Archive for December 30, 2009

Getting Off the Family Plane and Wafting Gently Back to Earth

December 30, 2009 Rachel Belonging, Childhood, Communication

After reading the kind and strengthening responses to my last post, and discussing the matter thoroughly with my very wonderful husband, I made the wise decision to get off the family airplane. Although I detest heights, I summoned up the courage to pry open the emergency exit, jump into the air, pull the ripcord on my multicolored parachute, and drift slowly back to Earth.

I also sent the following email to my cousin Ralph, just to let her know that I had landed safely:

Hi Ralph,

I see that the family lie has reached your door. Mazel tov. Enjoy.

Rachel

The view from the plane was spectacular, but I am very glad to have my feet back on solid ground.

© 2009 by Rachel Cohen-Rottenberg

9 comments

Take-A-Chance Airlines: Fly with Us! It’s a Family Business!

December 28, 2009 Rachel Anxiety, Belonging, Childhood

My fellow autistic wonder-folk, I wish to share with you the history of the family business–my family’s business. It’s a multi-generational, multi-regional business and yet, it’s also a well-kept, closely guarded secret of a business. I can’t begin to speculate on how it became such a wildly successful enterprise, given that most of you have never heard of it, but believe me, it’s been thriving for a long, long time. 

Legend has it that the company began in a shtetl somewhere in Poland, a shtetl where it was very cold, and the people kept warm by coming up with business plans and feeding the cookstoves with them. One of my illustrious ancestors, however, seems to have carved out a business plan in secret—a visionary plan—which he passed onto his firstborn son, who passed it onto his firstborn son, who passed it onto his firstborn son, and so on, and so on, ad nauseum, until this very old and very visionary business plan ended up in the duffle bag of a great-great-ancestor, who carried it with him in steerage when he set out for America.

To make a long story short, I grew up in the very heart of the family business. Although its true name was rarely spoken, I distinctly remember my mother making a joking reference to Take-A-Chance Airlines. Had the rest of the family not loudly shushed her at that moment, I would have forgotten the incident altogether, but shush her they did, and the secret was out: my parents owned a majority share in Take-A-Chance Airlines. Can you imagine the nausea excitement I felt? 

When I was small, of course, the company was barely out of start-up mode. It was limited to a few offices in a motel, a small apartment, and other decidedly unglamorous places. But as I grew, the company grew with me. By the time I was 11 years old, we had quite a fleet. I mean, the planes! Oh my God, you should have seen them! They were so shiny and so new, inside and out. There were purple plush carpets, purple upholstered chairs, valuable antiques, brand-new lava lamps, and a TV set for every passenger. It was unbelievable!

And you’ll never guess the best part. No. You won’t. I’m telling you. Are you ready?

They paid you to fly on the airplanes! Yes! They really did!  Sometimes, they paid you in cash that came in birthday cards; sometimes, they took you shopping for school clothes; and twice a year, they took you on an all-expenses-paid vacation to places like Florida, Bermuda, Nova Scotia, and Quebec. I don’t know how they managed to remain profitable by paying folks to fly with them, but the money kept coming in like nobody’s business. Of course, the CEO would complain at the dinner table that he was worried about finances, but from what I could see, everyone on those airplanes had all the comforts of home.

Well, most of them did. But not all. Oh, no. Not all. There were two small children, and they were not so very comfortable at all. They had beautiful seats on one of the biggest airplanes, but every now and then, someone would come over to the girl when she was sleepy and touch her in ways she didn’t like. And then sometimes, someone would come over to the boy or the girl and begin beating one of them for no apparent reason. And yet, miraculously, whenever a stranger came onto the airliner, the little girl would play the piano beautifully (yes, there was even a piano on the plane!) and the little boy would do his very best not to bring a hose through the window and flood the passenger area again.

Those were the days! Of course, there was a catch. It wasn’t called Take-A-Chance Airlines for nothing. While the fare was unbeatable, the planes seemed to tumble out of the sky on a regular basis. Sometimes, in the heady days of my youth, I would rush the cockpit, push all the buttons at once, lean into whatever would move, and get that baby back up into the air. But sometimes, I just didn’t know how to do it, and the plane would crash. I have the scars to to prove it. They’re not pretty, so I’m not including photographs. They’re mostly where you can’t see them anyway.

By the time I was in high school, I had started to wise up. I began carrying a parachute, a bedroll, a good pair of walking shoes, several days’ worth of water, and a map every time I got on a plane. I hid everything in my backpack, of course. I had to. You see, it was a well-known fact that on Take-A-Chance Airlines, the planes never crashed or even came close to crashing, which confused my little Aspie mind no end. However, I was smart enough to understand that if I carried a parachute in plane plain view, it might appear that the plane might crash, and then the whole family business would be ruined, all because of me. So I learned to mind my Ps and Qs, let me tell you.

By some miracle, I survived into adulthood. And then, one day, after one touch and one crash too many, I resigned my seat on the board of directors and left my interest in the business to my younger brother. From what I understand, he took over the business after our parents died, and he got their entire inheritance in the bargain.

But I’m getting ahead of myself. As I grew further and further away from the family business, I began to think more clearly about it. After paying people to listen to me rant and rave on a weekly basis for several years, I began to realize that the planes really had been crashing all those years, and that I wasn’t confused or crazy at all.

I want to say that the story ends there, and that I lived happily ever after, but I have two terrible weaknesses: 1) I am a very visual Aspie, and 2) I believe that somehow, somewhere, in one of the company’s regional offices, in a galaxy far, far away, there is a plane that will not crash. And so, after a long time away from the business, I began emailing distant family members on my mother’s side and asking them for old family photographs. Sometimes, I would get wonderful photographs, which I would gaze upon for hours on end. The words that came with the photographs were friendly enough, but I didn’t forge any new or close family relationships with their senders, so I began asking for photographs closer to home. With some desperation, I went to one of my uncles—just one of the innumerable family members who had never called to ask why I’d up and left the family business in the first place. I knew that contacting him was a foolish thing to do (kind of), but I really, really wanted those photographs.

And family. I wanted family. And a plane that wouldn’t crash. And I thought I’d found it when I first emailed my uncle. But I was wrong. As we emailed back and forth, the plane pitched and rolled worse than ever before. And while it was pitching and rolling, I found out that my parents had convened a family conclave in New Jersey, in which it was agreed that if one of their offspring, whose name begins with an “R,” were to contact any other family member for any reason, they were to put her on a plane that would begin its plunge the minute she began to relax and get comfortable.

And that’s exactly what happened.

As you can well imagine, the next several months of my life consisted of paying more nice people to listen to a spirited recitation of all the email exchanges that had taken place as the latest plane was diving into the ground. After awhile, I began to get hoarse, so I stopped talking and began to feel better. And when I began to feel better, I swore off doing stupid things like calling Take-A-Chance Airlines and using my real name to ask for a seat on a plane that wouldn’t crash.

For a while.

However, recently (I know, I know, you don’t all have to groan at once, do you?), I decided to toddle over to my father’s side of the business and see whether there might just be someone who had a little genealogical information and a whole bunch of a few really cool old family photographs of some kind or another. So I looked up people with my father’s surname on Facebook. You know, Facebook. Where you find your friends? And do social networking? What could possibly go wrong? I mean, there’s no sign that says, “Abandon hope, all ye Aspies who enter looking for unknown family members.” If there were a sign like that, I wouldn’t go near the place.

Anyway, as usual, my contact with my new family member started off nicely. I got settled into my chair. The handsome steward asked me whether I needed an additional Ativan to take the edge off my anxiety. I thanked him and said I’d take two. He gave me a glass of crystal clear spring water to wash them down. Everyone was cordial. I was cordial. I was. I was so fucking cordial,  I swear to God, every one of you would have mistaken me for an NT. Really. You want proof? Okay. Here’s proof:

My cousin Ralph (not her real name) sent me a packet of photos that arrived last Tuesday, December 22. Here is the email I wrote in response:

Hi Ralph,

I received the photos today. Thank you so much for sending them! I have been sitting in front of our woodstove, gazing at them. I especially love the ones with **personal family information excised for brevity…**

Again, thank you for sending the pictures. I’m really quite crazy about family photos of any kind, and have a whole wall of photos from my mother’s side of the family, going from my grandparents’ generation and back into the late 19th century.  I’m so glad to begin collecting photos from my father’s side as well.

All the best,
Cousin Rachel

Here is what Ralph wrote back by email the same day:

 Hi Rachel,

I am pleased that you are enjoying the pictures I sent.  I have many more and am experimenting with our new computer.  I think we have figured it out and am attaching some additional pics.  Please let me know if you get them and I will send others.

* Information about attached photos deleted for brevity *

When I hear from you, I will forward some more.  Hope you enjoy them.

Have a good evening.
Cousin Ralph

Here is what I wrote back by email the same day:

Ralph, these are gorgeous! I love them. THANK YOU!

Cousin Rachel

Did you notice the part where Ralph says she will forward more pictures when she hears from me? Five days later, I had not received a single picture. So, I remained my cordial, restrained, friendly self and wrote her the following email:

Hi Ralph,

I don’t know whether you got my previous message. I just want to make sure you know that the photos came through just fine, and that I really appreciate them.

All the best,
Rachel

Here is the response I received an hour later:

Enjoy

That’s it. One word. No salutation. No proper names. No punctuation. Nothing.  So, I figured I’d take one more careful crack at it (I know, I know, it’s getting pathetic already):

Thanks! I am.

The last time you wrote, you mentioned that you’d send more pictures once you learned that I’d received the ones you sent. Just checking in to make sure that all is well.

All the best,
Rachel

Now, I will freely admit that I am working with a couple of subtexts here. When I ask whether all is well, what I really mean is the following:

I hope no one has fallen gravely ill. I really do. However, in my heart of hearts, I know it’s more likely that you’ve been talking to my brother, or to my uncle (who just happens to live in the same town that you do), and that one of them has told you, in no uncertain terms, that I’m the most vile creature ever to walk the earth. And why do they say this? Because I got sick of being hurt by the two (count them, two) people in the family who were responsible for the unwanted touching and undeserved beatings of my childhood, and so I left them behind, and I saved my own life. And I’m sure that whoever you’re talking to has repeated the lie that those two people told everyone. What lie? That I’d written them a letter and told them that if they ever contacted me again, I’d call the police and accuse them of abuse—something that I never, ever threatened to do.

Why does no one believe me?

Oh, yeah, that’s right. The family business is called Take-A-Chance Airlines, my name starts with an “R,” and I always get the plane that crashes—except that the propaganda advertising for the business claims that none of your planes has ever crashed. So you’d better ignore me, because you might just have to acknowledge what really happened, and that would be outside your comfort zone.

Of course, I’m not going to elucidate the subtext to Ralph. At least, not right away.

Somehow, I don’t think I’m the one with the problem here. Except, of course, that I keep hoping to find someone who can stand outside the family business for more than a day or two. Someone simple, who uses words that mean something, and follows through on them. Someone like me.

My mistake.

© 2009 by Rachel Cohen-Rottenberg

11 comments

How This Jewish Aspie Survived the Christmas Season

December 26, 2009 Rachel Belonging, Communication, Judaism and Jewish Life, Sensory Processing Issues, Spiritual Beliefs

Before I launch into the saga of how I made it through the past month in one piece, I wish to point out the following: I refer to the period between the last Thursday in November and the 25th day of December as the Christmas season. I refuse to call it the holiday season.

Why? Because I’m a foolish Aspie who believes in calling things by their proper names. I look around me at this time of year, and I see pretty lights and decorated trees. If I walk into a public place, turn on my radio, or watch TV, I hear Christmas carols. If I speak to another living soul, chances are that said living soul is either very, very excited or very, very stressed out about buying presents to put under the tree. What do any of these things have to do with Chanuka? Or Kwanzaa? Or the Buddha’s birthday? Or any other holiday on the face of the planet except Christmas? Nothing. Absolutely nothing.

Of course, many people celebrate Christmas as a secular holiday, concentrating on it as a solstice celebration. And certainly, as the Festival of Lights, Chanuka must have had its origins in the primal human need to shine a light in darkness. But my practicing Jewish mind cannot forget that Christmas isn’t simply a solstice celebration. For most people in the world, it’s a religious holiday, and while I can turn just about any piece of religious text into a metaphor, it’s very hard for me to be confronted by a life-size manger scene and symbolize it away. I experience the world so visually that these kinds of things have a visceral impact that I just can’t shake.

So, I like to call the season what it is. It’s Christmas time. For people who love Christmas, who have wonderful times with family, and who are not easily overwhelmed by crowds or by the excited, frenzied energy of other people, it’s a happy time. I respect that. I accept that others have customs and beliefs of their own, and I do my best not to complain during the Christmas season—at least, not outside my own house. Now that Christmas has passed, however, I want share how I deal with a time of year that I typically dread.

For most of my life, I’ve always identified my dread as that of a Jewish woman surrounded by the trappings of an entirely alien culture. It’s not as though I see my Jewishness reflected in the larger culture in July or anything, but at Christmas time, I cannot go anywhere and find respite from the goings on. To put it bluntly: Christmas is in my face wherever I go. There is no escaping it. I’ve even tried going on Jewish spiritual retreats in December, only to have people sing Hebrew prayers to the tune of Rudolf the Red-Nosed Reindeer. You haven’t lived till you’ve seen a guy in a tallis singing Adon Olam to the tune of a Christmas carol.

Now that I realize that I’m autistic, I’ve become aware that I’m not just feeling the alienation that springs from being a member of a religious and cultural minority. In the best of times, being autistic means that I feel as though I live in a foreign country and will never fully learn the language. At Christmas time, that feeling intensifies by several orders of magnitude. I don’t understand what all the excitement is about, and I can’t even begin to parse the social rules. When someone wishes me a “Merry Christmas,” what am I supposed to say? I almost reflexively say, “Same to you,” but inside, I’m thinking, “I don’t celebrate Christmas. Why do you think I do? Now I’ve just gone and pretended that I do, which is a lie.” I get caught between the social niceties and the truth. It happens the rest of the year, too, but at Christmas it happens just about all the time. 

Unfortunately, the more generic “Happy Holidays” greeting does not remedy the situation. I know that people are trying to be ecumenical and embracing, but it doesn’t work. At least, it doesn’t work for me, especially during those years when Chanuka begins in early- to mid-December and is already over before I get wished a happy one. At those moments, I have to choose between saying, “Same to you” and “My holiday is already over.” Because I am a nice person, I usually just say, “Same to you,” but I’m basically lying. Again. I’m suggesting that I’m still happily celebrating Chanuka when all the latkes have already been eaten and all the menorahs have already been put away.

This year, I began to realize that being autistic gives me a bonafide, neurological reason for staying away from all the goings on associated with Christmas. At any other time of the year, I am very careful about where I go. In order to avoid sensory and empathic overload, I stay away from loud places. I stay away from crowds. I wear earplugs and a noise-blocking headset just to go grocery shopping. So going out during the Christmas season is absolutely out of the question. All the frenzied, stressed, excited energy out there would hit me like a tsunami, and I’d come home exhausted, disoriented, and sick. Why do that to myself? There is no good reason.

So, starting on Thanksgiving, I went on retreat—in my own house. Of course, I planned ahead. I made sure that I had sufficient food from my four major food groups: protein, winter vegetables, spelt flatbread, and dark chocolate. I cancelled my volunteer work, my ASL tutoring, my trips to the co-op, and every other outside activity except my therapy appointments. In fact, when I told my therapist how I was spending my time, he said, “What a great idea! If more of my clients said ‘If I haven’t bought it by Thanksgiving, it’s not getting bought,’ I would see a significant improvement in their moods and levels of functioning.” I felt supported.

Other than my weekly trips to the therapist, I stayed home and did all kinds of fun things. I did some quilting. I exercised on my stationary bike. I got all the materials ready for knitting Bob a sweater. I joined Facebook and found an astonishing number of childhood friends. I did some very satisfying genealogical research on Ancestry.com. I had some very nice contact with a cousin who sent me some wonderful old family pictures. I watched an episode of “Buffy the Vampire Slayer” with Ashlynne and several episodes of “The Wire” with Bob. I supported Bob’s week-long trip to California, and I enjoyed the solitude. A lot. Surprise!

Of course, I also celebrated Chanuka and Ashlynne’s 17th birthday. This year, Ashlynne got the use of my car, and I got the best present ever: two of my Facebook friends, who are not Jewish, wished me a happy Chanuka while it was still Chanuka! Do I have good judgment when it comes to friends, or what?

I had a good time. And I’m in a good mood. And after January 1st, I’m going to resume my regular activities.

I like this way of passing the Christmas season. I’m going to make it a tradition.

© 2009 by Rachel Cohen-Rottenberg

36 comments

If I Could Rewrite the DSM-IV Criteria for Autism

December 20, 2009 Rachel Alternative Theories of Autism, Critiques of Autism Theories, Diagnosis, Mainstream Theories of Autism, Spectrum Pride

The very idea that autism appears in any book called the Diagnostic and Statistical Manual of Mental Disorders is deeply offensive to me. When I venture in and try to make sense of the current split between the diagnostic criteria for Asperger’s and autism, all I can see is that it places autistic people into hierarchies that make no logical or practical sense.

Because this whole subject is really bothering me, I thought it might be fun to rewrite the diagnostic criteria, line by line, so that the text describes us as something more than walking collections of mysterious pathologies. In my rewrite, I have maintained each line of the diagnostic criteria with a strikethrough, followed by my proposed changes. Because the people who wrote the diagnostic criteria reused some of the same text, but didn’t bother to create a consistent numbering scheme, I couldn’t combine the criteria for Asperger’s and autism without adding more illogic to the situation. In a perfect world, people would check their writing for logical consistency before they publish it. Since they didn’t, my rewrite consists of two parts.

Part One
How to Tell Whether Someone is an Asperger’s Awe-tistic
Diagnostic Criteria for 299.80 Asperger’s Disorder

(I) Qualitative impairment in social interaction, as manifested by at least two of the following:
(I) An unusual mode of social interaction, as manifested by at least two of the following:

(A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(A) An acute sensory and empathic sensitivity that i) makes eye contact and social interaction intensely difficult and ii) results in the rejection of ambiguous nonverbal behaviors in favor of direct, detailed, and honest speech.

(B) failure to develop peer relationships appropriate to developmental level
(B) Beginning in early childhood, a gift for developing relationships with people of widely different ages and developmental trajectories.

(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(C) The understanding, gained uncannily early in life, that i) most people will not appreciate the awe-tist’s interests or achievements, and ii) showing, bringing, or pointing out objects of interest will be met with judgment and/or hostility that manifest in socially acceptable forms of repression (such as social exclusion) or criminal acts (such as physical assault).

(D) lack of social or emotional reciprocity
(D) An acute sensitivity to the feelings of others that causes the awe-tist to refrain from using banal pleasantries or empty words that may hurt or offend.

(E) An altogether eccentric form of social and emotional reciprocity that insists upon fairness, directness, sensitivity, tolerance, substance, acceptance of difference, and mutually interesting subject matter.

(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
(II) Specialized, disciplined, and brilliantly useful patterns of behavior, interests, and activities, as manifested by at least one of the following:

(A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(A) A passion for one or more specialized subjects extraordinary in intensity and focus.

(B) apparently inflexible adherence to specific, nonfunctional routines or rituals
(B) An innate capacity for self-care that manifests itself in the creation of comforting routines and a fascination with patterns of all kinds.

(C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(C) An innate capacity for sensory self-regulation by means of various stims, which can encompass such soothing activities as joint compression, touching the comforting texture of soft fabrics, watching spinning objects, and so forth.

(D) persistent preoccupation with parts of objects
(D) An exceptional ability to work with objects in an unconventional fashion.

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.
(III) Because the world is not yet attuned to the acute sensitivities and extraordinary gifts of awe-tistic people, being awe-tistic can result in social ostracism, occupational dead-ends, and other disappointing outcomes. For the lives of awe-tistic people to improve, early educational and social intervention in the lives of neuro-typical people is recommended.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)
(IV) Whether you started talking at two years old or four years old, does it really matter?

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.
(V) We are certain that in a different time and culture, awe-tistic people would have places of honor as shamans, dreamers, healers, artists, builders, and trusted confidantes.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
(VI) The person’s awe-tistic consciousness is not better accounted for by some other type of hierarchical hair-splitting that results in diagnosing life itself as a kind of disease.

Part Two
How to Tell Whether Someone is Awe-tistic, Period
Diagnostic Criteria for 299.00 Autistic Disorder

(I) A total of six (or more) items from (A), (B), and (C), with at least two from (A), and one each from (B) and (C):

(A) qualitative impairment in social interaction, as manifested by at least two of the following:
(A) An unusual mode of social interaction, as manifested by at least two of the following:

(1) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction
(1) A lack of reliance on the use of ambiguous nonverbal behaviors.

(2) failure to develop peer relationships appropriate to developmental level
(2) A love of solitude and solitary play.

(3) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(3) The understanding, gained uncannily early in life, that i) most people will not appreciate the awe-tist’s interests or achievements, and that ii) showing, bringing, or pointing out objects of interest will be met with judgment and/or hostility that can manifest in socially accepted forms of repression (such as social exclusion) or criminal acts (such as physical assault).

(4) lack of social or emotional reciprocity
(4) An acute sensitivity to the feelings of others that causes the awe-tist to refrain from using banal pleasantries or empty words that may hurt or offend.

(5) An altogether eccentric form of social and emotional reciprocity that insists upon fairness, directness, sensitivity, tolerance, substance, acceptance of difference, and mutually interesting subject matter.

(B) qualitative impairments in communication as manifested by at least one of the following:
(B) qualitative differences in thought and perception as manifested by at least one of the following:

1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
1. Visual and associative thought patterns that the awe-tist has difficulty translating into the more restrictive medium of verbal language.

2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
2. An acute sensory and empathic sensitivity that makes spending extensive periods of time with people intensely difficult.

3. stereotyped and repetitive use of language or idiosyncratic language
3. An effort to use language despite the tremendous challenge of transitioning between visual/associative thinking and verbal/linear expression.

4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
4. The development of all kinds of unique, idiosyncratic, and interesting ways to spend one’s time.

(C) restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least two of the following:
(C) Specialized, disciplined, and brilliantly useful patterns of behavior, interests, and activities, as manifested by at least two of the following:

(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(1) A passion for one or more specialized subjects extraordinary in intensity and focus.

(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(2) An innate capacity for self-care that manifests itself in the creation of comforting routines and a fascination with patterns of all kinds.

(3) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements)
(3) An innate capacity for sensory self-regulation by means of various stims, which can encompass such soothing activities as joint compression, touching the comforting texture of soft fabrics, watching spinning objects, and other similarly enjoyable activities.

(4) persistent preoccupation with parts of objects
(4) An exceptional ability to work with objects in an unconventional fashion.

(II) Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:

(A) social interaction
(B) language as used in social communication
(C) symbolic or imaginative play

(II) Because awe-tistic people often see the world in unusual ways, the difficulty of translating awe-tistic consciousness into the more restrictive medium of verbal language may result in the pathologizing of awe-tistic social interaction, language development, and play.

(III) The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder
(III) The person’s awe-tistic consciousness is not better accounted for by some other type of hierarchical hair-splitting that results in life itself becoming a kind of disease. 

© 2009 by Rachel Cohen-Rottenberg

32 comments

Reclaiming Purple, Part 2: Forgiveness and Compassionate Understanding

December 14, 2009 Rachel Childhood

After reading and digesting everyone’s thoughtful comments on my last post, I came upon a very simple solution to reclaiming the color purple: I can just forgive my mother.

Now, I say that this solution is simple, but that’s only because I’ve been struggling with it for most (all?) of my life. The process has mostly entailed chipping away at all the things that forgiveness does not mean to me:

1. Forgiving my mother does not mean that I believe that my mother did the best she could. I have no idea whether she did the best she could. Maybe, she did. If so, her best was pretty poor, and that thought just generates more anger in me. And maybe, she didn’t do the best she could, and that thought keeps me on the wheel of wondering why not. So I’ve learned to dispense with the question altogether.

2. Forgiving my mother does not mean that I excuse the things she did. I don’t. She did some awful things, they were wrong, and nothing will ever make them right.

3. Forgiving my mother does not mean that I was partly to blame for what happened. I wasn’t. I was a kid.

4. Forgiving my mother does not mean that if she were still alive, I’d want to have any contact with her, let “bygones be bygones,” and dive back into the dysfunctional family cesspool. No way, no how, not in this life or in any other.

So, what does forgiveness mean to me? To explain it, I have to begin from a Jewish perspective. In Judaism, forgiveness is not simply an individual matter of giving up anger or resentment, although doing so is part of the process. It’s not about individual feelings so much as acting to repair the breaks in our relationships. In Jewish tradition, if someone asks my forgiveness, it works a lot like a 12-step program. The person needs to admit what he or she did, acknowledge that it was wrong and caused harm, promise never to repeat the behavior, offer to make amends for the damage done, and then change and act in a different way. In this paradigm, forgiveness is an action word. One obtains forgiveness by making amends and changing one’s ways; one grants forgiveness by discerning that the person is no longer a danger and then inviting the person back into one’s circle with open arms.

Of course, there are some situations that make this paradigm very difficult to put into action. For example, what if the offending party doesn’t think that he or she has done anything wrong? What if the person who has wronged you actually blames you, and expects you to fix everything? What happens when the person dies and there is work left undone?

I have struggled with all of these problems, and so I’ve had to search for a different way to forgive. A few years ago, I had a therapist who said that I’d pretty much figured out that forgiveness is a two-way street, and that it necessitates everyone involved being able to communicate. When that isn’t possible, she said, one has to jump to an entirely differently level and cultivate compassionate understanding.

I loved those words. They felt completely right. Since then, I’ve been defining forgiveness as the process of arriving at compassionate understanding. With my father, I’ve found the road much easier than with my mother. Somehow, I’ve just accepted who he was. I can see that he had no meanness in him, and that he was pretty much lost when it came to appropriate behavior. Perhaps it’s been easier because he was an Aspie, and I could always relate to him better than I could to my mother. Or maybe it’s because he was the one who played baseball with me and who seemed to enjoy having kids. Or perhaps it’s because when he wasn’t around my mother, I never felt that my father was a danger to me. I’m not sure, but I don’t feel that my life is saturated with my father’s bad energy anymore. It’s been a long time since that was true.

But compassionate understanding for my mother? I’ve always said that it would have to wait for a different lifetime, that it was just too difficult. But I don’t feel that way anymore. My feelings about my mother are sapping my enjoyment of life, and given the brevity of human existence on this planet, I can’t be wasting any more time letting that happen. When I wrote in my last post that my mother was cruel, and that it wasn’t her fault, because she was just wired wrong, that was a beginning. I didn’t know that I was going to write those words, and I didn’t realize that I’d been feeling the truth they describe. But I feel it very powerfully now. Something was amiss with my mother, just as something was amiss with my father. I can’t quite define it, but it’s always been there, and I’ve always seen it. The trouble was that my mother was so loud and so dramatic about always being right that I couldn’t hear myself think straight. It’s taken a lot of years to tune out the noise and just recognize who she was.

I’ve spent a lot of time fearing my parents, both when they were alive and after they had passed. I’ve carried the fear that when I die, my parents will be the ones to meet me at the gates of the afterlife, where they’ll obliterate me for the unforgivable sin of breaking contact with them. Recently, I’ve realized that I’ve been walking around feeling guilty for years over the break. This week, I finally understood that I don’t need to ask anyone for forgiveness over what I had to do to protect my life. Quite the contrary: I need to forgive my parents. For everything. Right now. It’s completely up to me. If we should meet at the gates of the afterlife, and they start telling me how horrible, how evil, how worthless I am, all I have to do is to say, “I forgive you.” And then, I’m free. No one can touch me.

But I don’t need to wait until I die. I can forgive them now. I can just say, “It happened. It was terrible. And it’s over. I don’t want to suffer, and I don’t want you to suffer. I forgive you.”

Does it matter to them? Who knows. It matters to me. It matters that I choose life and blessing right here, right now. It’s not just about clearing out the clutter from my soul. It’s about being able to reclaim my enjoyment of simple things: the color purple, classical music, my memories of childhood, and this moment, which is infinitely precious and infinitely fragile.

© 2009 by Rachel Cohen-Rottenberg

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Reclaiming Purple, Part 1: Your Help is Appreciated

December 7, 2009 Rachel Childhood, Fiber Art, Modes of Thought

When I posted a picture of my first quilted piece, a couple of you mentioned how much purple I’d used. Unbeknownst to y’all, I have a teensy-weensy issue with purple. Up to now, I’d imagined that I had this itty-bitty problem quite under control, but after reading the comments about my art, it’s clear that I don’t. Much as I try to avoid the color, it pops up of its own accord.

Okay, so what’s the problem? Two words: my mother. The woman loved purple. She was nuts about it. From the time I was seven years old, our house had plush wall-to-wall purple carpeting on both floors, and going up the stairs, too. The only rooms without purple carpeting were the bedrooms. Everywhere else, it was purple, purple, and then more purple. From 1965 on, long before other people were adorning their middle-class suburban domiciles with purple, my mother blazed her own trail and went for it.

What’s worse, in 1972, my mother got me a purple blouse that was the most uncomfortable piece of clothing ever known to humankind. It was made of that puckered material—maybe some of you are old enough to remember it?—and it was tight. It was worse than spandex. I don’t know how I kept from screaming and ripping it to shreds. I even have a class picture in which I’m wearing it. (I don’t look happy.)

So, here’s the deal: In the house in which I was raised, if something belonged to my mother, it belonged to no one else. Sharing was not her strong suit. If she were grieving the loss of a loved one, all the grief had to be hers. No one else could cry. No one else could express any emotion. No one else could talk about it. If anyone tried, my mother pulled rank and talked about how it was all about her grief. I didn’t grieve my maternal grandparents, who were as kind to me as my mother was cruel, for 30 years. I just wasn’t allowed to.

And yes, my mother was cruel. It wasn’t her fault. Something inside her was wired wrong, and even if she’d been willing to change, it might not have been possible. As it was, she was most decidedly not willing to change. In fact, as far as she was concerned, everyone else was always wrong, and she was always right.

Enter this sensitive, visually inclined Aspie. I’ve heard it said that not only do autistic people feel things acutely, but we also remember events and their associated feelings quite intensely, and for a very long time. I am no exception. For me, the visual world is saturated with emotion. I can’t help it. It’s just the way I am. So, the color purple is saturated with my memories of my mother. And some of those memories center on the idea that purple belongs to her, and not to me. I can’t have it, even though I love it.

It makes me want to cry with frustration. I feel like I’m in a vise and can’t get myself free of it.

Do any of you have experience with a similar issue? Have any of you managed to wring out the associations and replace them with your own? I’m quite interested in how other people handle situations like this one.

© 2009 by Rachel Cohen-Rottenberg

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The Gift of Being Autistic

December 1, 2009 Rachel Critiques of Autism Theories, Diagnosis, Spectrum Pride

I’ve been pondering the fact that while neuro-typicality is considered “normal,” autism is considered a medical condition. This lack of balance bothers my autistic soul, which craves symmetry, integrity, and basic fairness.

Perhaps, at some future date, autism will be removed from the DSM, much as homosexuality was entirely stricken from its pages in 1986. I don’t expect to see this development in my lifetime. The scare tactics of organizations like Autism Speaks; the ways in which scientific researchers have appropriated our voices; the fact that we are the subjects of medical and psychological “research” to find “treatments” and even a “cure”; the propensity of so many people to define only one way of thinking and believing as “normal”— all these factors mean that the struggle for respect and empowerment will be a long and difficult one.

Even before I knew that I was autistic, though, I got the message that something was “wrong” with me. Whatever it was, it had to be “fixed,” preferably with the help of medical professionals. I’ve defined the problem in a number of different ways over the course of my lifetime: insecurity, self-loathing, difficulties with trust, anxiety, depression, loneliness, failure to find “community,” a relentless inability to sit down and shut up when told to do so, a tendency to go on and on and on about the topics I’m passionate about, and anger at things that other people just shrug off. After nearly every conversation I’ve ever had with anyone, anywhere, I’ve thought, “Did I do that right? I hope so. I’d better replay the whole thing and make sure I wasn’t too much of an idiot.” I knew that while other people were going home and thinking about what a nice time they’d had, I was obsessing about whether I’d screwed up.

Well, my dear friends, I am happy to tell you that the idea that I’m broken is on its way out. I can’t say that it’s gone entirely, or that it won’t re-emerge at a later time, but today, right now, I know that I am so much better than fine. I know that I have a gift—the gift of being autistic. In another culture, at another place and time, I might have been honored for this gift, and I might have been given wise counsel for where this gift might lead me. As it is, I’ve had to stumble along until I just couldn’t stomach the idea that I’m broken anymore. And then, a new world began opening up to me.

I first noticed it happening when my ASL tutor came over a couple of weeks back. She is an artist, and she teaches art at the school for the Deaf. She was born with tinnitus in both ears, so she can hear and speak, but it’s quite difficult for her in many of the same ways it’s difficult for me. She doesn’t like being around crowds of people, because it’s hard for her to pick out what people are saying. So, using a combination of signing and speaking, we got to chatting about a number of things, including art, and I invited her to take a little tour of my house. We have a lot of artwork in this house—not just mine, but paintings by Bob’s grandfather and grandmother, some Ethiopian embroideries, my daughter’s photography, and a number of old ancestor photos. My tutor really loved looking at all the artwork, and she was so direct, so honest, and so enthusiastic in her responses that I felt even more comfortable with her than I had before. The similar ways that we process sound and speech seem to lead to a similar need for directness and friendliness. It’s as though we both know there is little time to waste with anything else.

Then, I got together last Sunday with my new Aspie friend who lives nearby. I was thinking that we’d spend two hours together at the most, but the afternoon just kept on going and going. When I got home 3 ½ hours later, I was tired, but not “strung-out-and-running-on-fumes” tired. I got home and thought about what a nice time I’d had, just like a regular person.

How did this happen? Well, first of all, I knew that my friend thinks as I do: associatively and intuitively, rather than linearly and analytically. It’s not that we can’t get all linear and analytical; we can, and we do. But before we get there, we’re free associating and intuiting connections all over the place, and it’s great fun. That day, being in the presence of someone else whose thought patterns are like mine took away a great deal of social anxiety. I knew that I could just relax and let my mind do what it does. So, for example, when I had a story to tell, my friend gave me plenty of room to tell it. Sure, I repeated myself, and made leaps of logic, and went down some little incidental and tangential byways, but it was all okay. And when she spoke, she did the same things, and I gave her plenty of space to express herself. Can you say “social reciprocity”? And the best part was that, as a speaker and as a listener, I didn’t feel compelled to follow any kind of linear logic, because we were engaging in a different kind of logic altogether. What a relief! It’s so tiring to try to follow most conversations because their form is so alien to the way that my mind works.

Needless to say, it felt perfectly okay to engage in apparent non-sequiturs that day, knowing that my friend understood that these non-sequiturs were simply the result of the way I think, and did not signal disrespect or lack of interest in what she was saying. So, at one point, we were looking at the fun stuff on her refrigerator, and the next moment, I turned into the living room and started (metaphorically) tripping on this very cool table she had placed by the window. It went something like this: “Your boyfriend seems like a wonderful person, and I love the Halloween costume he’s wearing in this picture and…WOW! Look at that table! I love it. It’s got a place under it to hang glasses, and a cloth holder below for wine bottles, and…Wow! I just love such compact, multi-purpose stuff, you know?” Did she look at me like I was crazy? No. She showed me the hidden place for the ice bucket.

My new friend is also the person who recommended that I read The Cosmic Serpent by Jeremy Narby, a book that has broken open my visual thinking and my love of texture, pattern, color, and image. Suddenly, I’m making art nearly every day. Do most people do that? No. Does that mean there’s something wrong with it? Of course not.

My ability to engage the world associatively, visually, intuitively, and empathically is a great gift. My passion for balance and for justice is a great gift. My ability to enjoy solitude is a great gift. My ability to create things of beauty is a great gift. The intensity with which I feel things, hear things, and see things is a great gift.

None of these gifts are easy. Having a gift does not necessarily make life fun. In fact, having a gift and not knowing how to use it can make the world a cold and lonely place. Most of us live in a culture that pathologizes our way of being, rather than giving us support for using our gifts. Many of us wander in the wilderness for most of our lives, wondering where the hell it is we’re going. It isn’t fun, but having fun is not the same as knowing joy. Sometimes, finding joy is hard work and takes a lifetime of wandering. But to be able to value one’s own gifts, on their own terms, without reference to an arbitrary idea of “normal,” is the beginning of joy.

There are times that I feel so changed that I don’t recognize myself. Who is this person making art with a high-temperature glue gun and pieces of an old camera? Who is this person who has suddenly discovered that hand-stitching a quilt is a calming and centering practice? Who is this person who thinks associatively, and rambles on, and knows that far from something being wrong with her, something is very right with her?

It’s me. I’m an autistic person who has finally figured out that I don’t need to change. I just need to be.

© 2009 by Rachel Cohen-Rottenberg

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