Journeys with Autism

I’ve decided not to pursue volunteering at the local school for autistic youth, and on Friday, I wrote a short email to my contact person to let her know. I’ve concluded that she is a very nice, enthusiastic, well-intentioned person who cannot focus on what I’m saying to her. I’m troubled that we weren’t able to have a meeting of minds, but I’m starting to put my energies elsewhere.

In the course of the entire process, however, I’ve found myself with a number of questions about the outcomes for teaching autistic kids—questions for which I have very few answers.

The school in town has a very focused and well-articulated mission statement. Its goal is to prepare students for paid employment, independent living, and integration into the local community. To these ends, the school a) implements an educational plan for each student that is largely driven by the special interests of the student, b) teaches independent living and vocational skills, c) provides training in social skills (such as how to make and retain friends, how to read nonverbal cues, and how to socialize in a group), and d) offers physical fitness and sensory integration work. The school makes use of different autism treatment options, including ABA, depending on what works for each student and family.

In short, the school’s aim is to integrate autistic people into the community by teaching them how to survive in a neuro-typical world. It’s a very good idea to give kids as many skills as possible for navigating the world they live in. The younger people who have posted to this blog have very positive things to say about the sensory integration work, social skills coaching, and other strategies that have helped them thus far. I wonder how we older autistics would be doing if we had had access to diagnosis and treatment when we were younger.

By the same token, I wonder what will happen to the younger people when they start to reach their thirties, forties, and fifties. Will life begin to feel more difficult because they have been making use of skills that do not come naturally to them? Will the work of integrating themselves into the larger community prove to be something they cannot maintain over the course of a lifetime? And if so, what support will be available for people who have been labeled high-functioning and have the resume to prove it?

I ask these questions because I have heard from so many people in mid-life who talk about the necessity of letting go of social adaptations that have become debilitating. I hear from people who feel housebound. I hear from people who can no longer work. I hear from people who have difficulty keeping food in the refrigerator because they have such an aversion to going to the grocery store. In other words, I hear from people like me.

I liken our situation to that of a friend of mine who had polio when he was a child. The illness left him partially disabled, but in his 50s, he began to feel unexpectedly and seriously debilitated. He found out that he has a condition called Post-Polio Syndrome (PPS). An article on the website of the National Institute of Neurological Disorders and Stroke describes the apparent cause of PPS in the following way:

“The poliovirus attacks specific neurons in the brainstem and the anterior horn cells of the spinal cord. In an effort to compensate for the loss of these neurons, ones that survive sprout new nerve terminals to the orphaned muscle fibers. The result is some recovery of movement and enlarged motor units.

Years of high use of these enlarged motor units adds stress to the neuronal cell body, which then may not be able to maintain the metabolic demands of all the new sprouts, resulting in the slow deterioration of motor units. Restoration of nerve function may occur in some fibers a second time, but eventually nerve terminals malfunction and permanent weakness occurs.”

In other words, the neurons that survive the poliovirus end up supporting not just the muscle fibers they were made for, but the muscle fibers whose neurons did not survive. After many years, the neurons that have been carrying all the extra weight begin to break down under the strain. The result is a second loss of functioning that can include increased fatigue, muscle weakness, and even muscle atrophy.

I raise this analogy because it so aptly expresses what many of us older autistics are feeling. We have an autistic neurology, and we’ve asked it to adapt, in a number of very complex ways, to the aims and values of neuro-typical society. After a lifetime of trying to pass, one person’s autistic nervous system can feel as though it’s done the work or three or four nervous systems. Last week, I said to Bob, “When you visit your frail 93-year-old father, please remember that how he looks on the outside is how I sometimes feel on the inside.”

I wonder whether the members of our “sink-or-swim” generation are feeling these effects because we had no educational supports, no therapy, and no explanation as to who we were. Perhaps because we were flying blind, we worked against ourselves for a long time, in a multitude of ways, and we unwittingly harmed ourselves in the process. After all, who wouldn’t feel tired after forcing a very sensitive neurology to support decades of neuro-typical activity?

Will the generation coming up fare better than we did? I hope so, but I have my concerns. In addition to learning social skills and sensory integration techniques, are the younger people being taught to have respect for being autistic? Are they being encouraged to value their autistic traits? Are they being taught to pay attention to their sensitivities? Do the people who teach them understand autistic people, or are they just looking to change behavior so that their autistic students will appear to be like everyone else?

So little research has been done as to the long-term effects of being autistic in a neuro-typical world. My generation, in its ad-hoc attempts to deal with a nameless condition, is all but invisible to the researchers. I hope the next generation will make itself better known.

© 2009 by Rachel Cohen-Rottenberg

Last night, I reached a milestone in my life. And today, I am so relieved. Tired, but unbelievably relieved.

The backstory: We’re having a new ceiling put into our living room because the old plaster was flaking off. The process entails moving everything out of the living room into the dining room so that the contractors can work. The whole job will probably take another three days. So everything is piled up in the dining room, and I have to walk through the mess if I want to use the bedroom, the kitchen, or the bathroom. Did I mention that I hate clutter?

Yesterday, the contractors were supposed to be here at 9 am. I had planned to do some writing in my loft in the morning, while they were here, and then hang out in the rest of the house after they’d left. It’s always difficult for me to have people in the house, especially ones making lots of noise, so I figured I’d burrow into my loft for a few hours, and by the time I came out, they’d be gone.

Nice plan, huh? Unfortunately, the guys didn’t get here until 11 am or so. Isn’t it fun when people are late and blow your plans right out the window? I got very agitated. I could feel my nervous system panicking. They had good reasons for being late, but I felt like my day was getting totally disrupted. 

In addition to getting here late, the guys were here a lot longer than I’d thought they’d be, and the whole thing became very overwhelming and disorienting. There is only so long that I can hide upstairs before I need to go to the kitchen and get something to eat. And, of course, the irony of the whole situation is that the guys doing the work are wonderful people—friendly, conscientious, and good at what they do. In other words, they’re the kind of people that anyone without a jangly nervous system would love to have around.

But I’ve got a very jangly nervous system, and by the evening, it felt like my day had been turned upside down and shaken a few times. Needless to say, I started to get upset. The disorder in the dining room was driving me nuts. My nervous system was so keyed up that I was shaking. I was feeling angry, and I said so, but the anger very quickly turned to tears. My meltdowns seem to follow this pattern these days. I go through the anger part really quickly and then go straight for the sadness.

I felt really exhausted, but it wasn’t just because of the work on the house. What happened yesterday was just the proverbial straw that broke the camel’s back. What I’m really exhausted by is all the energy I’ve expended since forever in my ongoing quest to become neuro-typical. Now that I’ve realized that I don’t have to pretend anymore, everything I do out in the world feels impossible. Working at the store feels exhausting, because every single time I have a conversation with anyone, I have the following script running in my head:

“Okay, smile……Make eye contact. No! Not that much……Pause. Say something helpful, but don’t jump in too fast……Wait……Wait……Now! Say something clever……Very good……People laughed……Now, make more eye contact……Okay, the conversation is winding down……Okay……Oh, shit, how do I exit gracefully from this interaction? I have no idea……Help……Okay, okay, I’ll just use my strong voice and act confident……There……I’m walking away now……G-d, I feel like such an idiot….”

For some strange reason, running this script just isn’t fun for me anymore.

My husband and I talked for a long time last night, and he helped me to see that almost all of the commitments I’ve made in the outside world are optional. I don’t have to do them. I made most of these commitments when I was still thinking that I just had to work really hard at the store, or on my OT work, or whatever, and things would get better. Even though I knew that I couldn’t change my neurology, even though I had accepted that I wouldn’t make friends at the store, even though I knew that the OT work might not have any effect at all, I still went into everything with the old idea of progress. It’s hard to shake. In large part, it consists of trying to be the NT that I think the world expects me to be. I know I’ll never get there, but over the course of my life, I’ve tried getting as close to it as inhumanly possible.

At some point in the past six months, it did dawn on me that I might not be the quite the actor I thought I was. But this realization didn’t stop me from trying. I still catch myself working on my big, ongoing, lifetime challenge to see how close I can get to “normal.” I used to wonder whether I’d actually fooled anybody, but you know what? I don’t care anymore. The only way for things to get better is for me to start untangling my true Aspie self from all my ridiculous mega-efforts to be someone I’m not. 

I’ve had an NT impersonator job all my life, and it’s time for me to retire. Fifty years is enough. It really is. I don’t need a pension, and I’m not going on the public dole. I’ve got all kinds of great things I love doing, and the old job is getting in the way.

So, although I love my OT, driving an hour to see her is really out of the question. I’m so exhausted by the intensity of all the sights, sounds, movement, and emotional energy out there in the world that I need to pull back in a major way and have some respect for myself. And I don’t want to work at the store again until I find some way to be there without constantly running my script. Having come to these realizations, I emailed my OT and the people in charge at the store. My OT wrote me back a really lovely, supportive email. I’m pretty sure I’ll get a similar response from the people at work. After all, I have taken care to surround myself with very nice people.

Meanwhile, here I am, living in this strange transitional state of knowing that the old ways won’t work, and wondering what the new ways will look like. I hate transitions, but there you are. I don’t know what the future has in store, but I do know that my marriage, my mothering abilities, and my capacity to be a friend all depend upon being in some kind of harmonious relationship with who I really am.

I’m only beginning to understand how different I am from most people. I’m only beginning to understand that most people do not experience the world with anything remotely approaching the intensity that I do. And I have to respect that. I have to respect the fact that just going outside and seeing all the green leaves on the trees can be a beautiful and overwhelming experience. It’s overwhelming because it’s so damned beautiful.

Perhaps I need to experience the world in small portions. Something like that.

It  feels so good to start over—to get up in the morning and tune into my hyper-aware, hyper-sensitive Aspie nervous system and see what we can do together. Last night, I didn’t sleep well, and when I have things to do in the outside world, I always feel very anxious trying to do them without enough sleep. But this morning, I realized that I didn’t have to go out there. I could be tired, and it would be all right.

The one outside commitment I’m keeping is to my new therapist. First things first. I want to work on accepting who I am, and she seems quite willing to help me. So that’s where I’ll begin. Again.

© 2009 by Rachel Cohen-Rottenberg

Every time I think I’m the only one who has ever said, thought, done, or experienced something odd, I find another Aspie who describes the experience precisely. In the past few weeks, a couple of commenters to this blog have described things that I’d never thought another living soul had ever experienced. I’ll share their comments, in the hopes that others might discover that they are not the only ones, either.

1. In her response to my Like a Deer Caught in the Headlights post, Soph wrote about the experience of being talked at and overwhelmed:

“On one recent occasion I literally did feel as if my brains had been scooped out and this person’s thoughts were all I had in my head. It actually was like brainwashing.”

I couldn’t believe it. She had described exactly how I felt every time I talked to my mother. My mother was quite a relentless talker, and she would talk over, under, around, and through me. It left me feeling like an empty shell holding only her thoughts and feelings. It took many years of recovery and empowerment work to be able to hear my own inner voice.

Even now, I find that when I’m around people who are relentless talkers, who won’t let me get a word in edgewise, or who won’t respond directly to anything I’ve said, I feel just plain lost. It’s like I just go away. Even though I may seem like I’m doing okay, my brain and all my senses are on total and complete overload.

Last week, I had another experience with someone talking at me. I am happy to report that this time, I just got up and walked away. Just like that! I finally realized that I had a very simple choice: I could protect the other person’s feelings, or I could protect my own very sensitive neurological system. I chose wisely.

2. In her response to my post about my second OT visit, Linda wrote about having a sensation of falling when going to sleep at night:

“I sucked two fingers at night until I was fourteen because the stimulation helped balance my system so that I didn’t have strange floating, falling and tipping sensations.”

This comment really knocked me out. As an adult, I have sometimes had the sensation of falling down when I’m falling asleep. I’ll be drifting off to sleep, and then I feel as though I’ve slipped backwards going down a stair or walking off a curb. It feels as though my legs have gone out from under me. I feel weightless, and then, I feel like I’ve hit the ground. I always wake up very startled by this sensation, and I nearly always let out a shout.

I’ve always wondered what this experience is about. I emailed my OT about it, and she said that she had heard similar stories. She didn’t have an immediate answer as to why I would have this experience, but she said she’d ponder some possible explanations. I’m wondering whether it has something to do with my gravitational insecurity. I have an appointment this week, and I’m looking forward to hearing what she has to say.

If you feel so inclined, let me know whether you’ve had experiences similar to the ones I’ve described. It’s been a very great relief to me to know that I’m not the only one.

© 2009 by Rachel Cohen-Rottenberg

On any given day, venturing outside the walls of my house feels akin to entering a sensory minefield.

Of all the things that feel difficult, driving my car keeps rising to the top of the list. I’ve had a lot of resistance to driving for some time now, which is difficult when your teenager goes to school an hour away.

My daughter has a friend nearby who goes to the same school, so our two families share the driving. My husband does our share of the driving, and the other parents do the rest. Occasionally, my husband is out of town when my daughter is with me. At those times, I am perfectly capable of getting up at 6:00 am, getting in the car by 6:45 am, getting my daughter to the bus stop by 7:15 am, and then driving home.

Perfectly capable. It all goes swimmingly. The problem is that I cannot do this routine every day. When I have to do it, I do a lot of advance planning to clear my schedule for the rest of the day. If I can’t clear my schedule, and I have to do something else in the world, the next day I’m pretty exhausted. I stay home, and if I’m lucky, I might remember to drink enough water.

For some reason, driving feels especially daunting. It must be all the attention that I have to give to so many things at once: other cars, stoplights, pedestrians, work crews, construction vehicles, and road signs. I simply must read all the road signs. Every. Single. One. Then, of course, there are all the various stores, and advertisements, and strip malls, and signs with print and flashy graphics by the side of the road. Of course, I simply must read all of the print I see flying toward me, even though I will never go to MacDonald’s or to my local Chevy dealer. When I think about driving, the sensory minefield image becomes especially vivid.

Now, it’s true that I drive an hour for my OT appointment, but that feels very different. I know that when I get there, I can relax my attention completely. My OT has set everything up so that life doesn’t feel like a sensory minefield. She even asks me how the drive felt. She doesn’t ask whether there was a lot of traffic, or whether I knew which exit to use. She asks how the drive felt. It’s a minor miracle, really.

The drive home is pretty good, too, because I’ve just spent an hour with someone who understands how much work it takes for me to do any of the following:

1. Drive
2. Plan a sequence of apparently simple tasks
3. Transition from one apparently simple task to another
4. Walk through a grocery store
5. Figure out how to put my shoes on without feeling dizzy
6. Keep up with a conversation between two people
7. Keep up with a conversation that involves more than two people
8. Be in a crowd in which people are talking loudly and/or all at once
9. Handle sudden or persistent noises
10. Keep track of visual stimuli, whether moving or stationary

She also understands that the following are not optional or a waste of time, but activities absolutely essential to my neurological health:

1. Walking or bicycling
2. Making lists
3. Singing and moving
4. Stretching
5. Doing my OT exercises
6. Touching soft fabrics
7. Watching spinning things
8. Writing
9. Resting under 30 pounds of weighted blankets
10. Doing physical labor (the more strenuous, the better)
11. Having a routine
12. Doing art work
13. Stimming
14. Having a good night’s sleep

The husband also understands all of these things. He’s amazing. Today, for example, he asked me whether I could take the car in for inspection, because he has a cold. He didn’t say, “You do it, honey. I’m sick.” He said, “I don’t want to do it, but I realize that if you do, it means dealing with the outside world.” He understands that I need a fair amount of lead time to prepare, and that I will need a great deal of recovery time when I get back.

I felt pretty goddamned awful about having to say no today, but it wasn’t because he was putting any pressure on me. It was because I had to say the words: “I have a disability, and I can’t do these things on the spur of the moment. We need to start thinking about getting some assistance from other people when you’re not feeling well.” It was so hard to say those words. I went outside, dug up some more grass (yes, we still have some, but not for long…) and felt really sad. On the positive side, however, saying those words helped lead me in precisely the opposite direction from a meltdown. Not bad for one lifetime.

I used to be able to do everything. Really. You must believe me. Everything. I could get up in the wee hours of the morning, drive long distances, go grocery shopping, work at a demanding job, teach my kid, support my family, pay the bills, cook, clean, plan birthday parties, include all the neighborhood kids in our Jewish holiday celebrations, plant a garden, exercise, and do just about anything anyone asked me to do, except stand on my head. But, as LizzieK8 said so beautifully in her comments to Monday’s post:

“We’ve spent so much of our life using up our energy to pass for normal, that we just don’t have the reserves for full-time passing anymore. We can do it when we have to (if given enough time to prepare), and we know better how to take care of ourselves when we’ve had to overextend our reserves, but we just don’t have it any more to do a full-time job, day in and day out.”

I burned a lot of energy in 50 years trying to be “normal.” I tried to do everything I thought the world demanded of me, and I did it with a very sensory-sensitive neurology, undiagnosed AS, SPD, dyspraxia, and who knows what else.

But those times are over. I’m sad that they’re over. And I’m also unbelievably relieved.

I’m finally learning that a human being is not an infinitely renewable resource. We have to take care of ourselves and use our energy wisely. For Aspies, just walking through the world and taking care of ourselves is a lot of work. For those of us who are feeling the effects of a lifetime of defying the way we were made, taking care of ourselves is the most vitally important work we can do.

© 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

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!

© 2009 by Rachel Cohen-Rottenberg

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.

© 2009 by Rachel Cohen-Rottenberg

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.

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.

© 2009 by Rachel Cohen-Rottenberg

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.

© 2009 by Rachel Cohen-Rottenberg