Journeys with Autism » Sensory Processing Issues

When Medications Do Harm

Rachel — Thu, 10 Nov 2011 05:00:44 +0000

S-O-S Best of the Best (BoB) is a collection of bloggers who come together once a month to write on one topic pertaining to “invisible” special needs, including ADHD, autism, anxiety, sensory processing disorder, and mental illness. I was asked to contribute a post for this month’s topic on the use of medications. The following excerpt from my new book, Blazing My Trail: Living and Thriving with Autism, discusses my experience of taking Lorazepam, a benzodiazepine, and the healing I’ve found since withdrawing from the medication.

My Experience with Lorazepam

“The biggest drug-addiction problem in the world doesn’t involve heroin, cocaine, or marijuana. In fact, it doesn’t involve an illegal drug at all. The world’s biggest drug-addiction problem is posed by a group of drugs, the benzodiazepines, which are widely prescribed by doctors and taken by countless millions of perfectly ordinary people around the world.” — Vernon Coleman

In February of 2005, to treat an increase in my level of anxiety, my primary care doctor prescribed a medication called Lorazepam. Little did I know that taking this drug would send me on a years-long journey of coping with ever-increasing depression, fear, loss of functioning, and social isolation.

Fortunately, in 2010, I changed course and began walking a new road. I engaged in the process of learning about how the medication had affected my life, and I went through the ordeal of weaning off it. As a result, my high level of functioning, my independence, and my zest for life have all returned.

Medication Withdrawal and Other Delights
From early 2005 until early 2009, I took one 0.5 mg tablet of Lorazepam upon awakening in the morning and another before going to sleep at night. After I had been on the medication for four years, another doctor increased the dosage to 0.5 mg in the morning and 1.0 mg at night. By early 2010, I was taking 2.0 mg per day. A third doctor also put me on Zoloft (an SSRI) and Topamax (for migraine prevention), in addition to Lorazepam and Amitriptyline (a tricyclic antidepressant).

By the spring of 2010, I had begun to realize that the medications, far from helping me, were making it increasingly difficult to manage my life. I was crying almost every day and I was nearly housebound. So I began the process of weaning off all of them — without medical supervision. My primary care doctor had fired me from her practice after I asked for accommodations for my disability, and it took me over a month to find another doctor who would accommodate me and guide me through the weaning process.

Meanwhile, I was on my own.

Tapering off Zoloft, Topamax, and Amitriptyline posed no problem whatsoever. Quitting Lorazepam, however, was another story. After attempting to withdraw from Lorazepam by decreasing my dosage by 0.5 mg per week, I suffered an acute reaction. I began to
have a tremendous amount of anxiety, and my sleep worsened. After I stopped taking the medication altogether, I hardly slept for two nights. I was sweating through my clothes. I was crying and frightened. I was in so much physical pain that it was almost unbearable. I felt as though my body and mind were coming apart. I found myself pacing up and down the floors of our house saying, “Misery, misery, misery.” Without a physician to consult, I couldn’t understand why the withdrawal was having this impact.

With nowhere else to turn, I went online and looked up information on how to taper off Lorazepam without pushing myself to the edge of sanity. When I did, I found out that it’s a benzodiazepine and a tranquilizer. In other words, it’s in the same category as Valium and Librium, and it’s highly addictive. In fact, in 1975, the U.S. Department of Justice demanded that benzodiazepines be classified as schedule IV drugs under the Controlled Substances Act.

And yet, this medication had been prescribed for me by three different doctors — even after I had told them, in no uncertain terms, that I absolutely did not want to take anything narcotic or addictive. What part of that statement did they not understand? Or did they just not know what Lorazepam does?

As I soon found out, I was not alone in suffering acute withdrawal symptoms. According to Professor Malcolm Lader, member of the UK Committee on the Review of Medicines, Lorazepam is a particularly difficult drug to withdraw from. “When somebody comes into my office and says that they’ve been trying to stop their Lorazepam,” he said, “my heart sinks, because I know I shall have twice as much of a problem as getting them off, say, Valium. The symptoms are more severe, they’re more persistent, more bizarre, and people are much more distressed by them.” (Ashton, “A Problem”)

In my online travels, I found a support site for people seeking to withdraw safely from benzodiazepines — and I learned that, when done properly, the process takes six to 12 months. So, in early May of 2010, I put myself on a stabilization dose of 1.5 mg per day, and I found myself able to sleep and to tolerate being in my body again. After three weeks, I began tapering very slowly, cutting my dosage by very small decrements, until I finally finished my taper, under the care of a new primary care doctor, eight months later.

Suffice it to say that, even over the course of a slow taper, the withdrawal process was brutal. Every time I made a cut in my dosage, I experienced extreme amounts of muscle pain, insomnia, anxiety, depression, and exhaustion. I was determined to rid Lorazepam from my body, though, and by the grace of God, I have.

But the havoc this medication wrought over the years I took it is, unfortunately, an all-too-common effect of benzodiazepines.

Daily Interdose Withdrawals
Lorazepam is a short half-life benzodiazepine. On average, the dose reaches its peak blood levels in about seven to eight hours. As I came to understand how quickly the concentration of the drug in my bloodstream was falling each day, my experience of the previous four years started to come into focus. Because I had been taking the medication only in the morning and in the evening, I had been going through interdose withdrawals on a daily basis, with all the same symptoms that would attend my eight-month taper.

That’s right: I had been having withdrawal symptoms every single day for four years. No one had ever warned me about how the medication worked, so I couldn’t figure out why I was on such a physical and emotional rollercoaster ride. Nothing in my life seemed to account for it, and the only response from my prescribing doctors was to increase my dosage.

These increases did not work. In addition to the impact of falling blood concentrations, daily withdrawal symptoms occur because of the tolerance that the body develops, very quickly, to the drug itself. As Dr. C. Heather Ashton writes in Benzodiazepines: How They Work and How to Withdraw, these drugs “lose much of their efficacy because of the development of tolerance. When tolerance develops, ‘withdrawal’ symptoms can appear even though the user continues to take the drug.” (Chapter II)

Because they quickly become ineffective and trigger daily withdrawal symptoms, benzodiazepines cause a host of problems, many of which they were intended to manage. In early 2009, after four years of benzodiazepine use, I exhibited difficulties common to benzodiazepine users. I was crying on a regular basis. I was falling into a depression unlike anything I had ever experienced. My anxiety was nearly paralyzing. And I had become almost housebound. The outside world felt overwhelming, and going out triggered both fear and exhaustion.

All of these symptoms amount to a textbook case of the impact of benzodiazepines. In her research, Dr. Ashton determined that people who use these drugs become ill with a number of psychiatric conditions. “Many patients,” she writes, “find that anxiety symptoms gradually increase over the years despite continuous benzodiazepine use, and panic attacks and agoraphobia may appear for the first time after years of chronic use.” She adds that long-term benzodiazepine use can cause depression in people with no history of it and can aggravate depression in people already suffering from it. (ibid, Chapter I)

Heightened Sensory Sensitivity
As a person with autism, I found that all of the symptoms that attend benzodiazepine use were exacerbated by the impact of interdose withdrawals on my sensory functioning.

By early 2009, I was more sensory sensitive than I had ever been in my life. Sometimes, my skin felt like tissue paper; at other times, loud noises were enough to send me into physical pain that took me days to recover from. Light seemed very bright, and I began wearing sunglasses, even on winter days. I became overwhelmed by this sudden severe spike in sensitivity, and every foray into the outside world took all the courage and energy I could muster. My level of functioning decreased significantly. Most days, I just stayed home. I couldn’t figure out what was happening.

Then, I read Dr. Ashton’s findings on benzodiazepine withdrawal and sensory sensitivity. She notes that “a characteristic feature of benzodiazepine withdrawal is a heightened sensitivity to all sensations — hearing, sight, touch, taste and smell. When extreme, these sensations can be disturbing.” She describes one woman needing to stop all the clocks in her house because their ticking seemed unbearably loud. Others have had to wear dark glasses because ordinary light seemed “dazzlingly bright.” (ibid, Chapter III) I’d finally found an answer to the question of why my sensory sensitivities had increased so dramatically in a relatively short period of time: the daily interdose withdrawals were sending my already acutely sensitive system into overdrive.

After four years of benzodiazepine use, I could barely socialize at all. I felt very isolated and I suffered from severe levels of stress that were lowering my levels of functioning. As I learned about the havoc that these drugs wreak, I considered myself lucky to be tapering off them before they stole any more years from my life.

Recovering from Benzodiazepines
The good news is that my functioning and my quality of life have improved dramatically since withdrawing from Lorazepam. Just halfway through a difficult taper, I found my mind becoming clearer and my mood lifting. I felt more physically and emotionally resilient than I had in years.

As my taper progressed, I began to feel alive again. I still had my sensory-sensitive “I don’t want to go anywhere” days, but even on those days, I forced myself to go out for a walk, just to keep intact my connection to the world. In so doing, to my great surprise, I found my connection to the world not limited to human beings, but to all of creation. I began to walk and appreciate the trees, the colors, the breeze blowing — even the humid weather of a New England summer. I carried my camera with me everywhere and I took pictures that enabled me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world became a fascinating place. Ultimately, I entered three of my best photos in a local contest, won second prize, and had the pleasure of seeing my work displayed in town with that of other photographers.

Since I’ve withdrawn from the medication entirely, the positive effects have only increased, and my sensory sensitivities have quieted down appreciably. I go out every day, in any weather, even in winter. I’ve made new friends and rekindled relationships with old ones. The depression and agoraphobia are both entirely gone, and my high levels of functioning and independence have returned.

My experience is not unique. In 1991, Karl Rickels, a researcher at the University of Pennsylvania School of Medicine, reported that patients who had gotten off benzodiazepines were doing “significantly” better than those who had failed to do so. A few years later, he found that after long-term users withdrew from benzodiazepines, they “became more alert, more relaxed, and less anxious, and this change was accompanied by improved psychomotor functions.” (Whitaker, 136-137)

As for Dr. Ashton, she found that agoraphobia in her patients disappeared within a year of withdrawal, even in patients who had been housebound. Furthermore, most users experienced a dramatic increase in quality of life after withdrawal:

“Clinical experience shows that most long-term benzodiazepine users actually feel better after coming off the drugs. Many users have remarked that it was not until they came off their drugs that they realised they had been operating below par for all the years they had been taking them. It was as though a net curtain or veil had been lifted from their eyes: slowly, sometimes suddenly, colours became brighter, grass greener, mind clearer, fears vanished, mood lifted, and physical vigour returned.” (ibid, Chapter II)

When I was on benzodiazepines, my emotions were scattered, my sensory sensitivities were through the roof, and I found it difficult to think clearly. Since I’ve stopped taking them, my emotions have become much more moderate, positive, and under my control; my sensory sensitivities have become much more manageable; my thoughts have become sharper by the day; and, best of all, my passion for living has returned.

References

Ashton, C. Heather. “Benzodiazepines: How They Work and How to Withdraw.” benzo.org.uk. August 2002, revised. Accessed 21 June 2011. http://www.benzo.org.uk/manual/

—-. “A Problem with Lorazepam?” benzo.org.uk. 1988. Accessed 21 June 2011. http://www.benzo.org.uk/ashloraz.htm

Coleman, Vernon. Life without Tranquillisers. Large print ed. Bath, England: Chivers, 1990.

Whitaker, Robert. Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America. New York, NY: Crown Publishers, 2010.

Music and the Positive Side of Auditory Processing Disorder

Rachel — Sat, 11 Jun 2011 23:48:44 +0000

Most of you know my challenges with my auditory processing condition: difficulties filtering sound, fatigue when trying to carry on a conversation with too much ambient noise, words getting jumbled in the midst of too many competing conversations, processing delays deriving from the visual nature of my hearing, and so on.

In general, sound always feels very close to me. If I’m in the midst of very loud sound, such as the loud rock ‘n roll music they play at the local pharmacy, I literally feel as though the sound is inside me, and as though I am inside the sound. It’s exhausting. I can’t concentrate, and it takes my nervous system some time to calm down afterwards.

Since auditory processing has been my greatest challenge, I’ve been thinking lately about whether there is an upside to my condition. Certainly, in another culture, having acute hearing would be a plus. I’d undoubtedly be the first to hear the tiger approaching the village, or to perceive some other sign of impending disaster. But in a noisy culture like our own, I hadn’t been able to see much benefit in it.

And then I started thinking about my relationship with music.

It’s not something I’ve talked about a lot, perhaps because I take it so much for granted. When I was a child, I was a classical pianist. I didn’t just play the piano. I was a pianist, performing in recitals in Boston and playing in statewide piano contests, one of which, to my great surprise, I actually won. I began playing when I was eight years old, and I was told right away that I had a lot of talent.

It wasn’t that I was more technically proficient than the next person. It’s that I was musical. I felt the music, from the inside out.

Back then, I couldn’t see what the big deal was. To me, it all came naturally, and I could never understand the fuss. But now I think I do. I had the same experience back then that I have in the pharmacy with the loud rock ‘n roll music — the music was inside me, and I was inside the music. The only difference was that the music was classical, and that the sound of the piano thrilled me. The melodies, the harmonies, the timbre, the volume — all of them were a delight to my auditory system.

I used to play Chopin and cry. I used to play Beethoven and feel as though I were communing with his spirit. It was a complete physical, sensory, and emotional experience. It took me over and spoke to my soul. It resonated through me.

As a child, of course, I thought that everyone experienced music that way.

I stopped playing the piano because I became very stressed out by all the performing. I was an extremely shy child and received no guidance for how to handle the pressure. Performing brought with it perfectionism, and perfectionism created pressure, and pressure ultimately created a lack of enjoyment.

So I turned to singing. People have told me that I have a good singing voice, but I’ve never felt that I was particularly talented as a singer, so there has never been any pressure involved. I just enjoy it, and other people seem to enjoy it, too. As an adult, I’ve mainly sung Jewish liturgical music — first as a prayer leader when the rabbi at my local synagogue was on sabbatical, then as an assistant when my husband was the spiritual leader at my next synagogue, and then as a lay rabbi when my husband and I led our own services some years back. I’ve sung at weddings, life-cycle events, and weekly services.

Whenever I sing, whether the music comes from another culture or my own, I am in the music, and the music is in me. I am in the history, the culture, the laughter, the sorrow, and the struggle of the people who came before. All of it takes up residence in my body, my mind, and my soul.

I’ve struggled with whether I’d want my auditory processing condition cured. I’ve decided that I wouldn’t. I’d lose the gifts along with the difficulties. I’ve adapted quite well to the difficulties, and the gifts are an essential part of who I am.

Autism in the Classroom: Personal Reflections

Rachel — Sat, 30 Apr 2011 11:31:52 +0000

Earlier this month, a teacher at a school in Florida contacted me about helping with a training session. The training will take place on May 5. She wanted to get an insider’s perspective about navigating the school environment as a person with autism, and she was hoping that I would put together a video about my childhood experiences in the school system.

Of course, I said yes. I had never put together a presentation like this one before, but it was a lot of fun to do, and I’m very happy with the result.

I’ve love to hear your comments. If you are a parent or a teacher, did you find the information helpful? And if you are autistic, how do you remember your own school experiences?

—

For those with visual difficulties, and for others who prefer reading text, here is a transcript of the video, slightly edited to remove references to the photographs in it:

Autism in the Classroom: Personal Reflections
A Presentation by Rachel Cohen-Rottenberg

The Lewis School
Valparaiso, Florida
May 5, 2011

My name is Rachel Cohen-Rottenberg.

I’m a 52-year-old wife, mother, writer, and artist with Asperger’s Syndrome. I was diagnosed at 50. I’m married to a wonderful man named Bob, and I have a beautiful daughter named Ashlynne.

In order to give you some insight into what your autistic students might need in the classroom, I’d like to share my memories of my years in elementary school.

I was raised in Brookline, Massachusetts. I attended the Edith C. Baker School, a public elementary school, from the second grade through the eighth grade.

I had symptoms of autism, but no one picked up on them.

As a child, I was extremely sensitive to sensory stimuli, especially sound, and I felt the emotions of the people around me acutely.

Fascination and alarm: Those two words describe the nature of most of my responses to the physical and emotional world throughout my childhood.

I did not speak a word until I was 2 1/2, but I could read when I was three years old. I taught myself.

As a child, I had great difficulty making eye contact. Even now, when I look into a person’s eyes, I have such a profound experience of the person that I feel his or her soul coming directly at me. When I was a child, looking into the eyes of another person was an overwhelming experience.

My small, very conservative school gave me the structure to indulge my fascination with the world while protecting me from the kinds of experiences that inflamed my anxiety.

At school, we had many, many rules, and they governed nearly every aspect of the school day. We had rules for how to enter the cafeteria, with whom to sit, and at which table. We had rules for how to form a line and use the proper side of the stairway. We had rules for what constituted proper school attire.

The rules created a predictable, structured environment in which I could thrive.

My school environment was very spare and quiet. We did not have all the visual and auditory distractions of today’s world — no iPods, no computers, no cell phones. All of our learning was text-based. For me, it was the perfect environment.

My teachers demanded respect from all of us. And they did an excellent job of returning it. But they were not my friends. They were better than friends. They were allies. The vast majority were kind, patient, and supportive.

My teachers created an environment in which I developed faith in myself. I could never have achieved so much without this solid basis.

As you work with your students, please keep in mind that autism is not intrinsically a condition of deficit, but of overabundance — an overabundance of sensitivity to sensory and emotional phenomena.

I spend every day living with an experience laden with perception. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world, in every detail: color, texture, pattern, and motion.

The intensity and acuity of autistic perception causes many of the behaviors that can be so perplexing to non-autistic people. Stimming is a way to calm our nervous systems, and it serves to block an abundance of input by creating an abundance of output. Concentrating on visual or auditory patterns allows us to bring some measure of control to our perceptions of an overstimulating world.

Living with this level of intense perception is a great deal of work. Please know that your autistic students are working very hard, all the time, to filter and process sensory and emotional information.

It may not look as though they are working hard. Please look beyond what you see to what lies beneath the surface. When you do, you will go a long way toward helping your students succeed.

Thank you so much for taking the time to watch this presentation. Please feel free to contact me through my blog, Journeys with Autism (www.journeyswithautism.com),with any questions you might have.

My Most Recent Audiology Assessment

Rachel — Thu, 16 Dec 2010 22:43:42 +0000

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.

Grieving the Dream and Living What Is

Rachel — Sat, 09 Oct 2010 19:03:14 +0000

When I first began delving into the words written by parents of autistic children, I found myself troubled by phrases like “the heartbreak of an autism diagnosis.” At the time, I was just beginning to develop a positive identity as an autistic person, and I felt offended that people would feel heartbroken at having a child like me. At the same time, I recognized that the grief was sincere, and that I couldn’t possibly tell someone that his or her feelings were wrong. I’ve been known to argue with an outlook or an idea, but not with a feeling. Feelings, in my view, are not open to disagreement.

I’ve come to understand the grieving, I think. I’ve come to understand it because, having received a diagnosis at 50, I’ve gone through my own grieving process. And what I’ve come to learn is that my grief is not about being autistic. I don’t feel that it’s unfair to have been born autistic. I don’t feel as though some terrible tragedy has descended upon me in mid-life. I don’t curse my fate and wish I were just like everyone else. I’ve never asked who I might have been were it not for my parents’ abuse, and I have no inclination to ask who I might have been without being autistic. Being autistic is intrinsic to my life experience, to my insight, and to the gifts I bring. The One Above made me just as I am, and I respect that.

And yet, I grieve. I grieve the loss of the person I thought I was—the person who could navigate the world like everyone else, the person who could do anything she wanted if she worked hard enough. I grieve the things that I’ve always wanted to do but am physically unable to do. I grieve the loss of my apparently privileged status as an apparently neurotypical person. In short: I’m grieving what was never there to begin with. I’m grieving an idea of myself and of my place in the world. I am not grieving what is or what was. I am grieving what doesn’t exist and what has never existed, except in my own thoughts.

This understanding came into focus in the days after I met with a woman at a local civil rights organization. She works in the area of disability rights, and I approached her in my role as the leader of the Vermont chapter of the Autistic Self Advocacy Network (ASAN). When we set up the meeting, I told her about my auditory processing condition and about the kinds of accommodations I need—namely, a quiet space and a slow conversational pace. She was quite welcoming and offered to meet anywhere I wanted so that the environment would work. We ended up meeting in her office, which is just five minutes from my house.

In some ways, the two-hour meeting went very well. She was very friendly and very dynamic. I learned that she works as an advocate for parents, attending IEP meetings and helping to protect the rights of children. I learned that she does a great deal of anti-bullying and anti-harassment work, running compliance trainings for schools throughout Vermont. I learned that, as a person of color, she had been through severe racial harassment as a student, and that much of her work is powered by the conviction that no child should ever go through bullying at school.

The downside? She spoke very, very fast and provided a great deal of verbal information. I was able to see, right away, that asking her to slow down would not have worked. I don’t think she would have been able to do it. Her work is very stressful, and she was clearly up to the task, but what made her so good at her work also overwhelmed my auditory processing system. As the meeting progressed, I felt more and more overstimulated, and less and less able to find the words I so badly wanted to say. And because I’ve never seen a nonverbal signal in my life, words were all I had. Without nonverbal shortcuts, the process of listening and speaking became exhausting. I probably should have cut the meeting short, but I wanted so much to make connections with other people working on disability rights that I stayed glued to my chair. Needless to say, I needed a few days after the meeting to get my nervous system back into a state of calm and balance.

Helping advocate for the rights of parents and children, especially bullied, harassed, or otherwise vulnerable parents and children, is something I’ve wanted to do all my life. I have a fire inside me when it comes to injustice, and much of the recovery work I’ve done for 25 years has been aimed at being able to go out there into the world and fight the good fight. I want to go to IEP meetings and be a supportive advocate; I want to be able to walk into any situation and do workshops and trainings. When it comes to making right the wrongs of the world, I’ve got the spirit of a warrior. And yet, no matter how patient, how brave, and how intelligent I am, I can’t make my auditory processing system do what it isn’t made to do. I can’t change, by an act of will, the way I process speech and sound. I can’t see a nonverbal cue, and no amount of explaining is ever going to get me to.

As I’ve looked at what happened at the meeting, the truth has become clear: I am an experienced and conscientious researcher, writer, and editor. I am highly intelligent. I am very sensitive. I am absolutely tenacious. But there is something I cannot do: I cannot implement my work in a chaotic or dysfunctional environment. In the quiet of my own home, I can put together a fact sheet about children’s rights. I can interview people and develop materials on bullying and its impact. I can help to create an anti-harassment workshop. I can gather large amounts of information and organize it in a myriad of ways. I can do the behind-the-scenes work, but I cannot go into the thick of things and be effective.

It’s not that I’m incapable. It’s that I cannot find an environment in which it would work. An IEP meeting is not such an environment. A compliance training is not such an environment. Any situation in which people are under stress, not at their best, and talking at cross-purposes is not such an environment. In those environments, almost by definition, accommodation for my disabilities becomes impossible. After all, if the situation were friendly, functional, and fair, there would be no need for me to be there in the first place.

This realization represents the end of a decades-long dream, and there’s sadness there. I imagine that it’s an emotion similar to what a parent feels upon receiving an autism diagnosis for his or her child; it’s the end of a dream, and there’s sadness there, too. I remember how many years I planned for the birth of my daughter, how many years I dreamed of all the fun we would have, how many times I told myself that I couldn’t determine the future and yet found myself looking forward to a multitude of things. Being autistic, I might have had an easier time with an atypical child than most, because I’ve always been the one who is different. But a typical parent has typical dreams, and there is grief in letting go.

In large part, those dreams have to do with life being safe and welcoming to a child and, as we all know, the world is often not a safe and welcoming place for autistics. I have been bullied, and ignored, and left behind, in many different ways, all my life. And yet, I don’t wish I were different. I wish the world were different. I wish that more people defended the bullied rather than the bullies; I wish that more people took the time to get to know me and find out what a great good friend I am; I wish that more people were sensitive to all the things that autistic people need in order to live our lives with more joy and less fear, more inclusion and less loneliness.

The grief I feel is for what never was and for what has yet to be. It’s not for who I am. And I imagine that, for parents, the grief is for the dreamt-for child and the dreamt-for plans; it’s for the opportunities and the safety and the welcoming that the world does not yet make possible. And it’s absolutely right to grieve that child and those plans and the state of the world as we know it. But grieving all those things is different from grieving that we are autistic. I want to say to parents, “The child who is here does not need to be grieved, any more than I need to be grieved. There will be new dreams, different dreams, dreams that are based on what is real—not on the doomsday prophecies of doctors with God complexes, not on research that barely scratches the surface, but on the child you see in front of you, whose life you are committed to nurturing. That’s the only basis for a dream—your flesh-and-blood child, longing for a way to manifest his or her reason for being in the world.”

Each of us is here for a unique purpose that no other person can ever serve. There is so much to be done. So let us grieve our dreams. Let us carry our grief with dignity. And let us get to work.

Horse-Assisted Therapy and Eye Contact

Rachel — Sun, 05 Sep 2010 14:37:31 +0000

In the past couple of months, I’ve begun horse-assisted therapy at Miracles in Motion in Keene, NH. I decided to begin the work after reading about the story of Jaycee Lee Dugard, the California woman who was abducted at the age of 11 and held against her will for 18 years. One of the ways in which she and her family are working to repair trust is through horse-assisted therapy. When I first read about the therapy, I immediately realized that it was something I’d love to do. Between the trauma history of my childhood and my autistic lack of guile, trust has always been a big issue for me. Besides, I love working with farm animals and, since moving off the farm in 2008, I had been missing them a great deal. So I decided to give horse-assisted therapy a try.

Miracles in Motion exists to help children and adults with a range of goals, from trauma-related healing to working with physical, cognitive, and intellectual disabilities. As I’m finding, the therapy isn’t just helping with trust issues; it’s helping with physical balance, sensory integration, and general self-confidence as well. I absolutely love horses, but I have always been terrified of them—care of my mother, who instilled in me the fear that if I got on a horse, it would throw me off and kill me. Needless to say, I’ve overcome that fear. I’m not only able to get on a horse, but I’m also able to ride while stretching my arms in the air and twisting from side to side! If I could go to Miracles in Motion every day, I would.

A few weeks back, I had an interesting conversation with my instructors, Victoria and Frank, about how to make eye contact with horses. Victoria began by telling me that predators tend to have eyes in the front of their faces and that they stare at their prey in a very focused way. Prey animals, however, tend to have eyes on the sides of their faces, allowing for a great deal of peripheral vision that increases their safety. She encouraged me to try and look at the world like a horse by relaxing my focus and having “soft eyes” that could take in all the information in my peripheral vision. She then told me that I have to use soft eyes when looking at a horse, because if you make very focused eye contact with a horse, the horse will think you’re a predator, break eye contact, and try to get away from you. I had already noticed that making direct eye contact with a horse made the horse very uncomfortable, but I hadn’t understood why.

I immediately began to understand my own difficulties with eye contact. In American society, people tend to make eye contact somewhat aggressively. Most people do not use “soft eyes.” As an autist, I walk around the world with a very sensitive system that can feel assaulted by such things as loud music and sudden bursts of noise, nasty words, bullying behavior, deception, harshness, and so on. In other words, in the sensory and emotional world, I am more akin to vulnerable prey than aggressive predator. Even though I advocate for and defend myself in order to stay out of the role of victim, I encounter life with enough native vulnerability that what’s considered “normal” eye contact feels threatening on some level, and I instinctively avoid it. It’s not threatening in the sense that most people are predators and mean me harm; it’s threatening in a more instinctual way, such as when a horse evades eye contact with me even though I personally don’t plan to turn her into glue.

As I was talking with Victoria that day, I realized that I have no trouble making eye contact with her at all, and the more I looked into her eyes, the more I realized how soft they are. Then Frank said, “Look into my eyes and tell me how it feels.” His eyes are very soft, too, and I didn’t have a problem making eye contact with him, either. Victoria and Frank have worked with horses for most of their lives, so their eye contact is different from that of most people I have met.

The only other person with whom I can make consistent, comfortable eye contact and still manage to talk is my husband. He, too, has very soft eyes—not from being around horses, but because he’s such a gentle and non-judgmental person. I have an easier time making eye contact with family and friends than with strangers, probably because I’ve had a long enough experience of trust with them that my instincts aren’t on alert.

Any sense of being fixed by someone’s eyes, however, generally feels aversive, and I avoid it.

Visual Hearing and Self-Advocacy

Rachel — Thu, 19 Aug 2010 12:00:41 +0000

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.

No More Disorders: Debriefing from DSM Diagnoses

Rachel — Tue, 06 Jul 2010 17:28:00 +0000

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.

My Father and Selective Deafness

Rachel — Tue, 29 Jun 2010 19:15:00 +0000

I’ve had an epiphany lately regarding my father and some of his formerly most mysterious and annoying habits.

As I’ve written before, it’s apparent to me that my dad was on the spectrum. Of course, no one ever talked about such things back then, so when I was growing up, the family explained my father’s oddities by saying that he was hard of hearing. Of course, he never went to an audiologist or had hearing aids or any of that nonsense. My mother used to say that he’d been born with nerve damage in his ears, and that no one could do anything about it. I’m virtually certain that she made up that story to explain the inexplicable, since she made up a lot of stories, and she believed them, too.

My father’s hearing issues were very aggravating to me as a kid, because every single time I said something, the very first thing out of his mouth was, “What?” Every single time. It was a reflex. It didn’t matter how loudly or how softly I spoke, or what else was happening in the room. He’d always say, “What?” When I had the patience, I’d repeat myself, in exactly the same tone of voice, and then he’d hear me. When I’d get exasperated with him and say, “Why aren’t you paying attention to me the first time?” his response would always be the same: “You’re mumbling.”

And that response would send me into the stratosphere, because I Did Not Mumble. No one else in the entire world ever said I mumbled. I knew that I was enunciating the English language perfectly well, and I still get an adrenaline rush just thinking about my father telling me otherwise. He knew how much it bothered me because, after awhile, he took on a new annoying habit: when he couldn’t hear me, he’d say “You’re mumbling,” and he’d laugh. And then I’d say, “I am not mumbling. You are not hearing me.” But it never made a difference. It was always “What?” and “You’re mumbling.” By the time I left home, it had nearly driven me up the wall and back.

For several years afterward, I continued to buy the idea that my father was hard of hearing. Then, one day, when my parents were visiting in California, everything changed. We were all in the car; my father was driving, and I was in the back seat. There was lots of ambient noise: highway noise, the sound of the car wheels running over the pavement, and everything else you hear in a car going 65 miles per hour on a six-lane freeway. Nonetheless, I said something to my father. I can’t even remember what it was, because I figured he wouldn’t hear it anyway. But, miracle of miracles, he heard me. The first time. Without saying “What?” or “You’re mumbling.” He just heard me, like a regular person, and he just answered me, like a regular person.

I suppose I should have felt angry, as though he’d been playing some sort of weird game all those years, but I wasn’t. I intuitively knew that he really had heard me clearly at that moment, and that he hadn’t been able to hear me before. I became fascinated by the contradiction, but I really didn’t know how to explain it.

These days, though, it makes perfect sense to me. After all, when I go out into the world, I often block my hearing—with earplugs, a Peltor headset, or both. Today, I’ve been able to wear just my earplugs, and hear people as though they’re at a distance, and say a few words in order to get my errands done. But tomorrow, when I go to my Voc Rehab appointment, I will have to wear the headset in order to block out ambient noise and allow myself to concentrate. In other words, I render myself more or less able to hear as needed.

I’m now realizing that my father must have had the same amount of auditory sensitivity and processing difficulty that I have, and that he intuitively came up with a survival strategy. Somehow, he selectively rendered himself deaf. It’s as though he just shut down his attention and literally couldn’t hear, and his saying “What?” was his signal to bring his attention back up. This strategy also provided him with a way to cushion himself against having to hear everything loud and clear the first time, and thus avoid becoming overloaded by it. It really was quite a brilliant strategy, and I’m in awe that he was able to pull it off. As for me—I simply cannot let my auditory attention wane. It’s always on alert, unless I block my ears. Then, even if I can hear somewhat, the person talking feels further away and the sound of his or her voice doesn’t penetrate my nervous system with anything like the same intensity. Somehow, my father was able to give himself the same experience without having to explain why he was wearing a lawnmower headset to go shopping.

My father is now gone, and even if he were still alive, he would not for a moment accept anything that I’m saying. He wouldn’t accept that we were both on the spectrum, he wouldn’t accept that we both had extraordinary sensory sensitivity, and he wouldn’t accept that I couldn’t overcome all of it by sheer force of will. In fact, he’d laugh me right out of the room for even broaching the subject.

So I’m just left with a new understanding of my dad, and it makes me feel closer to him. It consoles me to understand him better now.

Across the Great Divide

Rachel — Tue, 27 Apr 2010 16:20:40 +0000

Bob and I have been having some great conversations lately about the differences between neuro-typical and autistic modes of perception and communication. In the course of these conversations, I’ve felt immensely frustrated, strangely comforted, and very enlightened, sometimes simultaneously. I’ll share the highlights of two of these talks.

The Way Bob Says It Is Not The Way I’d Say It
On Saturday, Bob went to synagogue for the Shabbos morning service, came home for lunch, and then went back for the Torah study in the afternoon. I took a long walk in the morning, in the course of which I met a huge, grey, wonderfully shaggy dog and his person. As you know, I hardly ever take off my headphones and earplugs to talk to anyone, but this dog was just too cool and I had to say something to the woman with him. I knew that I’d last for about a minute or so of conversation, and I did, and it was fine.

The woman who was with the dog obviously loved and appreciated him, and said something like, “You know, he wants to go smell all of these great things and wonders why we can’t smell them, too!” Whoa. Another person who knows that human perception is not all there is. I had been missing these small moments of friendliness with people out on my walks, and as I continued down the street, I realized that I had made the exception for her based entirely on instinct and a sort of childlike delight in her dog. And I thought, “That’s a very good basis on which to make an exception.” When I was done, I didn’t need to go and chat it up with several other people about their canine friends. This dog was an exceptional being, so I made an exception, and it filled me up, and it was fine.

When Bob got home in the afternoon, he told me that he’d run into Fred at shul (the guy who’d magically rendered me invisible) and had “put him out of his misery” concerning my non-response to his email. Fred had copied Bob on his email to me (the one I’d deleted), the email had made Bob “want to weep,” and Bob had gently told Fred that there was nothing he could do to make things better except to keep moving forward. So, of course, the first thing I did was to get defensive about the “want to weep” part, until Bob reassured me that yes, he understood that I was the injured party. And then, of course, the next thing I did was to ask for a blow-by-blow of the conversation, just to make sure that Bob hadn’t put Fred out of his misery without Fred realizing why he was in a state of misery in the first place. I do this a lot, especially when Bob is talking to someone who has been crummy to me. Actually, I’ve been doing it for about eight years now, and it’s gotten old, and boring, and I hate boring, because being bored makes me miserable. This time, though, I’d finally had enough of boring and was able to get beyond making myself miserable. Here’s a synopsis of how the conversation went:

Me: “I’m glad you talked with Fred and resolved things. But did you tell him why things happened as they did?”
Bob: “He understood the whole thing.”
Me: “How do you know that?”
Bob: “I don’t remember all the words. It was clear. He knew what he’d done.”
Me: “But did you use the word invisibility?”
Bob: “No.”
Me: “Why not?”
Bob: “Look, I say things my way.”
Me: “Yeah, but the invisibility thing is really important!”
Bob: [Extremely unsubtle body language that says I'm going to get up and do something else now.]
Me: “Wait, wait, don’t get up! Look, I’m not resolved about this thing. I mean, I told the guy that I needed him to use his words, and that I needed him to be honest, and that I needed him to tell me what was going on, and then he didn’t. Did he understand all that?”
Bob: “Look, I’m not in the guy’s head, and I don’t know what words he’s using to understand things, but he understood that he’d screwed this up and why, okay?”
Me: “Yeah, but how do you know what he understood if he didn’t say so?”
Bob: “I was there. I know.”
Me: “Yeah, but…Oh.”
[Silence]
Bob: “What?”
Me: “This is a neuro-typical thing, isn’t it? You say words, and he says words, and you do this whole nonverbal dance, and you somehow get it, and it’s done, and it’s in your own language. And then you come home and you say it to me. And then I try to translate it back into my language, and it doesn’t translate well.”
Bob: “I think that’s right.”
Me: “You know, from now on, I think you should handle these kinds of conversations. They’re a mystery to me, but you’re very good at them.”
Bob: “Thanks. I try.”
Me: “I know. I don’t give you enough credit.”
Bob: “I know. And you do really well speaking your language to people who understand you. It’s not your fault that neuro-typical people so often don’t understand what you’re talking about, or can’t fathom how sensitive you are or what you need from them.”
Me: “Thank you, honey. I love you.”
Bob: “I love you, too.”

So here was a day in which I came to two very important conclusions: 1) If I’m going to talk to an apparently neuro-typical stranger, keep it short and make sure it’s for a very good reason, and 2) let Bob be neuro-typical and handle things in his own way, because after all, he is completely supportive of my being autistic and handling things in my own way. (I think I’ve got that reciprocity thing down now.)

I Stand By the Side of the Road and I Still End Up In a Crash
The other day, Bob and I were driving down the highway, and I was talking about my frustration with socializing and making friends with neuro-typical people. One of things that became clear is that all of my challenges started showing up when I left the controlled situation of the workplace in 2003 and entered the completely chaotic situation of unstructured human interaction.

In the software industry, I did very well. I lasted 15 years, much longer than I’ve lasted in any other group of people. Because it was a limited, goal-oriented situation, it gave me the opportunity to do one of the things I do best: observe process. I figured out how meetings worked, what people needed from me, how to set limits, how to keep from working overtime, how to get what I needed to do my job, and so forth. I moved from job to job, but each time, I moved to a better job, and I did so based on my reputation, both personal and professional. Plus, working in the software industry coincided with a number of other successes: marriage, parenting, buying a house, and becoming part of a neighborhood.

And then, I left work to become a full-time mom and oy, all my troubles started. All of a sudden, I couldn’t navigate. True, I had entered hostile territory in my old community, but not every single person there was hostile, and a neuro-typical person might have handled the situation with more, shall we say, subtlety? I handled the situation with almost nothing except honesty and directness, because after all, isn’t that what Judaism teaches? Thou shalt not lie? And isn’t that what all my years in therapy had led me to believe I was destined to do—state my needs and feelings with clarity and without apology? So what was the problem? Why was everyone so upset when I kept speaking my mind and getting down to business? The more I tried, the worse it got. I’m not saying that I was to blame. Not at all. I’m just saying that I didn’t understand how to do it any other way.

But now, I’m starting to see that the way I do it has caused me to collide with other people and has allowed them to collide with me. When it’s over, there’s usually a scene of twisted metal and steam rising from cracked radiators, and I’m always wondering what the hell happened. Again. Just like last time. Over. And over. And over. And over.

In the course of my conversation with Bob in the car, I began to understand why this pattern has gone on for so long, and that I am already moving to a different paradigm. Here’s basically how the conversation went:

Me: “I know that neuro-typical people often find me rather blunt and feel offended by me. And it’s very weird to me, because in my sensory and emotional experience of the world, I feel like I’m getting hit with a blunt instrument a fair amount of the time. It’s not that everyone has ill will toward me. They don’t. It’s just how acutely I feel things. Most people don’t know how sensitive I am, and so they can’t understand how they affect me. And I don’t understand how important all their social rules and nonverbals signals are, so I don’t understand how difficult I can be for people to deal with. I just think that all that social crap—I mean stuff—is bullshit.”
Bob: “I know. There definitely seems to be a difference in the way that neuro-typical and autistic people experience bluntness.”
Me: “So how do neuro-typical people experience it?”
Bob: “Well, for us, there are two levels to navigating socially. One level is knowing what you want. The other level is trying to make sure not to crash into people’s sensibilities. It’s as though social life is like driving down the highway we’re on. You have to know where you’re going and how to get there. But if that’s all you know, you’re going to cause an accident, because you won’t be looking in your rearview mirrors, you won’t be watching the flow of traffic, you won’t know when to slow down, or speed up, or let someone into the lane, or pass them. Everything works on a highway if everyone is paying attention to everything. But now and then, you get someone going 95 miles per hour who insists on switching lanes constantly, driving in the breakdown lane, and getting past everyone, because he just has to get where he’s going and that’s all he can think about. That’s when the flow is threatened and people start crashing into one another.”
Me: “Okay, so I recognize myself in the person who just wants to get there. I recognize myself so well that I’ve learned to hang back in a major way and let everyone else go around me. In fact, I’ve gotten out of the damned car altogether, and yet, I still end up in crashes.”
Bob: “What do you mean, exactly?”
Me: “Take the situation with Fred. I didn’t walk into a complicated social situation with Fred. I kept it simple. I know better than to drive a car on a highway. I’ve learned my lesson. I wasn’t even in a car. I was standing by the side of the road, looking at the trees, waiting for him to get done driving hither and yon and meet up with me. After awhile, I realized he wasn’t going to come by and get me, and that made me sad, but I dealt with it. And then, all of a sudden, he broadsided me. I was just standing by the side of the goddamned road, looking at the trees blossoming, and the next thing I knew, I was lying next to the retaining wall and my head hurt really bad.”
Bob: “I see what you mean.”
Me: “You know, whenever this has happened in the past, I’ve thought, well, screw this, I’m getting off this highway and finding me another highway, because the people on this highway are crazed. And then I go and find another highway, and I stand by the side of the road, and bang! There I go, flying through the air, just when I’m enjoying the view. And I think, well, screw this, I’m getting off this highway, because the people on this highway are crazed. But now, after all these years, I can’t keep looking for new highways. They’re too dangerous. I imagine that there must be state police shouting at me on their bullhorns that pedestrians are not allowed on the roadway, and there must be people leaning on their horns as they swerve away from me, and the ones who come a little too close must be larger than they appear in the mirror, but somehow, I can’t see or hear them.”
Bob: “I think that’s true. So what do you do?”
Me: “I need to go find myself a bike path. Not a bike path where people wear spandex and race by you like they’re on the Tour de France. I mean a bike path where people are taking leisurely rides and other people are standing by the side of the road.”
Bob: “Sounds like a plan.”

So how do I find these other souls on this mysterious bike path? Easy. I write an article for my local paper, asking “Where are all the other autistic or otherwise atypical people in this community, because I’ve only met two others, and it’s statistically impossible that we are the only ones here.”

I know, I know. It’s very direct. But that’s just me.