values as “normal,” conformity is the most important. We talk about respecting difference, but if we respected difference, we’d just go around doing it and not talking about it all the time, now wouldn’t we? Here in America, the home of “rugged individualism,” we don’t respect difference. In fact, conformity is Job One. Here’s how it goes: You can only be a rugged individualist if you’re white, male, Christian, heterosexual, and fit into a certain unnamed place on the neurological spectrum. If you’re something else, it gets scary for those rugged individualists. I don’t know why all the rest of us on the racial, gender, religious, sexual, and neurological spectrum should make the rugged individualists faint, but apparently, we do.

When it comes down to it, autistic people, or bipolar people, or schizophrenic people, or traumatized people, or anyone in any other group of people, are just different from a mythic “norm” that simply doesn’t exist. There isn’t a person on the planet who won’t fit into a DSM diagnosis if you look hard enough—or who can’t be misdiagnosed into one if you don’t. They’ve got a diagnosis for everything a human being can possibly go through, which makes life itself a pathology and human beings nothing but walking disorders.

Well, I don’t believe that life is a pathology and that people are walking disorders. To heal this kind of mindset, I’m starting with my own distorted sense of myself as disordered—a distortion I’ve taken on as though it’s a clear reflection of who I am. It’s not. I know that now.

© 2010 by Rachel Cohen-Rottenberg

18 comments

Disabled Like Me: An Autistic Woman in Search of Kindred Souls

May 11, 2010 Rachel Communication, Community, Disabilities, Friendship, Self-Advocacy, Spectrum Pride

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

14 comments

I Am My Own Healer

April 21, 2010 Rachel Ableism, Disabilities, Doctors, Marginalization, Medications, Self-Advocacy, Sensory Processing Issues, Survival

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

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