Journeys with Autism

Archive for Sensory Processing Disorder (SPD)

Therapeutic Listening: It’s Not Just About Sound

May 3, 2009 Rachel Dyspraxia, Hearing, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Therapeutic Listening, Vestibular System, Visual/Spatial Skills

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.

4 comments

Music and My Fifth OT Visit

April 27, 2009 Rachel Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Therapeutic Listening

Note: For posts about previous visits, including my sensory assessment, see the Occupational Therapy category, to the right of this post.

My OT rocks! I am so lucky.

I drove down to my OT appointment this afternoon on about 4 1/2 hours of sleep. I had gone to bed reasonably early, but then woke up at 3:45 am and couldn’t get back to sleep. Instead of fretting about it, I meditated awhile, thought about what I’d like to do with the day, and tried to relax till daybreak. Then, I got my daughter up for school and, once she was on her way, decided to do some joint compressions by going out into my front yard at 7 am and digging up what’s left of the grass. Very therapeutic. An hour and a half later, I had breakfast and then worked out on my bike. Also very therapeutic.

Then, just before I left for my appointment, I had a nice talk with a neighbor about the work I was doing in the garden. The talk didn’t last for more than 10 minutes, so I actually succeeded in keeping track of the entire conversation. I like it when that happens.

Finally, I got in the car and drove for an hour to my appointment. I was really looking forward to going. Why? Because my OT rocks!

Oh, right, I already said that. Well, here’s why she rocks:

1. She is friendly in a genuine way.
2. She has a great sense of humor.
3. She is sensitive to my sensory needs.
4. She knows how hard I work just to get through the day.
5. She wants to know how I’m doing.
6. She is very practical.

This list is not exhaustive, but hey, I don’t have all the time in the world here, and I’m trying to learn brevity. (How am I doing so far?)

It seems like nearly everything we did today involved music, which was wondrous.

But first things first: When I got there, she asked me what I needed in order to ground, and before she even got the words out of her mouth, I said, “Thumper!” (Quirky Mom, you might want to skip the rest of this paragraph.) She used that divinely inspired machine on my back, and this time, I could feel the vibrations in my nasal cavities and in my lips. Pure heaven.

Then, she asked me how the Therapeutic Listening was going. I really love the Mozart for Modulation CD, but found that I’ve been getting a lot of migraines lately. She thought it might have to do with the fact that I sometimes listen for more than a half hour at a time. When I’m out gardening, I lose track of time and have probably listened to the CD for 45 minutes to an hour in one session. The music is really working my ears, so even though I don’t feel like I’m working hard, I am. She said that for the next two weeks, I should start by listening to the CD for 20 minutes, twice a day, once while resting and once while being active (doing chores, having dinner, and so forth). I’m supposed to increase my listening time by 2-3 minutes every 1-2 days.

That sounded good. Then, I got to choose a new CD. I started by listening to one that had children’s songs on it. It was kind of sweet and appealed to the childlike Aspie aspects of my soul, but when the alphabet song started, my brain got really hooked on the letters. The whole point of the exercise is to listen to the CD without fully concentrating on it. In other words, the point is to multi-task. If I get hooked on the letters, I’m giving the music too much attention.

So she gave me another CD, one with water and dolphin sounds, along with some sort of music in the background. It drove me nuts. The music had no center. I don’t know why some people find that relaxing, because it makes me want to cry.

My OT said we didn’t have a lot more choices for this stage in my Therapeutic Listening life, but perhaps I’d like a Vivaldi for Modulation CD? OMG! Heaven. Absolute heaven. I love Vivaldi with a passion. So I was a happy camper. I listened to Vivaldi while my OT asked me a lot of questions about other parts of my sensory diet. I’ll share a little about that.

I love working out on my bike and singing with the Annie Lennox Medusa CD. It’s a 45-minute CD, and I listen to it twice. I’m noticing that my singing voice is getting much stronger and clearer, and that I’m singing with more of my body. It feels great. My husband loves the CD too, so sometimes, he’ll come in and do paperwork and sing with me. It’s way fun.

I’ve also relearned Torah cantillation, and have been choosing random portions of Torah to chant every couple of days. It makes me feel really great to know that I can just pick up any passage and follow the cantillation marks without much trouble. When my husband and I were leading services, I would prepare a Torah portion, and it always felt like a lot of pressure. Now that I’m doing things for my own enjoyment, they’re much more fun. I’m not chanting Torah in preparation for any kind of public gathering. I’m just chanting because I love it. In Jewish tradition, it’s customary to rock back and forth when you’re chanting or praying, so I get to do movement that feels very natural to me.

A few weeks back, I xeroxed some lines from Torah and put them on a door in the kitchen. There are three groups of words. I have to look up to see one, I have to look directly in front of me to see another, and I have to look down to see the last one. My task is to start from 10 feet away, chanting from the top, while walking forward and backward. Kind of like walking and chewing gum, except harder. I had been practicing this exercise a few weeks ago, and the OT said to reinstate it. I enjoyed the exercise before, so that will be fun as well.

So, there you have it. I left the appointment feeling very relaxed and focused. On my way home, I even had the energy to stop at a store that sells perennials. I bought a few (okay, eight) to bring home and plant. When I got home, I was quite tired, but lying down didn’t help, so I went back out and attacked the remaining grass in my front yard. It is now gone. Time to start planting the garden!

5 comments

Seeing My Life from a Sensory Perspective

April 26, 2009 Rachel Childhood, Eye Contact, Perseveration, Sensory Processing Disorder (SPD), Sensory Processing Issues

[Note 1: This post includes some general information about the abuse I experienced as a child. The descriptions aren't graphic, but if you're not feeling up to reading about the subject, feel free to skip this post.]

[Note 2: I spell the word God like this: G-d. It represents my belief that G-d is beyond all words and images, beyond any name I could employ to represent the unfathomable mystery of existence. It works for me, but I don't mean to suggest that it should work for you. I have enough on my hands without telling other people what to believe!]

And now, my post:

In the process of realizing that many of my challenges are neurological, rather than psychological, I’ve begun reassessing key relationships from earlier times in my life. A great deal comes into focus. I can make sense of things that had previously been entirely baffling. Most of the issues revolve around my very painful relationship with my parents and extended family, so these are the issues I will share in this post.

My Relationship with My Father
My father was most likely an Aspie. He was abusive, but in a very odd kind of way. He lacked meanness and guile. I never felt that he was a bad person. He just didn’t understand boundaries or what kind of behavior was appropriate. He seemed very lost. I knew he was on overload a lot, even though I didn’t have the words for it. He had many other Asperger traits: he couldn’t make eye contact, he thrived on non-sequiturs, he loved detail, he couldn’t hear me in situations involving more than two people, and he constantly interrupted and changed the subject of any conversation.

Regarding the abuse, I don’t excuse his behavior, but I see why it always had this weird quality of cluelessness rather than malice. It never seemed textbook, and until I discovered AS, I was mystified as to why. I kept waiting to meet someone with a story similar to mine, but despite going to a number of survivor support groups over the years, I never found anyone who did.

My Relationship with My Mother
Oy. My mother was always certain that she was right and knew the proper way to do things. And everything—everything—was always about her. For instance, if I were sick, she wouldn’t say, “Oh, I’m sorry you don’t feel well.” Instead, she’d say, “Goddamit, I had plans today.”

Needless to say, she dominated both my father and me. My next-door neighbor from childhood described my parents in this way: “Your father is a puppet, and your mother is the puppeteer.” I immediately had an image of my mother in the second-story window manipulating the puppet strings while my father watered the lawn. It was the perfect image to describe their relationship. As a result, she was able to dominate me almost entirely. It was like living with a tornado.

It may have been common for Aspies in my parents’ generation to marry a dominating partner. I can see why an undiagnosed Aspie might want to marry someone who is absolutely sure she is right, at all times and in all places. It didn’t go very well for me as a child, however.

My Relationship with My Extended Family
When I was 33, I cut off contact with my both of my parents. I wasn’t able to assert my boundaries and be taken seriously, so I continued to feel very unsafe, even in adulthood. After every conversation with my mother (even from 3000 miles away), I fell into very deep depressions in which I didn’t think that I deserved to live. In response to my breaking contact with my parents, the rest of my extended family broke contact with me, including my brother (and only sibling). I have tried to reestablish contact with several family members, but my attempts have been rejected.

Taking a Sensory Perspective
You can see why I approached these issues from a psychological perspective for many years. Working on my healing in conventional psychotherapy did me a world of good.

But the picture never seemed complete until I brought in my Aspie sensory issues. For example, I went to support groups with women who had undergone similar kinds of abuse, and they didn’t present the way I did. To be sure, they suffered from depression, and anger, and sadness, but they were able to cope with life much better than I did. I used to watch them relating to one another during and after the group, and they were able to connect in a way that I couldn’t. I just couldn’t keep up, and I could never understand it. I thought that the abuse had broken my ability to connect to other people. No matter how much work I did, I always felt apart from everyone, behind an invisible force field. Even in support groups, I felt overwhelmed and cut off.

Now, of course, I recognize all of these responses as Asperger traits. Clearly, the trauma didn’t help, but no amount of psychological healing can fix Asperger traits. It’s nice that I’ve finally stopped banging my head against that particular wall. Really nice.

However, the break from my parents has been a more difficult issue for me to resolve. Every year or so, I go through a “Should I have broken contact?” cycle, in which I talk to my husband or my therapist or myself about the whole situation, and why I broke contact, and whether I could have stayed in contact, and whether the first people I’m going to meet when I die will be my parents, and whether they’ll both obliterate me the moment I show up, and whether G-d will be giving them instructions on how to do so.

In response to my perseveration on this issue, my husband invariably says, “Rachel, there is nothing you could have done differently. We’ve been through it over and over. You could not have maintained contact and protected your sanity or saved your life. You know it, I know it, and G-d knows it.”

And the last time I went over this territory with a therapist, she said, “You know, we’ve really got to talk over this G-d of yours.” How could I explain that, as long as I’m not talking about my parents, my experience of G-d is one of unconditional and unending love? Only with my parents in the conversation does G-d become merciless.

These days, though, when I consider the breaking contact question, I don’t feel inclined to perseverate on it. Something has changed in me. I’m able to look at the situation from a sensory perspective, and a couple of things become very clear.

1. I hate my parents. There, I said it. I don’t hate them in the sense of wishing them harm. They have both passed away, and I hope they are with G-d and that they are healed. I would not want them to spend eternity in the same state of mind in which they lived on earth.

The feeling I have is more visceral: my senses are repelled by them. I can’t explain it any other way. When I look at pictures of them, I feel sick to my stomach. It’s my Aspie empath ability to take in the full picture of a person’s energy, while missing all the little nonverbal details. When I take in the full picture of my mother’s energy, I feel repelled by it. When I feel my dad’s energy, I feel exactly the same thing.

It goes beyond anything they did. It’s about who they were. I believe that my parents, like all people, were made of G-d’s light, and that their souls were pure. So I don’t think of them as evil. It’s just that who they were in this life, and who I am in this life, could not coexist happily, anywhere.

2. Given my jangly nervous system, my ability to go into immediate sensory overload, and my extreme difficulty in conversations consisting of more than two people, it’s amazing that my relationship with my parents lasted for 33 years. With my father’s constant interrupting, my mother’s ability to dominate every situation, and the fact that I couldn’t politely disagree with either of them, about anything, without a loud, verbal, angry, relentless cyclone of epic proportions coming at me from their general direction, I’m not sure how I managed to share space with them for five minutes, never mind 33 years.

I always feel that people will judge me harshly over this subject. I hope you won’t. I’ve done the best I can with what I’ve got. I wish things could have been different, but I know now, finally, that it simply wasn’t possible.

17 comments

Finding an AS-Literate Therapist

April 23, 2009 Rachel Autism-Literate Therapists, Food, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues

I did it! I found an AS-literate therapist. She’s a colleague of the psychologist who diagnosed me with AS in November. And she’s only a half hour away. So now, in addition to seeing an OT in Massachusetts, I’m going to meet with a therapist in New Hampshire. (Did I mention that I live in Vermont?) Anyway, I have an appointment with her in late May, so we’ll get to sit down, and talk, and see whether we click.

It’s been so important for me to find a therapist who understands AS. I’ve done a lot of psychotherapy over the past 25 years, and it’s done me a world of good, but around the time I was diagnosed with AS, I began to feel very frustrated with it. The underlying assumption of psychotherapy is unending progress. You just have to work on your issues, and the sky’s the limit. In fact, my last therapist told me that with a little more work, I was going to “soar.” It didn’t make me feel good. I didn’t know why then, but I understand now. I don’t need to soar. I need to learn how to walk through the world being exactly who I am.

One of the many things that I love about my OT is that she doesn’t make me any promises. She doesn’t say I’m going to “soar,” or learn to filter out background noise, or even go grocery shopping once a week. She doesn’t promise anything. She just gives me tools and says, “Let’s try this and see how it works for you. Everyone is different.” What a relief! It allows me to accept myself exactly where I am, knowing full well that I might make some progress, or none at all. As long as there are practical things that I can do, I’ll do them and see how they work. I like that approach very much.

So it’s a little odd to think about going to a therapist again. A great deal of my present work consists of undoing all the psychotherapeutic assumptions I’ve lived by for 25 years. The main assumption to overcome is that all of my problems are emotional and psychological, rather than neurological and physical. Undoing that assumption is very hard work, but I’m getting a little better at it. Consider the following:

1. How I handle my anger. I have lots of reasons to be angry. My lousy childhood. My estrangement from my original family. Global warming. Autism Speaks. I could go on, but you get the idea. For much of my life, I’ve seen my anger as a psychological problem to be solved. I’ve needed to “work through” my anger at my parents. I’ve needed to learn to “channel” my anger at the ills of the world into productive work. And that’s fine. I’ve worked hard at all that, and I’ve had a lot of success at it, too.

But now, I’m realizing that a great deal of my anger is my nervous system trying like crazy to get my attention. Yesterday at the co-op, in the midst of all the sensory overload, I could feel my anger rising, and I realized that my nervous system was yelling at me: “Get me out of here! Get me out of here! There are too many people! They’re all talking at once! The large-size gloves are driving me nuts! Someone is banging on metal! There’s too much music! Please, take me home! Now!” As my OT would say, my anger is just my nervous system defending itself.

What an incredible piece of information. I don’t have to take my anger out on myself. I just have to listen to my anger as a signal from my nervous system—a signal that I need to respect. The respecting part is the hard part, because I’ve devoted most of my life to overriding my neurological signals. I’ve gotten quite adept at it. It’s become a deeply-ingrained habit, and habits are difficult to break. Difficult, but by no means impossible.

2. Why I overeat at night. I can hardly express what a failure I think I am around food. I soothe myself with it. (Isn’t that just awful? I mean, it’s right up there with global warming and Autism Speaks, isn’t it?) Up until the past few months, I figured I was soothing myself emotionally because of trauma issues, loss, and insecurity. But I’ve worked on these issues forever, and I still use food the same way.

Now I realize that my nervous system is in an uproar at night. An absolute uproar. After a full day of wending my way through the sensory world, I am tired and my nervous system is going nuts. How wonderful to talk with my OT, and to realize that overeating at night is not about a lack of willpower or commitment or strength or character. It’s just my poor 50-year-old jangly Aspie nervous system saying, “Help. Please. Help. I’m hanging from the chandelier. I know you don’t have a chandelier. It’s just a figure of speech. Help.”

So why see a therapist at all? After all, my OT is giving me the information I need.

I need some emotional support, too. I need some support for feeling my otherness, for accepting my aloneness, for guiding my daughter into young adulthood, for figuring out what to do here in mid-life when everything I’ve planned for, and dreamt about, and worked so hard for is done. The therapist I’ll be meeting specializes in helping women through mid-life transitions, so if anyone can help me get comfortable with becoming a crazy old cat lady, it will be someone like her.

Of course, I’ll need to get some cats. I’ll put them on my list. But where do they go in the sequence? At the beginning, before I see the therapist? Or as a reward somewhere down the road? I don’t know. It’s all so confusing. But I’ll get there. Wherever it is. That’s for sure.

14 comments

Therapeutic Monday

April 20, 2009 Rachel Hearing, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Therapeutic Brushing, Therapeutic Listening

The Therapeutic Listening program is going very well for me, and I’ll share some experiences below. At the end of my post, I’ll also have some information about a possible alternative to Therapeutic Brushing.

But first, today’s visual.

To explain the difference between how neuro-typical people and Aspies handle sensory input, Tony Attwood employs the images of a bucket and a cup. Our neuro-typical friends, he says, have a sensory bucket, capable of holding a great deal of sensory information. Those of us on the spectrum, however, have a much smaller vessel—a cup, which gets filled a teensy-bit more quickly.

Just before Passover, my husband made an offhand comment about my sensory vessel being a thimble. At work the next day, I just happened to run across a very nice ceramic thimble. I put it on our seder table as a reminder. So here is my sensory vessel, photographed next to a very small bottle cap for scale.

And now, onto the therapeutic ways I am attempting to replace a thimble with a cup.

Therapeutic Listening
So far, I am able to listen to the CD for 30 minutes/day while lying under my weighted blanket. I generally fall into a deep sleep after a half hour of listening, and I wake up an hour later wondering what day it is. I don’t think that’s the primary purpose of the exercise, but I appreciate it nonetheless.

In terms of intended effect, I am seeing some small progress already. For example, at work the other day, I was looking at some clothing. To my left, a staff person was talking excitedly with a friend she hadn’t seen for awhile. To my right, a man was laughing loudly over an outfit that two women wanted him to put on. I had the following reactions:

1. I was not jarred or annoyed by the man laughing loudly, even though he was only about 6 feet away from me. In fact, I smiled to myself. Weird, but true.

2. I did not experience both conversations in stereo. I tuned out the first conversation because I was enjoying the laughter in the second conversation.

These responses are highly unusual. I generally get very irritated by loud people. And it’s almost always impossible for me to tune out one conversation in the service of another. I was able to do so at the store because only two conversations were going on in an uncrowded space. With more people, in closer quarters, all talking at once, I still hear everything at the same volume—the one marked “Very High, and Why Do You Look So Alarmed?”

I also noticed that I was able to pick out a line from song that I’d been listening to for weeks. I have a terrible time hearing song lyrics, but all of a sudden, this one line just sounded loud and clear. Kinda cool.

In general, I’m becoming more aware of the effect of sound on my nervous system. Usually, I’m so fascinated by visuals that I don’t really notice my body’s response to sound until I’m overloaded. But yesterday, when my husband and I were going out shopping, something changed. As we were walking down the street, four guys driving VERY LOUD Harleys drove past us and gunned their engines as they were idling. (Don’t you hate that?) My first response was to feel very angry, as though they were gunning their engines just to piss me off. Then, I noticed that my ears and head felt assaulted, and that my stomach was churning. After the motorcycles were gone, I stumbled over to the nearest wall and tried to catch my breath. When we got into the sneaker store (which was pretty quiet and calm), the stomach churning stopped.

So, some small (but welcome) progress on the auditory front.

An Alternative to Therapeutic Brushing
A friend in Minneapolis, who is an OT, wrote to tell me about an alternative to Therapeutic Brushing. It’s called “hand hugs,” and consists of someone using their hands to apply pressure to the arms and lower legs. I’m told that it’s a powerful technique, so do not try it without an OT showing you how to go about it. Apparently, Therapeutic Brushing does not work for many people, so if you’re having difficulties with it, hand hugs might be an alternative. I am going to ask my OT about it the next time I see her.

And now, I’m going to go take a nap…I mean, listen to my Therapeutic Listening CD.

4 comments

Sleeping, Listening, and My Fourth OT Visit

April 15, 2009 Rachel Anxiety, Hearing, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Sleep, Therapeutic Listening, Vestibular System, Weighted Blankets

Note: For posts about previous visits, including my sensory assessment, see the Occupational Therapy category, to the right of this post.

After receiving so many wonderful ideas from all of you about my sleep resistance dilemma, I went to see my OT on Monday. The first thing she had me do was to write out a list of objectives for the therapy. A list! I was so happy.

Objectives

To stop resisting sleep by eating and watching TV.
To reduce auditory overload. (Auditory overload seems to be the most intense for me, followed very closely by visual and vestibular overload.)
To do the grocery shopping one day per week, every week. (My husband does most of the grocery shopping these days.)
To deal better with changes to my routine. (I don’t get upset with people anymore when plans change, but I still get very stuck and have difficulty adapting.)
To keep up with OT tasks, such as exercise, singing, and drumming.

We began working on the top two issues on the list: sleep resistance and auditory overload.

Sleep Resistance
We talked about my sleep issues from a sensory point of view. My OT feels very strongly that I need to reframe the way I see winding down, ending the day, going to bed, and sleeping. Right now, I resist all of those things. She said that I need to frame all of them as being very positive. Sleep is the time that our bodies regenerate cells. Sleep provides rest for the immune system and for the nervous system. Both systems are key to the health of the body and to the enjoyment of the daytime hours.

We then discussed ways to take care of my sensory needs so that I don’t try to calm myself by watching TV and eating too much. It’s clear to me that what calms my nervous system is a lot of physical, tactile pressure, like the pressure of a weighted blanket or the vibrations of the Thumper. On Passover, I fell asleep under two weighted blankets—30 pounds of pressure. Since I’d like to start going to sleep earlier, my OT suggested that in the evening, when I imagine the best possible place in the world to be, I imagine lying underneath 30 pounds of weighted blankets at 10:15 pm! Talk about reframing. Given that lying under weighted blankets feels a little bit like heaven, I think I can do it.

As we talked about the process of replacing one routine with another, my OT was very adamant that I not completely ditch the old way of doing things until I add something more powerful to it. My tendency is to try to jettison an entire routine before I’ve started on a new one. The results are usually not good. So this time, for example, I will not take away chocolate without giving myself something that works better. In other words, I need to respect that I am in a transition. Transitions are difficult, but I’m willing to put some energy into this one.

I’ve decided to make some changes. Over the past couple of days, I’ve taken a look at my daily list and given more attention to the times for my late afternoon and evening tasks. According to the list, I have different self-care tasks and chores to start by 4 pm, by 6 pm, and by 8 pm. Up to now, I’ve been getting the tasks done, somehow, but I’ve paid virtually no attention to the time at which I get started. For example, sometimes the dishes get done at midnight, even though according to the list, they should get done by around 8 o’clock.

In addition to keeping better track of my present tasks, I added a new task, which is to make myself a very weird but useful concoction of mashed bananas, soy powder, and tahini at 10 pm. I used to eat this little concoction when I was on an elimination diet to weed out food allergies and sensitivities. It always helped me to feel full so that I could fall asleep. So, on Monday night and Tuesday night, I had this lovely dish and also allowed myself a small piece of dark chocolate. On Monday night, I feel asleep at 10:30 pm, woke at 4:20 am, and then meditated myself back to sleep until 6 am, when my alarm went off. On Tuesday night, I fell asleep a bit later, around 11:15 pm, woke up again at 4:20 am (not sure why, except that perhaps the heating system was coming back on), and then fell back to sleep until about 7 am. Not too bad at all. I didn’t watch TV either night.

I can see that this whole transition is going to be a one-day-at-a-time proposition.

Therapeutic Listening
After our conversation about sleep, my OT and I went into the gym and began the Therapeutic Listening program. The goal of the program is to help me filter out sounds in my environment so that they don’t feel like they are all rushing in at one high volume. It involves using a special headset and a series of CDs.

While lying under a heavy weighted blanket, while standing up on a swing and rocking laterally, and while rocking laterally on a peanut-shaped physioball, I listened to part of a CD called Mozart for Modulation. The makers of the Therapeutic Listening program take pieces of music and change them in ways that work the muscles in your ears. The music is supposed to be in the “background” to make your ears reach for some of the sounds, so I heard it at a low volume (from 2-4 on a CD player, without any bass boost), and I could still talk to the OT without needing to speak loudly. I was supposed to listen to the music while not actually concentrating on it (not so easy for an Aspie), so my OT had me swinging and rocking while I talked to her about, well, whatever—my daughter as a baby, what her sleep patterns were like back then, and a lot of other stuff I don’t remember.

Listening, talking, and moving were a lot to do at once, and I felt pretty tired and disoriented by the end of the session. My system really resists that amount of multitasking. But the OT said that the point of the therapy is to ask my brain to attend to several things at once without getting overloaded. I overloaded this time, but the goal is to begin to reduce the overload, so I’m willing to commit to this program and see whether it helps.

I brought home the CD and special headphones. I don’t have a portable CD player, and my OT said it was okay to listen to the CD on my computer, as long as I wasn’t watching the screen. (She said that, under no circumstances, should I listen to the CD while driving or watching anything on a screen. I don’t know what happens exactly, but it doesn’t sound good.) I was supposed to combine movement with listening to the CD, but right now, the only way to move and listen at the same time is to put the computer at the foot of my bike while I’m working out. I really don’t want to do that, because I love the routine of biking and singing my favorite songs. My OT agrees that I shouldn’t interrupt that routine.

So yesterday, after work, I came home, got myself organized, lay down under my weighted blanket, and listened to 20-30 minutes of Mozart for Modulation until I fell asleep! I really enjoyed lying under my weighted blanket in the late afternoon and listening to the CD. It was the first time that resting felt like a good thing, because my mind was occupied with something other than my own constant thinking. Since it feels so nice to me, my OT said that once a day, I should listen to the whole CD while resting, and then listen to it again at some other point, while I’m moving around. Moving around can include walking, eating a meal, knitting, making mobiles, or doing the dishes. The goal is to activate and integrate the visual, auditory, and vestibular systems. ~~The CD is nearly 75 minutes long, so I’ll need to work up to listening to the full CD twice a day~~.

[Correction: I just heard from my OT, who reads my blog. She said that I only need to listen to the CD for 30 minutes, twice a day, with at least three hours between listening sessions. She said that the beginner CDs are 30 minutes long, and that she had forgotten how much more music was on the one she gave me.]

Of course, I finished off the OT visit with the Thumper, and this time, I could feel the vibrations in my teeth! Very cool.

8 comments

A Critique of the Theory of Mind (ToM) Test

April 2, 2009 Rachel Childhood, Critiques of Autism Theories, Diagnosis, Mainstream Theories of Autism, Mind-Blindness, Sensory Processing Disorder (SPD), Sensory Processing Issues, Theory of Mind (ToM)

The basic Theory of Mind (ToM) test was first developed by Wimmer and Perner in 1983, and then modified by Leslie and Frith in 1988. Wimmer and Perner used dolls, while Leslie and Frith used human actors. Regardless of the version, researchers have always come to the same conclusion regarding the results of the test.

I’ve always had my doubts about this conclusion.

The most common form of the ToM test is called the Sally-Anne Test. The ostensible purpose of the test is to measure a person’s ability to attribute false beliefs to other people. In the original version, the clinician uses two dolls, Sally and Anne. Sally has a basket, and Anne has a box. Sally puts a marble in her basket and leaves the scene of the action. Anne takes the marble out of Sally’s basket and puts it in her box. When Sally returns, the clinician asks the child where Sally will look for the marble.

To pass the test, a child must say that Sally will mistakenly look in her own basket first, evincing the belief that Sally is unaware that the marble has been moved. A child who fails the test will say that Sally will look in Anne’s box, where the marble is actually located. In Simon Baron-Cohen’s 1985 study of ToM in autism, 80% of the autistic children failed this test. The conclusion drawn is that the autistic children have an impaired (or non-existent) ToM and cannot understand that other people have information and beliefs different from their own.

I am very bothered by this conclusion. Very, very bothered.

I know that most neuro-typical researchers believe they have a “normal” ToM and can understand autistic people rather well. Needless to say, I’m quite skeptical. It’s not rocket science to know that you can read people who are like you, but have a harder time reading people who are unlike you. I would much rather hear an autistic person describe his or her own experience than hear a neuro-typical researcher making statements about how autistic people view the world.

Moreover, I am very suspicious about someone drawing a single conclusion from a psychological test. People are so complex that one child’s answer may be due to a large variety of factors, some of which may not ever have entered the mind of the researcher.

I had an insight into alternative reasons for a “failed” Sally-Anne test when I was at my OT visit this week. During one of the exercises, the OT and I were talking about why I always move my head when I move my eyes, and why I always have to turn my whole body to look at something. Until I started seeing my OT, it had never crossed my mind that I might look at something without moving my head, or that I might turn my head without turning my whole body. It occurred to me that a certain kind of hypervigilance is at work here, and that this hypervigilance is a feature of Asperger’s Syndrome.

For me, the visual and auditory world is a chaotic, ever-changing place. My eyes are always darting around, trying to make sure that the world is still in order. My sensory processing makes the world seem vast and overwhelming. To me, change is a given. I never expect anything to stay in one place. I’m so attuned to small details that I’m keenly aware when something has been moved, when a pattern has been interrupted, or when symmetry turns into asymmetry. It happens constantly. I like to organize things because it gives me a sense of control over a world that feels like it’s changing in strange and unexpected ways.

So when an autistic child is asked “Where will Sally look for the marble?” perhaps that child is so used to the world being chaotic and overwhelming that he or she automatically assumes that Sally would never look in the place she last saw it. To the contrary: she’d automatically look somewhere else. Being given only two choices—a basket and a box—the child picks the box. Given how the child perceives the world, this conclusion is perfectly rational. It doesn’t indicate a poor ToM at all. It simply indicates that the child believes that Sally processes sensory input like he or she does. Just because the odds are against Sally being autistic doesn’t mean that the child’s conclusion is wrong. The child is simply drawing a conclusion based on his or her own experience.

In this, the child who thinks that Sally will look in the box is no different from the researcher who assumes that that Sally will look in the basket. The “correct” answer is based on the researcher’s own sensory experience. To someone without sensory processing difficulties, the world appears a more orderly and manageable place. A neuro-typical person would figure that the marble would be where he or she had left it. It’s not surprising then, that neuro-typical children “pass” this test 100% of the time.

A better test might be to have Anne move the marble to an unknown place and ask the child whether Sally will think the marble has been moved. If the answer is yes, the reasearcher might then ask, “Where would she look?” If asked that question, the child might just say, “She’ll look everywhere she can.” That’s the answer I would have given as a child, because my experience was that nothing stayed the same for very long. If I had taken the test, I would have gotten dizzy and disoriented just thinking of all the possibilities for where the marble might end up. I’d probably have ended up crying in frustration.

Moreover, as I reflect upon how I would experience the Sally-Anne test as an adult, I’m certain that with my auditory processing difficulties, I would need to write down the sequence of events in order to make sure I understood what was being asked. It’s very difficult for me to keep track of auditory information, and I generally need to make it visual in order to more easily grasp it and remember it. If I were to begin plotting out the sequence of events in writing, I’m virtually certain that a diagnostician would conclude that I was attempting to figure out the answer by deductive logic, rather than by using ToM. That diagnostician would be wrong. I would not be attempting to arrive at an answer; I would be attempting to make sure that I understood the question.

If researchers were to keep in the mind that ways that autistic people experience the sensory world, the results might not imply impaired ToM, but a different way of processing sensory information. The results might even imply that autism is a sensory processing condition, and that many of its features derive from sensory sensitivity, problems with sensory integration, and overload.

At least, that’s how it seems to me.

18 comments

My Third OT Visit

April 1, 2009 Rachel Gravitational Insecurity, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Vestibular System

Here I am with another update about the fun and interesting things my OT is having me do. (For posts about previous visits, including my sensory assessment, see the Occupational Therapy category, to the right of this post.)

For my third visit, I arrived in slightly better repair than I had for the previous ones. I was coming down with a cold, but I felt pretty grounded, and I’d actually enjoyed the drive. The OT spent a little while catching up on how I’d been doing, which didn’t take long, since she reads my blog! We decided that I should abandon the whole Therapressure brushing/bean bag/soft fabric therapy. She usually begins with the Therapressure protocol because, in kids, tactile defensiveness can be a big obstacle. For me, though, it’s not such a big problem, and it wasn’t worth the resistance it was triggering.

That issue being decided, we went into the gym. Yay!

First things first, of course. She ran the Thumper on my back for a few minutes. Pure heaven. If she’d run it for the whole hour, it would have been worth the drive. Then, she had me stand and watch a big red ball swing back and forth. I could track it with my eyes and was even allowed to move my head this time. Easy enough.

Next, on a big ceiling-to-floor whiteboard, she drew a picture of a sun over a house. She had me stand 10 feet away and then walk forward and backward while looking at the picture of the house. I walked forward just fine, but I got a little disoriented walking backward. I was afraid I was going to walk back too far and bump into something. She suggested I just count my steps going forward so that I wouldn’t worry. That solution worked fine.

Then, she asked me to walk forward looking at the picture of the house, and backward looking at the picture of the sun, moving my head up or down as needed. I did this exercise several times. It seemed okay, except that I started to notice that I was getting overloaded. At this point, we stopped and did a couple of grounding exercises. I did a hand press by pushing my palms against each other with my arms akimbo, and held the position for several seconds. Then, I did a hand pull by clasping the fingers of one hand with the fingers of the other hand, palms together, and pulling. Those two exercises helped. A lot.

The next exercise was great fun. I sat on a big peanut-shaped physioball and rocked from side to side. During this time, the OT drew a picture of waves under the picture of the house. Then, she put on some great Native American drum music. She asked me to focus on the picture of the sun for a few moments, then on the picture of the house, and then on the picture of the waves, all the while rocking laterally to the drum music. I love, love, LOVE rocking laterally, I love, love, LOVE hearing drum music, and I can hyper-focus on a visual like I’ve been doing it all my life (which, actually, I have been doing all my life), so this exercise was well within my comfort zone.

So there I was, rocking to drum music and focusing on visuals, and having a great time until the session was nearly over. Of course, I had to get grounded with the Thumper treatment again. How else was I to get in my car? I was so relaxed by the time it was done that I had trouble imagining how I was going to get up off the mat–especially because my head was on an insanely soft piece of fabric.

The point of all these exercises, as I understand it, is to help me a) expand my sense of space by moving in different directions, and b) overcome some of my gravitational insecurity by moving my eyes in a different direction than the rest of my body.

Since my OT reads this blog, she saw that I’ve been wanting to relearn Torah cantillation. So, for homework, she suggested that I put a big paragraph of Hebrew text on the wall, and then:

1. Walk forward and backward as I sing the words from right to left, going from top to bottom. I’m a little dizzy just thinking about it, but I’ll give it a try.

2. Sit and rock laterally as I sing the Hebrew text from right to left, going from top to bottom. This exercise sounds more inviting.

She also suggested that I drum and rock from side to side, so I’m getting my djembe out of the corner and doing some music with it. Between the singing and the drumming, I’ll get lots of vibrations going in my body, which will be soothing to my vestibular system, especially when I rock laterally.

I’m looking forward to seeing what happens.

4 comments

My Second OT Visit

March 29, 2009 Rachel Making Art, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Therapeutic Brushing, Vestibular System, Weighted Blankets, Weighted Vests

Note: For information about my first OT visit, see my previous post.

For my second appointment, I showed up slightly less of a wreck than I did at the first, but still in need of some grounding. This time, the OT used the Thumper, a big vibrating machine that she ran back and forth over my back. The vibration was so strong that I could feel it inside my ears. It was another piece of heaven.

Once I got more grounded, we talked about how the past week’s activities had gone and discussed new activities to try in the coming week.

Therapeutic Brushing
After hearing about my negative experience with the brushing, the OT agreed that I should discontinue it. Instead of the brushing, we tried using soft bean bags and tapping them on my arms and legs. It felt okay at the office, but when I tried it at home, it felt distinctly like hitting myself, which is a trigger. She had also mentioned that I might try using a soft fabric that I find comforting. I have tried using the velvet fabrics I have, and they feel okay on my arms, but I still resist the whole activity. Trauma stuff, I think. Anyway, I do what I can.

Drawing an Infinity Sign
When I told my OT how frustrated I felt drawing the infinity sign, she suggested that I just imagine a large one on the wall and track it with my eyes. I’ve been doing that every day, and it feels really great. I can actually move my eyes without moving my head! After 50 years of doing it the other way, that really amazes me. I even find myself playing around with the exercise at work. I’ll look at something, and then shift my eyes to another object without moving my head. Everyone is so busy looking at all the objects in the store that no one notices the strange woman in the linen department doing eye exercises.

Learning the Cross-Crawl
At this visit, my OT taught me something called a “cross crawl,” in which I lift my right hand and then use it to touch my upraised left knee, and then use my left hand to touch my upraised right knee. The point is to cross the center line in my body in order to get comfortable with the parts of my body working independently. I find this particular exercise very easy, as it reminds me of various karate exercises that also work with crossing the body’s center line.

Singing
After hearing that the vibrations from the Thumper felt like they were inside my ears, the OT told me to sing every day. She said the vibrations would help to activate and soothe my vestibular system, which controls balance and movement, and is based in the inner ear. I always sing when I work out anyway, so this has been an easy one to practice each day. I also want to relearn Torah cantillation. In fact, the book and a small keyboard have been sitting in my loft, beckoning me for months. I’m hoping to add cantillation to my OT routine at some point.

Proprioceptive Activities and Late-Night Snacking
As I mentioned in an earlier post, the propriocetive system provides information about the relative positions of the parts of the body. Engaging the proprioceptive system includes how we feel the joints in our body and the kind of pressure we put on them. The right amount of pressure is very soothing.

I find that I do a number of activities to engage the proprioceptive system, such as using a weighted blanket and weighted vests, bicycling, taking walks, doing my artwork, and fidgeting with whatever object is handy. I wondered whether my tendency to eat a lot before bedtime is also related to my need for proprioceptive activities. My OT said that chewing on things engages the joints in the jaw in a powerful way, which is why I like chewy, crunchy things at bedtime. I’m using them to calm myself down.

I don’t particularly like using food for this purpose on a regular basis, and she suggested that I try a different proprioceptive activity when I feel food cravings without being hungry. It’s going to take a while to work out of the habit of using food to calm myself at night, but the amount I eat seems to be diminishing as I do other activities. Last night, for instance, I spent some time doing my artwork and ended up eating a lot less than usual before bedtime.

When all is said and done, I’m enjoying the process of occupational therapy. Because of my executive dysfunction, I’m still having difficulty consistently working the exercises into my daily routine. But I’ll get there.

2009 by Rachel Cohen-Rottenberg

10 comments

My First OT visit

March 29, 2009 Rachel Gravitational Insecurity, Occupational Therapy, Sensory Processing Disorder (SPD), Sensory Processing Issues, Therapeutic Brushing, Weighted Blankets, Weighted Vests

Since my sensory assessment, I’ve had two visits with my Occupational Therapist, and they have been unlike any visits I’ve ever had with a health professional. No matter what state I’m in when I arrive, I know that she will offer me ways to ground and to feel held.

For my first appointment, I ended up on her doorstep feeling really crummy. I was having a flare-up of a very painful condition that no one has been able to explain. Perhaps once or twice a year, I get a terrible pain in my bladder, like I have a urinary tract infection, except that when I use the bathroom, the pain radiates from my bladder, right up through the center of my body, down my arms, all the way to my hands and the tips of my fingers. I yell and cry until it passes. I’ve been checked many times for UTIs, and it’s not a UTI. No one seems to know what it is. (If anyone reading this knows what it is, please tell me!)

I told my OT what was happening, and she said, “What would you like to try? The big heavy blanket? The Thumper?” I went for the big heavy blanket and immediately felt comforted. As I was lying on the floor, enjoying my little piece of heaven, the OT asked me a number of questions about my sensory diet. For some reason, I was able to rattle off a list, even though I hadn’t made one on paper yet. Here’s my sensory diet, so far:

1. Using a 15-lb weighted blanket when I get home from work and when I go to sleep at night.
2. Using a 4-lb or an 8-lb weighted vest when I need to ground.
3. Holding onto a velvet skirt and scarf, touching them with my hands and rubbing them on my face.
4. Bicycling on a stationary stand.
5. Playing with a gyroscope on a wire track, watching it spin around and around.
6. Playing with a magic wand that has spinning lights.
7. Watching my spoon mobile spin around and around.
8. Working on art projects–bending wire, putting things together and taking them apart, and watching them spin and sparkle in the light.

When I started feeling better, I got out from under the blanket and we worked on some exercises for me to do at home. These included therapeutic brushing, drawing an infinity sign, and lying on the floor watching a spinning mobile.

Therapeutic Brushing
My OT told me to try therapeutic brushing, twice a day, on my arms and legs. The purpose of the brushing was to “wake up” the nerves in my extremities, with the aim of helping to reduce my tactile defensiveness. She warned me that if I have any trauma issues, the therapeutic brushing might start unlocking memories in my body and generally erode my defenses. The brushing can also be very over-stimulating, even though it is supposed to be calming.

At first, the brushing at home seemed to go well, but very quickly, I began to resist it. I felt myself getting more and more anxious and over-stimulated as the week went on, and I began to feel somewhat raw and undefended. I came to the conclusion that after many years of trauma recovery work, I’ve stripped off as many defensive layers as I need to. The remaining ones are necessary and I’m not willing to mess with them. So, I stopped the brushing midway through the week.

Drawing an Infinity Sign
We worked on having me draw an infinity sign, tracking the pen with my eyes without moving my head. I found this exercise a bit frustrating. The purpose was to help me train my eyes to work independently of the rest of my body, with the aim of diminishing the dizziness from my gravitational insecurity.

I noticed that I when I used my left hand (my dominant hand) to draw, I tended to stare at the dot at the center of the sign and track the rest with my peripheral vision. When I consciously tried to track, my eyes seemed to go faster than my hand. When I switched to my right hand, however, I was able to synchronize my eyes with my hand, perhaps because I had to concentrate harder when I used my non-dominant hand. It’s also possible that my left brain is my visual center. I am the left-handed daughter of a left-handed mother, and that can mean that the typical functions of each hemisphere are switched. In any case, drawing with my right hand seemed to click.

Watching a Spinning Mobile
I was supposed to lie on the floor in my loft, watching my mobile spin and tracking the circle without moving my head. I tried it. Once. I immediately got nauseous and dizzy. I didn’t try it again from the floor. I can watch it spin nicely at eye level, so I’m sticking with that.

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