Asperger's Diary

A Challenge To Autism Researchers

Lynne Soraya — Thu, 19 Nov 2009 05:09:07 +0000

Autism research. Having a vested interest, I watch it closely. But looking at the latest batch of "newsworthy" releases -- I find myself frustrated. Is this the best we can do?

The latest to get the lion's share of attention, is the Kennedy Krieger Institute study documented in the latest issue of Neurology, which tells us that there is a correlation between autism spectrum disorders and difficulties with handwriting. Why is this news? Parents of autistic kids, and adults with ASD have been saying this for years.

If you search in spectrum related bulletin boards, you'll find adults with autism and Asperger's have themselves dissected this ad nauseum. They've taken polls on it ("How Legible is Your Handwriting?"). They've discussed how their handwriting is different than their peers ("Odd Handwriting"), even going so far as to upload videos of themselves writing, as examples. They've solicited groups of other spectrum peers to upload pictures of their handwriting for comparison "Post Your Handwriting!" And this is on just one bulletin board.

Yet, this story has exploded - page after page, article after article - NPR, Modern Medicine, WebMD, Science Daily, ABC News, Washington Post, Medical News Today, the Atlanta Journal Constitution.

In a comment on another autism blog, a commenter responded to the study:

"All I can say is Duh! I'm not sure what the purpose of this study was. I guess I have to read the entire study but it seemed a waste of time. Its like doing a study about 'is the grass green.' Hasn't it been known for decades that autistic children have problems with handwriting?"

The NPR article quotes a parent of one of the participants, saying:

"The finding offers scientific evidence of something parents have been saying for years, says Barbara Wagner, whose son Austin, 14, was one of the children on the autism spectrum who took part in the study."

Even while reporting it, they say it's old news. I'm afraid I just don't get it. What's the big deal?

Reading this, you may wonder at my frustrations. Why do I make such a big deal of this? So, the autism community has said this before...so what? Now you have "proof." Aren't you better off than before?

I'll tell you why it's a big deal to me. It means that the media and researchers aren't listening. Not to autistics, not to parents. I don't need a researcher to tell me that my handwriting is atrocious...that's obvious, and absolutely no shock.

There is a world of autistic people out there eager to share their experiences with the world. To understand why they have synesthesia, or prosopagnosia. Why they they have trouble with speech. Why they struggle to make friends and have jobs. Why life sometimes feels so hard.

There is a world of parents out there, eager to share their experiences - and desperate to understand their children. Why won't he look at me? Why doesn't he sleep through the night? Why can't he speak to me? Why does he seem to be in pain so much of the time? How can I help him?

The information is out there...but it seems they are just not listening. While the media and experts are patting themselves on the back over "discovering" a new bit of information about autism, there are kids out there struggling. There are adults like me, frustrated. Wanting to learn about why we are the way we are - but left out in the cold.

Autism should not be a researcher's "pet project." Autistic people should not be used as a pawn to prove someone's theory about how "normal people" see and interpret the world. And, it might be worthwhile, every now and again, to ask a person on the spectrum before pronouncing opinions, or posting speculations about us -- how we think, or why we do things. Some of us do speak...and we can tell you.

We might just have a perspective that you might not have thought of...and we are the ones who have to live with the results if you're wrong. If you want to know what research matters, ask a person with autism. Ask a parent. Ask a professional that works with us every day. Ask someone who knows. We'll tell you.

And whatever priorities we might have -- I think you'll find a common theme:

Tell us something we don't know.

Please.

What Is The Value Of A Life?

Lynne Soraya — Fri, 06 Nov 2009 04:16:53 +0000

I was once told that I shouldn't have kids, because the child could be born with Asperger's, like me. I answered with a question - "Would you have given the same advice to my parents?"

"Well," came the answer, "look at all the difficulties you've had, and the pain you've had to endure...surely you wouldn't wish that on a child."

Well, it's true that living my life with Asperger's has often been difficult. Yes, I have dealt with my fair share of pain and rejection... In a perfect world I wouldn't want a child to go through the same issues. But I also had to wonder...is life just about avoiding pain? Or is there something more?

Looking back on my life, I find that the most painful experiences taught me the most valuable lessons. But, you never learn what those lessons will be until you're on the other side. How can you judge the quality of a person's life and experiences, before they have had them?

I was reminded of this conversation recently, when I saw the announcement that a new book was coming out about the life of one of my personal heroes - Mattie Stepanek. Born with a life-threatening neuromuscular disease, Mattie knew what it was like to live with pain, both physical and emotional.

As he told Larry King, back in 2002:

"The doctors didn't think I would live one day, but I did. So they said, OK, he's not going to last six months. I did. Then they said, OK, we're drawing the line at 2-years-old, three years, or he's going to die by then, and you might as well let him go now. And my mom said, no. I'm going to train this spirit. So I lived to be two, and they said, OK, five, five, five is it. Then I lived to be five, and then they said 10. And here I am, an 11-year- old. So now they're saying teens or some time as a young adult, but I plan to be 101."

Although he didn't make it to that milestone, he packed a lot of life into his "almost fourteen" years. To cope with the loss of his older brother (and two other siblings he never knew) to the same disease that later took his life, he began writing poetry at age three. He went on to author seven books, became the National Goodwill Ambassador for the Muscular Dystrophy Association, appeared on Oprah, Larry King Live, and Good Morning America, as an inspirational speaker and advocate for peace.

As his mother quoted in the introduction to his 2005 book "Reflections of a Peacemaker," his sixth compilation of poetry, Mattie said, "...across the years, I have written about senses, about seasons, about nature, about journeys, about pain, about laughter, about hope, and a lot about peace. I write about anything that touches the essence of my existence. What I witness, what I feel, what I think, what I fear, what I treasure. In fact, everything that write comes from some personal experience--the death of a sibling or a friend, a visit to or from Heaven, the excitement of the changing seasons, attitudes and choices that promote peace for individuals and the world...I write about life, which is our greatest gift."

Last year, writing about the death of Randy Pausch, I defined a true, real-life hero, as a regular person who, by example, makes you re-evaluate your own life, through their own actions and attitudes. Mattie was that for me. The day I first saw him speak (during one of his television appearances), I found myself absolutely in awe - his attitude, his wisdom...at such a young age. If he could live life with such hope, such idealism, such joy, while facing the challenges he faced, what excuses could I make for myself? I left the house that day feeling uplifted in a very powerful way.

Tom Sullivan, in the book "Seeing Lessons," described the experience of seeing Mattie speak on the Oprah show (where he was also a guest):

"...I wonder if I even breathed--I know I didn't move--because Mattie's story was so remarkable, emotional, and inspirational. I understand that my life was forever changed by the spirit of this most remarkable 12-year-old soul."

When I was a little girl, my mother used to tell me a fanciful little story. As the story went, when she was pregnant with me, she asked a friend to take a picture of her profile, to show her big belly. When the picture was developed, there, captured on the film, in a perfect band around her belly, was a beautiful pink light. She showed it to a wise friend, who said, "You know what this means? This means that this child will be very special, with a very special purpose."

I now look at this story as one of those little family myths -- like the Easter bunny, the tooth fairy, and statements like, "When I was your age I walked ten miles to school, in the snow, barefoot, uphill both ways." But in childhood, this story was a touchstone.

You see, in her own unique way, my mother was teaching me about my own value. Lacking the typical instincts that others use to verify the veracity of others' views -- life, for me, was a confusing cacophony of conflicting ideas and opinions. I was not the type of kid to accept "Just take my word for it." To be so would make me vulnerable to every new opinion that came my way, worthy or not.

With her little story - my mother reframed an abstract concept, my worth, into something concrete that I could understand. She made my worth real...and gave me a way to represent it, in my own language -- pictures. Further, she was telling me that it was measurable...something that could be "seen."

I would go to it again and again. When others teased me, made me feel a freak...I'd imagine the picture. When I was sad, discouraged, tired, or just wanted to give up, I'd pull it up in my mind's eye, and remind myself, "You're special. You're unique. There's something you're here to do, that no-one else can do." It kept me going, gave me reason for hope.

Mattie Stepanek had a name for this concept - a person's special purpose or reason for being. He called it a person's "heartsong." He followed his heartsong with more fervor, passion and joy than many experience in a lifetime. Mattie said, "People tell me I inspire them. And that inspires me. It's a beautiful circle, and we all go around together, with and for each other. What a gift."

His hero, Former President Jimmy Carter called him "...the most remarkable person I have ever known," and wrote, "With the purity of heart that only a child can possess, and the indomitable spirit of one who has survived more physical suffering than most adults will ever know, Mattie convinced me that his quest [for peace] was not inconceivable."

For Mattie, the barometer of his life was not the pain he felt, but what he learned and the contributions he made in the lives of others. To me, that is the true value of a life. It's not what you are born with that matters, it's what you choose to do with it.

Perspectives: Asperger's and Empathy

Lynne Soraya — Fri, 23 Oct 2009 05:19:29 +0000

Some time ago, in my post Empathy, Mindblindness and Theory of Mind, I wrote about Asperger's and empathy. In a new feature, here on the Asperger's Diary blog, I thought I'd share another Aspergian perspective on this hot button topic.

This video was created by Bev at Asperger Square 8. Being a visual thinker myself, I really enjoy how she is able to convey her point simply, clearly and visually - with only a few words (and a little whimsy thrown in). What do you think about what she has to say?

From time to time I'll be featuring videos, profiles and stories highlighting different Perspectives on Asperger's and autism. Have one you want to share? E-mail me.

Friends and Allies

Lynne Soraya — Wed, 21 Oct 2009 04:33:42 +0000

In the second or third grade, I remember being asked about friends. "Oh, I have lots of friends," I said, reciting a list that included all my teachers, day care providers, school janitors, and most of the kids I knew. Everyone was nice...at least I thought. I didn't understand the true nature of friendship - until I was bullied.

When I was in fourth grade, we moved to a new town. Having always felt different, I was always drawn to other outsiders. Which is why, on my first day of school, I was drawn to a girl who stood alone, off to the side, watching everything with big, soft, brown eyes. I liked her immediately.

But, I was soon to find out, others did not. One day, while I was playing alone on the merry go round, one of the popular girls sought me out. She wanted to be my friend, she said. But the conditions for her friendship were clear...drop my friend. I refused. Adamantly. That's when the bullying got serious.

But the bullies were in for a surprise...I didn't react the way they expected. The previous year, my PE teacher had decided to teach us the basics of Aikido, one of his passions. Deeply affected by Aikido's philosophy of non-violent self-defense, bolstered by my newly acquired church teachings to "turn the other cheek," I had become militantly pacifistic. So, I refused to fight. If they persisted, I'd use the Aikido techniques I'd learned to defend myself. But only that.

They didn’t know what to make of it. Who was this weird kid who refused to fight, ignored their taunting, and acted as if they didn’t exist? It was a challenge, so they upped the ante - and I couldn't keep up.

At first, my father was proud of my non-violent ways…but as the abuse began to escalate, his feelings began to change. One night, I came home crying over the latest assault. A taller kid had snuck up behind me and grabbed me by the hair, dragging me around the playground by it as the other kids laughed at my flailing attempts to free myself.

Suddenly, my father burst out, "Dammit! Why won't you defend yourself!!" I was crushed...I didn't know that his outburst was a product of his own feelings of helplessness and frustration at his inability to protect me – and anger at an administration that responded to his complaints with devastating indifference.

One day not long after, I was making my way to a spot my friend had saved for me at the front of the line for the lunchroom. Unexpectedly, I felt a pull on my hair. Sensitive from months of sneak attacks, I spun on a dime, fist flying - my father's words ringing in my ears. I popped the kid - right in the eye. Standing there, my hand fisted at my side, I felt strong. Enough!

Then the backlash came. In a matter of seconds, the line folded back in on itself, and I was surrounded by a mob of angry, shouting kids. As they took turns savagely kicking me, I looked around for a hole in the ranks, trying to escape.

Off to the side, I saw him...the kid who’d pulled my hair – his eye red, tears running down his face. A popular kid, whom I didn't know well – he had never hurt me before. He wasn't shouting and he made no move to join the melee. Something wasn’t right...but I wasn't sure what.

A few minutes later, I was surprised when the boy, eye still teary and beginning to purple, came to apologize: "I'm sorry I pulled your hair," he said. "I just wanted to get your attention." I was a little confused...but he continued, "They were going to come after you, if you took that place in line. I just thought if I could get your attention, I could warn you."

Standing there looking at him, I thought of his earlier behavior – and my heart sank. I realized that, in striking out at him, I had not only hurt an ally, but brought upon myself exactly what he had feared for me.

Feeling terrible, I gave him my heartfelt apology...telling him, in explanation, "I thought you were one of the others, coming to hurt me." He looked down, sighed, and said, "I know, I know."

Some time later, a group of bullies caught me alone on the playground. Grabbing me, they dragged me into a wooded area behind the school, threw me down on the ground against a tree, and began hitting. Curling up against the blows, unable to escape, I felt woozy, and my vision got dimmer and dimmer. Was I about to black out?

Suddenly, I saw a ray of light, as I felt a weight lifted off of me. Through the gap, I saw a boy from my reading class whom I barely knew. He charged into the fray, pulling the rest of the kids off of me. Then he held out his hand, and pulled me to safety.

During recess, one of the last weeks of school, I was walking along the playground, when I saw another kid acting strangely, dancing around behind a tiny little tree that didn’t have the first chance of concealing him. Curious, I went to see what was going on.

He leaped out, and punched me. Wham! Wham! Wham! Three times in quick succession. Looking up, I saw my friend nearby…she’d seen it. I reported the incident to the Playground Monitor...but the situation didn’t go as I expected.

I found myself in the Principal’s office, sitting across from my friend. The boy had accused me of hitting him first – and the Principal wanted to get to the bottom of it. Shaking inside, I told my story. Then the Principal turned to my friend, and asked her: “Did you see her hit him?” My friend said, "Yes."

My jaw dropped.

Then the Principal turned to me, and asked, “Are you sure you didn’t hit him, and you just forgot about it?” I opened my mouth to speak, but was utterly incapable of it. I knew he didn’t believe me – and he wouldn’t. Why would my friend, who had been my constant companion, lie?

I thought back on the year - of all the times that I had been beaten, kicked, knocked down, called names, etc. In all that time, I had never been the aggressor - and I had tried so hard to "take the high road." Did it mean nothing? Had they not seen?

Overwhelmed with the futility of it, I could only stare up at the ceiling, desperately trying to suppress the tears that I so hated to shed in public.

Soon after, I left that school...with a new understanding:

Not everyone is nice. People who say they want to "be friends," may not actually be friendly. And those that are your friends, may let you down. But the most remarkable friends and allies are those that you never know about...until everything falls apart.

Lessons from Gandhi

Lynne Soraya — Sat, 03 Oct 2009 04:44:30 +0000

As PT blogger Michael J. Formica noted, today is the 140th anniversary of the birth of Mohandas K. Gandhi. In honor of the event, I thought I'd share a post I wrote a few years ago about how his life inspired me to think differently about some of my challenges, such as my troubles with speech.

From the time I was young, one of my biggest sources of shame has been my difficulty at times with verbal communications. While at some times, words come easily (and sometimes ceaselessly, as others have told me), other times my brain simply stops. I know what I want to say, but am unable to get my mouth to form the words. At these times, I either freeze or find myself repeating the same word over and over and over again, as if to gain the momentum I need to get over the wall that had has suddenly appeared between my brain and my mouth.

In fact, one of my earliest memories is of my mother making me jump out of my skin by grabbing my arms, looking me in the face and saying, "Spit it out!" I was completely humiliated by this, but I simply couldn't help it. I just couldn't make my mouth work. And stress seemed to make it worse. Today, I've gotten very good at gestures. Frequently at work someone runs by quick and says something to me that requires a quick response. Knowing I won't be able to form the answer in time, I find myself using the "thumbs up" sign a lot. Or nodding. It works. I don't think even my family knows how frequently this is used because of necessity, rather than choice.

Contributing to all this are my difficulties with the rules of social discourse/conversation. Even when my impediment is not acting up, I often find myself lagging behind others in conversations. By the time I formulate what I want to say, the conversation moves on to something else.

As I get older, I find I have more fun that gets tossed into the mix. Now, sometimes, I find that I can get the words out, but the words I think I'm saying and words that come out are completely different. Sometimes it's as glaring as saying "basket" for "steak." Other times it's more subtle. I don't always know that I've done it until someone else tells me. I've ordered at restaurants, had the wrong thing come back, and when I question the order, I am told that that is what I did order. The other day, I told someone that I had had "Life Magazine" for breakfast!

Anyway, when I was younger, I was deeply embarrassed by all of this, by how much I struggled to get the right words out. I used to tell myself I was stupid. But nowadays, I realize it's just part of being me, and I just have to learn to go with it, laugh with it.

For many years, I have been a great admirer of Gandhi - in fact, since I saw Richard Attenborough's award winning movie about his life. Watching the story of how he single mindedly pursued truth was inspiring to me. A single man, brings down such a mighty empire, simply by refusing to give in to what he knows is unjust, no matter what it costs him (and it cost him a lot).

I found a lot of commonality in his story. His razor sharp focus on what interested him. His absolute resoluteness in his beliefs. His constant seeking of truth.

As it is with all of my pet interests, seeing this movie drove me to read everything I could find on the Mahatma. What I was quite shocked upon finding, was that the Mahatma had some very similar problems as I had. In his autobiography, he wrote, "...when I paid a social call, the presence of half a dozen or more people would strike me dumb...It was impossible for me to speak impromptu. I hesitated whenever I had to face strange audiences and avoided making a speech whenever I could. Even today I do not think I could or would even be inclined to keep a meeting of friends engaged in idle talk."

I found this extremely comforting. If a man, who has become a world icon, who spoke in front of millions, who accomplished what Gandhi did, struggled the same as me - what did that say about what I could do?

Further on in the autobiography he wrote, "I must say that, beyond occasionally exposing me to laughter, my constitutional shyness has been no disadvantage whatsoever. In fact I can see that, on the contrary, it has been all to my advantage. My hesitancy in speech, which was once an annoyance, is now a pleasure. Its greatest benefit has been that it has taught me the economy of words...a thoughtless word hardly ever escapes my tongue or pen. I do not recollect ever having had to regret anything in my speech or writing. I have thus been spared many a mishap and waste of time...A man of few words will rarely be thoughtless in his speech; he will measure every word."

Whenever I catch myself beating myself up over my awkwardness of speech, having a "Damn, I should have said...." moment, I think of this. I remember that I don't have to take back words I don't say. Although it's uncomfortable, frustrating, and makes me feel different than the rest of the world, I take comfort. If Gandhi felt that hesitancy of speech and constitutional shyness was "no disadvantage whatsoever" in his life, how can it possibly be in mine? If he could accomplish what he did while having these issues, what excuse do I have to let it hold me back?

Bullying, Hypocrisy, and Church: An Asperger Perspective on Religion

Lynne Soraya — Wed, 30 Sep 2009 04:07:10 +0000

In his most recent post, John Elder Robison asks why many people on the spectrum reject religion. Personally, my relationship with religion has always been highly complex. As I wrote previously, when I was young, my challenges drove me to try to understand things, especially things relating to people. So, I set out to study the human condition. What makes human beings tick? What were the rules for living successfully as a human being? Where do you go to get those answers?

I turned to psychology and religion. The way I saw it, psychology was a means of understanding the individual and the proper means of relating to that person. How to interpret body language. The complex motivations of the psyche. Why people sometimes act so illogically.

On the other hand, if I wanted to understand the "rules," of how we are supposed to live life - it seemed like that was religion's stock in trade. So, I began a study of religion as well.

If psychology was the user's manual for the car, then religion was the rules of the road. At 12, I vowed to read the Bible from beginning to end. And I did. By high school, I had read just about anything on religion that I could come up with. When people asked me what my hobbies were, I'd tell them foreign languages, and comparative religion. Why comparative religion?

Well, Aspergians are often called "seekers of truth," and I considered myself as such. But, how do you know the truth? Everyone else seems to believe that they know what the "truth" is, but yet most times their views don't agree with each other. How do you know which one is the truth? How can two opposing viewpoints both be right?

So, I began to look at it empirically. If I looked at the whole world of data out there, read all the various scriptures, what patterns began to show up? What were the basic "truths" that seemed to be shared across the board, or at least by the majority of believers?

The "truths" written in each of these scriptures had been followed by countless people over thousands of years - given that I had to believe that what was written in them must have some wisdom, some value. If not, why the longevity?

But, even as I searched through the writings of the major religions, I found myself deeply disappointed in the actual people who practiced many of these religions. The guiding principles found in their holy books, often seemed so lacking in their actual lives.

Take, as a case in point, my first experiences with church. In fourth grade, my father first began taking me to church. Not a churchgoer himself, my grandmother had leaned upon him heavily to begin taking me. Why, I never could quite tell - she wouldn't darken the door of a church to save her life. On the other hand, she was prone to pull scripture quotations out of her pocket at any time to settle an argument, something I never could quite understand.

New to the area, I had become a target for the most vicious bullying I had ever experienced. In my old circles, teasing was simply not allowed. In my new environment, I was not only viciously teased, but physically attacked as well. Night after night, I'd return home after school and cry myself to sleep, unable to understand what I had done to deserve such brutal treatment.

When my father came to tell me that we were going to start going to church, I felt lighter, hopeful. Memories of afternoons, side by side with my father, reading the Sermon on the Mount, came to mind. Surely a group of people who believed such things as "Blessed are the meek, for they shall inherit the earth," and "Love your enemies, do good to those who hate you, bless those that curse you," would be a very kind, caring group. Maybe this would be my sanctuary from the brutality I endured every day.

Imagine my shock and dismay when I discovered that two of my worst tormentors were children of deacons and elders of the church. At first I thought, "Well, maybe they don't know what their children are doing. If they did, they'd surely teach them better." That belief lasted until the end of the first service. As we all gathered for the post service reception, they started on me again. In front of their parents. This wasn't going to be a haven after all.

One of them, no doubt encouraged by her mother, invited me to her birthday sleepover party. There, she put lipstick in my bed, ruining my brand new pajamas, a gift from my Grandmother. Later, she and her friends pressured me into drinking orange juice - which they later gleefully intimated was spiked with pee.

When I had to leave early the next morning for church, (Because, of course, once a rule had been established in my house, it must not vary. Birthday parties did not mean a vacation from routine.), they made it nearly impossible for me to leave, by stealing my shoes and playing "keep away" with them in the front yard. Knowing, of course, that were I to chase after them, I'd get in trouble for ruining my tights. All this under the supervision of their "pious" parents.

To this day, I have found very few "religious" people who have truly embodied the beliefs they espoused. And, I can honestly say, that many of the worst things that have ever been done to me or to people I cared about, have been done by people who professed to be "religious." Some in the name of religion. How can that be?

So why do I, as a person with Asperger Syndrome, have a problem with organized religion? It's best summed up by what one of my heroes, Mohandas K. "Mahatma" Gandhi said of his experiences with Christianity - "I like your Christ, I do not like your Christians. Your Christians are so unlike your Christ."

At The Wedding

Lynne Soraya — Tue, 22 Sep 2009 04:40:29 +0000

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?

Since the day when I was seven or eight years old, and my mother found me curled up on the bathroom counter, purloined makeup strewn around me, I always had an interest in beauty. But, I always felt I lacked something in the execution. Early experiences had taught me the first tenet of female beauty: It's a social process.

Not exactly my strength.

I'd watch the other girls in their social groups:

"It's called Sea Plasma!" one girl would reverently gasp, presenting the bottle with the flair of a TV spokesmodel, "It's made with seaweed! Feel how soft it makes your hair!" With that, she'd hold out a lock of her hair to felt and admired. After the requisite Oohs and Aahs, the bottle would be offered up, and passed around to a select few.

Such exchanges baffled me. How did one become part of that inner circle? I didn't know. So I did my best. On my good days, I felt like I was succeeding. On my bad days, I'd wonder if I was getting it right.

When I succeeded, I succeeded because I kept it simple. Dab on a little cover-up for the dark circles, put on a little mascara and lipstick, maybe a little eye shadow, and I was done. Those things were easy.

Foundation, on the other hand, was hard. I studied up, but somehow just couldn’t master it. I tried different application methods: a sponge, my fingers, etc., but more often than not I was disappointed in the results.

More formal work events were terrible. Feeling the pressure to look perfect, I couldn’t forgo the foundation. I'd begin hours before the event, ending in a total makeup meltdown. "There's a line!" I'd screech to my husband, running late and desperate to get it right. The harder I tried to fix it, the worse it would get. Soon, I had uneven blotches of foundation all over my face.

Crying, my eyes puffy and red, I'd eventually give up, scrub my face clean, and start all over again. By the time I got out the door, I was hopelessly late, hysterical and my nerves would be shot. Aahh, to be able to do my makeup just once and get it right.

Then, a few years ago, I began seeing these late-night infomercials for the latest fad in makeup. It looked to me no different than finishing powder - but the end results looked pretty convincing. No lines, no infuriating "blending" - just "swirl, tap and buff." Could this possibly work? Could this be the solution for my many foundation flops?

While Christmas shopping at the local mall, I breezed into a little store, and let them do a demo on me. Pleased with what I saw, I came out armed with a list of supplies - which, of course, went promptly to my husband. He bought every last piece. Christmas Day became a makeup marathon...and I was hooked. I could do this! I could put on foundation without freaking!

A few years later, my in-laws came to visit. We'd promised to take them to a broadway-style show, but as luck would have it, we were running ridiculously late. Speeding back home in the taxi, my Mother-in-Law was steadily getting more and more upset. "We're not going to make it!" she said, "We haven't eaten, we still need to get dressed...and I have to do my makeup! We're not going to make it!"

"Don't worry," I said, "We'll make it. Listen, why don't I do your makeup? You and I have the same color complexion...let me use my makeup. It'll go much faster - and you'll love it. You'll see!"

In my enthusiasm, I didn't stop to think about the fact that I’d done someone else’s makeup only once – at 12. And that hadn't gone well. I didn't think about all my makeup meltdowns over the years…or the possible disaster that could result should I screw this up.

Why? I don't know.

Imagine my relief, when, as we walked to the train station, I caught my Mother-In-Law admiring her makeup in the window of a building. She liked it! I had done it!

A year later, my husband and I arrived at his sister's wedding. Seeking out his parents, we got the run-down on the schedule for the day. As she laid out all her clothes and supplies, my Mother-In-Law pulled out the largest makeup case I'd ever seen. She turned to me. "Do you think that this will be enough?" she asked.

"I'm sure it will be." I replied, smiling, not sure why she was asking me. I soon learned why when she said: "She wants you to do her makeup."

“She” meaning the bride. For a moment, I froze… Doing my Mother-In-Law's makeup for a night out was one thing...but doing wedding makeup? If I got it wrong, well, I could only imagine the vibes at holiday gatherings!

I felt a knot form in my stomach, but as I panicked, I knew I couldn't say no. This was the one request the bride had made of me. How could I turn her down?

So, I gulped really hard, took some deep breaths and gave myself a good talking to. Then I went for it.

As I sat there, eye-to-eye with the bride, I was overwhelmed with a strange mix of emotions: fear, anxiety, pride, peace, wonder, happiness. I looked around at the roomful of women, and thought of all the other "girly girls" that made up the wedding party. Of all of them, she had chosen me. I never dreamed that I would be here.

To them, this was commonplace. To me, it was anything but. "They'll never know what this feels like for me." I thought to myself, "They'd probably never believe it." As the immense thankfulness washed over me, I found myself fighting tears.

When they handed the bride the mirror, I held my breath. She looked into it, and gave a happy smile. Something bloomed in my chest – a feeling I still can’t describe – and I smiled, too.

Maybe I wasn't such an outsider after all...

Blinded By The Light: Learning The Social Side of Language

Lynne Soraya — Thu, 27 Aug 2009 03:29:02 +0000

It was my Sixth Grade camping trip. As my classmates and I made our way back to our cabins for the night, I was wrapping up the story of a near-collision in the dark woods (with a boy!):

"...And then he said, 'Sh*t, you scared the f*ck out of me!,'" I told the group.

Suddenly, the girl in front of me stopped short, disorienting me. When I recovered, I found myself staring into the beams of several flashlights, which spotlighted my face. Murmurs emanated from the darkness, until one girl's voice drowned them all out: "WHAT did you say!!!?"

At first, I was confused. I squinted into the glare, feeling as if I was in an interrogation room. My classmates had used similar language before...so what was the big deal? Why were they questioning me?

Well, the fact was that while my classmates were prone to trying adult language on for size, I wasn't... In all the time they'd known me, they'd never heard me swear. Not once. Their reaction wasn't censure. It was astonishment.

I later learned that they had made a lot assumptions about me based on how I talked. Everything from my beliefs to my preferences in music. They thought I was a snob, a goody-two-shoes, and any number of other things that were best kept at a distance.

But no-one had ever bothered to ask about it. If they had asked, "How come you never swear?," I probably would've answered, "I don't know, I just don't." Lacking another explanation, they just assumed that I was a stick-in-the-mud. Morality really didn't have anything do to with it - but they didn't know that.

They didn't know that they had a level of social flexibility that I didn't have. They could swear and tell dirty jokes with their peers, yet charm adults just like Eddie Haskell. I was not capable of this...or I hadn't learned the rules for it. I was the same with everyone - from the janitor, to my classmates, to the teacher. Behaving differently with different people didn't compute with me. It felt wrong, somehow. Like I wasn't being true to myself. I was just "me."

Unfortunately, that meant a difficult choice. If I was too formal with a peer, they might brand me as "weird" - but if I was too familiar with an adult, they could punish me. So, I was cautious, keeping to language that was "safe." Not too racy, not too familiar. Formal was best, if I didn't want to offend...

Having built a wide vocabulary through voracious reading, I loved to use it, which only made me seem weirder. Talking was my primary way of trying to connect with people...but not knowing "the rules" about how to have a quality conversation, I made up for it with quantity. It was the old "throw spaghetti at the wall and see what sticks" strategy.

Because misunderstandings were so common, I became very precise in conversation. If I meant "mauve," I said "mauve," not the more simple "pink." That wasn't specific enough. As tools of precision - expletives just didn't work. So I didn't use them. What did it really mean to say, "You scared the f*ck out of me?" How did it convey value any better than, "Wow, you REALLY scared me...?" I just didn't get it.

But, precision didn't necessarily fill the bill if it made me look pretentious. Language that is correct in form doesn't necessarily serve its purpose if it alienates the listener - which is what I later came to learn that my language habits did. It alienated them, because it was so different than theirs - and it made them believe that I was much more different than I truly was.

One afternoon, in history class, another girl struck up a conversation with me. What was I doing for the weekend? I responded that I was going to a rock concert. "You like rock and roll!!?," she said..."From how you talked, I just assumed you only liked classical music, opera and ballet and stuff..." Until that conversation she had had no idea that we liked the same music. Because of my odd verbal manners, she thought I couldn't possibly like the things she liked.

It would take a few years, and a few more experiences like this, for me to learn to consider my audience. I had to at least try to think like others: What language would best communicate what I was trying to say, in a way that both made sense and put my listener at ease? What would be meaningful to the person I was talking to?

There are many days when I wonder what would have happened had I not had these experiences. Would I have realized how my language, and manner of relating, was shaping how I was perceived? Would I have realized how different that perception was from who I truly was? If I hadn't realized these things, would I have fewer friends today? Yes, I think so.

Today, if I veer off into language la-la land, I have people around me who gently remind me to be less "professory." Just like my classmates did so long ago, they hold up a mirror that allows me to see the difference between what I am, and what I am portraying to the outside world. What I can't, or forget to see, on my own.

Because I don't think that I'm better than anyone else. And I never cared if people swore around me. But, my actions gave the impression of something else. That's pure communication breakdown.

It was quite painful being called out so publicly that night in the woods, but in the end, the alternative would have been much more painful. I'd much rather be aware of my mistakes - because it's only through being aware of your mistakes that you gain the ultimate power - the power to change.

The Cheese Incident

Lynne Soraya — Tue, 18 Aug 2009 04:43:44 +0000

One pleasant afternoon, my husband and were invited to a casual get-together at a colleague's house. Because these types of things are generally not easy for me, I was nervous and a bit on edge, but hopeful… until our hosts led us outside.

The wind immediately assaulted me, creating a near-constant whoosh in my ears. As I settled into the seat next to my husband, my eyes fell upon the plate in the middle of the patio table. Uh, oh...

On that plate rested a block of cheese, crackers, and fish, as a garnish. But that wasn't what had me so concerned.

Now, perhaps I am one of the un-initiated (or I've been living under a rock), but in my circles, the implement of choice for cheese and crackers was always a knife. What lay neatly across the block of cheese bore no resemblance to any knife I had ever seen.

It looked like a pie server, with one edge dull, the other slightly serrated, and a hole in the middle, which reminded me of a bottle opener. I pondered the etiquette for using such a tool... It didn't look like a very efficient knife. As such, it would be clumsy and unwieldy...so, how would one use it?

The others launched into conversation, but the combination of my hearing loss and the wind in my ears ensured that I only heard 75% of what was being said. The noise didn't seem to bother the others, but that's nothing new. Background noise and I have never gotten along.

With nothing to do other than attempt to nod and smile at the right times, I watched my hosts like a hawk, hoping for a clue as to how to proceed in serving myself. "Try it with the fish..." the husband said, gesturing to the plate, "It's a local delicacy..."

He handed me a cracker with fish...and I watched him as he served up the next one. He pressed the flat side of the server into the top of the cheese, drawing it backward. A curl of cheese appeared through the hole.

"Oh, it's like a carpenter's plane!" I thought (fittingly, as it turned out, I later learned that this tool was called a cheese plane).

Did I dare try it?

Now, tasks requiring fine motor control have always been difficult for me. Much as I have always longed for "girly" handwriting, it has always eluded me. Writing legibly, for me, is a very laborious process. I love the look of embroidery, but could never manage it. I knit, but have been working on the same afghan for 10 years…I spend almost as much time ripping out my mistakes as I do actually adding to the length of the blanket.

Knowing all this, I was concerned about my ability to learn this new task on the fly… could I manage it? Partaking in the hors d'oeuvres seemed an important part of participating in the social discourse and "having a good time." On top of that, I was quite hungry. So, what to do?

Should I take the risk and give it a shot? Or should I refrain, and risk offending our hosts?

The break came when my husband decided to cut himself a piece…giving me the opportunity to say, "Honey, while you're cutting yourself a piece, could you cut one for me, too?" I figured that this would not be seen as strange, simply a courtesy between spouses…but I realized I couldn't spend the whole evening doing this. Being an adult it would be generally assumed that I was capable of self-service. If not, what would that mean?

While the others were deeply engaged in their own conversation, I decided to take the plunge. I reached for the "plane" and commenced cutting. Immediately, I found myself in the midst of a struggle.

When I pulled back, the plate came with. When I steadied the plate, the cheese began to come off the plate. Having seen some of the others softly steady the cheese with the tips of their fingers, I attempted to do the same, knowing, of course, that this should be kept to a minimum since it's rude to touch others' food.

The tool was so deeply embedded in the cheese that "softly steadying" the cheese wasn't working. Before I realized it, I had almost my whole hand on the cheese trying to keep it in place while I cut. I was struggling, but committed now…having made a hack job of the cheese, I couldn't just leave the piece half-cut.

Then I had an appalling thought…Was the hand that was holding the cheese the same hand that I'd pet their cat with?

The husband was looking at me now, and I wondered what he was thinking… Had he made the cat connection? Was he wondering what was wrong with me? Thinking I was rude? Or was I just over-reacting?

I didn't want to be rude. These people's opinion was important to me…and I desperately hoped that this incident would not color their feelings toward me.

I finally finished cutting the slice, placed it on the cracker and ate it. Then, deciding I had had enough, I sat back, knowing that soon we would retire to the dining room to have dinner.

The remainder of the evening was pleasant and enjoyable. Though we all seemed to have a nice time, when I think of that night, I can't help but focus on the "Cheese Incident," because within it lies a microcosm of my life with Asperger's.

I will not let Asperger's get the better of me. If I'm hungry, I'm going to go for the cheese. If I want a new professional challenge, I'll apply for a new job. If I want a relationship, I'll go after the relationship.

It may be stressful and difficult, but, in the end, all I can do is my best. If my best effort doesn't come out quite right, at least I tried. It's better than not trying at all.

Trying is the difference between having some cheese, and no cheese.

Through The Lens of Asperger Syndrome

Lynne Soraya — Thu, 30 Jul 2009 02:04:20 +0000

A few years ago, after I learned of my stepfather's death, I popped out to Google - hoping, at minimum, for a glance his obituary. Clicking on one of the links, I was surprised to find myself reading a deeply empathetic condolence letter, written to a woman grieving the sudden death of her spouse. A letter written by my stepfather. A letter which, according to common stereotypes of people with Asperger's, he should not have been capable of writing. Reading what he had written crystallized a feeling that had been forming in me for some time prior to his death...I had been very, very wrong about him.

When I told my mother (from whom he'd been divorced) about the letter, she reacted with annoyance. "Well," she said, "If he could be so caring to a stranger, why couldn't he be that way with us, his family?" Saddened by her anger, I also couldn't disagree with her assessment. He'd been a difficult man to understand.

Our relationship had been rocky. At best, I tolerated him. At worst, I hated him. But he had always been there. Tall and imposing, with a big grizzly beard and a deep voice, at times he scared me to death. But he was capable of unusual kindness.

A solitary child, raised by a single mother, we often dismissed his quirks as characteristics of being spoiled. But, there was much we didn't know. He didn't speak much of his childhood.

As a young adult - he wanted nothing more than to be a fighter pilot, but he couldn't fit in the cockpit. So, he wound up fixing TVs and appliances. When the government and military began experimenting with these newfangled creations, called "computers," he found his home among the wires, kerosene and vacuum tubes.

When computers went mainstream, he made the move to the corporate world, where his skillset was rare and in high demand. There, he met my mother. He impressed her with a couple of Armani suits, a brilliant mind, and a soft heart for animals. Soon enough, they were building a life together.

He loved crosswords, cryptics and cross-stitch. He was skeptical of God, the dangers of second hand smoke, and of global warming. His spare time was filled with computers, Faulkner, Steinbeck and Tolkien. The soundtrack of Saturday afternoons was filled with show tunes, Wagnerian opera and Willie Nelson.

We thought he was lazy, a malingerer. He claimed that physical activities were "hard" for him...at the time we didn't believe it... But yet, examining his gait gave every indication that he had troubles with coordination. He walked as if the floor was covered with a powerful adhesive. The effort to pull his feet free would drive him into a jerky and involuntary march, knees high. His arms remained limp by his sides - a pose that gained him the nickname "gorilla arms," a nickname some meant fondly, although I don't know that he took it so. Running, for him, was so rare that even his best friend witnessed it only once... and we never did.

We thought he was insensitive and rude. He bellowed and yelled. Yet, when I made my first forays into cooking - it was he, and only he, who would eat the results. When I was admitted into the hospital, and my mother wanted to stay by my side, it was he who bought me pretty pajamas and a robe to wear so that I wouldn't feel so bad lying there in an ugly hospital gown. Despite the fact that he detested any kind of retail store. He was unfailingly generous with his intellect and time...I never needed to ask twice for help with homework. And he applied his intellect to the creation open-source software long after retirement, until he died.

I remember how my mother would nag him about putting in his hearing aids. He claimed that they were intolerable...they hissed and amplified background noise. Back then, we thought he was just being difficult. Now I know that he had hearing sensitivities and auditory processing problems. It was easier for him not to hear anything, than to hear everything.

Looking back, it's hard to see how we missed it. Noise was always one of his sensitivities....rock & roll would never be played in his vicinity. Playing kids - no way. When my mother became deathly ill, I knew immediately from the second he answered the phone. Not from what he said, or the tone of voice - but because he answered the phone at all. It was an activity he avoided like the plague.

Toward the end of his life, he became increasingly more and more isolated. Gone were the dinner parties with Mom and their intellectual friends. Gone were field days out in the park with the family, and fourth of July parades. It was him, his programming, his forums and his computers. He had shut down.

Worn out from a world which he never fit into, he left his room rarely. The last time I saw him, all I remember is how happy he was to have company. To see me. It was then I began to realize that beneath all of his faults, his crustiness, his asocial tendencies, he was a good person. And he truly did want people in his life - but in that he often failed. So, he withdrew into what he knew. Mechanics. Computers. Logic. Intellect.

But that wasn't all there was to him. He had a big heart as well. One that most didn't see. I didn't see it, except through the lens of Asperger Syndrome.

In the end, he died alone, feeling a failure as a father, and probably, as a husband. When I think about that, I am filled with regret. Regret that we weren't more compassionate with him in life. Regret that we didn't somehow put the pieces together. Regret that we didn't fight harder to pull him out into the world. He was a man who had much to give the world, but his skills held him back. He didn't know how to relate.

When I think about what services are out there for those with Asperger Syndrome, I think of him. I think of how he struggled. I think of how misunderstood he was. I think of how we misjudged him, and how a little understanding, both on his part and ours, may have helped him to have a more fulfilling life.