Archive for Marriage

The Fine Art of Perseveration

March 22, 2009 Rachel Making Art, Marriage, Perseveration, Visual/Spatial Skills

The word perseveration has been coming into my mind with great frequency these days. It’s a cool word, you know? The verb form, perseverate, sounds like some weird techno-version of persevere, except that the -ate tacked onto the end makes it sound like something you do with a Cuisinart.

Anyway, I became curious as to what the authorities think perseveration means, so I went to the Merriam-Webster Online Dictionary and looked it up. Check out the definition and etymology:

Main Entry: per·sev·er·a·tion
Pronunciation: \pər-ˌse-və-ˈrā-shən\
Function: noun
Etymology: Latin perseveration-, perseveratio, from perseverare
Date: 1910
Definition: continuation of something (as repetition of a word) usually to an exceptional degree or beyond a desired point
— per·sev·er·ate \-ˈse-və-ˌrāt\ intransitive verb
— per·sev·er·a·tive \-ˌrā-tiv\ adjective

I have read that people on the spectrum perseverate about things large and small, and I’m no exception. I’ve had therapists, boyfriends, schoolmates, and family all tell me that I think about things for far too long and that I need to give things a rest. Of course, it’s never seemed like too long to me. Having all those thoughts constantly spinning in my brain, like a hamster on a wheel, has always felt perfectly normal to me. But then again, in the words of a Paul Simon song, “When something’s wrong, I’m always the first to admit it, and always the last to know.”

Not that anything is wrong with perseverating, unless you’re driving the other people in your house nuts with it. That’s where continuing a process “beyond a desired point” gets people tense. Lately, I’ve been watching myself perseverate, and for me, it’s been great fun. My husband doesn’t much mind either, except when I say, “I’ll be right there to watch the movie,” and an hour later, I’m still working on whatever-it-is that really, truly, I-mean-it was only supposed to take a few more minutes to finish.

My main warning sign that I’m about to go on a roll comes very early in the game. It usually starts with a “nudge-nudge, wink-wink” of denial, as in, “I’ve got this great idea for a new mobile, and I’m just going to wind the beads around one spoon before coming downstairs and finishing breakfast.” Yeah, right. Several hours later, I’m still working on the mobile and haven’t had anything to eat or drink at all.

Now, I know better than to start when I have a commitment outside my house in the early afternoon. I’ve set up my schedule to start my volunteer work at 1 pm, which means that I need to eat, drink water, work out, drink more water, shower, dress, and generally take care of myself before going out into the world. If it’s a week that my daughter is with me, I can stave off the perseveration even without an outside commitment, because her schedule gives me a schedule, and thus a break from my own extremely focused process.

But if my daughter is at her father’s house, my husband is visiting his dad, and I’m not working outside my house, I’ve got the green light to go. I get so absolutely lost in whatever I’m doing that I couldn’t tell you whether five minutes have passed or five hours.

Lately, when I have time to myself, I’ve been perseverating with my art. I love trying things out, and seeing how they look, and taking things apart when they don’t work, and trying something new, and seeing how to do a task that’s been stumping me. I love the feeling of the beads in my hands. I love wrapping the wires to get them to coil just right. I even love the nicks and the callouses I’m getting on my fingers. I love the whole blessed thing.

When I’m alone and can let the art take me where it wants me to go, I find that perseverating doesn’t happen “beyond a desired point,” because there is no desired point. At those times, it’s the “continuation of something…to an exceptional degree.” It’s better than persevering. It’s persevering by letting go and letting the process take me where it will. It’s persevering with inspiration.

However, nothing exists in isolation from its opposite. So while perseverating on my art feels wonderful, having to stop for any reason is very, very difficult. Sometimes, it feels painful. Perseverating is physical, like a powerful force that doesn’t want to stop. Something has to interpose itself between me and the object of my perseveration. Sometimes, an external commitment, like a doctor’s appointment, will do it. At other times, it’s my internal moral compass telling me that I can’t keep my family waiting endlessly for dinner or for a movie.

There are forces equal to perseveration, and being an adult, I can choose to stop and shift my attention. I love spending time with my husband and daughter. I know that nothing lasts forever, that my daughter will soon be grown, that my husband and I are getting older, and that I’d better pay attention now, because one day, everything will be changed. Growing older provides perspective, and I am glad of that.

It’s the transition from one activity to another that is difficult for me. I even have difficulty saying good-bye to the day and going to sleep, no matter how tired I am. It’s my Aspie wiring. I can talk my way around it and adjust my life around it, but I can’t ever change it.

And why would I want to? As difficult as it is, it makes me who I am. And I’m enjoying who I am, more and more, with every passing day.

© 2009 by Rachel Cohen-Rottenberg

8 comments

Reflections on Being an Aspie Parent

March 16, 2009 Rachel Childhood, Communication, Marriage, Meltdowns, Parenting, Women and AS

000_0298I sometimes hear my fellow Aspies say that they are afraid to have children. Some fear being cold, remote, and unfeeling parents. Others are comfortable with the idea of raising a child with an ASD, but feel apprehensive about parenting a neuro-typical child.

Certainly, there are challenges related to having Asperger’s and raising children. I won’t deny it. But we Aspies bring incredible strengths to the process as well. No Aspie should disqualify himself or herself from parenthood simply on the basis of an Asperger’s diagnosis. My daughter Ashlynne is neuro-typical, and I wouldn’t trade being her mom for anything in this world. The past 16 years have been the best years of my life.

Our Aspie Challenges

1. Confronting family history

To me, dealing with one’s childhood issues is a must for any parent. Having a troubled childhood is tough on anyone, and it can have an even greater impact on an Aspie. Having an Aspie parent who is difficult can also put an Aspie child off the idea of parenthood altogether.

My father was an undiagnosed Aspie. He could be very fun or very distant, very supportive or very condeming, very loving or very frightening, depending on the day and time. I identified strongly with my father’s sensory defensiveness and confusion about how to interact with other people, but I swore that I would do everything differently when I became a parent. It was many years before I realized that my father’s Aspieness was separate from the things he had done. We were both Aspies, but we had choices about how we treated our children. He made his choices. I made very different ones.

While no one ever works out every life issue completely, I’m glad that I recognized and began working with mine before becoming a parent.

2. Meltdowns

Most Aspies have them. They’re not fun for anyone. How to handle them when you’re parenting is a big challenge.

I didn’t know I was an Aspie when Ashlynne was small, so I felt very, very guilty about my meltdowns. I thought that they were reflective of some terrible character flaw and that I needed to work harder in therapy. Now that I’m diagnosed, I feel much less likely to have a meltdown. I know what causes one, I can read the warning signs, and I know how to speak my feelings before they consume me.

Looking back, I can see that I mitigated the effects of the meltdowns by a) making sure Ashlynne wasn’t present during them, or b) taking special care to tell her that the meltdown was not her fault.

Has it worked? Certainly. One night, when I was in serious self-abasement mode, my husband said, “Oh, for goodness sake. Look at your child. How is she doing? Good self-esteem? Basically happy? Friends she enjoys? Yes? Can we start dinner?”

Every child has challenges in life, whether that child has an Aspie parent or not. I have watched apparently neuro-typical parents do far, far worse things than have a meltdown. Ask me sometime and I’ll try to describe what they did without resorting to every curse word I know.

3. Inability to do fun kid things in crowds

When Ashlynne was small, I braved the wilds of Chuckee Cheese and insanely chaotic birthday parties. After awhile, though, I realized that I ended up with a migraine or a case of exhaustion. So, we worked it out for her neuro-typical dad and step-dad to do the crowd stuff while I did the more quiet stuff. For a number of years, I have not entered any of the following places: a mall, an ice skating rink, a roller-skating rink, a party, a downtown New Year’s celebration, the 4th of July fireworks, or a first-run movie.

Before I knew about AS, I felt awful about not being able to do activities in crowds. I kicked myself over and over because I was not the fun parent. I thought I was lazy and let my husband do all the work. Now that I’m diagnosed, I have been liberated from these kinds of distortions. These days, I just say to my daughter, “I’m afraid I can’t take you to the mall, honey. You know those places aren’t for me.”

Her response is usually, “Yeah, mom. It’s not like I haven’t noticed.”

If I were married to a crowd-aversive Aspie and had the same neuro-typical daughter, I would enlist the help of other parents. Some parents love driving and being in crowds. Really! It’s amazing. There are other things I can do, and working out an exchange of skills to keep a balance with other parents would not be difficult.

4. Hyperfocus and special interests

Most Aspies are capable of high levels of focus when it comes to our special interests and projects. I am no exception. When Ashlynne was born, I had to make the shift from having lots of time to do whatever I wanted to being on call 24 hours a day. Most parents find this transition a daunting one. I certainly did. I can very clearly remember organizing boxes of memorabilia, and then reorganizing them, and then reorganizing them some more, just to get back a sense of control.

The good news is that once you get into the swing of things, you can start including the child in the things you enjoy. I remember thinking that my life would really take off when I had Ashlynne, because I could include her in my activities. And that’s exactly what I did. I’ve always loved to go for long walks, so I did, with Ashlynne in her stroller. I love picture books, and lo and behold, so did she! As she got older, I could homeschool her and learn new things every day. I could share music and art with her. I could teach her to read and share my joy in it. I could shop with her at thrift stores. I could help her carry the pounds of books she took out of the library each week. There was no end to the interesting things we could do together.

Our Aspie Strengths

1. Ability to verbalize

Over the past 30 years or so, the phrase “use your words” has become a staple of parenting. If your child is screaming, you say, “Use your words and tell me what’s wrong.” If your child is hitting someone, you say, “Don’t hit. Use your words instead.” If your child is pouting, you say, “I’ll be happy to listen to you if you use your words.”

And what do we Aspies use in our interactions with other people? Words! Lots of words! We don’t read nonverbals very well, and we don’t use them to regulate social interactions. Words are our life rafts in a sea of social confusion.

Personally, I consider words holy. So, I have always used them to express what I’m feeling or thinking, and I have always asked Ashlynne to verbalize her emotions and thoughts in return. Her dad and step-dad are also verbal people, so she’s had plenty of good role models. As a result, she has always been able to articulate her thoughts and feelings.

2. Ability to create structure

Not all Aspies are good at structuring things, but those of us who have the structuring gene provide a great service to our children (so long as we don’t overdo it). Kids need structure, and they feel very secure when they have it. Our Aspie need for routine can play a very positive role in the life of a child, so long as we take everyone’s needs and interests into consideration. It’s an opportunity to work creatively with your partner and child so that everyone can get what they need and keep a modicum of sanity. It’s not always easy, but it’s very satisfying when it works.

My ability to create structure allowed me to homeschool for eight years. I loved it. I created a curriculum every year, made lists of books under each subject header, and kept a daily homeschooling journal for the school district. One of the reasons I enjoyed homeschooling so much was that I got to spend time with my daughter in a structured way while being creative with the learning process. 

3. Honesty and directness

Our Aspie capacity for being honest and straightforward can work wonders for a child. I grew up in a family with a mom who was, to put it mildly, a very unreliable narrator. It was intensely confusing for me to try and figure out how things really stood. I still catch myself stating something that my mother said as fact, and then having to remind myself that the story may not be true.

Fortunately, children of Aspie parents do not tend to have this problem. If anything, they may have the opposite problem: thoughts and feelings stated so bluntly as to be hurtful. It is very important to frame honest feelings so that a child can receive them in the most constructive way. I am very conscious about how I say what I need to say to my daughter at any given time. Sometimes, bluntness is the best policy, especially with a teenager. Sometimes, it’s the worst choice. When it’s your child, you know what works and what won’t.

4. A passion for justice

I’ve always had a heart for justice. It’s a wonderful and painful gift. If you insist on fairness, having a child is a crash course in how completely maddening the world is. Kids regularly come up against the insensitivity of adults who think that children accrue human rights over a period of years, rather than having been born with them.

Enter the Aspie parent, who feels compelled to educate such people. Does it work? Usually not. I have written so many eloquent, well-considered, solution-oriented letters to people who weren’t capable of understanding a word I said. I wish I’d saved those letters. I’d compile them into a book called “If I Have to Explain Why, You Wouldn’t Understand” (with a shout-out to Harley-Davidson, who made the T-shirt with that slogan on it).

So, maybe you can’t change other people, but you can give your child a code of ethics that is sorely lacking in many kids. When we were homeschooling, Ashlynne and I would do lots of role playing about making ethical decisions—about not following the crowd to do wrong, about being inclusive, and honest, and keeping your word, and all the things that seem to be going out of style. She loved coming up with different ways to address ethical dilemmas, and the lessons have stayed with her.

5. Acceptance of non-conformity

If you’re an Aspie, you’ve always been in the minority. You’ve had to deal with being different, with being the odd one out, with being out-of-step much of the time. As painful as these experiences are, they’re very valuable for a parent. I entered parenting with an acceptance of a fairly wide range of behavior and outlook. As a result, lots of kids congregated at our house because they felt safe there.

In conclusion
Our children don’t expect us to be perfect. They’re looking for integrity, and they want us to make our best effort on their behalf. They’re nowhere near as hard on us as we are on ourselves.

So if you’re an Aspie, and you’re considering parenthood, don’t count yourself out. It’s a great adventure.

© 2009 by Rachel Cohen-Rottenberg

31 comments

Coming Out as an Aspie

March 11, 2009 Rachel Communication, Friendship, Marriage

Ever since my diagnosis in November, I have been struggling with the question of telling people that I have Asperger’s. In the beginning, my husband told his father and his brother, and they were very supportive. Soon thereafter, I told my daughter. Her main response was surprise. She had met a boy her age with Asperger’s, and his presentation was very different from mine. I took the conversation as an opportunity to talk about how male and female Aspies present differently, and to share the strategies I’ve used to make my way through the world as an adult. We had a great talk.

At the outset, I also emailed two of my oldest friends, one who lives in Minnesota and one who lives in Utah. They were completely supportive, and still are.

Having no problem with extremes (when they don’t involve visual, auditory, tactile, or emotional stimuli), I then made the transition from telling my closest friends and family to telling anyone with a computer and an Internet connection. I didn’t start my blog as a coming-out project, but once I decided to blog under my own name, it soon became one.

Oddly enough, I haven’t felt anxious about tossing my anonymity to the wind. It feels very liberating to stop hiding who I am, and writing is my natural medium. When I write, there are no visuals to distract me, no eye contact or processing delays, and no possibility of visual or auditory overload. I have time to clarify my thoughts before communicating them. It’s ideal. While other people decry the fact that the Internet is taking the place of face-to-face communication, I am very grateful for a medium that allows me to make friends and interact with people without becoming overwhelmed.

Of course, as an Aspie, the middle ground is always the most difficult for me to locate. Telling all the people who reside somewhere on the continuum between close family and total stranger has been a challenge.

I decided to begin by sending an email to my friends Kim and Dave. They are wonderful people who have invited my husband and me over for dinner many, many times. We have always put them off and I began to feel that I should tell them why. I really love them and want to spend time with them, but the sensory overload of more than one person at a time is so difficult for me that I haven’t been able to do it.

The email I sent explained about the Asperger’s and my associated sensory processing issues. I also included a link to my blog. When I didn’t hear from them immediately, all my fears started surfacing. Were they upset because I’d used email rather than meeting in person? (I’ve had that experience before.) Were they overwhelmed by all my words? Were they writing me off as broken or weird? I should know by now that most people need time to read and digest new information, but I often forget that essential fact.

After about a week, I got an email from Dave. He began by expressing his shock at learning about my autism, for which I couldn’t blame him, because I was pretty shocked when I first discovered it, too. Then he wrote the following:

“I sense this is really amazing for you, to be able to understand and make sense of so many parts of your life…It seems truly great that you’ve been able to learn, find support, and process accordingly, setting up the limits and structures that fit you…Reading through your blog entries, I’m struck by your amazing courage at facing this and exploring deeply. It seems like you’re creating a re-alignment of sorts for yourself. What a lot to process and assimilate…All the best as this major new development unfolds in your life. I look forward to finding the new ways for us to stay connected over time.”

After getting such a great response, I took the next step of sending email to a wider circle of friends. Almost everyone responded and all the responses were positive. Here are some examples:

From Jim: “You really are something else! How many people have I ever met who are diagnosed with anything and see it as a gift…I so enjoyed reading this and learning.”

From Liz: “What an amazing revelation! And to have made this discovery after all these years—how remarkable how you say the pieces now all fit together. Thank you for sharing this with your friends. I’m looking forward to reading your blog and talking to you more about this next time we get together.”

From Sue: “I feel so honored to be included in your discoveries. I have been reading little bits of your blog daily and love it…[I] wanted to let you know I received your gift and send you hugs.”

From Irene: “Little by little, over many days, I made my way through this journey of your life’s discoveries and am so happy that you have been able to pull, as you put it, the missing pieces together. A good many diagnosis causes depression and despair, this diagnosis has been a blessing.”

I’m discovering that my friends really love me. Wow.

I’m also finding that I still resist getting together with them. For instance, I’ve been trying to find a time to meet up with my friend Ramon. He knows about my Asperger’s and sensory processing issues, and he has been very kind and supportive. With winter and flu season in full swing, it’s been difficult to get together. As the snow thaws, though, I want to make plans with him, but I find myself very anxious about seeing him in person. Though it’s been many years since we’ve gotten together, he’s the last person in the world I should worry about seeing. He’s one of the kindest and most genuine people I’ve ever met.

So what’s the problem? Being seen in person, now that my secret is out, feels very difficult. Being held in another’s gaze is so hard for me. I’ve spent most of my life trying to hide under a mask of competence, intelligence, and limitless energy. Now that the mask is off, I’m afraid of being seen. I lose sight of the fact that the only person in the world who feels ashamed of me is…well, me.

What am I ashamed of? I’m not sure. It’s more a habit than anything else—a habit begun in childhood, when everyone had such high expectations of me and I was afraid to admit that I couldn’t do the simplest things. I’ve kept the habit going in adulthood, as I see so many of my former classmates do great and important work in the world while I struggle to get through each day.

After all these years, I still catch myself feeling that I’m supposed to be someone else. It’s a hard habit to break. My family and friends, however, seem quite happy with who I really am. They seem to feel that I am just fine.

I should get into the habit of taking their word for it.

© 2009 by Rachel Cohen-Rottenberg

18 comments

AS and Loneliness

March 7, 2009 Rachel Anxiety, Childhood, Loneliness, Marriage

Every now and then, my husband goes down to New York City for a few days to visit his father. I used to go with him, but being in the city became too disorienting and exhausting. I crave the familiarity of my home and my daily tasks, so I’ve stopped going on these trips. My husband tends to travel when my daughter is with her father for the week, so I am on my own for a few days.

Whenever my husband goes away, I get very anxious. For years, I used to melt into tears every time, like I’d never see him again. I’ve always had a lot of separation anxiety, throughout my life. Any kind of leave taking brings it up. When I was about 12 years old, I went on a weekend retreat and was homesick the entire time—which was especially odd, because home was not a great place. About twenty years ago, I moved across the hall at work from one office to another, and I got all choked up when I was taking my pictures off the wall. The fact that they would soon be on another wall about 50 feet away didn’t seem to matter. Any kind of change like that makes me sad.

Although I no longer get teary when my husband goes away for these visits, my ability to self-modulate pretty much goes out the window. At first, I think about how nice it will be to have some time alone after work. So I go to work and have my afternoon, and then I come home to an empty house. I’m so used to my husband being there that a chill comes over me when he’s not. The minute I close the door behind me, it’s as though I’m the only human being left in the world. It’s such a lonely feeling. I barely know what to do. I’ll eat something, check my email, maybe watch TV, but I’m on edge. I get more and more tense and wired, and I can’t fall asleep till the early morning hours.

The problem seems to be that I don’t carry anyone around with me in my mind. I don’t think that tomorrow, I’ll see a friend and tell her about the knitting I’m doing. I don’t look forward to what I’ll do, who I’ll see, what I’ll say, or what kind of experiences I might have. In my mind’s eye, I don’t see myself “spontaneously sharing” anything with anyone. I feel very cut off from the world.

When my husband is here, I feel so normal. He is the first person I’ve ever felt truly at home with. It’s as though I’d been in exile all my life, and when I met him, I finally came home—to everything. So when he goes, I feel like I’m in exile again.

I don’t like how vulnerable I feel. I don’t like needing anyone this much, and I don’t like knowing that someday, one of us will be gone and the other will be left alone. I feel so connected to him in a world that feels so strange to me.

I realize that loss comes to everyone. I wonder, though, whether we Aspies feel the possibility of loss more intensely than other people because a) we don’t like going out into the world to socialize and b) we feel like such oddballs most of the time anyway.

For me, being left alone for a short time resonates with the possibility of being utterly alone, always. And then, when my husband comes home, I can’t possibly imagine life being any other way.

Do others feel as I do?

© 2009 by Rachel Cohen-Rottenberg

15 comments

When Things Go Wrong

February 24, 2009 Rachel Gravitational Insecurity, Marriage, Sensory Processing Issues, Theory of Mind (ToM)

Something difficult happened in the midst of my volunteer job yesterday. I got very emotional about it at the time, but I’m okay about it now. After looking at the situation and talking with my husband this morning, I’ve figured out a lot about how Asperger’s affects me and why I get so emotional.

Some background: Last Thursday, while volunteering at the store, I worked on organizing the shelves that hold newly arrived books. We have many other bookshelves that are already categorized and labelled, but the “New Arrivals” shelves weren’t. There were perhaps 200 books, and most were simply shelved wherever there was room. I offered to organize the books, and the manager in charge said, “Go ahead. Bend those shelves to your will.” So I did. I figured out what categories the books should go into, and I labelled the shelves accordingly.

It wasn’t an easy task. First of all, there was the necessity of getting books from the higher shelves and the lower shelves. With my gravitational insecurity, it was very difficult for me to go up and down like that, but I managed. Then, the book area is next to the children’s area. Around 3:00 pm, lots of kids came in, and they were rather loud and frenetic. Finally, I stayed an hour later than usual, breaking my own rule about avoiding sensory overload by limiting my shifts to 2 hours each.

I knew that I should have stopped at 2 hours, but the job wasn’t done yet, you know? It is next to impossible for me to stop doing something before it’s done, especially when I’m organizing something. If I leave the task when it’s two-thirds done, it is not organized. There is still chaos afoot. At least, that’s how my Aspie brain sees it.

So, I got home, and I was a bit of a basket case. I can’t remember exactly what I was feeling, but when my husband got home, I said, “I need to watch a TV show, and you need to hold me really, really tight.” In the course of the evening, my husband gently reminded me that when I overstay my welcome anywhere in the world, the result is usually not good.

Anyway, I recovered, and I had a wonderful feeling about the job I’d done. My husband went to the store on Friday, and when he came home, he gave me all sorts of compliments about the bookshelves. When I got to work yesterday, the manager also gave me good feedback. She told me I could do some more reorganizing in the book section if I wanted to.

So I went over to the book section and what did I see? The labels that I had put up were all gone and the books were all mixed up.

I kid you not.

I asked the manager what had happened. She said she wasn’t sure. There is a volunteer who takes care of new books on Sunday (when the store is closed), and people pretty much communicate with her via notes. So, it was most likely the volunteer who had undone my work. I don’t know why she undid everything. Perhaps she felt that I’d intruded on her territory. Apparently, she’s been doing the books for a long time. Or maybe my logic didn’t work for her. (I know it’s hard to believe, but stay with me here.)

When I saw all my work undone, I got really teary. I knew I was going to start crying, so I went into the bathroom and sobbed for a little while. Then, I went back into the store, did some other tasks, helped a customer find something she needed (which was a welcome break from my personal drama), and went home.

This morning, I was feeling so sad that I didn’t want to go back to the store anymore. I knew I would go back, but the feeling was there. My husband and I discussed it, and he said, “I see a pattern here. You find yourself in a situation that really works. People love what you bring to the place, and you love being there. Everything is wonderful until, one day, something goes wrong. And when it goes wrong, you leave.”

He was absolutely right.

So then I did what I usually do when he is absolutely right. I revert to my old habit of searching my psyche for what deep, dark reason I must have for perpetuating this kind of pattern. Was this a childhood issue resurfacing? Am I just immature? I was really stuck. And then, my dear husband said, “It’s like what you were saying on your blog yesterday. You stand at the border of a group. You figure out the rules. You enter the group when you’re reasonably sure you’ve got the rules all figured out. And then, at some point, you inevitably realize that you don’t have the rules all figured out. When that happens, you feel completely alienated, and you leave.”

He’s good, isn’t he? And he says all these things in such a non-judgmental voice, too.

So what have I learned about my Asperger’s from this little scenario?

1. I expect people to think like I do. When I rearranged the books into a logical order, I assumed that everyone would be happy. I didn’t allow for the fact that I might be stepping on someone’s toes, or that another person might find my sense of order confining, or that anyone would undo my work without checking to see what was going on.

2. Because I don’t intuitively understand the rules, I have to do a lot of thinking about them. When I’m faced with the fact that I missed something, I feel so scared, alienated, and upset that I want to cry. I suddenly remember that I don’t perceive things like other people do, which leads me to the conclusion that I’m not important and that I don’t belong. I feel like a little, lost kid watching all the grown-ups go about their lives while I’m crying over something that everyone else would consider trivial.

3. If I keep working when I know I’m getting overloaded, or if I keep working in defiance of my gravitational insecurity, nature will see to it that something falls apart. Sometimes, that’s the only way I get the message.

Just about every time that I’ve gotten upset and left a place, it was because the rules changed in some sort of painful way. In some situations, there was actual harm done to me or to the people I love. When I wasn’t able to mend the harm, I couldn’t stay and pretend that nothing had happened. So I left. But in this case, no lasting harm was done, so there is no reason to leave.

You will be glad to know that I went back to work today. It was a little crowded. I got tired easily and felt very out of sync, but that’s okay. It happens. Tomorrow is another day.

© 2009 by Rachel Cohen-Rottenberg

12 comments

Empathic Sensitivity

February 10, 2009 Rachel Empathy, Marriage, Sensory Processing Issues

On Sunday, I spent the day researching and writing an article for our local monthly paper. I was writing about the Israeli-Palestinian conflict, so I spent several hours reading various articles and trying to put my ideas into a reasonable format.

By the end of the day, I was deep into a nightmare. I had read and written about the bloodshed in Gaza, the Holocaust, anti-Semitism, and the tragedy of the Israeli-Palestinian conflict. I saw everything from every angle. It just about paralyzed me. My whole nervous sytem was in an uproar. My mind kept saying, “Go work out, or go to a movie, or something, ” but I couldn’t figure out how to make the transition. How could I just go and work out when I’d been looking at endless war? I was literally sick to my stomach.

Finally, my husband said, “Let’s watch Sense and Sensibility on Masterpiece Classics tonight.” So we did, and it was just the right thing. It helped me calm down significantly. Nothing like watching 18th-century British aristocrats to take you well outside of your own life.

When I told the OT about this experience, she nearly started to cry. She said, “This is part of your sensitivity to the world. You can stand in everyone’s shoes. It’s a gift, but you have to balance it by reading about something positive and uplifting, too.”

I have read pieces by other autistics about this gift, and it seems to be very much connected to our hyper-sensitivities in general.  I wonder if others of you have had this empathic experience and how it feels to you. I’ve been doing this type of thing all my life, but I’m only just beginning to understand what a powerful blow it is to my mind and body.

© 2009 by Rachel Cohen-Rottenberg

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Sensory Self-Defense

January 29, 2009 Rachel Marriage, Meltdowns, Occupational Therapy, Sensory Processing Issues

I learned something from my occupational therapist about sensory defensiveness that has proved very helpful.

Last week, before I went in for my appointment, my OT called to get some background information. At one point in the call, she asked me which senses get highly overloaded. I told her that I have a lot of trouble with visual and auditory stimuli, and that I also find light touch very difficult. For example, when my husband comes over to me while I’m writing and gently kisses me on the head, I feel like I want to execute a self-defense block and shout “Stop!” It’s the light touch combined with the fact that I also happen to be using another sense at the time that puts me over the top.

In describing the feelings of anger that rise inside me, I told my OT that I used to say to myself, “Girl, where is this anger coming from? You’ve got a lot of issues.” But now, I realize that it’s just my nervous system that can’t handle light touch or too much sensory input at once.

She very emphatically agreed, saying, “Yes, that’s right. It’s not psychological. It’s your nervous system defending itself.”

My nervous system defending itself.

Wow. That’s exactly right.

This morning, I had an experience in which, for the first time, I was able to watch this process and see the way it works. I was sitting down to breakfast and pouring water out of a Brita pitcher into a glass. I hadn’t realized that my husband had just filled the top of the pitcher with water, and that the water hadn’t gone through the filter yet. So, when I went to pour the water into the glass, all the unfiltered water in the top of the pitcher spilled all over the table.

I jumped backward, uttered an expletive, and got very upset. I found myself about to go upstairs and get angry at my husband, when I stopped and looked at what had happened. I’d been so startled by seeing the water spill unexpectedly, and by getting cold water on myself, that my nervous system was completely agitated. I thought, “Wow, I get it. This anger is just my nervous system defending itself.”

After cleaning up the spill, I walked upstairs and decided to talk with my husband about it. I said, “Honey, I think perhaps my nonverbal cue of leaving the top off the Brita pitcher when I first pour water in wasn’t direct enough. So, could you start leaving the top off the pitcher when the water hasn’t gone through the filter yet?  Or maybe leave the top on sideways, as a signal? I just spilled the water all over the table.” So we talked about it a bit and came up with some strategies, and that was very nice.

But I was still quite agitated. I was flapping my hands all over the place and lifting myself up and down on the balls of my feet. Before I left the room, I realized that I didn’t want my husband to think I was agitated because of him. So I said, “I want you to understand. I’m not angry at you at all. It may sound like it, but that’s because my nervous system is in overdrive. It’s not your fault. It’s just going to take a little while for me to wind down.” And then I went back to the kitchen and had breakfast.

What a change! In the past, a moment like that would have triggered an angry outburst. If it had happened when I was already overloaded and at my wit’s end, it might have turned into a meltdown.

So now I know that when I feel myself get angry over these small things, it’s no one’s fault. It’s just my nervous system defending itself.  I can just watch the feeling and listen to what it’s telling me. In this case, my nervous system was saying, “Hey! That was really unexpected, wet, cold, and messy. Please, clean up the spill, get me warm, and try to avoid this particular mishap again, because I really, really don’t like it.”

Imagine. If every Aspie in the world could verbalize that experience, and if other people could understand what it means. What a different experience of life that would be for everyone!

© 2009 by Rachel Cohen-Rottenberg

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Meltdowns

January 27, 2009 Rachel Marriage, Meltdowns, Sensory Processing Issues

Tonight, an Aspie friend wrote and asked me whether I have problems with meltdowns. It was a timely question, because yesterday, I had seen a meltdown coming and had managed to diffuse it. So I thought I’d share my experience.

Yesterday morning, I had an appointment with an occupational therapist for a sensory integration assessment. I had had some trouble locating an OT who works with adults, but I had finally found one. When she offered me her first available appointment, I grabbed it.

That was my first mistake. The OT’s office is an hour’s drive from home, and the appointment was in the morning. I would have to get up earlier than usual, and my morning routine would be completely interrupted. Somehow, all those changes to my routine seemed inconsequential. Ironically, I was so focused on wanting the assessment that I lost sight of how my nervous system might fit into the equation.

On the positive side, I was realistic enough to know that when I got home, I’d need a lot of time to rest and recharge. So in the days preceding the assessment, I discussed the situation with my husband. We both agreed that I’d be good for very little when I got back, and that he’d do the afternoon carpooling to pick up my daughter.

It was a good plan. It truly was. But like many plans, it didn’t quite work out.

The assessment lasted 2½ hours and went very well, but it was very tiring. During the hour-long drive home, I comforted myself with thoughts of how nice it would be to hibernate in my loft for a few hours and do something to soothe my overloaded nervous system. Sometimes, my plans are so vivid that I forget that they haven’t happened yet.

Anyway, I got home, and my husband was feeling really sick. He’d been feeling lousy for about a week, and it had all caught up with him. He’d gone to the doctor and needed me to bring a prescription for antibiotics to the pharmacy. He also said he wasn’t sure whether he could do the carpooling.

This kind of situation is meltdown territory for me.

I was completely overloaded, and I needed to recharge, but then life demanded something else of me—something else that I deeply wanted to be able to do.

So I just stood there, paralyzed.

And then the moment arrived, the moment at which I always go to war against myself, the moment that begins the meltdown. I’d never seen it so clearly before. The key to the meltdown is the moment that I become aware of the dissonance between what my heart wants me to do and what I am actually able to do. When that moment arrives, I feel like an utter failure.

As I looked at my husband feeling so sick, my first impulse was to pick up his prescription, make him tea, pick up my daughter, make him some food, tend to his needs, and let him get some rest. After all, those are the normal things that other people can do on half a night’s sleep while talking on their cell phones, right?

That was the impulse of my heart.

But then my nervous system started saying “Please. Please, don’t push it. Please, I need to rest. Really. I don’t want to set off any alarms. I’m just saying…”

So, recognizing that I was getting caught between two competing aims, I was able to verbalize something about my distress. I said, “I’m very overloaded and I don’t know how much more I can do.” I didn’t say it quite as calmly as it sounds now, but believe me, I was trying.

Because my husband is a very patient and solution-oriented person, he didn’t mind talking about it, and we worked it out. He rested, and then he felt a bit better. He drove to the bus stop, and I went to the pharmacy. When he left, he said that he would like to have his prescription when he got home, so that he could just take it and rest. I agreed.

Problem solved.

Almost.

I went to the pharmacy, gave the nice man at the counter the prescription, and found out that it would take an hour to get it filled. I nearly started to cry. I did not want to go back out in an hour. It was freezing cold and I was so tired. I wanted to climb into my hobbit hole and be left alone. But I also wanted to get my husband his prescription before he got home. After all, he was doing the driving. I was just walking to the pharmacy.

But I knew that I was spent. I couldn’t stay out for an hour, and I couldn’t go back out into the world one more time. So I called him. I’m not happy to say that in my pain, I left a somewhat pissed off message on his cell phone, as though he were the cause of the problem. It went something like this: “WHY are you not picking up your phone? Are you there? Well, anyway, I just found out that your prescription is going to take an HOUR to fill and I CANNOT go back to the pharmacy, so if you want to get your prescription, YOU’RE going to have to figure something else out, so CALL me when you get this. Okay. Bye.”

I spent the next ten minutes in a state of high anger (by myself) and then realized that I didn’t need to be angry at anyone. I was just overloaded. Then I started to cry, which was a vast improvement, let me tell you. When my husband called me back, I apologized, and he said he understood and that it wasn’t a big deal. My daughter drove to the pharmacy, and they got his prescription.

Problem solved. Really.

Except of course, that I still wish I could power through this and do what others find relatively easy. Intellectually, I realize that while my husband was sick yesterday, I am dealing with a disability every day. On a good day, the AS feels like a very interesting and pleasantly eccentric way of being. On a bad day, it feels like a very limiting disability.

My husband does not feel deprived because of the AS. He loves me, and I love him. We find lots of ways to work around my limits so that I can do what I do well. We both benefit from the process of strategizing, and he seems very happy with the outcome, even on a difficult day.

As for me, I’m working to accept myself as I am and to know that I have many other ways of loving.

This morning, we were both feeling sick, and we were having a quiet day at home. At one point, I went into the living room and said, “You know, I feel so sick today, but then I see you, and it doesn’t really matter. It makes me happy just to look at you and to know that you’re here.”

He smiled and said, “I know. I feel just the same way about you.”

© 2009 by Rachel Cohen-Rottenberg

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Creating a Sensory-Friendly Living Space

January 6, 2009 Rachel Marriage, Sensory Processing Issues

As I mentioned in my last post, ordering the things of space helps me to manage and reduce sensory disorientation and overload. Recently, I’ve found my love of organizing especially useful in creating a calm living environment.

In November, my family and I moved into our new house. Built in 1870, the house is actually somewhat old (by American standards), but we feel as though we’ve moved into a home built just for us. Our furniture fits perfectly into the available space. Nearly every room in the house gets plenty of good light, and each person in the family has a place to go when he or she needs time alone. It’s a wonderful, rambling house with hardwood floors and tin ceilings. Just right for us.

Fortunately, the house was completely empty when we moved in, so I haven’t needed to do a lot of heavy lifting to make the space work. Plus, our town has four second-hand stores—and I work at one of them—so I’ve been able to find a variety of things at very low prices.

In consultation with my husband, here’s what I’ve done to make the house a sensory-friendly place:

Color. I love bright, deep color, so one of the first things I did was to put up curtains in various colors: beige, red, blue, teal, and purple. For the kitchen windows, I simply used tension rods and hung up some of the colorful shawls I’d bought this past summer. I always buy second-hand rayon sarongs whenever I can find them. At different times in my life, they have served as wall hangings, tablecloths, curtains, and prayer shawls.

Patterns. I love to look at mandalas and find them very calming. I managed to find some curtains with mandala patterns and deep, rich, blue and teal backgrounds. My eyes are always following visuals, and it’s lovely to have something so bright and so calming at the same time.

Photographs. What to do with photographs? I have a huge number of pictures of my daughter at every stage of her life and a plethora of ancestor photos. My husband also has an abundance of photographs of his extended family.

For the most part, the pictures of our children are on the mantle in the living room and on the wall leading upstairs. It’s fun to walk up the stairs and to see the kids at different ages. It’s a bit like time traveling.

As for the ancestor photos, I could spend much of my day simply gazing blissfully at them (and then returning them to their box), but the question of how many to actually put on the walls is one I’m wrestling with.

In our last house, I had a whole wall of ancestor photos, and I loved it. It made me feel part of something larger than myself, and it eased a great deal of my Aspie loneliness. But, after awhile, the ancestors started overwhelming me with their presence. It felt too much like having a crowd of people in the living room. I ultimately (and mournfully) took down a large number of the photos.

Now, many of the ancestor photographs are sitting on the floor of my loft, ready to go on a wall or rest easily in the (very clearly labelled) box from which they came. My solution, at this point, is to scatter the ancestor photographs in different rooms in the house. So far, there are a few photos in the kitchen, which is a great place for them. My focus in the kitchen is on food, or on the colorful placemats on the table, or on the dishes that need to be done, so I can give the ancestors a passing glance without being drawn into their world. And when I need company, they are there.

Empty space. What beautiful words! I love empty space. I love being able to walk into a room and see most of the floor and wall space. I very much need a clear visual field. While living with a family doesn’t always make empty space possible, I’ve created as much space as I can in each room without driving my family nuts.

Symmetry. Another beautiful word! I try to make sure there is symmetry wherever I look. The photos need to be lined up properly. The furniture in each room needs to be in balance. Candle holders and pottery need to be arranged in easily recognizable patterns.

A room of my own. My loft is my personal, restorative space, and I’ve been able to create it with the right combination of empty space and beautiful objects to look at.

There is only one photograph in my loft, a photograph of my great-great-grandmother Rivka Mogulefsky Levine. I have a bond with this woman that I cannot explain. She died many years before I was born, and I recall no one telling a single story about her when I was a child. But when I first saw her picture, I fell in love with her. I find her presence very calming.

I also have a number of cool things hanging in my window: a string of multicolored cloth chickens with a bell at the end, wind chimes from Cape Cod, a sun catcher with dried flowers in it, an old beaded necklace, and a clay mask my daughter made some years ago at summer art camp. I have also set out some small pieces of pottery, along with my Djembe, and a vintage footstool and lamp. And then there is a futon, presently covered with one of my quilts and lots of comfortable pillows.

I love the saying, “If you’ve met one Aspie…You’ve met one Aspie.” The way I set up my living space may not work for everyone, but hopefully, I’ve passed on some useful ideas for creating a space that is also a sensory sanctuary.

© 2009 by Rachel Cohen-Rottenberg

4 comments

Getting Diagnosed at 50

December 29, 2008 Rachel Diagnosis, Marriage, Women and AS

I first remember identifying with the experience of autism many years ago, when Donna Williams published her book Nobody Nowhere. I read an interview with the author, and I was struck by a moment in which I identified with her response.

As I remember it, the interview took place outdoors in a park under the shade of a large tree. At one point, a crowd of children came into the park, laughing and talking all at once, and running in the direction of Ms. Williams and her interviewer. At that moment, Ms. Williams said something like, “I have to close down now.”

I wasn’t sure what she meant, but it sounded like something I would do. When confronted by too much noise and too many people, I always felt flooded and overwhelmed. In my mind, it felt as though many little doors would click shut in an effort to keep out the visual overload and auditory din. On the outside, I seemed fine, but on the inside, I was working very hard to hear the voice of my own thoughts.

Even the name of her book seemed to describe me; I felt like an exile everywhere. But I said to myself, “You’re being overdramatic. You have a boyfriend, you have a job, you have a college degree, and you get along with people reasonably well. You can’t be autistic.” Those were the days when I thought autistic people were simply locked into their own, strange worlds, unable to communicate or function in society. Donna Williams seemed an exception. I wasn’t in the least exceptional. There was no need for me to read her book.

Some years went by, and then I began to hear about Asperger’s Syndrome. What I learned sounded eerily familiar, but I focused on how well it described my father. I wasn’t ready to look at how well it described me.

More time elapsed. And then, finally, the dam broke. After a half-century of trying to be “normal” (and nearly convincing myself that I’d succeeded), I had a chance meeting with someone who told me, out of the blue, that he had Asperger’s Syndrome. We shared the same love of language, and in some inexplicable way, he seemed like kin. If this man could have Asperger’s Syndrome, I thought, then maybe it wasn’t such a stretch to think that I might have it, too.

So I went on a mission. I started reading voraciously, posting questions in online forums, taking all the online diagnostic tests, and going over all the DSM-IV markers. I researched Asperger’s Syndrome virtually non-stop for two weeks and went over every last piece of information with my incredibly patient husband. The more I read, the more I saw myself reflected in a very clear mirror.

Little by little, my life began to make sense. Asperger’s Syndrome explained so many things that had seemed so odd and mysterious. As hard as I’d tried, I’d never known how to navigate the social world. Make small talk? I could never figure out how—or why. I couldn’t stay in synch with a simple conversation. I’d lose track of what people were saying, and by the time I figured it out and came up with a response, the group would have moved on.

I’ve always felt frightened, overwhelmed, and disoriented in large crowds. Take my daughter to the mall? Forget it. Go contra dancing? Impossible. At every social event, I ended up in the same place: leaning against the wall and looking for someone else who seemed equally dazed. If there were a library in the building, all the better. I’d go there and hide. I mean read.

And then there was eye contact. Why did I have to look away to focus on my thoughts? Why was meeting the eyes of a stranger so powerful and so distracting?

What was the matter with me? I used to wonder. Was I broken?

After two weeks of research, I knew I wasn’t broken. I no longer felt like a jigsaw puzzle with lots of pieces missing. All of the pieces of my life started coming together to form a coherent, recognizable picture. So much of what I read about Asperger’s Syndrome could have been written just for me.

I had found my answers, but I needed verification. I made an appointment for an assessment with an AS specialist. The days before the appointment were filled with almost unbearable anxiety. Would he see past the social skills I had learned? Would he listen to what I told him about my inner experience? Would he believe me?

I needn’t have worried. After observing me, asking me a number of questions, and hearing my husband’s thoughts, the doctor diagnosed me with Asperger’s Syndrome and noted that I had significant sensory integration issues.

I could hardly believe it. For the first time in my life, I felt like I could breathe. When I got back in the car with my husband, I said, “You heard him. He did say I have Asperger’s, right? I didn’t misunderstand, did I?”

My husband just smiled and said, “Yes, that’s what he said. Shall we go out for dinner?”

I was ready to celebrate. I had a name; I was an Aspie. I had a box that finally fit; it was labelled Asperger’s Syndrome. I could cuddle up inside it and claim it as my own. I could begin to forgive myself for all my unrealized dreams, for all my so-called insufficiencies, for all my anxiety, for all my fear, for all my loneliness.

For a while, I was on top of the world. When I got my diagnosis in the mail, I framed it.

And then, the grief hit.

All my life, I had held onto the idea that with a little more perseverance and self-reflection, I’d be able to do anything. That idea had fueled all my hope and all my work. But now I had a neurological condition that was not going to be fixed. I had had this condition all my life. I might be able to work with it. I might be able to mine its strengths. I might learn to manage its weaknesses. But I would not be able to change it.

Most days, I don’t want to change it. I like being me, more than I ever have before. But there is great sadness and struggle in letting go of an idea that has always guided me. Saying goodbye to the old idea of progress is like saying goodbye to a friend who had promised never to leave my side.

But I have to say goodbye in order to begin again.

© 2008 by Rachel Cohen-Rottenberg

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