The life and times of a writer, national speaker, autism consultant, avid home cook, and woman on the autism spectrum. Come inside my world and see what life is like from behind my eyes.
Wednesday, March 14, 2012
That Could've Been Your Face
"There but for the grace of god."
I always feel like an old person saying that. It never sounds quite right coming from me, mostly because I don't think I've really lived long enough to have any in-depth hindsight about things.
But sometimes the universe can go and change things on you, just like that.
An article came to my attention the other day, from a newspaper in the "Twin Cities" (Minneapolis/St. Paul) region of Minnesota. It detailed the story of an 18-year-old girl with Asperger's syndrome who had run away from her home in Iowa after befriending a young man on a social network. Once in Minnesota, this young man raped the girl in a hotel room, and then, under the threat of death, he and his girlfriend forced her to have sex with thirty other men who'd been sought via an online advertisement asking them to come there to pay to have sex with her.
Immediately, I was transported in my mind back to my parents' computer room--to the warm glow of the screen in front of me, the click-clack of the keys under my fingers, and the grainy texture of the thick, rubber mat under my chair's rolling wheels. This was the place where I spent so many of my waking hours as a teenager. Unable to connect with my peers at school or make friends, I sequestered myself there, seeking refuge in the only place where I could at last be accepted--the Internet.
Most of the people I spoke to were my age--teenage girls who were fans of the Backstreet Boys, as I was at 15 years old. I volunteered my personal information to these girls readily; without hesitation, without any understanding of the dangers that were lurking quite close to the surface. And when someone claiming to be A.J. McLean of the Backstreet Boys began to infiltrate our little group, I did not doubt for one second that this person was indeed my heartthrob of heartthrobs.
My parents fought constantly to get me off of the computer, and I ardently refused, despondent at the thought of being away from this social network that I had built--my new friends from all parts of the country, fellow BSB fans, and--of course--my beloved "A.J."
The typed, un-hand signed letter that he sent me--saying how much he cared about me, how wonderful he thought I was, and imploring my parents to let me talk to him--now sits crumpled in a drawer somewhere in my old bedroom. The ring he sent me, a fake diamond "engagement" ring, is long gone and forgotten.
That could have been me.
The words choked inside my throat like too-spicy soup, the realization ever-greater as I read the rest of the article. The developmental level of a 13-year-old. An entirely too apt description of myself at 18; the picture of stubbornness, desperately wanting to be seen as an adult, yet too immature, too naïve to understand the ways of the world.
Innocent. That's what I used to be. That's what she used to be, until someone decided to take it away. Not only sexual innocence, but emotional--that certain optimism with which we view the world when we're young, and the way we believe in the inherent goodness of people. That is now lost for this girl--shattered in the most violent and horrifying of ways.
"[...]During a police interrogation, [the girlfriend] admitted to investigators that she knew the girl could be "easily taken advantage of," but she said the girl "was not supposed to actually have sex with anyone, just con them out of their money." [The girlfriend] told police the teen just "never caught on" to the scheme and actually had sex with the men."
The ball of disgust that had curled in my stomach as I read this article crescendoed into an enormous, pulsing anger when I got to the above paragraph. In situations such as these, there is every advantage to be taken by the NT predators against this girl who is on the spectrum, and I fully believe that both the girlfriend and the young man were damn well aware of this.
As for "never catching on" to the scheme, this has more or less been the theme of my life, and that of many other individuals on the autism spectrum. Just as I sat happily typing away to someone who eagerly fed on my loneliness, unaware of his "scheme," I suspect this girl also had no idea of the trap being set for her.
It is clear that the perpetrator here is blaming the victim, and we are right to find this appalling. Yet how often are folks on the spectrum accused of "not catching on" to something in everyday situations, and blamed for our "inability" to understand when it all could have been avoided if anyone had bothered to tell us that "something" was going on in the first place? In the case of the Twin Cities story, however, I truly doubt either the young man or the girlfriend ever had any intention of doing so.
I can only hope that this girl is able to find some peace in the wake of her ordeal, and that her rapist and his accomplice are punished to the fullest extent of the law for their crimes. I can only thank every higher power above that my parents had more sense than I did when I was a teenager, and were probably the only reason I didn't run away and end up in the newspapers myself.
And I can only listen to the careful breaths in my chest, see in my mind's eye that 15-year-old girl sitting at that computer, and feel the pounding echo of my heart as I fight now to make sure that what could have happened to me--what did happen to her--never has a chance of happening to any woman on the autism spectrum again.
Sunday, January 22, 2012
I still remember the first time I realized that a guy thought I was cute.
It happened back when I was in college. My self-esteem was incredibly low then...or, more nonexistent, because it had been so slowly chipped away throughout middle and high school. And when you’re told you are ugly every day, or made to feel it, for years on end, you just start believing it. I had no reason to think differently.
So it wasn’t only the idea that someone found me attractive that blew my mind, but that I could be something other than ugly. I had believed it was just a simple, permanent fact that that’s what I was, and there was no changing it. And then someone was defying that, going against everything I’d heard for so long, and showing me another option.
The problem there, though, was that the belief that I was not ugly didn’t exist because I believed it, but because someone else did. So once again, my self image and view of myself came from other people, albeit in a different way. It’s only really been in about the last five years that I have grown confident about my appearance, on my own, without validation or approval from others.
The thing that I realized is that whether you hate your body or love your body, if either one of those things is fueled by what other people are telling you, then it’s not coming from you—it’s coming from them, and they still have the power. I didn’t want that. I wanted to be the one with that power, the one in control of my feelings about myself, because I spent so much of my life powerless and feeling like I had control over nothing.
So it feels good to be able to look into the mirror these days and think, “You know what? I am pretty darn cute.” Cause now, even if no one else thinks so, I don’t need the reminders. Because I am the reminder.
Saturday, January 21, 2012
Cinnamon Stick.
I remember when my hair was down to my waist. It was when I smelled cinnamon in my grandmother’s house, the air rife with it at Christmas with gingerbread men baking in the oven.
The pajamas are scratchy, all heavy and cuffed, with a long zipper running up the front. The bottoms of the feet are padded, whispering under me as I walk from room to room.
The tree is blue. Ribbons, ornaments, white lights strung elegantly from top to bottom. The angel is on top. Everything is breathing, and the plastic on the table squeaks under my fingers. Plates of red, yellow, olive green pass through my mind, eyes flying open as the grainy crunch of warm bread fills my mouth.
I never ate much. It was always about the presents, the tearing, the ripping, the grabbing, the heart leaped up hard in the back of your throat, stomach gurgling with anticipation. Yet whatever lived inside those ornately wrapped packages is a mystery to me. I just see her face, pink lipsticked lips, short brown hair. And her smile. A grandmother’s protecting smile.
The pieces lie fragmented—sharp shards tossed askew on the open plain of my memory. I keep trying to put them back together. To reassemble that place, that last refuge of a lonely child. Where I was safe.
Where I wasn’t where I am now, which is the last place safe can ever be.
Sometimes, It Helps When I Write
Milk feeds me, with a plate of warmed cookies for eating. My worn knuckles bend and crack slightly as I grip the glass, trying to hold on. That’s all I’ve been doing—trying to hold on. Where they can’t get me. Here, I thought I was safe. Here, away from blues and purples and those uncomfortable chairs that make your back ache.
I’m getting this out. Out, out damned spot and stripe and zig-zag, zig-zags on zebras who live behind their own set of bars and hooves clawing into the dirt. Their skin must be so soft, covered in coarse hairs. So are we, but we shave ours off. That’s why we’re naked.
Blood is the color of my fragrant sun, shining heavy and heated above burning the skin of my face, even in the coldest days. I’m not waiting to fall apart, not holding my breath, cheeks puffing bigger and bigger, not for them, not ever. I breathe. I live. For me.
For a future that doesn’t have them written in it.
That’s where I am going.
Tuesday, December 27, 2011
Dear Victoria's Secret:
The above shirt is being sold on your website, as part of your PINK® collection. Had it not been for your Semi-Annual Sale catalog that arrived at my home recently, I would never have known it existed. As I flipped through the pages, somewhat bored and certainly unimpressed by most of your selection, I stopped dead in my tracks when I got to the page with this item on it.
It is a safe assumption that the products in your PINK® collection are aimed at college-aged young women (18 to 23 years old, let’s say). College costs money—in terms of tuition, board, academic supplies—and for many people, that cost is prohibitively high. Scholarships and loans don’t come close to making a dent, and it leaves many young people who want to attend college financially unable to do so.
What this means is that individuals who are enrolled in college—an overwhelming percentage of whom are women these days, outnumbering men, in fact—should count their blessings and not party more, because that would be a profound waste of the money that either they or their parents have invested in their education.
Therefore, to sell a product encouraging young women to “party more” and “study less” is downright irresponsible, and retreads the stereotype of women not needing to be “smart”—that once again, intellect and job readiness come second to being pretty and having fun. The clear message here is, “Why worry about your future, about becoming financially solvent and able to support yourself when you can just meet a boy at one of those parties, and he’ll take care of you?”
While Victoria’s Secret has never been a bastion of women’s rights or using imagery in its ads and commercials that don’t set unrealistic standards for women, it is both disappointing and appalling that you would stoop so low as to perpetuate this outdated, misogynistic mindset.
In short: Your secret is out, Victoria. And it ain’t pretty.
Thursday, November 24, 2011
The Ghosts of Thanksgiving Past
My own history with Thanksgiving is not nearly as sensational, but when this day rolls around each year, I always take a moment to pause and reflect.
When I was a kid, I used to get sick on Thanksgiving, every single year. I can’t remember exactly when it started, but I’ll guess and say I had to be about 12 years old. My great-aunt Florence had Thanksgiving at her house in those days, and for almost the entire duration, I would be sequestered in the guest room bed, wageel (metal bowl) beside me, trying to shut out the fragrant aromas wafting from the kitchen as I vomited into the bowl, over and over.
Being the gourmand that I am now, it seems almost cruel that I was shut out of these dinners, and indeed, I have no memory of ever eating anything at Thanksgiving for many years, simply because I could not keep anything down. The repetition of this event was bizarre, and baffled both me and my parents, as there seemed to be no reasonable explanation for the cause of it.
…And then it stopped. The Thanksgiving after I graduated high school, I didn’t get sick. At all. Nor have I gotten sick on Thanksgiving since.
For the longest time, I’ve wondered why or how this could have happened. All those years of getting sick like clockwork, and suddenly it ended, with no warning. Well, realization does not always dawn; sometimes, it thwacks, and that’s how it was when I figured out the reason why.
I think that my social skills problems and the teasing/tormenting that I endured in junior high/high school were so bad that, by the time Thanksgiving rolled around each year, my body responded to it by just completely shutting down. Then I went off to college, and the teasing went away…and the sickness went along with it.
So, with all of that behind me, I was finally able to build a new image of Thanksgiving, which included enjoying the fabulous feast that, well, is pretty much the sole purpose of the holiday. But the shape of Thanksgiving was radically altered yet again, when my grandpa passed away on Thanksgiving Day in 2003.
It was my junior year of college. My grandpa had been sick for some time, and my dad and his siblings had put him in an assisted living facility. He was a diabetic, and he was slowly starting to lose his vision, and even as I grieved his loss, I knew that would have been an intolerable state for him to be in.
I remember my great-aunt Lollie (Grandpa’s sister-in-law) walking into the kitchen in her white Florida sweatshirt, her voice breaking into tears, and my Aunt Nancy right behind her, also crying. I’d never seen my aunt cry before, and it took everything in me not to fall apart on the spot when she said that, when she’d seen him, my Grandpa had looked just like he was taking a nap.
The house I was in at the time was my dad’s cousin’s here in New Jersey, and that’s where my parents and I have gone for most every subsequent Thanksgiving. The memory replays itself whenever I find myself sitting at the counter in that kitchen, and as a result, Thanksgiving Day itself will always be tinged with a certain sadness. Eight years later, and I still miss my Grandpa so much.
What does Thanksgiving mean now? I can’t say for sure. It is ever-changing, evolving, as is my place among my family and in the world. I’ve told my parents that I would like to have Thanksgiving at our house one year, because they have always gone to New Jersey, time and again. One tradition that I do love is that, in addition to turkey, we always have Italian and Syrian food with the Thanksgiving spread, and I want to keep that alive.
My passion for cooking especially means that Thanksgiving is more or less my Oscar season, and I want a chance to step up to the plate. I hope that I will be able to do most, if not all of the cooking for it one year, which would be my way of showing the people I love how thankful I am for them. Yes, the days of being a passive, distant observer of Thanksgiving are long over; now, I am an active, eager, and willing participant.
Thursday, November 3, 2011
Why Kim Kardashian's Shamarriage Irks Me to No End
But not all of it.
I’m a single gal. I make no big secret of this, nor of the fact that I have not really been dating since getting big-time burned some five years ago. I have watched over the last few years as people I went to high school with, college friends, and family members have jumped on board the Nuptial Express, bound for their destination of wedded bliss.
It is not easy to be a part of an increasingly shrinking number of single folks among my peer group. However, as glum as it may make me on occasion feel, I try my best to push that aside and think of how wonderful it is that my friends and peers have found someone to spend the rest of their lives with. That they have made that special connection and are getting to have this special day on which to celebrate it.
So when I see/hear/read news about someone like Kim Kardashian blowing a mind-boggling $10 million on her wedding and then throwing in the towel not even three months later, it kind of makes me want to break things—preferably the most expensive things that were actually at the wedding, just because.
To be able not only to find the person you’re meant to be with, but to then marry them (if that is what you want to do, of course) is one of the rarest and most beautiful things in this world. Not everyone is fortunate enough to have this happen, and for many people--in particular, people on the autism spectrum, of which I am one--the dream of that one special day, with that one special person, will never amount to anything more than a dream.
I have thought about marriage, more so as I've made my way through my 20s. What it means to me, how I feel about it, and whether or not it is something that is within my reach. For most of my life, I've never thought that it was, in part because I have Asperger's, and in part because I'm me. The only thing I do know is that I don't know if I will ever get married, if only because I am not convinced I will ever find someone who would want to marry me.
It would mean more to me than words could describe if I ever did marry, and I would spend a hell of a lot more time on the marriage part--the part that is supposed to last forever--instead of the wedding, which only lasts until there are crumbs on the guests’ plates and the final notes of the last song are reduced to inaudible reverberations miles away.
I would also respect that there are so many others, including friends of mine, who deserve the happiness I have found but have not yet found it, or who are being deprived of their chance for other reasons. I know that in a marriage, the commitment is supposed to be between the two married people, but I would also be committed to everyone else that I love--committed to honoring all that they have done to help me get to that point, because their friendship and love has shaped me and helped make me who I am.
The icing on the not-quite-so-proverbial wedding cake is being able to afford said wedding. Being able to to truly spare no expense to make it the wedding of your dreams, without having to worry about the cost of this and that and lying awake at night with visions of gardenia bouquets and cummerbunds haunting your thoughts, sweating out of every pore in your body, terrified of exceeding your allotted budget. Peace of mind like that is something you cannot put a price on.
...Unless, of course, you’re Kim Kardashian.
The idea of wasting that money, or of using such an event solely as a ratings ploy, is disgusting beyond all comprehension. It makes what is supposed to be a cherished and significant life experience into something trivial and disposable. The irony lies in the fact that those pretty pennies, so lavishly spent, were spent on an event that has now been rendered worthless.
Deep down, I still believe that marriage is and can be more than what it seems to be now, if only we remember what it’s supposed to be about: Love. Two people in love, sharing that with each other and the world. Making it official. Tying the knot. Taking the plunge. It’s not something you do alone. It’s something you do together—not only on that day, but every day after.
Some news outlets are reporting that Kim and Kris are attempting to “work it out”—while others are painting their headlines with details of prenups and divorce proceedings. As much as whatever has happened between Ms. Kardashian and Mr. Humphries is between the two of them, it involves the rest of us (to an extent) as well, and our willingness to stand by and let this be something that we find entertaining, instead of something we find repulsive.
Maybe that’s all marriage is these days—something you just grab on-the-go, have fun with for a while, and then trash when it stops being fun—the life event equivalent of a drive-thru combo meal. Who knows? Maybe Kim and Kris thought they were signing a rental car agreement instead of a marriage license, and that’s why it only lasted 72 days. Either way, I just hope that their example will most certainly not be one that others will follow.
Monday, October 17, 2011
October Update: New Office, ANJ Conference, and More
Well, we got the keys at the beginning of September, and have spent the last month moving in and trying to get everything up and running. Now that we have a computer, bookcase, lamps, our respective degrees hanging on the wall, and all sorts of miscellaneous office equipment, I finally feel ready to be open for business. I hope to have an office-warming party soon, to formally welcome everyone and get the word out about the office.
Publication-wise, an article that I wrote--"I’m Gonna Let It Shine: How This Little Light Grew Into a Fiery Self-Advocate"--was just published in the Fall 2011 issue of AHA-NY's "On the Spectrum" newsletter. In addition, my mom wrote a short piece about my appearing at the United Nations earlier this year, and it was also published in this newsletter. Woo!
Last week, I went down to Atlantic City for Autism New Jersey's annual conference. I was asked a few months ago to speak on the self-advocate panel, along with two other adults on the spectrum, and I agreed to do so. For past conferences, I have tended to write notes on index cards to refer to, rather than fully writing out my speech. This time, however, I decided to go ahead and write it out.
Unfortunately, the panel was not videotaped, but I thought some folks might be interested to read my speech, so I'm posting it here on my blog. It's in .pdf format, so just click HERE to read it.
Also, I recently received a phone call, on my land line, with an inquiry about the book I am working on, The Naughty Autie. The caller said he belonged to an Asperger's Syndrome support group at which I had been a guest speaker, and he wanted to know if the book was available for purchase in bookstores.
I was so amazed to have gotten a call like this, and I feel as though it is a sign from the universe: a sign to get my damn book published already! So, I'm now preparing to send my book proposal to a publisher that has expressed interest in it previously. We'll see what happens!
Finally, if you're in the New York City area, I will be performing a monologue on the second day of ARS SPECTRA, a salute to artists on the autism spectrum. The event runs from Thursday, October 27th to Sunday, October 30th, and is being held at the Soho Gallery for Digital Art, 138 Sullivan Street, New York, NY. Click HERE to view the public event invite on Facebook, which has many more details and info for ordering tickets. Hope to see you there!
Sunday, September 11, 2011
Remembering September 11th
It was my freshman year of college. I was in my American Civilization class that morning, lamenting the ungodly early, ignorant to how deeply irony was working overtime that day.
My professor was Mr. Fedrick, a man who bore more than a passing resemblance to Bilbo Baggins. Another professor interrupted the lesson, and he stepped into the hall to speak with him. He came back a few moments later, blue eyes now glassy and downcast. He held his hands in front of him, clutching his glasses, and gravely informed us of what had happened.
Class was immediately dismissed. Dazed, frightened, and still not entirely sure of what was going on, I returned to my dorm. The elevators opened, and I saw that the floor was deserted. The silence was deafening, save for the televisions in the lounge. The doors were open wide, and several students were standing near the TVs, where the news blared loudly. We were all grief-stricken, more so as each new moment of horror unfolded in front of us.
Smoke, flame, ash. Bodies falling. Dust to dust.
My parents were on Long Island, not near the city. Still, I thought of them, and ran for the phone in my room. But I could not get through—the lines were jammed. Cut off from the people I loved—from safety, from reassurance, from calm—my chest clenched. Yet this was only the barest taste of the agony that others felt that day, and have felt every day since.
Ten years later, I still remember. Ten years later, and I will never forget.
R.I.P. to all of the victims of September 11th, in NYC, the Pentagon, Pennsylvania, and everywhere else; and to the firefighters, police, and emergency personnel who went into those towers and never came out. And a special nod to my uncle, who actually was employed in one of the towers, but wasn’t feeling well and didn’t go into work that day.
Tuesday, August 16, 2011
You Are So Beautiful to...Whom?
His name was Tommy. I remember his shaved head. Even when the campus was bustling—after classes let out, as everyone ran to find their bus home—I could spot him from afar.
He followed me around, calling me “Ugly Amy”—over and over, from the moment I set foot outside the building right up until I got on the bus…and sometimes he followed me onto there, too.
Being called ugly while standing outside the school was often the cap to a long day of being called ugly while standing inside it. When it started—back in the dark ages of junior high—it was exactly that: Outside of me. Other people called me ugly, and I believed it was in their control. They decide if I’m ugly; there’s nothing I can do about it; they’re neurotypical, I’m “wrong”; they know better. I don’t.
In high school, however, it changed. When someone would call me ugly, the word didn’t simply die in the air after it was said. The voices that spoke it were not without; now, they were within. That “little voice” inside. The one no one else can hear, talking at me, every second of every day. Telling me that I was ugly—telling me it was my fault.
It was in my control now. If only I could get breast implants. Wear makeup. Get rid of my “weird” toes. Not be too skinny to fit into the clothes that would make me beautiful. I am ugly.
After being told the same thing, day in and day out, I internalized it. I believed it. It shifted the burden from them onto me. Not only did I feel responsible for being “ugly,” I felt responsible for others’ reactions to my “ugliness.”
I felt guilty for looking the way I did—that, if I could somehow be not ugly, they would have something better to look at, and they wouldn’t be so mean to me. To my mind, it wasn’t their fault they were calling me ugly—they were just letting me know, because I didn’t know it myself.
By high school, I more than knew it. I knew, and could never forget.
I haven’t thought of myself as ugly for a long time, but I don’t see myself as beautiful, either. To this day, when someone compliments me, says that I am pretty, or cute, I don’t really take it in. “Ugly” is what I am more prepared for. I don’t feel it about myself, and I would roll my eyes at someone if they were to actually say it. But, somehow, it still feels closer to the truth than “pretty” does.
It saddens me that so many people have been called “ugly” in their lives, or feel that way about themselves now. We spend so much of our time trying to look like this “perfect” person, but that person doesn’t even exist. The standards that society has created are so impossible to achieve that even the people we think of as the “ideal”—tall, thin, blonde, whatever—see themselves as ugly.
For years, I desperately wanted to look like someone else. People sometimes do these “celebrity lookalike” things (“Oh, she looks like Gwyneth Paltrow!” He looks like Ben Affleck!”), and in high school, I would be devastated when I realized the only person that I looked like was me. I thought I couldn’t escape it.
Well, I was right. I can’t escape it. But the only person I want to look like now is me. Because that’s who I am meant to be.