In the course of reading the book, I’ve learned that I think in visuals far more than I’d realized. Sometimes, the visuals are clear pictures, and sometimes, they consist of outlines, textures, or colors that represent ideas and feelings. Because I’ve never been any good at representational art, I’ve never considered myself a visual thinker, but it’s clear now that I am most comfortable when I’m thinking visually and associatively, rather than verbally and linearly. I’m coming to this realization rather late, I think, because I grew up in two excessively verbal and vocal cultures—American culture and Jewish culture—and I learned to navigate so well in words that I couldn’t see the process behind the words until now.

As you’ve probably noticed, I’ve been writing about one post a week. I still love writing, but I’ve found that I need to balance my identity as a writer with living in the world of the visual. So, I’ve been immersing myself in a number of art projects and finding out just how much I love color, shapes (especially helixes), and the process of putting something together that wasn’t there before. In this post, I want to share what I’ve been doing—both over the course of the last year and at the present time.

I love making wind chimes, and in the spring, I made two wind chimes from parts that I “borrowed” from an old plastic xylophone.  (The plastic part of the xylophone became a lobelia planter for the garden.) Here are the wind chimes, one made from warm colors…

 











…and the other made from cool colors:

 











More recently, I’ve made two pieces of art from the contents of an old, broken digital camera and printer dock, along with some springs and beads I picked up at the thrift store:

 











I’ve also been delving into sewing and quilting. First, I created a new backpack from the remains of a skirt I made last year. I love the deep blue, teal, and purple of the Guatemalan fabric, and I fashioned the backpack so that the pull straps close the top of the pack when you put it on:

Then, I started working on a quilted wall hanging made of fabric from clothing and other items that were wearing out. While I was in the process of cutting the material, I decided to make a potholder from the scraps. It’s unusual that I make anything unplanned and asymmetrical, but I had a good time patching the potholder together and finding out what would happen. I like the result very much:

I still need to sew the backing onto the wall hanging. When it’s done, I’ll post a photo of it.

© 2009 by Rachel Cohen-Rottenberg

The Experience
The therapist is in New Hampshire, about 35-40 minutes from where I live. I found the drive on Tuesday to be very challenging. I was anxious about meeting a new person, and I was desperately hoping that she wouldn’t say something clueless or patronizing about AS. I had sent her a link to my blog so that she’d have some background on where I’m coming from, but still, you never know.

I was also afraid of getting lost, because like many of you, I was born without any discernable sense of direction. I had given myself extra driving time in case I misread the directions she’d emailed to me. Fortunately, at my request, she had taken care to add a lot of detail, so I got to her office with 15 minutes to spare.

Within five minutes of my arrival, the therapist saw me parked outside, came out, introduced herself, and invited me to come in and get the session started early. Of course, on this basis alone, I liked her immediately. How many times does a health professional get your appointment started on time, never mind early? So I started to feel optimistic.

She began the session by saying that she really liked my blog, and that I was doing a great service with it. She was very straightforward and sincere when she said these words, so I had no choice but to believe her.

That was a good start. I began to feel even more optimistic.

Since we hadn’t talked on the phone, she asked me what I wanted from the therapy. I said that I wanted to work on accepting myself just as I am, which includes having the disabilities that come with Asperger’s. At this point, she very gently stepped in and said, “You know, I think of Asperger’s as a different way of thinking and being, not as a disability.”

I know that I should have felt even more optimistic in the face of this statement, but I was determined not to let her sugarcoat my experience. (I don’t think that’s what she was doing, but the fear was there, so I went with it.) I started my shpiel about feeling that on some days, Asperger’s gives me lots of strengths, and that on other days, it’s a really debilitating disability. I described some of my sensory deficits, my difficulties going shopping, cleaning my house, driving, and so forth. I expressed my frustration and the low self-worth that emerges when I’m not able to do basic tasks without feeling cranky, dizzy, and exhausted.

She acknowledged my frustration, and then she said the most amazing thing. “Well,” she said, “it’s true that you can’t go grocery shopping very easily, but on the other hand, how many people who go grocery shopping easily can write the way you do?”

I had to acknowledge that there was truth in what she was saying. Then, when she asked me about what I do out in the world, I talked about working in the thrift store. Once again, I focused on how hard the sensory overload felt, and said that I didn’t feel that I could do much at the store at all. When she heard that, she once again put my Aspie strengths into focus and said, “Even in the short time you’re there, you’re doing a great service at the store, and the staff values it.  How many people can just walk into a place with your kind of focus and start organizing things?”

This type of interaction kept happening over and over. I would mention something I was doing, and then proceed to devalue it by bringing up all the things I couldn’t do. She kept turning my statements around to give me a different perspective. Her respect, and even admiration, for people with Asperger’s was palpable. I finally broke down and said, “You know, I just feel so badly about myself, even in this room with you. I can’t maintain eye contact with you because I need to look at the floor in order to think. I feel like I talk too much and get disoriented and exhausted by it.”

At this point, your average therapist would have given me that benign therapist look. You know the one I mean. It’s that look that says, “There is something deeper here you’re not seeing. I know, because I’ve studied psychology.”

But this therapist said, “It’s perfectly fine that you don’t make a lot of eye contact with me. And if you need to be quiet at different times during our session, that’s fine, too. By the way, is there anything in this office that is visually distracting to you?”

It’s a good thing I was sitting down, because if I’d been standing up, I probably would have fainted. It’s so unusual that anyone asks me that question that at first, I was shocked. But then, I realized that I’d better seize the moment, so I said, ”Yeah, actually, that stuff piled on the bench over there is bothering me because it’s kind of random, and that book over there is bothering me because it’s kind of tilted and the color on the cover hurts my eyes.” She said she’d get that fixed for next time, and that if I felt distracted by the environment in any other session, I should speak up.

Before we finished the session, she talked about how Jung believed that mid-life is an opportunity to truly become ourselves—an opportunity that takes a lot of courage to embrace. At that moment, I felt very grateful to have Asperger’s, because its challenges and its strengths are giving me the impetus I need to find that courage and to be myself.

New Directions
So, I’ve been thinking: What can I do well, and what are my difficulties? Consider the following:

What can I do well? 
I can write in a way that has meaning for me and for other people. I can sing in a strong, clear voice. I can make beautiful art from found objects. I can dig up a whole yard using a shovel, a lot of muscle power, and a ton of sweat. I can plant beautiful flowers, vegetables, and herbs that bring enjoyment to my family and to my neighbors. I can de-clutter my living space and organize my house so that it feels calm and restful. I can do all the dishes and the laundry (although my husband and I compete over the laundry, because we both enjoy it so much). I can be a good listener for Bob and for Ashlynne. I can give them honest, constructive responses to the challenges they face in their own lives. I can focus like there’s no tomorrow. I can get upset with injustices that other people never even notice. I can advocate for my kid when she needs it (although, these days, she’s quite good at advocating for herself). I am highly empathic, hard working, fair minded, honest, trustworthy, and without guile.

What are my difficulties?
Cleaning my house, food shopping, cooking, driving, making small talk, being around a lot of people, and working at a conventional job.

Anybody notice anything?

1. The things I can do well far outnumber the things I can’t.

2. No one can do everything on both lists.

3. The things that I can do well are just as important than the things I can’t. After all, what would I rather do, make small talk while feeling desperate to be understood, or write a blog so that none of us has to feel so alone? And at this point, I don’t need to have a conventional job, so why should I feel so badly about it? I should be happy!

I used to think that all the basic tasks I find so difficult were the most important things. I used to think that all the things that I do well were just self-indulgent hobbies and useless oddities that were helping me pass the time between now and the moment of my death. I kept looking out into the neuro-typical world and feeling “less than” because I couldn’t shop and socialize and get invited to parties, or even get noticed by most people at all.

I now realize that when people ignore me, it’s not because they don’t see me, it’s not because I’m not important, and it’s not because I’m missing a piece. It’s because I’m putting out very intense signals that aren’t the ones they’re expecting. My husband has told me as much. All those many times that I’ve been ignored, or patronized, or laughed at, I thought it meant that there was something wrong with me. Now I realize it means that there is something very right with me. I’m very intense, I’m very focused, I’m very loving, I’m very sensitive, I’m very empathic, and I do not suffer fools graciously. I think that’s all very good. In fact, I think it’s better than very good. I think it’s great.

I’m not like most people, but there is nothing wrong with me. For the first time, I am beginning to feel that I have value. I have my strengths and I have my difficulties, just like everyone else. I don’t have to apologize for the things that are difficult. I just have to assert my strengths and ask for what I need.

So, for example, when I go to work this Monday, I’m going to ask that someone turn off the speaker above my head while I’m working on the jewelry. I’m not going to say that I’m sorry to trouble them, and I’m not going to feel small and scared. I’m just going to say that I’m very sensitive, and that everything comes into my senses at the same volume and with the same intensity, both of which are very high. I’m going to say that listening to the music, hearing people talking, and trying to concentrate on the jewelry is more than I can do at once. In other words, I’m going to ask for the staff’s assistance in making the environment work for me.  

This is who I am. I get to be here, too. I don’t have to pretend to be neuro-typical anymore. I just have to be myself, the way I was made. It’s the most important thing I’ll ever do. And like most important things, it’s also the most difficult.

© 2009 by Rachel Cohen-Rottenberg

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

I’ve planted another garden to the left of the one in the picture, but it’s not quite finished yet.

When I’m not digging up our entire lawn and planting things, I sometimes turn my attention to art. Here is a project that I just finished: a shadow box!

 
This project was so much fun. I worked on it when my mind was too full of words and I needed a different kind of concentration.

I bought the shadow box years ago, when my daughter was small, and it had been sitting in the attic unused. So, I decided to create “The House of the Worry Dolls.” The dolls are kind enough to hold many of my worries. At least, that’s what it says on the little piece of paper that came with them. If you look carefully, you can see a doll in each of seven rooms. (One of the dolls is in a tiny coffee mug.)

Each room gets its own hanging mobile or lamp. The origami crane at the top of the house came courtesy of my daughter; years ago, when we were homeschooling in a cafe, she made the crane out of a used teabag packet. The thermostat is from our old heating system, the two cats used to be earrings, and I found the orange Matchbox car out in the garden when I was digging up the grass.

And finally, here are some recent photos of my daughter Ashlynne. As you can see, she jumps for joy at the beginning of spring…

She hasn’t forgotten her powerful karate kicks…

 
And she has a style all her own!

Occasionally, she will even sit on a couch in the middle of the street:

Why? Because she’s resting. She’s been working hard. At what, you ask? At carrying the couch several blocks with her friend, of course! A neighbor had put the couch outside to be taken away for free, and Ash and her friend decided to carry it home. When they showed up with it, I told them to just leave it on the porch, and Bob and I would help them carry it up the stairs to Ash’s room. But they were on a roll. They brought the couch all the way upstairs as well.

Girl power!

© 2009 by Rachel Cohen-Rottenberg

I learned so much from working on this sweater. I figured out how to shape a collar, how to block the pieces, how to knit the shoulders together, and how to seam. I had planned to get help from the nice lady at the yarn store, but then I decided it would be more fun (and a better learning experience) to do everything myself. Typical Aspie, I know, but what can I do?

It’s actually chilly enough tonight for me to wear it. Our mornings have been below freezing lately, so I might get a little more wear out of it before spring begins in earnest. I’d much rather have the spring start already, but since it’s taking its time, the sweater is a nice consolation prize.

© 2009 by Rachel Cohen-Rottenberg

Since I’m going to need some time to rest and prepare, I probably won’t be able to post for several days. In the meantime, I thought I’d put up some photos of my latest art work.

I’ve continued to fuss with the crown I made a few weeks ago. I’m going to consider it finished now. I’ve added some more beads, a copper bell, and a lapis pendant that makes the bell ring:

I also decided to add several wind chimes to the spoon mobile, all of which have their own string of beads. Now the mobile makes a beautiful sound and has even more sparkling color than before:

Finally, I made a celestial mobile with smaller wind chimes. I love any kind of celestial object, so I found as many as I could and put them together:

Happy Passover, Happy Easter, Happy Spring to all!

© 2009 by Rachel Cohen-Rottenberg