Journeys with Autism

Recently, a friend sent me a link to an article written by a young man named Jacob Artson. Jacob is 17, and describes himself as nonverbal, severely autistic, and developmentally disabled. His article, Encumbered and Blessed, is a very moving, honest, and insightful treatment of his experience of inclusion and exclusion in diverse communities.

Jacob’s father is Rabbi Bradley Shavit Artson, and the article appears on the website for the United Synagogue of Conservative Judaism (USCJ). I have no affiliation with the USCJ, and it is not my intention to proselytize for Judaism by referring you to this article. (I do not allow proselytizing on this blog or in my life.)

I am posting the link only because the article is an absolute gem. I’d be very interested in hearing your responses to it.

© 2010 by Rachel Cohen-Rottenberg

Last night, I did something that I should have known wouldn’t work. But because I’m still winding down from trying to impersonate an NT, I did it anyway. And today, I’m a bit of a wreck.

Do you want to know what I did? It will knock your socks off. Really. You’d better be sitting down for this one. I’m serious. If you fall over and bump your head on the floor, it’s not my problem.

Here’s what I did: I went out for dinner with my husband, my daughter, and one of her best friends.

That’s all. Really. There’s no more to it. The part of my brain that still thinks I’m neuro-typical says, “That’s all? That’s a mistake? What the hell is your problem?”

Fortunately, a great deal more of my brain understands that I’m autistic. Those parts of my brain are all acting in unison, saying, “Try and explain to the nice people who read your blog why going out for dinner with three other people was a serious lapse in judgment.” So I will.

Here’s how it went: I spent the day gardening yesterday, and I felt great. About 5:00 pm or so, my husband said, “Do you want to take the kids down the street and get some Thai food?”

I simultaneously thought, “No!” and “Yeah, that’d be great!” The reason it felt so great is that we all love Thai food, the restaurant is a short walk from our house, the people who run it are incredibly friendly, and the last time we went, they made special provisions for my inability to deal with lots of noise.

The last time, it was just Bob and me, and the place was very crowded. There were several small, adorable children, making several loud, repetitive, adorable, childlike noises, and after sitting at the table for a minute or so, I realized that I’d never make it through dinner in one piece. There is a quieter part of the restaurant, and Bob asked whether we might sit there. The response was that they don’t usually open up that space for dinner, but they understood that I couldn’t enjoy my meal otherwise, and they were gracious enough to seat us well away from the noise. We ended up having a very good time there, and we thanked them profusely for being flexible.

Yesterday, this lovely experience was in my mind when I said, “Yeah, that’d be great!” I figured that if things were noisy, we could just sit in a quieter part of the restaurant. I forgot about the part where sitting and talking with more than one person at a time is impossibly difficult.

Sitting with Bob is simple. It’s very little work. Sitting with Bob and Ashlynne is a bit harder, but because I know them well, and they respond to my need to slow a conversation down, it’s quite doable. Sitting with Bob and Ashlynne and her friend (who is a regular and welcome visitor to our house) is exponentially harder. And did I mention that Ashlynne and her friend are teenagers, and that like many neuro-typical teenagers, they talk very, very fast? Consider it mentioned.

So there we were, sitting at the table, and very quickly, I began to feel like the boring autistic person in the group. Everyone else was bright and chipper, and I was feeling like a dud because I couldn’t keep up. At that moment, it did cross my mind to leave, but that’s when the habit of pretending to be neuro-typical kicked in. And such a bad habit it is, too.

So, I stayed for the entire dinner. I tried to keep up. I asked questions. I made jokes. I responded to the things that other people said. And I tried very hard to mask the fact that I was getting disoriented and exhausted. Of course, I was keenly aware of what a strain it was. I was conscious that I was dissembling, and that my face was not reflecting the enervating effect of every word that was coming out of my mouth. The whole experience was very familiar, especially the part when the migraine started coming on. Somehow, the familiarity of the strain I was under made it that much harder to detach from the situation and get out of there.

And I really wanted to be there. I enjoy Ashlynne and her friend, and it was fun to watch them have a good time together. And yeah, okay, I didn’t leave because, goddammit, why should I? Why should I have to leave when everyone else is having so much fun?

When the girls finished their meals, they decided to go, so Bob and I got to sit alone for a little while. By that point, I was pretty much down for the count. As we were walking home, I told Bob that the whole thing was very, very hard for me, and that I probably shouldn’t try it again. It was difficult for me to translate the experience for him, so I finally said, “Suppose you had to get some cans down from a very high shelf, and that the best you could do for an entire hour was to jump, and never quiet make it, over and over and over, except that every now and then, you actually touch one of the cans, which makes you want to jump and try it again. That’s how it feels.”

He nearly shivered at the thought, and we talked a bit about the difficulties of autistic-to-neuro-typical translation. When we got home, I realized that it would really help me to show him Amanda Baggs’ In My Language video and look at her blog with him. And it did help. I wanted him to have more of a sense of the dissonance between how a person seems on the outside and what’s really going on inside. He was very taken with everything I showed him. He’s always been supportive, but her blog helped him understand more about how I work and how I feel.

So that was a very good outcome of the whole disaster.

Today, however, I’m paying for it. My bladder hurts. My neck aches. And despite having slept in for half the morning, I’m physically and emotionally exhausted. Fortunately, I can still write. Later on, I’ll get under my weighted blankets and rest.

© 2009 by Rachel Cohen-Rottenberg

I saw my new AS-literate therapist for the first time on Tuesday afternoon. We’re going to have three sessions and then evaluate whether we can work together, but I’m feeling very good about her already. In many ways, seeing her was a very intense experience, and it has sent my thinking in very positive new directions.

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

When I left academia, I began working in the corporate world as a technical writer. I felt a certain sense of belonging there, but after watching layoff after layoff, I realized that all of it could end abruptly. So, I learned not to get too attached to any job.

At around the same time, I started giving more attention to my spiritual life. I had always had very deep spiritual yearnings, but my parents had been atheists, and I had no spiritual language. Because my family was culturally Jewish, I decided to explore my spiritual life through Judaism. I was hopeful that doing so would lead me to a community I could call my own.

When my daughter was small, I began going to services at the local synagogue. And, with typical Aspie flair, I immediately pulled out all the stops. I brought home tons of books. I learned to lead the services. I started studying Torah every day. I was involved in several community service projects. I became more observant at home. And I took my daughter to just about every Jewish event I could find.

In short, I was determined to do everything “right,” convinced that if I did, I’d finally find the key that would open the door to a world of belonging. Of course, in the midst of my zeal, my very good instincts were warning me that maybe, my whole approach might possibly, by some statistically insignificant probability, lead me in the wrong direction.

But I didn’t pay much attention to my instincts. My need to belong blinded me to just about everything else.

Ultimately, of course, I figured it out. I learned that doing everything “right” didn’t get me what I wanted. In fact, it only exhausted me, angered me, and led to my fleeing with what was left of my sanity. In other words, I pretty much repeated the pattern I’d played out in academia, except that this time, I put much more of my heart into it.

In dialogue form, here’s how it went, from the moment I walked in the door, until the moment I left, a year and a half later:

Me: “Hi, I’m Rachel, and I really want be part of your community.”
Other person: “Hi, Rachel, and welcome. We hope you’ll be comfortable here.”
Me: “THANKS. WHAT A GREAT PLACE. I’M SO HAPPY TO HAVE FOUND IT!”
OP: “It’s very nice to meet you, too. So, will you be committing to an individual or a family membership?”
Me: “A family membership! Definitely! You know, I really love this place, and I want to be part of it!”
OP: “And we want you to be part of it.”
Me: “Thanks! I’m going to start learning the services here.”
OP: “Wonderful! You know, when the rabbi is on sabbatical, we’d love to have you help lead services. Would you like to do that?”
Me: “YES! I WOULD LOVE TO! VERY MUCH!”

[A few months go by.]

OP: “Wow, we really love the way you lead services. You should do it every week!”
Me: “Thanks!”
OP: “And by the way, your daughter is beautiful. We love seeing her up there with you.”
Me: “Thanks!”

[A few more months go by.]

OP: “You know, you can’t have your daughter up there with you when you lead services.”
Me: “Why not?”
OP: “Because she plays with her dress and walks around up there.”
Me: “But she’s so joyful. People always tell me how much they love to see her singing the prayers.”
OP: “Well, I don’t know about that. It looks to some of us like you’re not taking things seriously.”
Me: “What? How can you say that?”
OP: “You guys seem to be having too much fun up there. You’re being frivolous.”
Me: “What?”
OP: “I’m afraid your daughter will have to sit down in the congregation while you’re leading.”
Me: “What? She’s only 4. She loves being here, but she can’t sit without me the whole time. She’s too little.”
OP: “Well, then you can’t lead services anymore.”
Me: “What? How can you take that away from us? We haven’t done anything wrong.”
OP: [blank expression]
Me: [look of shock and disbelief]
OP: “By the way, do you keep kosher?”
Me: “What?”
OP: “Do you keep kosher?”
Me: “Well, um, sort of…I’m a vegetarian.”
OP: “Well, you know, there’s a lot more to it than that.”
Me: “Okay.”

[A few more months elapse.]

OP: “Hey! Your kid can’t draw with crayons on Shabbos. No drawing allowed.”
Me: “But it helps her occupy herself during services every week.”
OP: “Yes, but that’s the rule.”
Me: “But this isn’t an Orthodox shul. What are you TALKING about?”
OP: “Oh, for goodness sake, what about Legos? Why can’t you just bring Legos? Why can’t parents JUST BRING LEGOS?”
Me: “My daughter doesn’t like Legos.”
OP: “You know, if you want to be part of this place, you’re going to have to start following the rules and stop being so frivolous.”
Me: “Frivolous? Moi?”
OP: “Yes.”
Me: “I’m not being frivolous. I take Torah very seriously. And I try to bring a lot of joy to it. I thought that was the point.”
OP: “What gave you that impression?”
Me: “The prayer service. The teachings. My experience of G-d. What am I missing here?”
OP: “You need to fit in better, stop asking so many questions, and stop taking everything so seriously.”
Me: “I’m taking things too seriously? I thought you said I was being frivolous.”
OP: “Stop twisting my words.”

[A few months later.]

Me: “What’s going on in this place? There aren’t any children coming to services anymore.”
OP: “People thought they were too distracting.”
Me: “But they weren’t loud. They were just walking around and being with everyone in the sanctuary. Isn’t that what you want? To have children being cherished by the adults in the community?”
OP: “They don’t have to be in the sanctuary.”
Me: “But I thought this was a spiritual community.”
OP: “Oh, for goodness sake. This isn’t a spiritual community. It’s a social club.”
Me: “Oh.”

[At long last, the rabbi comes back from sabbatical.]

Me: “It’s been awful while you were gone. There are no children in the services anymore. If people want to support Jewish continuity, keeping the children out of the sanctuary isn’t the way to do it.”
The rabbi: “I agree.”
Me: “Well, if I’m right, why do I get no support on this issue?”
The rabbi: “Because the people who don’t want children there are the founding members of the synagogue, and you’re not.”
Me: “Do you see anything wrong with that?”
The rabbi: “Yes, of course, but that’s how it is.”
Me: “I have to go.”

I ended up at Bob’s synagogue after this debacle. I’ve already written about what happened there, so enough said about that.

After all these experiences, I’ve learned that many people join religious institutions for the social aspects of community rather than the spiritual ones. There’s nothing wrong with that, of course, if it works for people. But it can’t work for me, because a) socializing exhausts me and b) when other people socialize, it’s so distracting that I can’t focus on why I’m there at all.

So I’ve learned to bring religion home—into my house and into my own being. I haven’t given up on Judaism or on my fellow Jews. I just encounter G-d in my own way, and I practice Judaism in a way that works for my Aspie body, mind, and soul.

I have to start with my neurology, with the way that G-d made me, and live my life from there. It’s the only way I’ll ever find a sense of belonging.

© 2009 by Rachel Cohen-Rottenberg

Well, I’m amazed, but I made it through our Passover seders in one piece, and I’m feeling pretty good.

On Wednesday, we were able to get all the cleaning and other preparation done with time to spare, thanks in no small part to all you wonderful people who extended so much kindness and support. On Wednesday night, we had a mini-seder for our immediate family–my husband, my daughter, and myself. We had the ritual foods, said the blessings, and then spent a lot of time singing songs from the haggadah.

We decided on a mini-seder because, a few years back, we had two full seders at our house and decided never to do it again. Basically, the first one left us running on fumes for the second one. So this year, our homemade, doing-it-our-way first-night seder was perfect for us.

We had invited guests over for our second-night seder, so yesterday, we got the house prepared. I set the table, got out the haggadahs, put out the seder plates, and made the matzo ball soup. My daughter helped my husband chop up apples and walnuts for the charoset (a mixture of apples, walnuts, and grape juice that my daughter could eat 24/7), and my husband prepared the chicken.

At one point in the afternoon, I began feeling very apprehensive and irritable, and it occurred to me that I needed to clarify my role in the seder. So I told my husband that since singing is very soothing to me, I would like to lead all the singing, while he could take charge of navigating us through all the ritual.

It took some time for me to explain to him what I needed, and it took some time for him to say that he didn’t want me to blame him if I had a bad time. Yes, I’m sorry to say, we’ve been there before with the blame thing. We’d go to a social gathering, and I’d feel excluded and expect him to make everything all right. When he didn’t, I’d get upset with him. This time, I reassured him that however the evening went, I wouldn’t blame him and that I wasn’t interested in tapping into that pattern again. Been there, done that, enough already. He felt reassured.

I then made one of the best decisions of my life, ever. I took the two weighted blankets we have, brought them up to my loft, put them on the futon, and laid down under 30 pounds of beans and fleece. Then next thing I knew, it was an hour later, and my daughter was knocking on the door, telling me that it was 6:30 pm and that everyone had arrived. I had actually napped! Usually, the best I can do before a social event is to lie down, concentrate on my breathing, and try really hard not to get a migraine or a stomachache. The nap put me in such a calm and grounded mood that I felt ready to meet the world.

There were seven people in attendance: my husband, my daughter, my stepson Elijah, our friends Julia and Tristan, my daughter’s friend Claire, and myself. Because Julia used to be the music teacher at my daughter’s school, she knew my daughter and her friend, and since my stepson teaches at the school, she knew him as well. So everyone there was connected in some way to everyone else. That made for a very good feeling.

There was quite a bit of ritual before dinner, and everyone seemed very engaged. Sometimes at seders, people show up out of obligation, or take on the role of tourist and just watch the proceedings. It can be very tiring to host a seder under those circumstances. Luckily, at this seder, everyone was there by choice and ready to jump in. I took the lead on the singing, and I had a great time with it. Julia is an artist by profession, with a beautiful singing voice, and when she didn’t know a song, she picked up the melody quickly and added some gorgeous harmonies. The dinnertime conversation was very friendly, and then we finished with some really fun seder songs.

I had thought that I’d need to take some breaks during the evening to fend off sensory overload. In fact, I’d planned on it. I had everything set up so that I could go and snuggle under my weighted blanket and calm myself down when I needed to. As it turned out, I didn’t need to take a sensory break. Instead, I found that the sensory protections were built into the evening.

First of all, I decided to wear my weighted OT Vest. I felt a bit self-conscious about wearing a 4-pound vest, but it was a damned sight better than getting a migraine, so I went for it.

Second, the social gathering was held together by a traditional structure laid out in a book. I had forgotten how much any kind of ritual structure wards off sensory overload for me. It always makes me feel calm because I know where I’m going. For Passover, it’s the same routine, every year, and for an Aspie, that is a Very Good Thing.

Third, I had a job to do, leading the singing, so that gave me a significant focus. There aren’t just a few songs scattered throughout the evening. There is at least one song on nearly every page. That held my attention and kept it from getting too diffuse.

Finally, I realized that I could do a lot of work with my hands, which is also very grounding for me. There were a lot of plates to bring back to the kitchen after the first part of the ritual, so as to make room for dinner. Plus, because dinner came in several courses, there were different kinds of food to bring back and forth. I took on the role of making sure that everyone had what they needed, and then I sat down to have dinner, too. Being able to get up and walk around was a good sensory break.

As for the “otherness” factor, it was definitely there. I was aware that I wasn’t keeping up with what people were saying, and that over dinner, with more than one conversation going, it was hard for me to hear all the words. I felt so comfortable with being an oddball, though, that I stopped things every now and then with “What did you say?” or “I don’t understand” or something equally honest about how clueless I felt. No one seemed to give it a second thought, probably because I wasn’t trying extra hard to be “normal.” I was just feeling comfortable being the weird Aspie at the end of the table.

After lots of very fun and raucous singing, we finished a little after 11 pm. Instead of being wired and exhausted and up till the wee morning hours, as I am after most other social gatherings, I actually fell asleep by midnight.

I couldn’t have asked for a better time.

© 2009 by Rachel Cohen-Rottenberg

I started to hit a wall today while doing the Passover preparations.

My husband and I sat down on Sunday and made a list of everything we needed to do. (I know, a list! Aren’t you surprised?) We wrote down what I could do, what he could do, and what we could do together. It seemed like a pretty realistic list, and things have been getting done.

Today, I began to have trouble seeing how everything could possibly get done by tomorrow night. My husband’s basic approach is that we should do everything we can while enjoying the process. Whatever gets done is fine. It’s a good approach, except that I’m an Aspie, and I started perseverating on how I could possibly sweep and mop the floors and get all the Passover plates switched with the regular plates before tomorrow night. I started to get teary and agitated. All of my husband’s reassurances fell by the wayside. I felt like I was moving toward a meltdown. I haven’t had one since my diagnosis, and I really didn’t want to have one today.

So I decided to go to my volunteer job for a couple of hours, just to get out of the house, get some perspective, and have something of a routine in the midst of all the doings. I was glad I did. I got to work on some jewelry for two hours, which is like a zen meditation in a corner of the store. I wasn’t feeling great, but I got to focus on something other than the object of my worries, and that was good.

Afterward, I stayed around the store for a little while and began to realize how “other” I felt. I feel “other” pretty much all of the time. The AS diagnosis has only confirmed that I haven’t been hallucinating all these years. And then I realized why getting ready for Passover has been feeling so impossible.

Of course I can sweep and mop the floors. Of course I can switch the plates. It’s not about that. It was never about that.

It’s about having people to my house and feeling my otherness. It’s about knowing that I can’t possibly keep up with the conversation. It’s about knowing that I’m going to get overloaded. It’s about knowing that I can’t just show up in a group of people and have it be easy. For all the years that I’ve been having Passover seders, for all the years that I’ve been having gatherings of any kind, the feeling is always the same. The moment people arrive, my heart drops to the floor, because I feel so completely and ridiculously insufficient. The minute the doorbell rings, I’m about to fall behind the pack, and I feel it. I’ve always felt it.

It’s hard to think about being “other,” so I worry about the floors and the plates instead, as though they are amulets that will assure me a sense of belonging, a sense of being understood, a sense of being one of many.

My meltdowns stem, in part, from this feeling of otherness and from my fruitless attempts to erase it by working harder and harder, hoping that this time, if I work hard and get it “right,” everything will be okay and I won’t feel so alone. Of course, I work so hard and ignore my needs so completely that I get a migraine, or have a meltdown, or both.

Why are migraines and meltdowns preferable to feeling alone? Because feeling alone makes me want to cry. And why are stomping around and getting angry and having a meltdown preferable to crying? It’s the adrenalin rush. When I have a meltdown, I’m on a roll. I’m the most intelligent, the most insightful, and the most unfairly treated human being on the face of the earth, and I’ve got the adrenalin rush to prove it.

When I’m crying, none of that happens. I have to admit powerlessness and sadness and all that stuff. Who needs it? That’s much harder.

Every year at Passover, Jewish people don’t just tell the story of the exodus from Egypt. We relive it. The point is to liberate ourselves from the narrow places that constrict and enslave us. I feel like I’m in that narrow place of having done the same thing over and over, year after year, working harder and harder, trying desperately to be “normal,” all to no avail. Sometimes, it feels so easy to be this weird person who enjoys solitude, and it all feels okay. But there’s the flip side, where I stand apart and my solitude is transformed into loneliness, even in the midst of people who love me.

The only way out is to embrace the otherness, to fully accept it and to feel everything that comes with it. I hope I can start to do that.

It’s an incredible blessing to be able to write about all these feelings and know that at least one other person out there will understand. One other person is infinitely more than none. It makes the otherness all right, because we share it. Perhaps that’s the way out, to know that we are other, to know that we are alone, and to know that we are together in that experience.

May everyone be renewed in this season of renewal, whatever path you walk.

© 2009 by Rachel Cohen-Rottenberg

With Passover starting on Wednesday night, I’m beginning to feel stressed. I still have a fair amount of preparation to do, but mainly, I’m feeling apprehensive about having guests. It’s the first time we’ve hosted anything at our house since my diagnosis. Nearly everyone coming to our seder knows that I’m an Aspie, so I feel comfortable with the idea of taking breaks when I need them. But I’m also feeling sad, remembering past years, when I worked so hard to fit in and to try to make everything “perfect.” It’s good to be relieved of that burden, but there’s a sadness that comes with letting it go as well.

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