Journeys with Autism

I’m going to talk about my food weirdness. I’ve talked about most of my other forms of weirdness, and it’s time to come clean about my interesting relationship with food. Please know that I do so with the utmost faith that somebody, somewhere has had the same kind of experience. Okay? Ya hear?

I’ll begin with my odd food habits of the past few weeks. Since Saturday, February 27, I have eaten bananas mashed up with soy powder and sprinkled with cacao nibs for every meal. I kid you not. Our compost containers are filled with banana peels. Bob has taken to asking me every other day whether we have enough bananas in the house. I must have an intense need for potassium, because I’m eating an average of eight bananas a day. I can’t get enough of them. For snacks, I eat figs, dates, and nuts. I also eat whatever vegetables Bob happens to cook up: potatoes, parsnips, carrots, and squash. I’m particularly interested in the carrots, which taste awesome to me right now. And yes, I’m taking multivitamins so I shouldn’t die of rickets or anemia.

Why did I start in with the banana mush meals? Well, let’s just say that my recreational eating was starting to get a little out of control. I wasn’t gaining weight, but I was eating too much sugar, too much salt, and too much fat. I knew that at some point, I’d have to clean up my act (since I go through these cycles about once a year), and the magic moment came when I greedily gobbled up some dark chocolate and could hardly even taste it. I thought, wow, if chocolate doesn’t taste good to me, I need to clean up my act in a big way.

So that’s how I got started eating banana mush three times a day. And, truth be told, I can’t imagine ever eating anything else again. I assume that I will, but right now, I love the simplicity of making these strange little meals. I love how satisfying they are to my body. I love the consistency of this thrice-daily routine. And I love the fact that I’ve stopped addictively eating sugar, fat, and salt. Of course, now I’m addictively eating bananas, but so what? Autism is a world of extremes, and a banana addiction is small potatoes (sorry) when it comes to addiction.

Now, I know that the nutrition experts out there are shaking their heads and thinking, “This girl is headed for trouble.” But I assure you, I am not. I know that the experts say we’re supposed to eat a variety of foods every day, yadda, yadda, yadda, but that isn’t what my body is asking for. And besides, there are plenty of people on the planet who don’t get a variety of foods flown in from faraway lands on a regular basis, and yet, the human race survives. Go figure.

So what about my previous history of food weirdness? Let’s see. When I was a child, I didn’t have a lot of food weirdness, mainly because my parents were in charge of the food. Of course, there was the food weirdness of always eating my meals very fast, but that was my father’s doing, not mine.

You see, when I was a child, I used to save my favorite food for last. At dinner time, my favorite food was always a baked potato with lots and lots of melted butter. I would mash up the potato and the butter, and then I would let them sit there, at the top of my plate, while I finished the meat and the other vegetables.

One night, my father took it into his silly head to eat the food off my plate. And what did he go for? My potatoes and butter, of course. When I protested loudly, he said, “What? You’d deny food to your own father?” And then he jabbed the back of my hand with a fork. My father was probably autistic, but this bit of drama had nothing to do with autism. It was just a garden-variety abuse of power. (Don’t you love the way I’m sprinkling food idioms into this post?) Anyway, after that, I took to practically inhaling my food. I have two autistic friends who eat faster than I do, but usually, I leave the competition in the dust.

As a young woman, I became obsessed with being skinny, and I started eating cottage cheese with pineapple every day, topped off with a nice espresso and a cigarette. After my gag reflex started kicking in, I switched to eating soybeans and vegetables three times a day. And I don’t mean tofu or tempeh or any of those lower forms of soy nutrition; I mean cooked soybeans, three times a day. God, it was boring (and I was hungry, like, all the time), but I was saving the planet from rapacious meat producers, so it was worth it.

That is, until I couldn’t stand it anymore and ate yogurt like a madwoman. Now I can’t even look at yogurt without getting sick to my stomach.

I had a rather strange few months in my late 30s in which I started eating matzoh and almost nothing else. It wasn’t a good time in my life. I was a little stressed out, and somehow, the matzoh helped. I don’t know why. Maybe it was the reminder that my ancestors in Egypt were even more stressed than I was? Or felt equally enslaved to their jobs? I don’t know. I quit the matzoh when I got down to 98 pounds and realized that I wasn’t feeling very well.

Since then, I’ve gotten back to a healthy weight, and now I eat bananas all the live-long day. Yum.

Okay, so come clean, y’all. What’s your food weirdness?

© 2010 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

I’ve been reading lately about Asperger’s and sleep disorders. From what I can gather, the problems fall into two categories. Some Aspies can fall asleep without a lot of trouble, but wake up several times during the night. Other Aspies have great difficulty falling asleep, but few problems staying asleep. At any given time, an Aspie can have one difficulty or the other, or a combination of both.

My Life as an Insomniac
I’ve experienced both types of difficulties, but my biggest challenge has always been falling asleep. As a child, it took me 2-3 hours to fall asleep at night. I had all kinds of ways of passing the time. My favorite was to hide a small transistor radio under my pillow and listen to talk shows about baseball or hockey. I’d turn the volume down low so that my parents couldn’t hear. In the absence of a radio show, I’d create an elaborate fantasy in my mind about becoming the first female baseball player and pitching a perfect game in the World Series. (For details about this particular portion of my interior life, see my earlier post.)

Outside of baseball and hockey season, I’d run through all the songs from Mary Poppins or The Wizard of Oz in my mind. We had LPs of each, and I’d listened to them so many times that I could recreate them verbatim in my head. If I were still awake, I’d make up stories about being adopted by some all-American family, like The Brady Bunch. This particular pastime would generally put me to sleep.

In the midst of the radio shows, the musicals, and the hope for a TV family, there was a constant anxious undercurrent. The only way I can express it is to say that I was just plain afraid to fall asleep. Specifically, I was afraid to lose consciousness. As a child, I was sure it would hurt to drop from consciousness into sleep, rather like falling from a second-story window onto my head. I used to go around in circles, believing that the longer I stayed awake, the worse it would hurt to fall asleep. Of course, the fear would only increase the wakefulness, and the wakefulness would only increase the fear.

As an adolescent, the problem became worse. High school meant loads of homework, constant sensory overload, and an alarming increase in the dysfunctionality of my home environment. I’d routinely stay up studying until 3:00 or 4:00 in the morning. I don’t think I was really learning anything. I was just keeping myself awake by staring at print and taking notes. Of course, having to get up a few hours later for a 7:30 bus didn’t help my stress level at all. By the time I left home, I was already chronically and painfully insomniatic.

As a young adult, I struggled with this condition for the next ten years. Not only was I unable to fall asleep easily, but I also started waking up in the middle of the night and often had difficulty getting back to sleep. For a short time, I used over-the-counter sleep remedies, otherwise known as The Pills From Hell. They suppressed my REM sleep, so although I slept, I woke up the next morning stressed from not having dreamt. The stress created so much pain in my body that I continued taking the pills just to fall asleep, which led to a vicious cycle of increasing stress, increasing pain, and increasing insomnia. The cycle ended two weeks later, when I finally realized why my mother’s friends had gotten addicted to sedatives. Never sleeping ever again was better than the alternative, and thus my two-week foray into the land of sedative medication came to an abrupt and bitter end.

I continued to struggle until 1987, when I was a graduate student and went to UC Santa Cruz for a weeklong conference. After three terrible nights of not sleeping at all, I drove myself to the emergency room, signed myself in, and told the attending doctor that he had two choices: give me pills to help me sleep or hit me over the head with a hammer. He gave me the pills. They were tricyclic antidepressants called Amitryptiline, and he had used them himself when he’d come back from Viet Nam in a state of traumatized exhaustion. After taking the first one, he’d slept for two straight days.

That sounded good to me. So I took the first tablet at 8:00 that night, and the next thing I knew, it was 6:00 the next morning. I had fallen asleep easily, I had slept through the night, and for the first time in my life, I felt happy to wake up and start the day. My heart was open, the birds were singing, and I was connected with everyone and everything. I felt, for lack of a better word, normal. At least, a lot more normal. Okay, a little more normal, but in a major way: I understood why other people got out of bed and looked forward to the day.

Fast Forward to the Present: Fighting Sleep
I’ve taken the same medication for over twenty years, and I no longer suffer from chronic insomnia and its associated physical and mental pain. The medication I take is non-addictive and non-narcotic. It allows me to get gradually tired and sleepy, like a, um, normal person. That’s the good news.

The bad news is that I now resist that effect of the medication. I resist going to sleep. Some people have a very good nighttime ritual, with a routine bedtime and everything. Some people can’t wait to get under the covers. Not me.

I’m okay until about 10:00 at night. I’ve generally had a good day. I’ve worked out, eaten healthy food, drunk plenty of water, spent time with my family, gone out to work, and immersed myself in writing or singing or art work. I’ve taken very good care of myself. Then 10:00 pm comes, and I stumble off the path. Consciously and willfully.

It starts with turning on the TV and watching some detective show, like Law and Order or CSI:NY. While I’m watching the show, I start getting hungry. At least, that’s what I tell myself. But I’m not really hungry. It’s more like my head saying, “Enough with the healthy food. Enough with the exercise. Enough with taking care of yourself. Let loose. Eat just to feel the food in your mouth. Eat whatever you want. In fact, bring up a spoon and a bowl, and eat in front of the TV, so you can feel worse and worse about the poor dead people on the show, and you can eat more and more to feel better. Won’t that be fun?”

That’s how it starts. If I’m very lucky, I can extricate myself from the TV by 11:00. You’d think by that point I’d be ready to call it a day, but you would be wrong. I come downstairs, and then I begin this strange, repetitive, non-functional routine (ever heard of those?). It consists of first going to the pantry and eating, in succession, some spoonfuls of almond butter (hmm, smooth and crunchy and healthy), some spoonfuls of tahini (hmmm, smooth and smooth and healthy), and some spoonfuls of granola (yum, refined sugar and crunchy stuff, too). Then it’s time to check the freezer, where I eat, in succession, spoonfuls of each kind of soy ice cream, spoonfuls of any other kind of ice cream, and then some chocolate. If there happen to be any large chunky things in the ice cream, like pieces of Snickers bars or cookie dough, all the better. I can begin excavating.

By this point, it’s about 11:30, and I’m almost literally stumbling around because I’m so tired. But I am determined to stay awake. So I go through the whole routine again, telling myself that I’ll just eat one more thing, and then that will be enough. It never is, of course. I finally have to close the freezer door and admit defeat. Whatever it was that I was searching for in the kitchen simply isn’t there. I could have avoided the entire last hour and a half and just gone to sleep.

But I never do. I’m like a kid again, afraid to go to sleep, afraid to let go of the day, afraid to lose consciousness.

Up to now, this problem hasn’t felt insurmountable. Lately, though, as I get more in tune with how the Asperger’s affects me, this strange late-night TV-and-food ritual has begun to make me feel literally sick. I go to bed feeling congested and sick to my stomach, and I wake up sick to my stomach and not wanting to eat or drink a thing.

I’m not sure how to work out of this pattern. I’m beginning to see its cause, however. Going to sleep means that I have to put in my earplugs, close my eyes, and stop ordering my world. I have to stop tracking and translating all the visual and auditory chaos I work so hard to keep in order.

How do I stop working so hard? How do I turn off the hypervigilance, the need to scan my environment and notice all its details? It feels like it hurts to stop. And I’m afraid. What will happen to the world when I sleep? What will happen to me? Will the chaos swallow me up? Will I awaken to a world that is completely overwhelming? Will I be able to put it back together?

So I use food and the TV to zone out while staying awake. I’m not working quite so hard. After all, the TV is creating its own order, and the food is just sitting there, waiting to be eaten. But I’m still vigilant. I’m still working. And ultimately, I have to go to sleep, and it never gets any easier.

There must be a better way.

© 2009 by Rachel Cohen-Rottenberg

I’ve been having so much fun lately working with my hands. It gives me such a sense of balance and well-being.

Until last week, it had been a long time since I’d done any sewing. My last major sewing project had been a baby blanket I’d designed and sewn by hand when my 16-year-old was an infant. But more recently, I’d had a dress hanging in my closet for a few years, and while I loved the material—a beautiful Guatemalan cotton print—the dress itself had never really suited me. It was a winter dress, with long sleeves, and not all that comfortable. I think I wore it once.

So last week, I realized that it was really okay to take the dress apart and make something else with the fabric. I’m completely in love with Guatemalan fabrics and patterns, so I decided to make something I’d get to look at on a regular basis. But what to make?

Well, first I took one of the panels from the long part of the dress and sewed it into a simple bag. I used the ties that were on the waist of the dress for the over-the-shoulder strap. Here’s how it came out:

Then, I decided to make a skirt from the remaining panels. I think it came out quite well:

I’ve still got some material left. I’m thinking that I’ll save it for making some sort of mobile. Perhaps a set of stars? Not sure, yet.

I’ve also been keeping up with my knitting. Several weeks ago, I bought a knitted 100% silk scarf at the thrift store for $6.00. It was really long, and I figured I’d unravel it and make something out of it. When I got it home, I noticed that it had a mildewy smell, as though it had been in a damp basement for several years. So, I put it through a gentle cycle and then laid it on a towel on top of the radiator to dry. The next morning, I unraveled the scarf and got a giant ball of yarn. The mildewy smell was entirely gone, and about half the ball of yarn became a very soft, fuzzy hat:

I’ve also made some good progress on my sweater project. I’ve got the front and back completed, as you can see:

I’m also nearly finished with one of the sleeves. As soon as I get both sleeves done, I’m going to block the various pieces and then make some time to see Rachel at the yarn store for help with sewing it all together. I’m not really in a rush to get the sweater done before spring. At this point, making the sweater is as much about learning the skills needed as it is about making something to wear.

Today, I’ve put the fiber art aside because we have one of my favorite Jewish holidays coming up: Purim, which begins on Monday night. (If you don’t know about Purim, you can find some good, basic information here. The page even includes a gluten-free recipe!)

Then, we made the chocolate chip kind:

They smell and taste as good as they look!

© 2009 by Rachel Cohen-Rottenberg