New from PT: At The Wedding

Lately, thanks to some great discussions on Facebook groups, and Aspie Teacher's recent post, "Why Can't They Understand That I'm A Girl," I've been thinking a lot about how Asperger's effects gender expression. In my new post for PT, I wrote about my experiences in the "girl world" of beauty - and how, despite having a desire to succeed, I always felt like an outsider, due to my social limitations.

How much of gender is socialization, and how much is inborn? And how does Asperger's change the socialization of gender? How many of us feel subtly out of sync with others of our gender? And how much of that feeling in only perception...born by the insecurity of being unable to read others' reactions to us?

At The Wedding

I made the final touches, and put down the makeup brush. From over my shoulder, someone handed the bride a mirror. Gulping down a knot of anxiety as she examined my handiwork, I found myself thinking: After a lifetime of feeling like an outsider in the "girl" world, how did I wind up here?
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Controversy in the Autistic Community

John Elder Robison recently wrote a great post on his Psychology Today blog about the controversies in the autism community. He asks, "Why Can't We All Get Along?" The post seemed to generate some very good discussion.

One particular comment interested me...it brought up the question of whether we all mean the same thing when we talk about a "cure." See my response here.

John also posted a follow up exploring what acceptance really means. Does being accepted mean that you can behave however you want, and society has to just accept you? See what he has to say here.

What do you think? Where are the boundaries between self-acceptance and bad behavior? What does a "cure" mean? Should we pursue it, or no? Are a cure and acceptance mutually exclusive? And why can't we all just get along?

The Benefits and Shortcomings of Associative Thought

I just wrote a post for Psychology Today about the unusual side effects of my particular brand of associative & visual thought. I'd love to get some feedback from my aspie friends. What are your experiences with associative thought? Do you think in pictures, or in words? Do you think either method of thought provides specific advantages?

What are your thoughts?

Is Harry Really Hairy?

In a recent book, and accompanying article, autistic savant Daniel Tammet explored the connections between associative thought and creativity. Inspired by his thoughts, I found myself exploring all the ways associative thinking manifests in my life. As I explored, I realized something that I hadn't expected - that the roots of many of my social issues lie at the intersection of visual and associative thought. Read More

Gardening, Asperger Style: Learning When Not To Follow The Rules

Well, it's spring again and the gardening bug has definitely bitten me. While the weather is still too unpredictable where I live to plant, that didn't stop me from stopping by a local nursery to dream. While making my great plans for the season ahead - I found myself reflecting on the origins of my interest in gardening, and my disastrous early attempts. I wondered...how much of it was typical, and how much of it was Asperger's?

http://blogs.psychologytoday.com/blog/aspergers-diary/200905/gardening-asperger-style-learning-when-not-follow-the-rules

Six Months....

Well, it's been more than six months now that I've been blogging for Psychology Today. I have to say, it's been a lot of fun. Sharing the site with eminent researchers, psychologists, psychiatrists, and writers has been very interesting.

The greatest opportunity has been to actually communicate with some of those whose research is shaping the current view of Asperger's and Autism. Take, for example, my latest post Joe and the Mega-Sized Smoothie: Language and Asperger's, which is a response to Edouard Machery's recent work Intentional Action and Asperger Syndrome. The subsequent discussion has been extremely interesting.

While I disagree with the preliminary conclusions made in Mr. Machery's study, I'm highly gratified that a researcher is open-minded, willing and interested enough to explore these differences. To quote, one of my favorites, Ghandi, "Honest disagreement is often a good sign of progress."

My New Blog

It's funny how things happen, a few months back I received an e-mail from an editor at Psychology Today. She had read some of what I had written here, and liked it. So, in short, I have a new blog "Asperger's Diary", on Psychology Today's new blog site. It's my hope that through this new blog, I can help drive some mainstream awareness and understanding regarding issues related to Asperger's Syndrome, so please check it out. I welcome your feedback & comments - I want to make it the best it can be.

I'm still keeping a presence here for my aspie friends. When I first began blogging here, I had no idea how many of my experiences would resonate so strongly with other aspies, or what a community I was entering into. So, thanks for your readership keep sharing your stories. The more we share, the less alone we feel, and the more we connect.

Best regards to all my friends out there...

The Aspie Princess (aspieprincess at worldnet.att.net)

Differences and Similarities - "Flavors" of AS

I have mentioned before how interesting it is to me to see the different "flavors" of AS. After reading Temple Grandin's book, Developing Talents, I've moved on to Daniel Tammet's book Born on a Blue Day. On the back is a quote from Temple Grandin, talking about how "fascinating" it is to read about a the mind of a mathematical savant whose mind is "both similar to and different from my visual brain." I have to say that I agree.

While my visual brain is nowhere near the pinpoint accuracy of Temple's, I would say that my way of relating to the world is similar to hers. I have always related to the world in a visual way - and really, until lately I didn't realize that others did not do the same.

Just as Temple describes in her many articles and books, I see things in "photo-realistic images." As a child, this made me a crack-whiz at spelling, because as long is I studied the words long enough (and/or intently enough), my brain would form a "snap shot" of the word which was stored in my memory for quick retrieval. Then, when asked to spell the word, all I needed to do was pull up the "snap shot" and read it back, just as if I were reading it from the page.

Reading about Daniel's experiences is very interesting to me. The way he experiences the world is similar in some ways, others not. While he also relates the world in a visual way, it seems that it is in a more symbolic way. Letters and numbers have their own colors and textures, with their own "feel" as well. While it sounds very unusual to me, I actually have heard something similar before.

My possibly aspie co-worker, which I mentioned in Aspies, Aspies Everywhere and Groups (The Horror!), described something very similar to me and another friend. He writes quite a bit in his role at work, and we all got to talking about writing in general (specifically, how shocking it is that in a corporate environment, how many highly educated people can't seem to do it well). Eventually that led to talking about school.

It turned out that all three of us at the table had excelled in spelling in school, all for different reasons. Me, for the reason I mentioned above. My NT friend had an entirely different way of managing it (which generally involved sounding things out). Our PAC (potentially aspie co-worker), talked about how he could tell how a word was spelled by how it appeared in his mind. He described certain letters appearing in his mind in a certain color, so he would always know the spelling of the word by the sequence of colors that appeared in that word as represented in his mind.

Daniel Tammett describes a slightly more nuanced and complicated phenomenon. For him, the letters don't remain the same color if consolidated into a word. He describes:
"I can even make the color of a word change by mentally adding initial letters of the word to turn the word into another: at is a red word, but add the letter H to get hat and it becomes a white word."

Daniel Tammet and my PAC both share this manner of relating to the world that is different, I also find that there are similarities as well. For example, one of Daniel's savant talents (which I've seen impressively demonstrated on TV) is an incredible facility for foreign languages.

While I'm nowhere near as talented as he is, this is also an area which I excelled. It has always stricken me as strange, given that language is an often highlighted area of difficulty for many people on the autistic spectrum. But for people like me, and Daniel Tammett - it comes uncommonly quickly and easily.

I find myself wondering - what is it in our individual makeup that causes these differences? Why is it that my PAC and Daniel Tammet have this unique way of seeing letters and words, but I don't? And why do I find it easy to pick up foreign language, but others on the spectrum struggle with language altogether? What are the similarities and differences that make this possible?

Neither of these ways of being are necessarily NT, but are very different from each other. As much so as some of the accounts of people on the spectrum that I've read who don't think visually at all. What is the commonality that causes such a range of symptoms? Is it all about what area of the brain is wired differently? And, at what point does a different way of being aspie transform into being something completely different altogether?

It's The Little Things

It's funny how little things can make you happy beyond all reason. I think this is likely true of the general population, but I think especially true in the aspie life. Our innate intensity makes amplifies our reactions.

It sounds really odd - but I've spent the last few weeks floating on a cloud because I finally got a library card! (How geeky is that!)

I won't go into details, but for many years, due to either a glitch, or a really preposterous policy (I'm not sure which), I was not allowed to get a library card at my local library without paying a gargantuan sum. I think it was really something like gerrymandering...I didn't live within the lines they drew as "officially" in district...whatever....

Anyway, a few weeks ago, I decided to take another run at it and poof! Suddenly all barriers were removed! I felt like a kid in a candy store. After several years of only being able to skim books that I was interested in the bookstore, and add them to my continuous list of "books I want," suddenly I can read any book I want without spending a dime.

My long list of asperger books that I wanted to check out, couldn't find in any bookstore, and that I would have had to order online, now is available to me whenever I want it, at a few clicks of a mouse. Of course, my local library doesn't stock many of them directly, but say hello to the interlibrary loan!

I am, of course, on total aspie obsession mode. My husband keeps joking with me that I should just get myself a bed and live there...

It's like being freed after living so many years straitjacketed by lack of access. (My, my, how dramatic can I get!)

It's been so long - the technology has completely passed me by. Renewing books online, downloading e-books, online research libraries and card catalogs from all affiliated libraries....WOO HOO!! It's Star Trek time!

I've already ripped my way (figuratively, of course) through several books that I have been dying to read for years. One was Temple Grandin's book Developing Talents, which I found very encouraging to read. While it was written with a thrust towards someone much younger and less established in career than I am, I still enjoyed it. I wonder what my life would have been like had I had a diagnosis and access to such a book when I was first venturing into the world of work.

I'm a great fan of Temple Grandin, having read both of her first two books Emergence, and Thinking in Pictures, and, of course, Oliver Sacks' description of her in An Anthropologist on Mars.

Interestingly, it's the little things that resonate in these first person accounts. My first inkling that I might be on the autistic spectrum was when I saw Rain Man for the first time. It was the little things that the autistic character, Raymond, did that jumped out at me. How he seized upon a radio jingle and repeated it, over and over - "97X BAM! The future of rock and roll! 97X BAM! The future of rock and roll." How he hummed along with the distinctive noise that a car makes when crossing from regular road to a suspension bridge, while staring, fascinated, at the shapes the bridge towers make against the sky as you speed past them. Rocked me to my toes - because it was that clear moment of recognition. I did that. I am that.

In Temple Grandin's books, she talks about a childhood fixation with an amusement park ride called The Rotor. One of these machines that spins so quickly the centrifugal force sticks you to the wall. Yup. Did that. Or when she talked about developing her squeeze machine - I flashed back to being a four or five year old, climbing between the mattress and box spring of my bed to take my naps, or wiggling myself into the cleft between the wall and the bed. The soothing feeling of the pressure against my body. Yup. Me.

You could put the two of us next to each other, and I'm sure from the big picture we be as different as can be. But in the little things, we're the same. And suddenly, those little things seem big.

Loneliness

Loneliness has been a constant companion in my life. I laugh when I read the news articles which try to say that people with Asperger's "have no desire for human companionship." I can't speak for all - it may be true of some, but it has certainly not been true for me. It can feel like a curse - having the acute desire for human interaction, togetherness, but constantly struggling to make it happen.

The holiday season has always been especially difficult for me. There are many expectations created by the stories and depictions in the popular media of the "joyous" holiday season. For me, it's often been difficult to reconcile these expectations with my actual reality.

This is the time for the parties that you're not invited to. Or if you are invited - you feel like an outsider as everyone else mixes and mingles when you find yourself tongue tied in a corner. It's a time for family celebrations, which don't measure up to the idealized "Currier & Ives" pictures people have in their minds.

It's the time of year when you have to wrap your mind around how to maneuver your way around the social dilemmas that give even socially gifted people trouble.

Through this holiday season, I've been thinking about this a lot. How many people are out there suffering, because they feel that Christmas should be like the movies? Or because they feel even more acutely the desire to "fit in," and feel even more acutely their failure to do so? Or simply feel more alone, when everyone is feeling togetherness, and you're at home alone...

I was rooting around in some of my old papers this afternoon, and I found a journal entry I wrote in my teens, which I think echoes what many people with AS feel, perhaps more intensely this time of year.

"I get so very sad, yet no one around seems to understand. I really wish I had someone. The only way I have to explain it is through my writing or through my stories, and that is hard to express. I know any one who has known me for any amount of time gets tired of my stories. I don't know. It's so lonely to spend my life jumping back and forth from here to there.

I never have had a chance to have a normal life...Why do I have to be so different?

I spend all my life trying to find someone who will understand, but because of my life, I wind up having to give them a tutorial about how I act and why. I know it sounds pompous and stupid, but what else have I to do?

I find no one else like me in my life. I have nothing in common with anyone...I feel trapped in a world that judges me at every turn and yet never bothers to try to help or understand.

My whole life has been spend trying to figure other people out. I've always felt left out. I'm a watcher because that's all I really know how to be - all I really can be. People say I'm stuck up and a snob. I don't like to think that I am.

I love people. I'd love to be with them, but my life is so different, my motivations so strange. I feel I have to compromise some of myself to get along with anyone else...So I am left with two options - to live always compromising parts of myself, never getting to be myself, or to live my life lonely and alone.

Even though I know have gifts, there are times when I'd do anything to give up those gifts just so can be a normal person...People tell me that they can't talk to me because it takes too much energy, but does that mean that I will be forced to spend the rest of my life being a hermit? Will there ever be anyone who is willing to work to be with me? Will anyone climb the mountain?"

Back when I wrote this, I had no idea why I was different. I just knew that I was. I thought I was alone in feeling this way. In the last five years, I've come to learn that I'm not. Through the miracle of the internet, I've learned that there are many more of you out there.

So, if any one of you is feeling alone tonight, remember that perception isn't always reality. When I thought I was alone in the world, I wasn't. When I thought that no one else would ever understand or feel the way I did, I was wrong. It was just a question of finding the other people like me.

The idealized depictions of Christmas aren't the reality for most, if not all, so don't think that you're the odd ball because your holiday is different. We all have our disappointments in life -but we can find our way. We can find our own crowd, and our own way of celebrating - that's fine.

And even if you have to celebrate alone -that's OK. Love yourself to know that a celebration alone can be just as valuable as one with others - it's all in how you handle it. If living with Asperger's teaches us anything, it teaches us how to live with ourselves. For some of us, our only friends are ourselves. You can focus on being alone, or you can make the most of what you do have - you.

You can go out and watch people. You can stay home and watch Star Trek. You can write, or listen to music that makes you happy. Or you can find a small, trusted group - that understand you and overlook your eccentricities.

In any event, the holidays don't have to be sad. Don't be lonely. There are others of us out there. There are others who understand. If you're lonely, my thoughts and prayers are with you, as are the thoughts and prayers of many others out there. You are not alone.

I'm praying that each and every one of you have a wonderful holiday season, alone or together.

Merry Christmas, Happy New Year, and Happy Holidays!

Coping: The Need for Routine

I'm nearsighted, and slightly hard of hearing. Once in school, I remember removing my glasses while doing silent work at my desk. My teacher called me forward to talk to her, and I realized my comprehension was not was it should be. I hadn't realized until that point how much I had come unconciously rely on reading lips to compensate for my hearing.

From time to time, I get the same type of wake up call in my daily life, when I realize what other coping mechanisms I've developed without even realizing it. One that's come to my attention recently is my usage of routines to keep control over my life.

I read again and again in parent accounts about children with autism being distressed by disruptions in routine. In Hollywood, this was also depicted in the movie Rainman ( I get my boxer shorts at K-Mart in Cincinnati...Gotta get my boxer shorts at K-Mart.). I didn't really realize how true this was of me until recently. While I am not so rigidly controlled by my routines (I can get my underwear from anywhere - and even can get different brands/styles!!!), from time to time I am startled by how disruptions in my routine throw me off balance, as "semi-normal" as I like to think myself at times.

I find that I rely on routines to get through specific tasks. I do the same tasks the same way each time. When I vary, it screws me up.

As a child, my parents drummed into me that you lock your car door when you leave a car. It became such an ingrained habit, that I found I could not break myself of it. When I first began to drive, it caused me major headaches. I was not used to being the person with the keys, so until I was able to modify my routine to include removing the keys from the ignition, and putting them in my purse, I repeatedly locked my keys in the car. To the point that I felt stupid. I'd be out at a gas station, store, or whatever, and someone would have to come out and rescue me with a spare key.

Fortunately, I've long since tackled that issue, but there are still times when I frighten myself. I've learned that I cannot leave the kitchen if anything is cooking - no matter how short a time I think it will be. My tunnel vision will soon move to whatever is of most interest wherever that may be, then I turn around and find that I've completely forgotten the water boiling, or the food cooking on the stove. More than once I've let water boil out on the stove, thanks to the grace of God, I have not set anything on fire, or severely damaged anything.

Members of my family that are not like me don't quite understand why I am like this. Why I must remain glued to a specific task until completion...They ask, can't you do other things while you're doing laundry? Why do you always turn on the turn signal when you turn (even when you're in a deserted parking lot or on private property with no one around)? Why do you automatically lock the door, when you may only be going into the yard? It's like Rainman's "the light says 'Don't Walk.'" I just have to follow that routine - sometimes to the point that it doesn't make sense, because it's not easy for me to make exceptions. If I start making exceptions, I'm afraid I'll forget to do it when it's most important. It makes me feel moronic, but it's a reality of how I live.

Get me sleepy, it's even worse. When I am not fully awake, I rely on routines even more. Problem is that at this point they are on autopilot. The smallest disruption can throw me off.

The funny thing is how this can drive even further coping behaviors. Some people suggests some people with Aspergers border on OCD, or have co-morbid OCD. For me, in reality, I think it's coping mechanisms that ape OCD.

For example, I'm tired, not quite awake. I go through my "Leaving the House" routine on autopilot. I forget my "snapshot" or "checking" step (when I stop and take a mental "snapshot" to verify that the door is closed before putting the car in gear, and on the way down the road). I get halfway down the road, and I don't have my mental snapshot of the closed door to ensure me that my routine was completed successfully. Almost always it has, but there is always the chance that something threw me off, and I skipped a step. So now I have a niggling doubt - did I close the door?

So now, what do I do? Do I trust my routine (as I can't trust my memory)? Or do I turn around and "check"? Then come the other steps that I find the doubts about...did I shut off the water, or unplug the heating pad or shutoff the appliances....? How often do I check?

There have been times when this "checking" compulsion became troublesome. When each day when I left the house, some niggling doubt would raise its head, requiring me to go back and "check." And each day, I was leaving for work more than once, because in order to feel secure, I had to go back and "check" to make sure that my routine had been succesful. It began to curtail my life.

So, lately, I've disciplined myself to say no to the impulse to check. Sometimes it's painful - but I make sure that I slow down to be more mindful to the process and I trust that.

Fortunately, I'm able to limit this to my home for the most part. At work, I have developed tools to help keep me on track. As I have an office job, I don't have to wander far. I make extensive use of Outlook Calendar and all its reminder tools, and it does well for me. I find myself wishing for something similar in my home life. If I had a "brain aid" such as this, that I could wear on me as I walk around the house, that I could set to remind myself of things, I think it would be a great help.

On all these technology shows, I see the features showing the future networked house, with to do lists and other tools worked into the house itself, with screens everywhere to interact. Oooh, don't I dream of that house. Until then, I find myself trolling "assistive technology" sites to see what options are available that are better than what I already have. I can just hear it now - Majel Barret's voice - "Laundry complete - transfer to dryer now!"