Journeys with Autism

I’ve been struggling in my ASL class, and Michelle’s comment about how visual input can affect auditory processing gave me some insight as to why. While my last post was about my auditory sensitivities overwhelming my visual sense, this post is about what happens when most of the stimuli are visual.

First things first, though: My ASL class, as it turns out, is not as quiet as I thought it would be. While the course syllabus says that there is no talking upon entering the classroom, people are still talking before class. When I asked the teacher for clarification, she said that she doesn’t feel she can ask people not to talk when they don’t know enough ASL to otherwise communicate. I was hoping that they could just be quiet and have the experience of how it feels to have to adapt, but alas, another of my great ideas is just…well, another of my great ideas. Anyway, with my earplugs and headset on, I can still hear people’s voices. I can’t hear words, but I can hear what sounds like undifferentiated noise, and it wears me out before the class even starts. Were I to show up right at the beginning of class, however, it wouldn’t make much of a difference. The teacher jokes around a lot, so there’s a lot of laughter, and it’s quite distracting. Most of the time, I feel exactly as I do in the rest of the world: I wonder why everyone else is making noise when I’m trying so hard to concentrate.

But the problem isn’t just sound. It’s the fact that being in a room full of people is very disorienting. Even if the room were silent for two hours, I’d have all the visuals of people moving around, using their hands, gesturing in nonverbal ways, expressing things with their faces, and thereby distracting the living hell out of me. In the class, I have to focus very hard just to communicate and respond to the simplest signs in the language—signs that I can easily use and understand when I’m watching my ASL DVD, or showing Bob or Ashlynne what I’m learning. I need more structure, more quiet, and fewer people in order to learn and to use what I’m learning.

Unfortunately, the class feels very unstructured and chaotic to me. The description says that we’re supposed to be learning Units 1 through 6 of the book we got, but we’re already three classes into a 12-week course and we’re not even all the way through Unit 1. When I asked the teacher about the homework after the second day of class, she said that she doesn’t give homework, and that we should just study the material in the book on our own. Then, when I asked whether we could use signs in class that we’ve learned from the book, she said no, because not everyone will have learned the same signs. She only wants us to use the signs that she’s taught us in the class so that we can all learn them together. 

I understand what she’s trying to accomplish, but my brain doesn’t work that way. I have to learn things outside of class in order to really understand how to do them; I can’t just pick them up from watching her once a week and remember them when I get home. There is far too much in my visual field for me to be able to discern what I’m supposed to remember. And of course, once I get back to class, I can’t remember what signs she’s taught and what signs I’ve learned from the book.

And then there’s my moderate dyspraxia. I have a lot of trouble watching, imitating, and sequencing moving visuals, and ASL is one long series of complex visuals. While it’s a beautiful language, and I love learning it, I’m also finding it very challenging. When visuals are static, I can focus on them to my heart’s content and see all kinds of patterns and colors. When visuals are moving, it’s very difficult. I can get there, but it takes time and work. I’m willing to put in the time and work, but I need a different learning environment. The present one isn’t working for me.

I finally understand why Aspie kids need IEPs and one-on-one aides. I need educational supports at 51 that just aren’t there in a regular classroom. I’ve emailed my contact at the school about finding some other way to learn and practice ASL. Perhaps someone would be willing to tutor me? I don’t know. Wish me luck!

© 2009 by Rachel Cohen-Rottenberg

Last week, my OT gave me some written information explaining how neuro-typical people process sound and why Therapeutic Listening might be helpful to people with sensory processing issues. One of the articles, A Brief Introduction to Therapeutic Listening, Vital Links 2006, was especially helpful. I’ll do my best to summarize the information from that article and to share my responses. 

Listening: It’s Not Easy
Reading about how neuro-typical people take in and interpret sound gave me a profound sense of the difficulties that Aspies have with auditory stimuli.

Both consciously and unconsciously, human beings constantly monitor the auditory environment. It’s a basic survival skill. For a neuro-typical person, the process of locating and selecting which sounds merit investigation is largely unconscious. Therefore, other pathways in the brain are free to perform other functions. On a conscious level, a neuro-typical person takes the auditory information the brain has unconsciously selected, listens to it, makes choices about which sounds have priority, and interprets these sounds accordingly.

This basic neuro-typical process feels quite foreign to me. I’m not sure how much unconscious locating and selecting I do with sound. Very little, it seems. No wonder I get so tired! Some of the other pathways in my brain can’t attend to other things because my unconscious doesn’t give them a break. Almost all my processing is conscious. It feels like the only unconscious responses I give to sound are to defend against it or to become very unnerved by it.

For me, all sounds come in at a very similar volume (and thus seem to have a similar level of importance), and when I attempt to locate sound, I often look in the wrong place. For instance, this morning, two guys were on our roof fixing our chimney, and they were having a conversation. I was outside, on the other side of the house, and I could hear some of the words. For about a half hour, I was sure that the sound was coming from the apartment on my right, when it was actually coming from my house on my left!

As for consciously attending to some sounds, but not to others—under most circumstances, I can’t. I just give my attention to all of them. Sometimes, when I listen to many people talking at once, I hear a jumble of words in which I can glean different phrases, but I can’t put the meanings together. At other times, the sound of many people talking just comes into my brain as undifferentiated noise.

I can prioritize and select sounds only in very structured environments. The purpose and the organization of the group have to be clear. For example, at my karate dojo, I gave most of my attention to my sensei, since she was my teacher and kept the group focused. In well-facilitated business meetings, with clear agendas, I was able set priorities about where to put my attention. At the store where I work, I was once able to attend to one conversation rather than another, but only because the space was very big and otherwise quiet.

Even in the most structured situation, however, I find that listening and keeping up with the flow of the conversation is very hard work.

How Our Ears Work: The Cochlear and Vestibular Systems
Remember in high school, when we learned about the inner ear? I remember the cochlea, which looks like a snail shell and controls hearing. But there is more to the story. The inner ear also consists of three semicircular canals, plus the utricle and the saccule, all of which constitute the vestibular system—the system that controls movement, balance, and spatial orientation. Not surprisingly, the cochlear and vestibular systems are intimately connected. Our bodies use the same (amazingly tiny) osseous labyrinth for both systems. In fact, the cochlear and vestibular systems use the same cranial nerve for sending information to the brain, and they exchange information all along their neurological pathways.

During my sensory assessment, it became clear that in addition to my difficulties filtering auditory input, I have deficits in each facet of my vestibular system: movement, balance, and spatial orientation. I have moderate dyspraxia when performing tasks that involve balance and moving my body through space. For instance, I had a lot of difficulty learning different forms in karate. I would have to draw them out visually and then memorize the pattern. My sensei would keep urging me to just feel each form in my body, but it was very difficult. Sometimes, she would even have us do katas with our eyes closed, just to help us feel the forms inside us. Unfortunately, these exercises generally resulted in my becoming frustrated and rooted to the floor. It was either that or become completely dizzy and fall down.

As for spatial orientation…What spatial orientation? If you need directions to anywhere in the world, just send me an email. If I tell you to go left, you should go right. If I tell you to head due east (wherever that is), you should head due west. It works like a charm (except for those random, statistically insignificant moments in which I am correct).

In the final analysis, the cochlear system, which allows us to hear, is also involved with spatial orientation. Hearing allows us to become oriented to the world around us, while the vestibular system gives us information about where we are on the ground. Since both hearing and spatial orientation are basic survival skills, it should come as no surprise that those of us with auditory and vestibular deficits feel pretty anxious and disoriented. A lot.

Isn’t it a relief to know that these feelings have their origins in our neurology, rather than in some deep, dark, psychological abyss? It is for me.

How Does Therapeutic Listening Work?
Since I have problems with my auditory and vestibular systems, I was very happy to learn that Therapeutic Listening works by engaging both.

At the moment, I am listening to the “modulated” CDs. I loved the Mozart for Modulation CD, and I’m currently working with a modulated Vivaldi CD. The people who create these CDs pass the music through a filter. Sometimes the higher frequencies are allowed to come through; sometimes the lower frequencies are allowed to come through. This type of modulation exercises both the auditory and vestibular portions of the inner ear. It also works the middle ear muscles that help control our ability to attend to our auditory environment and to organize sensory data. In general, these benefits should result in better overall sensory processing and self-modulation.

At present, I’m listening to my CD for 20-30 minutes, twice a day. I’ll do so for a minimum of 10-12 weeks. Some people continue the therapy for six months or more, and others make the therapy an ongoing part of their sensory diet. I hope that the therapy is effective for me, and that I’ll be able to include it in my sensory diet. I thrive on consistency, and besides, I really love the music.

Ultimately, the purposes of Therapeutic Listening are to help me use more than one sense at a time, to reduce auditory overload, and to improve the deficits in my vestibular system. To get used to multitasking, I engage in movement while listening to the CD. Generally, while I listen, I wash dishes, fold laundry, do my artwork, or work in the garden. When I’m not listening to the CD, I do activities that engage both my auditory system (such as singing) and my vestibular system (such as rocking, walking, or bicycling).

Walking, biking, and gardening also provide joint compression and reduce stress. I’ve even noticed myself toe-walking lately. Because Therapeutic Listening is hard work for my body, it’s important to have these kind of grounding activities.

Is There a Down Side to Therapeutic Listening?
At the moment, for me, there seems to be one. I’ve been getting a lot of migraines. Fortunately, I’ve figured out why. I’m resisting using more than one sense at a time. When I’m listening to the CD and making my lunch, the combination annoys me.

Okay, it doesn’t just annoy me. It makes me irritable. Being an Aspie, I’m just not wired to multitask. Using one sense at a time allows me to focus on a project and to enjoy the process. I get so much accomplished that way. I love it. And I’m beginning to love that part of myself that keeps working, and working, and won’t let go until something beautiful comes out of it.

But I also want to be in the world. Being at home gives me much needed solitude and respite, but I lose perspective when I’m alone for too many days on end. Besides, I find people very interesting, and I like them, and I like helping them. And then, of course, I would also like to re-engage basic survival skills, like buying my food at the grocery store, without it wiping me out for the rest of the day.

To be able to do these things, I have to learn to use more than one sense at a time. So, instead of long, measured strides, I’m taking baby steps. Baby steps! At my age. With my education. And my work experience. And my talents. And all those other things I’ve used to mask my utter confusion in life.

Baby steps. Okay. I’ll try it.

© 2009 by Rachel Cohen-Rottenberg

Go contra-dancing, that is.

I have some friends who love contra-dancing and go nearly every Saturday night. So I went with them one night, just to try it out. 

At the time, I didn’t know about being an Aspie, and so I didn’t know what a disaster the evening would be. Neither, of course, did my friends, who just wanted me to have a good time. In the light of my diagnosis and sensory assessment, it’s quite funny to think about all the things that went wrong that night.

When I first arrived, I walked into a large room in which people of all ages were standing around, waiting for something to begin. At one end of the large, crowded room, there was a live band warming up, playing amplified fiddle and keyboard music. The music, while beautiful, was quite loud, as were the voices of all the people trying to be heard above it. 

And then, the dance began. I found, to my horror, that I actually had to touch people I didn’t know. Worse yet, they had to touch me. Lightly, of course. Did I mention that light touch brings out my karate skills? Be reassured, I didn’t use them, but only because my partner unexpectedly spun me around.

Fortunately, one of my friends was still nearby. “Help!” I shouted. ”The room is spinning!”

Because she is a kind-hearted and practical person, my friend paused a moment to give me some sound advice: “You won’t get dizzy if you look directly into the eyes of your partner. Go ahead. Try it.” 

What? Look into the eyes of a stranger? I might be giving off nonverbals that would get me into trouble in the parking lot. Remember Thelma and Louise? These are the things I worry about.

I didn’t have much time to worry, however, because a few moments later, everyone had to change partners. Change! I was just getting used to one total stranger, and now we’re onto the next one, and I had to look into his eyes, too.

And did I mention that I didn’t know any of the dance steps? My friends had told me that everyone was very nice to beginners, and that I should keep trying and watch what people do. I’d catch on eventually, they said. The problem, of course, is that I cannot learn a blessed thing by watching people do it. So I stood there, totally confused, until another kind-hearted person came up to me and said, “It’s okay. Just listen to the directions.”

Listen to the directions? You mean, the verbal directions? Without a pen and paper for taking notes? With the amplified music playing, and all the people talking and laughing, how can I possibly hear the directions? Even if I could, I’d need a video camera, a set of printed instructions, a diagram, and lots of quiet time at home to get it all figured out.  But, it was too late for any of that now, wasn’t it?

Finally, one of my friends shouted, “If you’re feeling overwhelmed, why don’t you just sit down and listen to the music?” That seemed an excellent idea. So I sat down, and I watched a small village dancing round and round in an enclosed space with amplified fiddle and keyboard music.  Everyone was looking as though they were having so much fun. I wished I could be like them. I wondered how it was possible that I could be getting dizzy watching them, when they weren’t getting dizzy dancing around and around.

After an hour, I was gone. I mean, I was still in the room, but I was gone. And then it occurred to me: I have car keys and my car is outside. I think I can even remember what it looks like.

So, I said my goodbyes, to the disappointment of my friends, and I staggered outside into the cold night air. It was blessedly quiet. I got into my car, breathed a sigh of relief, and took the slow route home. I’d never enjoyed the quiet so much.

For many people, contra-dancing is fun. If your senses don’t get overloaded by visual, auditory, and tactile stimuli, it’s fun. If you can learn dance steps just by watching them, and if you can follow verbal directions, it’s great fun. If you can make eye contact and don’t mind spinning around, it’s even more fun. And if you don’t find crowds profoundly disorienting, and if you can filter out background noise, it’s wonderfully fun.

Unfortunately, I can’t do any of those things. So when people ask me whether I’d like to go contra-dancing, I just say, “I’d love to, but I can’t.”   

© 2009 by Rachel Cohen-Rottenberg

Today, I met with my OT to discuss the results of my sensory assessment. Her report was full of very helpful information. Things that have mystified me all my life began to make sense. 

I’ll share the highlights.

Here is a list of the assessment tools she used:

• Interview
• Developmental/Sensory History Questionnaire
• Adolescent/Adult Sensory Profile (Brown & Dunn)
• Quick Neurological Screening Test-II (QNST-II)
• Gravitational Insecurity Screening Tool (May-Benson, AJOT 2007)
• Subtests from: PEERAMID-2 (Levine)
• Ocular Motor Control Screening
• Clinical Observations of gross motor, fine motor, and balance skills

In her report, she defined a number of terms that were helpful in understanding how my sensory processing system works. I’ll use her definitions as I discuss how they relate to my particular situation.

Sensory Processing
“Sensory processing is the continual process of the brain filtering, interpreting and organizing sensory information from the environment and from our body. We use this information to determine what is going on in our environment (external stimuli) and in our body (internal stimuli) and how to respond in just the right way for the situation. When effective, we can filter and prioritize incoming information and determine if it should be noticed or disregarded and respond in an adaptive, purposeful manner.”

Needless to say, I have difficulties with “filtering, interpreting, and organizing sensory information.”

Sensory Processing Disorder and Sensory Modulation Disorder
“Sensory Processing Disorder (SPD) is the impaired ability to interpret, organize and make sense of various simultaneous sensations entering the brain. The brain may not filter the stimuli or it may misinterpret the stimuli resulting in various reactions including fight, flight, freeze and/or fright responses. Sensory processing disorders have subtypes: sensory modulation disorder (sensory over and under responsive types and sensory seeking), sensory discrimination, and sensory-based motor disorders.” (Note: SPD is not yet an official diagnosis, though many OTs are working very hard to make sure that it appears in the DSM-V.)

“Sensory modulation refers to one’s responses to stimuli. When one is not able to regulate the intensity and types of responses to stimuli (internal or external), this is called a sensory modulation disorder. One may over respond, under respond to stimuli and/or seek stimuli.”

The assessment shows that I have sensory modulation disorder of the sensory over-responsivity (SOR) type. In other words, my nervous system is highly sensitive to visual, auditory, and tactile stimuli, as well as to movement. No surprises there.

Dyspraxia
Dyspraxia is “a deficit in the ability to plan, sequence, and execute a novel motor task.”

The evaluation concludes that I have mild dyspraxia when doing fine motor tasks, such as knitting, and that I have moderate dyspraxia when doing gross motor tasks, such as karate.

To learn to knit, I used the instructions in a beginner’s knitting book. I found it difficult to figure out from the drawings how to hold the needles, how to place the yarn on them, and how to do the various stitches. It was hard to translate from the picture in the book to what was happening in my hands. Fortunately, I am a tenacious person, so I just kept reading the instructions and trying each task until I got the desired result.

Once I’ve learned a skill, I can repeat it. I sometimes get out of practice, but after a few tries and mistakes, I generally remember what to do.

As far as learning karate goes, I had a somewhat more difficult time. Fortunately, I learned karate from some very patient senseis who respected the way that I figure things out. For example, I was not able to learn a kata (a sequence of moves) just by watching and copying my sensei, as most people did. The process I used was comparable to the one I use to translate visual information from a picture book. I learned the katas by doing the following tasks:

1. Film someone doing the kata (or buy a video if I felt too shy to ask).
2. Watch the video at home and write down all the steps in sequence in a list.
3. Create a mnemonic for remembering when certain sequences are repeated or changed.
4. Diagram the directions in which I needed to move on a piece of paper, with items in the dojo noted so that I could orient myself properly. (All katas require that you face in each of the four directions. Sometimes sequences are repeated in each direction, sometimes sequences are slightly altered, and sometimes, new sequences are added.)
5. Practice the form at home while imagining that I was in the dojo.

When my sensei asked me to perform the kata while facing in a direction different from the one I had in my mind, I quietly panicked. For example, if when I practiced a kata, I imagined beginning the form by facing the window, I would become very agitated if my sensei asked me to demonstrate the form by starting in the direction of the door. Sometimes, I could do it, but it took a lot of practice to get the kata in my muscle memory, and I never lost my anxiety about having to begin in a different direction.

Gravitational Insecurity
From our discussion today, I learned that gravitational insecurity denotes a condition in which one cannot determine where one’s head is in relation to the earth. A person with gravitational insecurity is afraid of having his or her feet off the ground, and of having his or her head tipped backward. 

The evaluation concludes that I have severe gravitational insecurity, and that I rely to a very great extent on my vision to orient myself in space. I am particularly averse to any kind of rotational movement. I’ll let the report speak for itself here:

“A gravitational insecurity assessment was administered. She attempted and completed the following tasks: jumping, jumping over a line, swinging laterally on a platform swing, rocking herself laterally on a peanut-shaped physioball, stepping on and off a tilt board with little hesitation or cues and little to no emotional responses. Rachel quickly becomes dizzy when she stands on a chair and jumps from a chair with her eyes closed, and attempts to stand in tandem with her eyes closed. She was able to lie supine on a physioball and look up at the ceiling for a moment before needing to kneel and then lie on the floor due to severe dizziness. A weighted blanket was placed over her for 4 minutes as a grounding technique so that she could recover from this severe dizziness. Rachel stated that she became “nauseous” watching this therapist demonstrate rolling prone on the physioball and this task was omitted from the assessment assuming that her response would be aversive.”

Yes, I got nauseous just watching the OT tip her head backward!

Understanding the concept of gravitational insecurity explains a world of difficulties I’ve had with very simple tasks. For example, I generally resist any activity that entails having to move up or down, because when my head is in motion, I have a very difficult time orienting myself as to where the ground is. So, for example, I don’t like swinging up and down on a playground swing, but I can swing from side to side on a swing that I can stand on. When I swing from side to side, my head is in the same plane with the rest of my body and my feet do not move up or down.

Another example: As I write this post, the sun is going down, and I am going to have to get up and turn the light on. There are actually times when I sit here in the dark, using only the light from my screen to read the keys, because getting over to the light switch feels like such a production. I’m sitting on a futon on the floor, and the light switch is on the wall to my left, about two feet away. I can’t reach it from where I am, so my usual strategy is to move over toward it along the futon, staying in a sitting position, with my head remaining as still as possible. I then try to reach the light switch without getting up. It’s physically impossible for me to reach it from a sitting position, but that doesn’t stop me from trying. Because I’m writing about it right now, I’m conscious of the impossibility factor, and I’m aware that I’m going to have to find some other way to turn the light switch on.

Excuse me for a moment……

There, now it’s on. Guess how I did it? I carefully moved over onto my knees, raised my arm up, turned on the light, and then returned to a sitting position with a feeling of great relief. The entire time, my head remained in the same plane as the rest of my body. I made sure of it.