Amy's Tiny Corner of Existence

I still remember the first time I realized that a guy thought I was cute.

2012-01-22T17:39:00.005-05:00

Then I thought maybe it was a joke, or he was on drugs.

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.

Cinnamon Stick.

2012-01-21T15:37:00.001-05:00

That sweet-smelling spice that stirs into the froth.

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

2012-01-21T15:35:00.001-05:00

It’s cold. My right hand more than my left is full of chill, and the soles of my feet. A fluffy robe is no match for winter’s aim. No matter how much I try to get warm, it stays the same. I’m running out of time, running out of air, of breath and wind and socks and pleated skirts that fall over your thighs just so.

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.

Dear Victoria's Secret:

2011-12-27T13:54:00.007-05:00

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.

The Ghosts of Thanksgiving Past

2011-11-24T22:19:00.000-05:00

They say that everyone has some kind of horror story related to Thanksgiving—missed flights, dysfunctional families, burned turkeys, and so many other flavors of chaos that rear their unwelcome head whenever this particular holiday comes around.

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.

Why Kim Kardashian's Shamarriage Irks Me to No End

2011-11-03T17:55:00.005-04:00

By now, most folks are aware of the big to-do surrounding Kim Kardashian’s 72-day marriage to (and impending divorce from) Kris Humphries. This has raised the ire of a great number of people, many of whom have been quick to point out what a slap in the face this charade is to couples who want to be together but are unable to, for various reasons. At least some of my own anger towards the situation stems from this, as well as the hypocrisy of the anti-gay crowd that claims gays are "ruining the sanctity of marriage."

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.

October Update: New Office, ANJ Conference, and More

2011-10-17T18:23:00.001-04:00

It's been just about a month since my last entry, and I have much to report! Having now completed my Masters degree in Applied Behavior Analysis, I am turning to the business of being employed. I needed an office space for A.S.C.O.T. Coaching, my Asperger's college coaching business, and was fortunate enough to be offered one a few months ago. My friend/colleague Nicole has her own business as well (for working with individuals with special needs), so we talked it over and decided to share this office and use it for each of our respective business needs.

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!

Remembering September 11th

2011-09-11T18:32:00.001-04:00

I swore I wouldn’t be one of the many people contributing to the flood of “9/11” posts today, but the memories that I have are too strong. I promise I will be brief.

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.

You Are So Beautiful to...Whom?

2011-08-16T16:56:00.007-04:00

Yesterday, I read something online that said, "Repost this if you honestly believe or have ever been told that you are ugly.” I was able to see how many reposts it had received, and the number was almost shocking-—well past a million. After reading it, I realized I had a lot to say on the subject, which is why I am writing this.
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.

Writing's On the Wall

2011-07-18T17:11:00.001-04:00

Whenever I hear a cadre of teenage girls cackling shrilly in the nearby vicinity, I still for a split second wonder if they are laughing at me.

I don’t really think they are. More than anything, it’s the volume of their voices that bothers me—because for some reason teenagers operate at a different decibel level than the rest of us.

But I still remember that awful feeling of walking around the corner in the halls in high school and seeing/hearing a group of kids start laughing as soon as they saw me. How my face would burn red with embarrassment, and how frustrated and angry I would get with myself because I didn’t understand why they were laughing, or how could I get them to stop.

This happened in the produce section of the supermarket today, hearing that laughter. Luckily, that moment of wondering didn’t last too long, and was immediately beaten into submission by Logical Amy, who then stood up inside my head, fist raised and shaking in the air, grumbling, “Hey you kids, be quiet, I’m tryin’ to squeeze some eggplants here.”

And I was me again, and I was okay.

The Price of a 'Quality Education'

2011-07-15T19:20:00.002-04:00

When I was four years old, my parents and I moved out of the house we were living in, to another house one town over. It was just three blocks away, but this seemingly insignificant move had far-reaching implications: it put us in another school district, which was supposed to be a very good one. This isn’t so strange, though; plenty of parents have moved to different towns to ensure that their children can have a quality education.

But “quality” tends to take on another meaning entirely when you are someone on the autism spectrum.

As I type this, I am trying to write an article for AHA-NY’s “On the Spectrum” newsletter. I was asked to write about what positive interventions were done with me when I was in school, and how I learned over time to advocate for myself and become a self-advocate.

The problem here lies in the fact that there weren’t any positive interventions done with me. This was before early intervention, before token economies, inclusion classes, behavior analysis, all of it. I was diagnosed with Asperger’s Syndrome when I was 10 years old, in 1994—the same year that Asperger’s was added to the DSM-IV. There were no puzzle piece ribbons, magnets, t-shirts, bumper stickers. No celebrity endorsers, no Autism Awareness Month. Nothing.

The word “autism” or “Asperger’s Syndrome” was on no one’s lips, and I was only the second child to go through my school district who was identified as on the spectrum. Which meant that absolutely no one knew what to do with me, and all that was left was my own gumption, which somehow kept me from killing myself, even though it was all I wanted to do, every day, for eight long years.

I was asked to give this article a “positive slant,” which I am attempting to do, but I know I can’t sugar-coat the things I went through in elementary, middle, and high school. I can’t hide the fact that I truly believed that almost no one cared about my well-being, that everyone wanted to make me “someone else’s problem,” instead of getting to know me themselves. Most of all, I can’t hide that this school district gave my parents next to nothing to hope for, and, more or less, failed me.

In reality, it was the entire lack of positive interventions that made me want to be a self-advocate. Because somewhere along the line, I realized that nobody was going to stand up for me or speak for me, so I had to do it myself. Being a self-advocate came, at first, more out of obligation than actual desire. Now, it’s a necessity, and I am trying to impart these hard-learned lessons to parents, professionals, and others on the spectrum who have found themselves on the same road that I once traveled.

I became a self-advocate not because of what the faculty and administration did (or didn’t) do to help me when was in school, but in spite of it. Through opportunities that I never would have expected (such as appearing in the documentary Normal People Scare Me), incredible doors have opened, and my confidence in myself has grown as I’ve realized that my voice has the power to help others.

My hope is that individuals with Asperger’s Syndrome can learn to become self-advocates, can “pay it forward,” as it were, and act as a voice not only for themselves, but for those who don’t have one. The autism community is a chorus of voices, singing in unison; only by listening closely, however, can people begin to understand just how different each voice is.

The Discomforting Skin

2011-06-20T14:08:00.000-04:00

Fifteen years ago, walking around in my body was an exercise in torture.

I'm referring not only to the bullying to which I was subjected on a near-daily basis at school, or the tumultuous relationship I had with my parents at home, but to my actual physical self. This once 95-pound body that hardly seemed to exist, and over which I felt I had little to no control.

A mirror is one of the most dangerous weapons that you can give to a teenager. Every time I would come near one, it was as if someone was whispering, "I dare you, I dare you" in my ear. My breath caught in my throat, and for those few brief seconds before I would look, my heart would fill with hope that maybe, just maybe, I wouldn't hate what I saw this time.

But I always did.

Every time, it would leave me clawing at the surface of my skin, pushing against the edges of my psyche, desperate to break free. I felt trapped, imprisoned in a cell made of flesh and bone. Seeing my reflection--this grotesque image that I had absolutely no way of changing--made me furious and sickened, all at once. Being present and confident in myself was a far-off pipe dream; I was barely attached to my body, and could never hope to be aware of it.

For many individuals on the autism spectrum, there is a lack of awareness, in terms of knowing ourselves. Some of this stems from spending the first eighteen years of our lives being told who we are, how we learn, what accommodations we need. Someone else is the arbiter of our needs, and quite frequently, we never have the opportunity to discover what those are on our own.

This lack of awareness carries over to the physical. Many people on the spectrum are immersed in the pursuit of the intellectual, so our bodies simply become meaty display cases for our minds. But what happens when you don't "know" your own body? When you can't tell what it feels like when you're in pain? When your arms, legs, and other parts are just "there," but don't really mean anything to you?

For me, it meant having to ask my parents, "Do I have a fever?" or "What is this pain I'm feeling? I don't know where it's coming from" or "My [xyz body part] feels funny. What does that mean?" Relying on others to tell me about myself had become automatic, a reflex in response to what had been happening my whole life. I wasn't able to listen to my own body. I just didn't know how to do it.

As the years passed, I grew more and more comfortable in my own skin. I went to college, had a boyfriend for the first time, and in addition to this relationship, I also developed another one--with my body. Parts that had never meant anything before suddenly came alive, as if someone turned a switch and threw a brilliant spotlight on them. I began to develop, both mentally and physically, and slowly but surely, my perception of self started to shift.

I find myself now frequently standing naked in front of the mirror. Eyes which once went immediately to the places with which I was unhappy and that I deemed "flawed," now hold an even, level gaze. I don't look down or away--I look straight ahead, not seeing what I wish I could see, but instead seeing what is actually there. And liking it.

To do this takes time, and it takes being alone with yourself for a long time. I know almost right away now when I am not feeling well--the scratchiness in my throat, the tingling pain in my ear when I have an ear infection. All of my "dots"--beauty marks, moles--sprinkled across the landscape of my body. I know them. No longer am I relying on my parents or others for answers. I have looked and listened to all these inner parts of me, learned to understand what they are saying.

Now, nobody knows my body better than I do.

This is such an essential skill for individuals with Asperger's Syndrome and on the autism spectrum to have, and yet it seems to rarely be addressed. Perhaps some people think it is tied too closely to sexuality, but so what if it is? We are sexual beings, on the spectrum and neurotypical alike, and it's senseless to ignore this part of ourselves simply because it makes other people uncomfortable to talk about it.

Helping people on the spectrum learn about their bodies and how to take care of them--both inside and out--can mean the difference between someone who recognizes a physical symptom, can describe it, and is able to get appropriate intervention, versus someone who waits until they are asked if something is wrong, is unable to effectively describe it, and does not receive needed medical attention until it is too late.

Being aware of your body--not only what it does, but that it is yours, that you have autonomy over it and a responsibility to take care of it, is a big part of being a functioning adult in our society. It is one brick of many in the path that leads to having self-confidence, to individuals thriving and living independently--to looking in the mirror and seeing its reflection smile.

The Biggest Day of My Life (So Far)

2011-04-07T15:55:00.006-04:00

On Wednesday, April 6th, I had the distinct honor and privilege to sit on a panel at the United Nations in New York City. It was an event co-sponsored by Autism Speaks and the Permanent Mission of Bangladesh at the United Nations, dedicated to raising awareness of autism and addressing related issues in different areas.

My job was to be the "human" face on the subject, to remind the audience and the other panelists that, first and foremost, we are dealing with people here. Not statistics, not figures, but fellow human beings. The other panelists were Dr. Geri Dawson, Chief Science Officer of Autism Speakers; Prof. Saima Wazed Hossain, Chair of the National Advisory Committee on Autism in Bangladesh and daughter of the Prime Minister; and Dr. Shekhar Saxena, Director of the Mental Health division at the World Health Organization.

As I sat on a couch in the Bangladesh Mission before the event, I kept wondering how it was that I got there. A series of chance encounters, made connections, coincidences, taken opportunities, and plain old luck seemed to be at work, all in combination. My family, my friends, everyone who believed in me in my life, are all what I felt like propelled me to the place where I am now, the place where I would be invited to be a part of something like this.

I could say so much more on the subject, but I would very much like to show you all the video of the event, so that you can see for yourself what it was like. The entire event is in the video below, and my portion of the panel starts at the 1 hour, 8 minute mark. I hope you enjoy it!

Autism Speaks "Light It Up Blue" Blog Post

2011-03-29T22:13:00.002-04:00

I was recently asked to write a blog post for Autism Speaks' specially created "Light It Up Blue" blog dedicated to letters addressed to the President to get the White House to participate in this campaign on April 2nd, World Autism Awareness Day.

This post was originally published on the Light It Up Blue blog here.

~*~

"Dear Mr. President and First Lady Michelle Obama,

Every year, the same day comes. Crunch! go the crisp leaves under your feet, twirling around in the cool, late autumn breeze, before coming to land on the earth below. Children race from house to house, their sneaker-covered feet thumping across the pavement, waiting for the door to open, to see the face of whoever lives there, voices ringing out in a choir of “Trick or treat!” when the moment finally arrives.

I am, of course, talking about Halloween: the time of ghosts, goblins, bobbing apples, and mini-sized candies filling up plastic buckets across the nation. And with the spirit of frivolity and mischievous fun also comes words of caution, issued forth by parents far and wide. From elementary school onward, every kid knew the most important Halloween rule of all: Never go to a house that doesn’t have any lights on.

A light is a symbol of welcome. Come, the light says. This is a safe place. For centuries, a lantern hanging outside of a building meant hospitality, and a darkened establishment meant emptiness—a place to be avoided. Today, we still have lights on the front of our houses, and when we know company is coming, it is often custom to leave the light on.

For individuals with autism spectrum disorders, however, the houses we encounter—be they school, a disability service center, even the place we supposedly call home—are often dark. We have been outcast, shunned, bullied, pushed around by a system that itself sits in darkness. There is no welcome for us, Mr. President. Time and again, we look for the light on the front of the house, and it is nowhere to be found.

Too often, people on the autism spectrum spend their entire lives in these dark houses. We have met rejection even at the hands of our own families, whose inability to understand our diagnosis and who we are leads to prolonged emotional and social isolation—a painful reminder of how much we don’t fit in, even with those whose blood we share.

And yet, with our honesty, loyalty, and compassionate natures, the houses we build as adults stay lit. We grow up; we find our way in this world that is not built for people like us, persevering, and despite the pain we have felt and the heartaches we have suffered, we let others in, not wanting them to face the same dark houses in which we once lived.

It is for these reasons and so many others, Mr. President and First Lady Michelle, that I am asking you to light the White House blue on April 2nd this year, in honor of World Autism Awareness Day. Our voices have typically not been those that are heard in the arena of politics, but with a single action, this can change . By taking part in this campaign, you will bring hope and encouragement to countless individuals on the autism spectrum and their loved ones. Stand with the autism community, and let your commitment to our cause shine bright.

Let your house be one with the lights on."

- Amy Gravino
Self-Advocate, Writer, Asperger's Syndrome College Coach

An Exciting Announcement!

2011-03-21T19:40:00.006-04:00

Hello, folks!

I am thrilled and honored to announce that I have been asked to speak at an event on April 6th at the United Nations in NYC! It's co-sponsored by Autism Speaks and the Permanent Mission of Bangladesh at the UN. I will be on a panel with three other speakers: Dr. Geri Dawson, the Chief Science Officer of Autism Speaks; Dr. Shekhar Saxena, the director of the Mental Health division of the World Health Organization; and Prof. Saima Hossain, the Chair of the Autism Advisory Committee on Autism in Bangladesh who is also the daughter of the prime minister.

The event will be attended by the Secretary General (who is giving opening remarks), as well as UN dignitaries and representatives from UN organizations (such as the WHO). The topic I have been asked to discuss is my perspective as a self-advocate and how international collaboration can help to deliver answers for the autism community.

This event is FREE and open to the public, so if you are in the New York area, feel free to come! Click the photo below to view the "Save the Date" flyer with all of the pertinent details (flyer is in PDF format).

Also, be sure to watch for my next blog post, which will be my thoughts on the landmark episode of the TV show Parenthood, in which the parents of a character with Asperger's Syndrome tell the child about his diagnosis.

Hypocrisy Rising: Why Children With Autism Don't Matter to Alec Baldwin

2011-03-01T14:33:00.006-05:00

EDIT 3/2/11, 2:32 PM: To clarify, the purpose of the piece is actually not meant to have anything to do with Alec Baldwin, but to use the example as a lens through which to examine the systematic devaluing of people on the autism spectrum. That was truly my intention. I am aware that disability is a serious thing, as I do have Asperger's Syndrome and have struggled for most of my life just to survive, let alone thrive and experience happiness. I am not trying to make light of anything nor present this as a gossip column, as that is the last thing I would want to do. The first half of the piece is meant to draw people in and keep them reading to the second half, which is where my more salient points are. But, according to some, it seems I missed the mark here, and for that, I apologize.

In 1996, the world was a very different place. Mel Gibson--pre-Passion, pre-anti-Semitic, misogynistic drunken tirades--was still a bankable Hollywood movie star. Rene Russo had yet to disappear off the face of the planet, and it was at this time that these two starred together in a movie called Ransom.

The plot of Ransom is simple (spoilers ahead): The wealthy owner of an airline (Gibson) and his wife (Russo) have their son kidnapped from them and held for ransom by an extremely crooked cop (Gary Sinise). When things go awry with the attempted payoff, Gibson's character decides to turn the tables and offers the ransom money as a bounty on the kidnappers instead.

Recently, I managed to catch a glimpse of the film on TV, and after watching it, did what I often do after seeing a movie I haven't seen before: I went to IMDb (The Internet Movie Database) to read about it. One of my favorite sections to peruse is the Trivia page, so that's where I went, and it was there that I came across the following: "Ron Howard's first choice for the role of Jimmy Shaker was Alec Baldwin, who turned it down due to the sinister nature of the character as well as the film's theme of endangering a child."

On the surface, this seems totally innocuous. Good on Alec Baldwin, would be most people's reaction, for passing on a role that he didn't feel comfortable with, and for such a noble reason as the endangerment of a child. But just two years later, in 1998, Mr. Baldwin accepted a role in a movie called Mercury Rising, with Bruce Willis. The role Mr. Baldwin took on was that of the villain. In the movie, a child cracks a top secret government code, and the government decides to have him killed. Thus, the theme of the film Mercury Rising...is child endangerment.

Why the sudden turnaround? What possible difference could there be between the two movies as to warrant such a change of heart? Both involve violence, both put the welfare of a young child in danger. Both have villains who could be considered cold-blooded, two-faced, and very unpleasant. So where does the difference lie? Maybe the the devil wasn't in the plot, but in the details.

Maybe the difference was that the child in Ransom was a typically developing child, and the child in Mercury Rising...was a child with autism.

In Ransom, the villain has direct contact with the endangered child, and is actually the one who physically harms him at times, though this is never seen on-camera. In Mercury Rising (a very ironic title for a movie featuring a child with autism), the villain is the one pulling the strings, but not the one doing the leg work. Assassins trail the boy and seek to kill him, while the villain strolls about in his wine cellar while throwing soirées at his luxurious home.

Perhaps, then, it is much easier to accept the endangerment of a child when it is not going on right in front of you. When it is not your hands wielding the weapon that is meant to be used to exterminate the child's life. Or when the child is too "disabled" to know what is really going on. Why else would the endangerment of a neurotypical child disturb Mr. Baldwin, yet the endangerment of a child with autism leave him unfazed?

Of course, Alec Baldwin does not have the greatest track record with autism, either. In 2007, at the Golden Globes award show, Mr. Baldwin and several other stars of NBC television programs were seen wearing blue autism "puzzle piece" pins on their lapels.

Clockwise, from top: Alec Baldwin, Masi Oka, Steve Carell, and Tina Fey.

Mr. Baldwin took home an award that night, and spoke at a press conference afterward. Undoubtedly, the question he was most frequently asked was in regard to the puzzle piece pin. This was a great opportunity, both for Mr. Baldwin and the autism community, to really raise awareness, to make a bold statement about autism in front of an audience of millions. Instead, what Mr. Baldwin said was this:

"Uh, Bob Wright, uh, from NBC Universal, is a great supporter of, uh, autism research, and has, uh, works raising money for autism, and this is Bob's, uh, gave us this pin to wear. And as I was mentioning earlier, that when you work for NBC and if Bob Wright had asked us to wear a hubcap on our lapel, um...I'd be wearing a hubcap right now, because we are working for Bob right now."

(Full video here: http://www.youtube.com/watch?v=2tFrCdVMMY4M. The above part is at the beginning.)

In another interview, Mr. Baldwin actually stated that he "had no idea" what the pin stood for, and that his boss "made him wear it." Maybe his insensitivity to autism shouldn't come as a surprise, given that this is the same man who, in recent history, referred to his own daughter as a "thoughtless little pig." But his apathy and his ability to see the endangerment of a child with autism as different from that of a neurotypical child speaks to a greater issue, one that is endemic to society at large: the devaluing of the lives of people on the autism spectrum.

It starts out as something simple: Always being picked last for kickball. Sitting down to eat lunch and seeing everyone move to a different table. Slowly, these little incidents add up, until, without realizing it, your life doesn't belong to you anymore. One day, you wake up, and life has turned into The Price is Right. Everyone has a tag, and you look down at yours to find out what you're worth. The thickly drawn "0" with a dollar sign next to it is your answer.

I spent the first twenty years of my life believing that I was worth less. That I didn't matter as much, or even at all, because I was different, because I did not fit in. Because I have Asperger's Syndrome. I have seen others on the autism spectrum treated in similar ways. Their contributions in the workplace viewed as less. Their social standing viewed as less. Everything that makes up them as a person, as a whole, viewed as less.

One of the hardest moments in life is when the people who are meant to protect you fail in that capacity, for those same reasons. I remember the blind eyes that teachers turned towards the bullying and teasing that I experienced. Maybe they thought it would stop on its own. Maybe they thought it was just "kids being kids." Or maybe...I wasn't worth it. So many students in the halls; so many far savvier than I, far more able to "play the victim" and garner sympathy. Maybe I just didn't strike the right chord.

The weight of that dismissal carries on through the years. Even though now, as an adult, I do not believe I am worth less, I have seen how those who work closely with individuals on the autism spectrum speak of those whom they are treating. Not necessarily viewing them as less, but as different. These are not children; they are "children who have autism." Every achievement they have, every milestone they reach, will always be measured by that barometer. It'll never be, "Check out that kid, look what a great job he/she did!", but "Check out that kid, look what a great job he/she did, especially for a kid who has autism!"

Every person is a person who is able to achieve things based on their own ability, to the best of that ability. The moment we start looking at individuals on the spectrum as persons who are capable of real accomplishment--accomplishment without qualifiers, without comparing them to neurotypical individuals or even other individuals on the spectrum--is when the stigma of "different" will finally begin to fade.

By eliminating the emphasis that is placed on autism spectrum vs. neurotypical, high-functioning vs. low-functioning, the value of people on the autism spectrum will be fully realized. The notion that a person with autism is like a parcel one receives in the mail that comes damaged, whose value drops significantly because it is "defective", will be a thing of the past. And people on the spectrum, whose identities and sense of self have all but been held ransom by these barriers, will come to view themselves in a different light. A better light.

A light where disability doesn't mean less.

Thoughts on Love

2011-01-18T00:47:00.005-05:00

Some ramblings and random thoughts on the subject of love, which has been on my mind rather a lot lately. Please feel free to leave comments and feedback.

WARNING: May contain some adult content and language (one swear word). Watch at your own discretion.

An Ode to 2010

2011-01-02T16:16:00.002-05:00

It is now a new year. The old has passed beneath our feet, and as we embrace this new beginning, I thought I would take a look back at what has ended. The ups, the downs, the highs, and the lows--there were many that took place this past year, and I have encapsulated them all in this piece.

So, without further ado, this is Ode to 2010:

---

On a quiet, moon's sliver of a street
Did we and 2010 first meet
And if we'd known what was to come as we dined on chili and trifle
The calendar hanging we would have aimed, and shot it with a rifle.

Through the winter months' long chill
Different seats in different concert halls were filled
From Y to A in revered North
To gardens grey at thirteenth and fourth.

The final stage of study came
Demands three years of grad school could not tame
Not one, but two thesis defenses
Whose madness robbed me of my good senses.

Eyes gazed upon freckled shoulders, in weather good and bad
Fickle fortune intervened; an accident was had.
While mechanics murmured, poked and prodded under the hood
True blue friends comforted, kept company, and stood.

Longstanding friendships fell from sight
To keep them I fought, with all of my might
Twelve years cast off, with nary a word
Heartbreaking silence the only sound heard.

No relationship did find me hence
No talk of romance, nor white picket fence
Cupid debated, but when push came to shove
I remained alone, and watched others fall in love.

Positives were had, to be quite sure
Published writing, public speaking, new culinary dishes galore
And the greatest accomplishment: a new LLC
A business for coaching college students, just like me

In 2010, a great many things were lost
And compared to what was given, was it worth the cost?
I do not know, nor perhaps will I ever
How time can be so cruel, so kind, or so clever

I'm ready to say goodbye to this lopsided year
To abandon the grief, the doubt, and the fear
So, like the Jews, whose bread stays unleavened
I declare, "Shalom! Good riddance, 2010! And hello and welcome to 2011!"

On Grief and the Death of Elizabeth Edwards

2010-12-07T22:48:00.002-05:00

As I'm sure most folks have heard by now, Elizabeth Edwards--ex-wife of former presidential candidate John Edwards--has died, from terminal cancer. She had only just decided to stop receiving treatment--on the advice of her doctors, who informed her that the cancer had spread to her bones. Not a day later, she was gone.

I can only imagine the sadness her loved ones must be feeling during this time. Everything that she went through, from the cancer diagnosis to her husband's infidelity and fathering an illegitimate child, no doubt took a great toll on her. From every story I have read, it seems she carried herself with dignity, grace, and comportment, despite having to experience all of this under the intense scrutiny of the public eye.

And now, this terrible disease, which went into remission once before, returned to ravage her body further. If nothing else, I am sure her family feels a sense of relief that she has been released from her pain.

But this does not change the fact that she is gone, and that her passing comes at one of the most difficult times of the year: the holidays.

I have some experience in this area, as it were.

In 2001, my one grandpa died four days before Christmas. I was home from my freshman year of college on winter break. My grandma called to tell me, and I felt my heart sink to my knees and my hands grow cold around the receiver as I said goodbye to her. What I did next was one of the hardest things I've ever had to do. I was the only one home, and I called my mother at school, where she was teaching. The secretary in the main office answered and informed me that my mom was in class.

"It's an emergency," I said softly, and told her the news. She did not hesitate to page my mom after that. The air seemed to still when she came on the phone a few minutes later, and then I heard myself tell my mom that her father had died.

My other grandpa died on Thanksgiving in 2003. My parents and I were standing in my aunt's house when my father got a call on his cell phone. He was perfectly calm as he told us, and we left immediately, heading up to his cousin Karim's house, where his side of the family would be.

Nobody spoke as we waited for my great-aunt Lollie and my Aunt Nancy to get there. I remember them walking into the kitchen--my great-aunt in a white sweatshirt with the word "Florida" emblazoned on the front, her straw-like hair freshly dyed and hairsprayed to unprecedented stiffness on top of her head, and the long bags under her eyes, set with wrinkles and stained with dried tears.

She hardly said a word--unheard of, for her--and was followed in by my Aunt Nancy. Her voice was choked as she greeted each of us, the gold Syrian bracelets on her wrist jingling as her hands shook. "He looked like he was just taking a nap!" she sobbed. I cast my eyes to the ground, ignoring the now-fetid smell of the turkey still cooking in the oven.

Last year, my great-uncle Sammy died on Christmas Eve. And though the loss was not as powerful as the previous two, I saw my other cousins swept in a tide of their own sorrow, and I grieved with them for their "giddo" (Arabic word for "grandpa").

I remember the wake. The beautiful stained glass in St. Ann's, a Byzantine Catholic church, and the colorful icons painted across the domed ceiling. I felt the blue carpet beneath my feet, and the cold from the doors opening and closing.

And Kathy, sister of my dad's previously mentioned cousin, Karim. She had been taking care of my great-uncle (her father) for the previous several months. I could see relief in her face, mixed in with the overwhelming grief. I wanted to say something to her, offer a word of comfort, for what little it might have meant. So I took her hand and said:

"I'm sorry. I know right now you're feeling like Christmas will never be the same again. The truth is, it does change your holiday forever--at first, you mourn and grieve, as is natural. But as time goes on, you start to celebrate--to incorporate the things that person stood for into your celebration. Instead of dwelling on what their death took away from the holiday, you remember all that they gave to it, all of the good that came from their presence and how much it meant. How part of them is still there, even after death, and always will be, just as long as you remember."

As I stood in the post office today, attempting to stave off the stress of a long line and only one clerk behind the desk, I thought of this. Of Christmases gone by, Christmases spent with my grandparents. I can still smell my grandmother's cooking in the kitchen, still see their tree festooned with blue-and-yellow ribbons, white twinkling lights, and numerous ornaments.

Christmas is not the same now, not as it was then, nor will it ever be--but it's inside of me. I'll be damned if I can remember a single present I ever got from my grandparents, but that love is something I will never forget. It is my great hope that in time, Kathy and my cousins and the family of Elizabeth Edwards will find their grief lessened, and that good memories will take its place, trading the cold in for the warmth.

In the Event of An Emergency

2010-12-03T23:30:00.000-05:00

I recently became aware of a news story out of Towson University, in Maryland. A student there was interning (student teaching) at Thomas Johnson Elementary School in Baltimore City, and she reported witnessing teachers verbally and physically abusing children with autism. The principal of the school immediately attempted to discredit her claims by saying that this student has Asperger's Syndrome and was "mentally deficient and probably lying," and her advisors at Towson questioned her story. The final nail in the coffin was the Dean of Education telling her to stop talking about the incident altogether (Click here to read the full story).

As a student in a Masters degree program in Applied Behavior Analysis, one of my requirements in my first year was to do classroom "observations" at partner schools here in New Jersey.

It was a crisp Fall morning in 2007. I drove down the Garden State Parkway somewhat nervously, having just gotten my license the month before. After signing in at the main office, I made my way through the beige-painted hallway, the walls periodically dotted with the students' brightly-colored artwork.

I sat in a blue chair, the hard plastic pressed against my thighs as I surveyed the self-contained classroom before me. Small wooden cubbies containing coats, knapsacks, and carefully packed lunch boxes lined the wall, and various toys and other objects lay scattered across the carpeted floor. Several pieces of chalk sat idly in a tray beneath the blackboard, and I resisted the urge to pick one up and smell it.

The children made noise, as children so often do, sometimes so shrill and loud that I had to hold my ears. I've never felt particularly at ease around children, but knowing that they were on the spectrum--knowing that I was once them, and in some ways, still am--gave me a small measure of comfort.

Yes, in case you didn't know: I have Asperger's Syndrome.

When I was applying for graduate school, the decision of disclosing the diagnosis was one I did not hesitate on. I stated it outright, both in my written application and during the in-person interview. I believed that it would be an asset, to have a firsthand perspective that I could add to class discussions and use to help my fellow classmates better understand the students with whom they work on a daily basis.

It took a great many years for me to see having Asperger's Syndrome in such a light. To view it as a positive, rather than a negative. And here I was, walking into this completely new environment, unwilling to disguise a diagnosis that had been such an integral part of my being accepted into that environment in the first place.

I was fortunate, yes, where so many others are not. When I imagine being treated as the young woman in this story was treated--her credibility tarnished, her good name dragged through the muck--I am pained beyond the description of words. I am stirred, furious, into an ardor of righteousness, because I know that if I had seen what she had seen, I also would have been moved to report it.

So why should what she says, or what I say, or what anyone else with Asperger's Syndrome say, be so harshly discredited? Indeed, the most laughable part of this entire debacle is the school's principal saying that because of this young woman's condition, she was "probably lying." There is a sad irony to an authority figure whose charges include students on the autism spectrum completely and utterly failing to understand one of the most frequent hallmarks of ASDs, which is the near inability to lie.

People on the autism spectrum are said to be extremely honest, sometimes even brutally so, and that lying is a social event in which they will not and/or cannot engage. For me, it was simply that I never saw any point in lying. I may not have always been so tactful when I was younger, but it was never because I intended to hurt anyone or meant any harm. I have learned how to frame my honesty in a proper context, but never have I diluted it.

I do not believe this young woman would do so, either, and in fact would be more moved to seek justice for the terrible treatment visited upon these students by the very people who are meant to be taking care of them. Because how close did she perhaps come to being one of them? How close did I come? And just as I had no one to speak for me, these children also have no one to speak for them.

Except her.

The school principal and the members of this young woman's department at Towson, by their actions, sought to silence her voice--and, in turn, silence the voices of these children. There can be no defending them, no rationalizing or logic-ing their deeds away.

How can we expect these children to value themselves if the adults around them are so clearly demonstrating that they do not value them? I spent too many years believing I was not a person worth loving, or having as a friend, as a student, a daughter. Too many years believing I was not a person at all, and that vicious trap is what awaits these kids and so many others if things do not begin to change.

This young woman is one of the voices of change, one that I hope will be able to speak up loudly and proudly, rising from the ashes of the two schools' disgraceful actions. I hope she does go on to become a special education teacher and give students with ASDs and other developmental disabilities the support and encouragement they need--the very same support the education department at Towson so astoundingly failed to show her during their gross mishandling of this entire matter.

For the hope of a better future for all: Stop the abuse, stop the cover-up, stop the deliberate spread of misinformation. Let the truth ring out.

Hair of the Dog

2010-11-15T18:51:00.003-05:00

Every November, an event called NaNoWriMo takes place. It's where people challenge themselves to write a novel in exactly one month. I tried to do it last year (unsuccessfully), and though I'm not taking part this time around, (much as I would have liked to), I've been thinking a lot lately about a situation that occurred recently with an old friend of mine who stopped talking to me a few months ago.

I wanted to find some way of dealing with the situation, to sort through all of the emotions I've been feeling, so I decided to write about a particular memory I have of her. I have no idea if this is any good, but now I know I can write 850-ish words in an hour (that's how long it took me to write this), so I feel much more motivated to work on my book.

This piece is called Hair of the Dog.

---

"Come on, Charley!"

Her voice is sing-song, playful as she waves her hand. He pants happily, eyes bright and shining, chest heaving with eager breath, and trots over. I watch as she clips the green leash to his collar, readying him.

"Wanna go for a walk?"

He barks in the affirmative, tail wagging nonstop. The noise rings in my ears, but I stay calm, focused on the task at hand. I pull on my coat, following her copper ponytail out into the cool, autumn night.

Down the road, Charley does his business, and she lets him off the leash soon after. "So he can run around a little," she says, and I nod.

The lights from the baseball field behind her street cast a faint glow; beams of light slipping in between the thick trees. It's only steps to the high school from there, beige and black walls and doors that close with a thunderous click.

Charley's vibrating form appears under the streetlight then, thick, white curls turned to an unnatural orange. A rustling in the bushes catches his attention, and he's off, chasing the unlucky--and no doubt unhappy--neighborhood cat.

We shake our heads in disbelief, our collective laughter echoing down the street.

---

She calls him back soon after, and we head inside, clomping up the creaking steps and through the two doors into the foyer. The smell of dog hits me in the face almost immediately, and I wrinkle my nose in disgust.

I'm not a dog person.

It's always the barking, the piercing volume that vibrates inside my skull and leaves me trembling, overwhelmed. The yappy dogs are the worst, with their high-pitched yelps and jumping as if they have springs attached to their paws. The combination of the two is enough to send me running from the room.

She told me how dumb Charley was when I first met him. That he'd never hurt a fly. I remember the almost permanent grin he had on his face, teeth exposed, pink tongue hanging down as he stared at us. His fur reminds me of my mother's sweater--coarse and smooth, bristling underneath and between my fingers.

He's helped me be not afraid.

I walk behind her to the TV room, listening to the scritch-scratch of his feet on the hardwood floor. It had been the usual back-and-forth at the video store that night, trying to decide what to rent. We never agree on anything, until the very last moment, when some movie we'd missed catches both our attention.

"Are you okay with this one?"

"I am if you are."

"I'm good."

I watch the tape slide into the VCR, the television flickering as the FBI warning appeared on screen. She grabs the remote then--one of several on the ruddy wooden chest in front of us--and fast-forwards. Her legs are tucked under her, a bowl of popcorn curled in one hand and pressed against her sweatshirt-covered torso. My purchase from the store was a box of gummi bears, and I've already taken them out of the package and sorted them by color, discarding the oranges and yellows.

She's washed her makeup off, revealing the truth behind the facade. Erect, reddened pimples dot the landscape of her face, all connecting to form a picture of what is inside. I've watched her hide, standing in front of the mirror, concealing, pressing the brush with fevered strokes, again and again. I don't understand it.

To me, she is beautiful. She is my best friend, and she is beautiful. If I can see it, why can't she?

The movie begins to play, but I'm regarding her silently now, honored by this moment. She has let me know who she really is. I do the same thing, but all the time, because I don't know how to hide. Sitting here beside her, eating painstakingly arranged gummi bears, I can finally breathe. I am at peace.

She's a part of me. A string for this kite that is always flying, flying, nearly flying away forever. She makes the earth real. And when I'm with her, I'm real.

Charley is lying next to her on the couch now, head bowed and resting on her leg. His doggy derrière is perilously close to my person, and so I hurriedly scoot over, one eye fixed warily on his posterior. She seems even calmer when he is around, and I gaze at the two of them, grateful for the comfort they have both given me.

The movie has finished, a final swell of music crescendoing as the credits start to roll. This is the part I dread, the knowing it's begun to end. I would like to live in a universe of infinite Saturday nights, spent exactly like this. There would never be any Sundays. Sunday is the falling day, the day of knowing what's coming, and being able to do nothing about it, except wait.

But I am safe here, in the night. Behind these walls, in this room, on this couch. With her sitting next to me. I'm sixteen, and she's my best friend, and she always will be.

...Won't she?

It Will Get Better

2010-10-21T09:16:00.003-04:00

In response to the recent suicides by several gay teens, there is currently a campaign going around called "It Gets Better," featuring videos of the famous and non-famous alike, telling these young people that things do get better. I was inspired to create a video of my own, though this is geared more towards individuals on the autism spectrum than GLBT teens (but everyone is welcome to watch). It is a little lengthy, for which I apologize, but if you enjoy it, please "Like" it and pass it on!

Call for Participants: Please Repost!

2010-09-28T17:12:00.002-04:00

CALL FOR PARTICIPANTS

I am recruiting males over the age of 18 with a clinical diagnosis of Asperger's Syndrome for a study to teach how to ask someone out on a date. Sessions will be conducted three to four times per week. The study is currently ongoing and participation for each volunteer should last for approximately three weeks. If you are interested in participating in this research, please contact Amy Gravino at Amy@amygravino.com. Thank you!

Study Participation Criteria:

- Must be over the age of 18
- Must have official Asperger’s Syndrome diagnosis from an outside agency or clinic
- Must live in the NYC/northern New Jersey area.
- Minimal to no previous dating skills training
- Must have at least two to three unsuccessful previous attempts at asking someone out for a date.

A.S.C.O.T Coaching, LLC

2010-09-20T13:39:00.007-04:00

I am very pleased and excited to announce that the A.S.C.O.T Coaching, LLC section of AmyGravino.com is now up and available for browsing! If you or someone you know is interested in college coaching services for students with Asperger's Syndrome, or any of the consulting or public speaking services I have to offer, please feel free to check out my site and pass it along! Click the banner below to go to the A.S.C.O.T Coaching, LLC main page. Thank you!

The DSM-V Asperger's/Autism Debate

2010-09-07T12:48:00.005-04:00

Last night, I was perusing the Autism Speaks Facebook page, when I came across this post: http://www.facebook.com/autismspeaks?ref=ts#!/posted.php?id=75219157496&share_id=150715731619580&comments=1#s150715731619580. It's a link to an "In Your Own Words" blog written by a young woman with Asperger's Syndrome about why she feels Asperger's should remain a separate diagnosis from autism in the DSM-V.

I hadn't even gotten to read the blog post itself when I started reading the comments on that link. And there were many, oh yes, from parents/professionals/folks on the spectrum in varying states of outrage/agreement. But the comments that stood out to me the most were from a 16-year-old with Asperger's named Jordan. He flat-out was attacking people at certain points, and his whole overall attitude was doing a serious disservice to Aspies everywhere (you can read some of the things he wrote at the link there).

I was most disheartened by this, as you can imagine, and so I decided to write a response. It turned out to be a freaking novel (is anyone surprised?), but I both addressed Jordan and got out my feelings on the autism/Asperger's debate. This is what I wrote:

"Okay. I've sat here reading (almost) every response to this for the past half an hour, and my brain is aching. Jordan, let me direct this to you first...I know you have Asperger's Syndrome. Guess what? I do, too. But the way you have conducted yourself in this thread is giving a seriously bad name to "Aspies" everywhere. You've attacked people needlessly (telling them to "shut up"), and I find your entire attitude to be condescending and know-it-all. Maybe you didn't mean to come across that way. In fact, you probably didn't, but here's the reality. People aren't not listening to you because you have Asperger's--they're not listening to you because you're sixteen and you DON'T know everything. No one does, in fact. Heck, even I don't. I got this diagnosis at age 10, and here I am seventeen years later STILL trying to figure it all out. And even though I don't have the answers or a great, all-encompassing solution, here is one thing I do know:

We all want people to see our point of view. This is somewhat ironic because, being on the spectrum, we tend to have a difficult time seeing others' points of view. I know that when I was sixteen, all I wanted was to be heard, to be acknowledged. I see you on here, going on about how great you are, how you could have your grades up "if you wanted to" and how you plan to be a published author and this and that. There's nothing wrong with having goals or dreams, my friend. But from your comments I detected a serious amount of insecurity--like you felt you had to tell us these things over and over to "prove" that you deserve to be taken seriously. But if your arguments and the things you had to say were truly sound and well thought out, that's all you would need. No "proving" necessary.

But instead there is hostility pouring off of you in waves, and I recognize it, along with your insecurity, as I have seen in adult males on the spectrum twice your age at support group meetings I have attended. You may think that you don't need any help, but that's the surest sign that you do--and the day will come when you'll have to ask for it. I once felt the same way--I was downright ashamed to ask for help because I thought I should know how to do "these things"...and I didn't. So I suffered, and maybe I lashed out at people too, in the same way that you are. All it does in the end is cause more harm than good, and it further prevents having what you have to say be heard by the people you want to have hear it.

Anyway...back to the subject at hand. I understand both sides of the DSM-V debate. I'm currently a grad student in ABA, and I've done observation in classrooms with kids on every corner of the ASD spectrum. I used to have a fear not unlike the blog author's--of being "lumped in" and seen the way I saw those kids. But the fact is, Asperger's is a part of who I am. They can change the wording, but that doesn't mean its meaning has to be taken away. And if, in the process, it allows folks with Asperger's to receive the services they need (services I certainly never got in elementary, middle, or high school), then I can't see how it would be a bad thing.

It doesn't make us any less who we are, unless we let it. We are different--not better, not worse--just different, both from the rest of the world and from each other. But the more productive use of our energies would be to help one another, not tear each other down. All of the fighting and squabbling is a waste--a waste of time, and heart, the heart that I know we all have. A heart that beats for our spectrumite brothers and sisters, and all their loved ones.

My goal is and always will be to leave this world a better place for folks on the spectrum than it was when I got here, a goal I hope to accomplish by acting as a college coach for people with Asperger's, and by being a public speaker. I have spoken at autism conferences all across the country, as well as professional development workshops and school assemblies, and the overarching message I try to leave my audiences with is that we may be different, but we have much to offer the world. Each person on the spectrum has their own gifts and challenges, and should not be overlooked, no matter how affected or not they may be."

Introducing: AmyGravino.com!

2010-08-28T23:36:00.005-04:00

Hello, loyal readers of my blog! I am most pleased and proud to present you all with my brand-new, fully-functional website: AmyGravino.com!.

AmyGravino.com is your one-stop shop for everything and anything relating to moi. It has my bio, my C.V., pieces of my writing, articles I've written, video and audio clips from media appearances that I've made, and more. The page for ASCOT, my college coaching LLC, is still under construction (which is fitting because I'm still trying to hammer out the details of setting up the LLC), but everything else is finished.

I am trying to attract people looking for college coaching or consulting services, or anyone looking for an autism/Asperger's Syndrome-related public speaker, and I knew I needed to have all of my information in one place, hence the creation of this shiny new site.

Now, I know I am no website designer, and it certainly doesn't look as good as if a professional did it. But, I worked very hard on creating all of the pages and putting stuff together, so I hope that you will all enjoy perusing it. If you have any (constructive) feedback to offer, then please, by all means, do let me know. And if you like what you see, please feel free to spread the word of AmyGravino.com as far and as wide as you like.

Also, I have added a new feature to my blog here: the "Share" button. It can be found on all of my current and previous blog entries, and its function is to make it easier for you to share my posts with whomever you think might want to read them! So please do use this feature at your convenience. Thank you!

Home Is Where the Hard Is

2010-07-31T12:37:00.005-04:00

Sitting on an enclosed deck in the middle of a thunderstorm has become a favorite pastime of mine. I used to be terrified of thunder; as a child, even the slightest rumble would send me flying under the covers, shaking with fear. Even now, the storms seem scarier when I am inside, so I call upon my father to join me, where we settle into the green and white-striped chairs--his, always the recliner. With the sounds of whipping wind and falling rain all around me, I am calm.

My parents still live in the house I grew up in, about a two hour's drive from where I am now in New Jersey. Graduate school has kept me almost absurdly busy, and I don't go back there very often, except for the occasional orthodontist appointment or holiday.

There is a danger in visiting one's old hometown, in that you run the risk of seeing people you know. People from the past, who remind you of the person you used to be, and who you spent years trying to forget.

People you went to high school with.

The beige and black building is much smaller than I remember. At its feet rests a verdant landscape, the grassy, crater-shaped bowl used for baseball in summer and sledding in the winter. A long handrail in the middle of half moon-shaped steps leads the way to the front doors, whose once heavy handles yield easily to my hand. From faraway glance, it is peaceful, serene, and immaculately kept.

For me, it is and was my vale of tears.

It can be said that people spend most of their lives trying to figure out who they are. It can also be said that this process almost universally begins in high school. Jock. Nerd. Homecoming queen. Band geek. Class president. Loner. Which one are you? Now's the time to find out, to find others like you and stand together--allies in the silent war of the hallways.

But to do that, you first must know that you are a person. I never got that far.

Sometimes it was only a look. A brow furrowing in disapproval, eyes rolling almost comically far up into their heads, a brief scoff before finally turning away. I never knew what these things meant, but still I was left with a deep burning inside my heart. Chest heaving, cheeks flushed, the beginnings of teardrops forming in my throat. A powerful poison that was slowly, methodically, killing me.

I knew I wasn't like my peers. Not popular, beautiful, happy. Not normal. Through elementary and middle school, my apartness from them became painfully obvious in almost every way, but it wasn't until high school that I realized the true nature of the divide between us.

They were human. I wasn't.

I believed this. At first, it was because they told me. "Psycho. Freak. Loser. Retard." In between classes, alone in the hall, standing by myself not saying a word. If there was an opportunity, they took it, hurling insults like tommy gun-loaded paper airplanes whizzing through the air.

Am I someone? Am I even alive? the questions plagued my thoughts. After a while it became impossible to see the difference between their lie and my truth. Their words were pinballs, firing around in my mind through the maze of neurons and synapses, reverberating, shrieking as they traipsed and ran and looked for the end of the labyrinth, to no avail.

I was convinced that I wasn't really there; just a body, floating through those halls day after day, with no essence or tangibleness behind it. Nothing to tether me to the earth, to the rest of humanity. My soul belonged to them.

This was the storm that I lived in, with no shelter to run to, no protection to shield me. No matter where I tried to hide, the thunder always found me. And it roared.

My father gently rocks back and forth in his recliner, the screws squeaking quietly as I listen. The rain is beginning to subside now, the sky brightening, and the air is tinged with a crisp coolness. The trees are stained, their leaves heavy with damp. Tiny droplets hang from every edge, pulling them down as if bowed. Another survivor. I nod my head gently in reply. We have both made it through the storm.

Participants Still Needed!

2010-07-27T12:19:00.003-04:00

CALL FOR PARTICIPANTS!

I am recruiting males over the age of 18 with a clinical diagnosis of Asperger's Syndrome for a study to teach how to ask someone out on a date. All volunteers will be required to have their own transportation and must be able to come to Caldwell College (located in Caldwell, NJ) three to four times per week. The study is currently ongoing and participation for each volunteer should last for approximately three weeks. If you are interested in participating in this research, please contact Amy Gravino at AGrav3230@aol.com. Thank you!

Study Participation Criteria:

- Must be over the age of 18
- Must have official Asperger’s Syndrome diagnosis from an outside agency or clinic
- Must have transportation and/or live in the NYC/northern New Jersey area.
- Minimal to no previous social skills training
- Must have at least two to three unsuccessful previous attempts at asking someone out for a date.

Thoughts on a Tragedy

2010-07-26T10:31:00.003-04:00

I recently had the following link posted to my Facebook wall: http://news.yahoo.com/s/ap/20100722/ap_on_re_us/us_children_strangled. It's the horrifying story of a woman in Texas who murdered her two children with autism by strangling them with a wire.

What is there to say about a terrible story like this? It's sad. It's tragic. Beyond anything else, it's representative of a failure on so many fronts. It would be easy to blame the mother, to call her a whole host of names and condemn her to the lethal injection that is probably coming her way. But she is not the only one at fault here.

The articles mention that Texas is ranked #49 or #50 in terms of mental health services and supports. It's likely that there is also not much in the way of autism awareness, which leaves this woman--the parents of not one, but two autistic children--isolated, with no access to information or resources, and slipping deeper into the depression that the article said begun when she moved into that apartment.

Up here in the Northeast--especially the NYC area--there are autism organizations all over the place. Autism Speaks, Autism New Jersey, ASPEN, GRASP, the DJ Fiddle Foundation, AHA-NY, and more.

It is difficult enough raising a child with autism here, where awareness is high and resources are numerous. It is difficult, too, for we adults on the spectrum to find the services we need. Therefore, I can't imagine what it must've been like for this woman down in Texas, where there aren't many or even any of these groups, any support services of any kind; where "hope" is the longest long shot that there is.

It is circumstances like this that lead to desperation, to this woman thinking there was no other solution than the one she chose. Don't misunderstand me; I am not defending what she did in any way; she took the desperation she was feeling to its most extreme end, and two innocent children are now dead for it. But the whole atmosphere down there--the ignorance and the misunderstanding--is what helped to set the stage for this in the first place.

However...one thing that would move me to condemn her outright is how, in the article, she is quoted as saying, "They're autistic...not normal. Not normal. I want normal kids." That is an incredibly heartbreaking thing to say on top of everything, and unfortunately gives a sad insight into her mental process and perhaps that still of society at large--that having a "normal" child is better than having one with autism.

Had she even given the children up for adoption--which would have been better, because at least they'd still be alive--who knows how hard it would've been to find them an adoptive family because of their autism. But at least they would have had a chance. At least they would still have their lives.

So what do I think of this? I wish I could say I was shocked. I used to be, when I'd hear stories like this. Now I just add it to my growing mental list of horror stories that have come to represent such a system-wide failure. It is stories like this that make me ever-more determined to do what I do--to make this world a better place for individuals with autism, so that things like this never happen again.

Pity, Party of None

2010-06-18T14:18:00.003-04:00

This is a comment that I made yesterday on Facebook, in response to comments I saw posted by someone with Asperger's Syndrome. She was frustrated because she just graduated from law school and doesn't have a job, and felt that the world had screwed her over.

Her comments belied a bitterness towards the world because of abuse she's suffered over the years and a general resentment towards having autism. She was basically feeling sorry for herself and saying that no one would try to treat her this way if she didn't have autism, and she was angry that no one "had the guts" to stand up for her. So I felt a very great need to respond to all of this, and this is what I wrote:

"Sometimes, when no one else will stand up for us, we have to have the guts to stand up for ourselves. Do you think there are any of us who HAVEN'T had the 'system' fail us? We are living and trying to be successful in a world that isn't designed for us, and yes, it sucks. But complaining and wallowing in self-pity accomplishes nothing except proving them right--that we are "damaged," "useless," "pathetic"...any of the names that I myself have been called and I'm sure others have been, too.

I know it's hard, but you have to stop listening to their voices, the voices that condemn you to failure, and listen to YOUR voice--the voice that says "I graduated from law school. I kick ass!" I mean, that's a HUGE accomplishment, and it says so much about you that you fought against those long odds and persevered and got that damn degree, despite what anyone said.

People told my parents I'd never go to a regular high school, let alone college, and that I'd work in a sheltered environment. This year, I'm about to graduate grad school with my Masters degree in Applied Behavior Analysis. I'm a writer, a public speaker, an activist and advocate for all people on the autism spectrum. I have had the fortune to have my voice heard, and so I especially try to represent the people whose voices haven't been heard. I know your frustration and your pain so well because they were once my own, too.

It would be very easy to use my diagnosis as a crutch--when I was younger, I used to say, "It's not my fault...I have Asperger's Syndrome." But blaming everything on the disorder is just as bad as not wanting it to exist. It's not all of who you are, but it's a part--a part that can either be negative or positive. And people that would abuse or try to take advantage of you don't do so because you have autism--it's because they perceive that you are vulnerable and not someone who would stand up for yourself. But if you do, if you have confidence and believe in yourself, they won't be able to push you around.

For me, having Asperger's Syndrome was once all negative, but rather than being crushed under the weight of it, I've used it to try and make a difference in the world. Look at it as an asset--a perspective that you have that NO ONE else does. With that and your law degree, I know you can change the world, too, and help to ensure that no one ever goes through what folks like you and I have gone through, ever again."

Participants Wanted for Research Study!

2010-06-16T17:13:00.003-04:00

Hi, Everyone!

I'm currently attempting to get my thesis study underway, and as such, I am need of participants! Please see the Call for Participants below (you can also find it on the Facebook page of Autism Speaks, here: http://www.facebook.com/note.php?note_id=401225237905) and forward this to anyone you think might be interested. Thank you!

CALL FOR PARTICIPANTS!

I am currently recruiting males over the age of 18 with a clinical diagnosis of Asperger's Syndrome for a study to teach how to ask someone out on a date. All volunteers will be required to have their own transportation and must be able to come to Caldwell College (located in Caldwell, NJ) three to four times per week. The study is expected to begin on June 21st and last for approximately three weeks. If you are interested in participating in this research, please contact Amy Gravino at AGrav3230@aol.com. Thank you!

Study Participation Criteria:

- Must be over the age of 18
- Must have official Asperger’s Syndrome diagnosis from an outside agency or clinic
- Must have transportation and/or live in the NYC/northern New Jersey area.
- Minimal to no previous social skills training
- Must have at least two to three unsuccessful previous attempts at asking someone out for a date.

Interview on NY Talk Radio!

2010-06-14T17:22:00.003-04:00

Last night, my friend/business manager Nicole Turon-Diaz told me of a radio show called "Your Beautiful Child" on NY Talk Radio in Tribeca that she was going to be interviewed on today. The show addresses issues faced by parents of individuals with autism spectrum disorders, and Nicole was being interviewed about her organization, Learning By Design, and her upcoming collaboration with Joey Travolta on a summer film camp for kids with special needs.

Initially, Nicole asked if I would call in to the show, but when I told her that my meeting with my professor had been moved from today to Wednesday, she asked if I wanted to accompany her into the city and be on the show itself! I was quite surprised by this, but readily agreed.

So, we drove into the city today and met up with Shane B. Kulman, the woman who is the host of the show, for brunch at a restaurant in Tribeca called Bubby's. We discussed what would be happening on the show and what it would be like, and I found myself very excited for what lie ahead.

It was truly quite an experience, and so much fun. The show wasn't taped in your standard recording studio, either...it was in this building in Tribeca, on the first floor. There was a cat that kept crawling all over me (cute little bugger--left white hairs all over my black dress. Go figure). The room had five different decades of stuff in it: an '80s-looking mirror on the wall; an old, old Singer sewing machine from the 20s; an old radio; a huge vintage portrait of Elizabeth Taylor on the wall; and this coffee table that looked like it was carved out of a tree. Not to mention paisley Oriental rugs and a wet bar that looked like it was from the '70s. Apparently different shows can rent out the space to record there, and just...zowie. What a space indeed.

So, I am pleased to report that the interview went very well--I even got to read my "Letter to My Younger Self" on the air! If you're interested in listening, here is the link (just click on the "play" button, or click "Download" to download it to your computer): http://nytalkradio.net/wordpress/podcasts/your-beautiful-child/lucky-13/. Please do let me know what you think of the show if you decide to listen. Thanks, and I hope you enjoy it!

Friends with Benefits

2010-06-08T22:31:00.003-04:00

This past Tuesday, I attended the 6th annual benefit for GRASP, the Global and Regional Asperger Syndrome Partnership. Each year, GRASP gives out three awards: the DNA (Divine Neurotypical Award) to a neurotypical individual who has made tremendous contributions and worked towards helping the autism/Asperger's community, the FAB (Friend and Benefactor award) to an organization that has funded and worked towards improving the lives of individuals on the spectrum, and, most recently, the DSM (Distinguished Spectrumite Medal) to a person who is on the spectrum themselves, for their contributions to the Asperger's community.

This year's honorees were Lois Rosenwald (DNA), Linda Walder-Fiddle (FAB), and John Elder Robison (DSM). I was especially thrilled to hear about Linda, as I am on the Self-Advocate Advisory Board for her organization, the Daniel Jordan Fiddle Foundation. Having met John at the AHA-NY conference last month, I was also happy to hear about him getting the DSM, as he is a very nice, very funny man and has done quite a lot to raise the profile of Asperger's Syndrome in the media.

Every year, Michael John Carley (Executive Director of GRASP) has a young adult diagnosed with Asperger's stand up and speak for a few minutes before the awards are given out, to say what GRASP has meant to them over the years. As excited as I was to attend the benefit in the first place, my spirits soared when Michael asked me to be the one to speak this year. I remembered sitting in the audience last year and wishing that it was I who was up there speaking. Stranger things, eh?

It is a bit daunting, however, to condense all that I could say into a 5-minute speech. I had jotted down a few notes on a purple index card, just to remind myself of the points I wanted to touch on, but once I got up there, I hardly even looked at it. The words just seemed to flow, and I spoke from my heart. I don't know if anyone was video recording it, but I feel pretty good about what I said and I believe I got my message across articulately and with poise (which is rare for me, because my spazitude has always gotten in the way of even the tiniest scrap of poise that I might have had in the past).

Just when I thought the evening couldn't get any better...it did! Malachy McCourt (brother of author Frank, who wrote Angela's Ashes, and who is an author, playwright, and political activist in his own right) was in attendance as the resident "celebrity auctioneer" who hosted the silent auction that was taking place. He got up at the end to announce the winners of the auctions, but before he did, he quoted a part of my speech! I had at one point compared being a person with Asperger's Syndrome in a roomful of neurotypicals to Lawrence Welk being at the Apollo Theater.

"Lawrence Welk at the Apollo...that image will stay with me forever!" Malachy declared, and I laughed, elated beyond all measure that he had both quoted me AND liked the joke that I made! I just couldn't believe it. I went up to him afterwards and thanked him for giving me a shout-out, and he was just so sweet, saying that he had loved my speech and the way I'd spoken. He's like an old Irish grandpa, and he tells wonderfully bawdy jokes and has a razor-sharp wit. I even gave him a big hug, and he hugged me back.

My parents were at the benefit, too, and I was able to introduce them to Marc Sirkin from Autism Speaks, the man who had asked to publish my "Letter to My Younger Self" on Autism Speaks' blog. He had brought with him another gentleman named Kai MacMahon, who is the new Director of Online Fundraising at Autism Speaks. Kai introduced himself to me (I liked him right off the bat because he's English. The accent does it for me, what can I say), and we had a lovely little conversation about cooking and my ability and his lack thereof. He said he'd read my Letter as well and had really enjoyed it.

I also met Jesse Saperstein, who just published a book called "Atypical: Life with Asperger's in 20 1/3 Chapters." Interestingly, Jesse is the person who played the same role at the benefit last year that I played this year. I am hoping that, with any small measure of luck, I will follow in his footsteps and have published "The Naughty Autie" by this time next year. In fact, Jesse told me that he was going to refer his publisher to me, because they are looking to publish books about Asperger's Syndrome. So, fingers and toes crossed! We'll see what happens.

I have to admit, I was a little nervous about my speech, if only because I wanted to be sure I covered all of the ground that needed to be covered, and that I did it well. People were coming up to me afterwards to offer all sorts of praise, and so it seems my speech went over like gangbusters! Everyone was so kind and friendly, and it greatly put my mind at ease, that's for sure.

So, overall, the 6th annual GRASP benefit was a smashing success. My friend/business manager Nicole had donated three necklaces to the silent auction, and at least one was bid on (I'm sure all of them were, though). I got to see lots of old, familiar faces, and a few new ones of people who'd heard of me and even read my blog! So here's a big *wave* to all of you out there. Thank you for coming up to me and letting me know who you are! I hope to meet all of the readers of my blog someday, because your support has meant so much to me as I continue on this journey to making the voices heard of all those who are on the autism spectrum. Today, the GRASP benefit in NYC; tomorrow--the world. :)

And now, for a few pictures from the evening!

Linda Walder-Fiddle and me

Marc Sirkin, Chief Community Officer of Autism Speaks, and me

My mom and me speaking to author Jesse Saperstein at his book-signing table.

Me speaking at the benefit. You can't tell here, but Malachy McCourt was in the row right behind where my parents and I were sitting!

Everything in Moderation

2010-05-13T17:16:00.000-04:00

So, here we are now on the 13th of May, and I have some wonderful new things to write about!

First of all, on May 1st, I had a first of my own: my first time acting as a moderator for a panel at a conference. AHA-NY (AHANY.org) is a support organization on Long Island for individuals with high-functioning autism and Asperger's Syndrome. My mom happens to be on the board of this organization, and I've known the president, Pat Schissel, for a great many years. I got my start in public speaking at AHA-NY's Spring conference ages ago, as a member of the teen panel when I was 14.

That was when the conference was still held at Roslyn High School, but now it's become bigger and better than ever, and for the past several years, has been held at Adelphi University in Garden City, NY. This year promised to be extra special, as the keynote speaker was John Elder Robison, author of Look Me in the Eye. As it turned out, John was also one of the speakers on the adult panel...the very panel that I was asked to moderate.

The topic of the panel was adults who had received their autism diagnoses in adulthood (in their 20s, 30s, 40s, and beyond) and how it affected their relationships with others and their lives overall. Aside from John, the other panelists were Ryan Oldis, Zosia Zaks, and Branden Plank. I remember standing, waiting, as Pat introduced me to the crowd. I actually spoke on another adult panel at that conference five years ago, with Stephen Shore and another person, and it was also the last AHA Spring conference that I attended. How different...how fitting, to be returning in this new role.

I think I did a fairly decent job, despite not having the effortless smoothness that seasoned moderators possess. I was able to meet John Robison before the panel, and after at the post-conference gathering at Pat's house, which was quite nice. And, funnily enough, I will be seeing him again at GRASP's annual benefit on June 8th in NYC, where he is receiving the DSM (Distinguished Spectrumite Medal) award, and where Michael John Carley has asked me to speak for a few moments about what GRASP has meant to me.

In other news, on April 29th, I defended my Masters thesis for a second time. I spent months revising and reworking my proposal, with the help of my advisor, Ken Reeve, and together we made my study a thing of beauty to behold. I hardly felt nervous at all as I prepared for my defense--and those preparations included making food for the big day to bring to my committee: Quinoa pilaf with spring vegetables (asparagus, orange bell pepper, red bell pepper, zucchini, golden beets); mini-grilled cheese sandwiches with fontina, Parmesan, sage, and prosciutto; and a blueberry cornmeal cake for dessert.

The defense went so smoothly--far more than the first one had back in December. And I am pleased as punch to report that my proposal was accepted with minor revisions! So that means I just have to make a few small changes, and I can then start running my study. I've met with my professor and gone over the changes that need to be made, and if all goes according to schedule and I obtain my participants without too much trouble, I should be up and running by the beginning of June.

The last bit of news that I have to share is that this weekend coming up is very special, because it's my graduation. Sunday is the commencement ceremony, and I'll be decked out in my cap and gown, walking up that aisle and on stage to receive my diploma (holder). I feel like a bit of a phony because I'm not actually going to get my diploma until August (since I'm not finished with my study yet). But the event itself is still important, and I just can't believe it's finally here.

I'm going to get pictures with my professors and my family (my mom, dad, godmother/aunt, and godfather/uncle will be in attendance), and will put them up here on the blog once I have them, so keep your eyes on this space. :)

Thoughts on Mother's Day

2010-05-09T20:47:00.004-04:00

Mother's Day is the day we celebrate mothers. We also celebrate foster mothers, grandmothers, aunts...those who are with us now and who have come before us to play that unique, unalterable role in our lives. I was at my parents' house on Long Island yesterday. My mom's cousin Lenore and her daughter Jen came from New Jersey to celebrate the day with us. We were eating dinner, talking of many different stories of life in years past, moments from my mom and Lenore's youthful days, and memories in which our lives intertwined in different ways.

One particular memory that came up was what happened to my mother when she developed post-partum depression after I was born in 1983. I was five weeks early, as many people know--born March 23rd, instead of the expected April 27th. Everything was chaotic in those early days, though blissful; my mom nursed me without issue from March right on through to the summer.

It was in July that things changed.

I sat listening as my father described what it was like--how she would stand in the doorway of our old house on Jamaica Avenue, standing as if waiting for a trolley car to come by. She'd begun to slip before then, and so my dad had ferried baby me off to New Jersey, where my Sitto and other grandparents took care of me. He watched her crumbling, the very threads of her sanity coming unloosed, day by day. Hallucinations. Thinking she had the answers to the world's problems...while my dad sat helpless, unable to find the answers to hers.

She was hospitalized in the psych ward at Mather Hospital for a brief period, but was able to convince her doctor to have her released. But still, my dad couldn't handle her, and as the months went on, she drifted farther away. He went to bring her back to Mather in November, on the eve of Thanksgiving, only to find out that their 11-bed ward had no room for her--they'd given her bed away.

The next nearest facility was in Smithtown, and the only vehicle able to take my mom was a police car. It was late at night, and my dad drove as fast as he could in his then-car, a Volkswagen Rabbit, trying to keep up with the cruiser.

My mom stayed there until January, and every day, after he got finished teaching, my dad would go to visit her. He'd buy her egg creams in the hospital cafeteria (her favorite), and would stay with her for the two hours that visitors were allotted. He described how, when he would leave, the door of the ward would coldly lock shut behind him. I could tell how painful it was for him not only to visit, but to leave her there.

The doctors tried several different medications to help my mother, but none worked. This left only one other course of treatment: electroshock therapy. She had eight treatments in all; it was finally after the fourth that my father said he saw a change in her--saw the light begin to return to her eyes as she slowly grew lucid. The hallucinations stopped, and she became something like her old self again.

Eight electroshock treatments. That's what it took to restore the chemical imbalance in my mother's brain, to bring her back from this dark place that she'd been living in. She was prescribed lithium and seen under a doctor's care for a year following her release from this facility. My dad was able to bring me back to Long Island, and there, my mother learned to take care of me, for a second time.

My father is not what you'd call an emotional man. As I sat at the dining room table, my knees pulled up tight to my chest, I could see the pain in him rising to the surface. The slight watering of his eyes as he recalled the details so vividly. I felt a tightness in my own chest, an overwhelming sadness that my mother and he ever had to go through that. I know, without question, that it was one of the most difficult periods of both their lives.

Even though I know I have no reason to, some small part of me feels responsible for what happened to her. I was just a baby at the time, but it was carrying me that caused the chemistry of her body to change. And it left her sick...sick to where I'm sure my dad must've wondered if she would ever truly be well again.

I was a lousy person when I was a teenager, but, most teenagers are. I know I wasn't as grateful for her as I should have been, and now, especially after hearing my dad recount that story today, I don't know if I'll ever be grateful enough. I've heard it said that mothers do so much for their kids--they help them, love them, discipline them...and sometimes suffer for them. But I never wanted my mom to suffer for me.

Two weekends ago, she and I went to visit a former teacher of mine from high school, Ms. Llorens. I had her for Latin in 7th grade, and her son was in the same grade as I, and only one of a few classmates of mine who ever treated me decently. She was diagnosed with breast cancer not long ago, and has undergone chemotherapy, and, after taking the month of May off, will have to undergo radiation treatment throughout June.

Although my mom has visited her several times (always on Sundays), I hadn't had a chance to see her since finding out about the cancer. I didn't know what to expect when we went over to her house, and then the door opened...and she was still her. She had a knitted cap on, and her eyebrows were nearly all gone as a result of the chemo. But when she smiled, it was the same wide smile I'd always remembered, pushing her cheeks up and rounded as it spread across her face.

We sat on some couches in a room next to the kitchen, drinking tea, and she and my mom ate pieces of the blueberry cornmeal cake I'd brought that was leftover from my thesis defense. The topic of conversation varied widely, and at one point, one of her other sons called the house. She briefly spoke a bit of Spanish to him on the phone, and the sound of her speaking it was like music. I remember how, when I was in high school, she'd stand outside her classroom greeting incoming students with a melodious, "¡Hola!" and that big smile.

The greatest connection Ms. Llorens and I share, however, is that we have the same birthday. I sometimes joke about how everyone and their brother seems to be born on March 23rd these days, but I never minded sharing a birthday with her. Somehow, it made it more special, and I would always walk into the Foreign Language Office and say, "Happy Birthday, birthday buddy!" and she'd smile right back at me and wish me a happy birthday.

So as I sat there, cup of tea in hand, listening to her talk about the cancer...the sheer awfulness of being told that you have it, and the strength that she hasn't had because of it, and how long it took her just to be able to leave the house, I could feel the tears springing up at the corners of my eyes. I told her that if I could, I would take all of the pain she experienced/is experiencing and would feel it for her, so she wouldn't have to. And I meant it.

I later told my mom the same thing, that if she ever got sick in some way, I would want to do that for her. She just chuckled softly in her mom way and said, "Thank you, sweetie." But she was sick, once upon a time, and I cannot imagine what Ms. Llorens is going through, or what my mom and dad went through all those years ago.

The only thing I know is that I would give up the entire world if I could take away all of the fear and anxiety and anguish that they felt. Because I know moms are supposed to be the givers, the sacrificers, the do-it-alls...that's what we celebrate on Mother's Day. The seeming infallibility and invincibility of these wonderful women who have shaped our lives so profoundly. To know of Ms. Llorens' and my mother's vulnerability is frightening, in part because I know I'm no longer the little girl who thinks grownups are strong and perfect. But it's also scary because I can't do a damn thing about either situation.

Well, maybe that's not so true. I know that one thing I can do is to hold both of these women close in my heart, as I always have. And whatever guilt I may feel over my mother's sickness or grief over Ms. Llorens', I still want what I've always wanted: for them to be proud of me. So all I can do is honor them, by being the type of women they are. The givers. The sacrificers. Mothers who do everything and ask for nothing, but deserve so much. Hopefully, someday...I'll be able to give it to them.

Me, around age 3, with my mom.

Exciting News

2010-04-19T13:15:00.007-04:00

I have something wonderful to share with you all, though I'm beginning to feel like a bit of a broken record! But it definitely deserves to be mentioned on my blog, so here goes.

As I recounted in a previous entry, back at the end of February, I participated in a Think Tank at Autism Speaks' headquarters in NYC. The purpose of this was to discuss the result of the Community Life section of the AFAA Town Hall meeting that took place in October.

While I was at the headquarters of AS, I briefly met a man named Marc Sirkin, the Chief Community Officer. He e-mailed me shortly thereafter, saying he'd looked at my blog and wanted to post my "Letter To My Younger Self" to Autism Speaks' main blog.

All I could think of was what a great opportunity it would be to really reach and (hopefully) help a wide range of people, so I said yes. After a couple weeks of waiting, it was finally posted up on Thursday. You can see it here: http://blog.autismspeaks.org/2010/04/15/itow-gravino/

A link was also posted on Autism Speaks' Facebook page, here: http://www.facebook.com/autismspeaks?ref=ts#!/posted.php?id=75219157496&share_id=118852414795530&comments=1#s118852414795530.

The response has been absolutely unbelievable. As of now, I've received 47 comments on it, and it's received over 200 "likes" on the Facebook page and there are 69 comments so far there. The comments have been incredible, more than anything I ever would have expected. I was moved to tears by some of the things people said, and I'm so grateful that I did take this opportunity.

I also found out yesterday that my post made Wordpress.com's list of Top Posts for April 17, 2010, coming in at #55: http://botd.wordpress.com/2010/04/17/top-posts-1448/.

It's becoming more apparent to me that there are two stages to this whole thing: the initial impact of when the blog was first posted, and now this rippling effect that seems to be taking place. Who knows what else may occur in the coming days, weeks, even months? I'm excited (and a little bit nervous) to find out.

To my new followers here on my blog and all of you who've come here by way of Autism Speaks: Welcome! I'm so happy to have you. I would just like to restate that I do make public speaking appearances at conferences, support group meetings, professional development workshops, school assemblies, and more, so if you are interested in having me speak to your group and read my "Letter to My Younger Self," please feel free to contact me via e-mail, or contact my business manager, Nicole Turon-Diaz, at learningbydesign@verizon.net. Thank you!

Twenty-seven...

2010-03-23T14:40:00.002-04:00

Today is my birthday.

Twenty-seven years have I been on this planet now. It feels like longer. And yet it's going so much faster now than it used to, faster than I have figured out how to handle.

My friend Nicole is coming over tonight. We were supposed to go out for dinner, but plans have changed slightly and now I'm going to be cooking dinner here. That makes me really happy, actually, because I love to cook. I'll be making chicken cutlets with asparagus, capers, and shallots. And for dessert, a blood orange polenta upside-down cake with whipped crème fraîche. I like the idea of making my own birthday dinner, as antithetical a concept as it seems to most people (cooking on your birthday? Pshaw!).

Then, I'm having a party this weekend, which will consist of dinner at a restaurant here in Montclair called Raymond's, followed by bowling at Eagle Rock Lanes in West Orange. I miss bowling, quite frankly, and I know how fun it can be, so I thought, what the heck...let's do bowling! I'll just be happy to see my friends and to spend time with them.

For now, though, it is quiet. The skies are grey outside and the temperatures have dropped from the record highs of this past weekend. In truth, I'm glad they did. I prefer the slow increase from cold to warmth, rather than it happening so suddenly. Already, the tree outside my bathroom window has begun to bud. The grass is green from the rains we've had over the last week, and the earth is beginning to awaken again.

It's all about time. Things happening in their own due time, like with nature. Everything that's happened over this past year has brought me to where I am now, and I really feel like there are some great things in store for 2010. I've learned by now not to get my hopes up, so I will simply follow the old adage taught to me by my dad: Hope for the best, expect the worst.

When I went to a Herstory womens' writing group last week, one of the women there asked me how old I was. I told her, and she said, "Wow...you look like you're seventeen," in this sort of awed voice. It's hard to believe that I left 17 behind so long ago. I spent many years trying to run away from it, to run as far as I could from the awfulness of high school and my adolescence. At last, I finally feel like I can stop running, and just continue through life at a casual stroll.

Happy, happy birthday to me...

The Beat Goes On...

2010-02-27T13:38:00.001-05:00

I've got more news to share with you, my fine-feathered blog readers. As you may recall, I mentioned that I was waiting to hear from the Autism Society of America in regard to a proposal I sent in to present at their annual conference in Dallas this year. Well, I finally got a response, and it seems that my proposal was not accepted. I'm disappointed, to be sure, but I have remained optimistic, because I know I can always try again next year.

You may have heard the old saying, "When one door closes, another one opens." I've never put much stock in this idiom, though I have seen it happen to others. But something that happened to me recently made me into a true believer.

Not two days after receiving the rejection from the Autism Society of America, I got an e-mail from Pat Schissel, president of AHA-NY, whom I've known for a very long time. In the e-mail, she asked me to be a moderator for a panel at AHA-NY's annual Spring conference in May! Well, I was ecstatic as can be, and I readily accepted her offer. It's as if that was waiting for me all along and I just had to experience the bad before getting to the good.

In addition, I also got to do a radio interview last week on the Strange Dave Show. I was caught quite off-guard when he e-mailed me to request the interview, but happy that I was able to talk about autism and my public speaking career (as well as the Monkees, which is what became the focus of the interview as it went on). If you're interested in listening, click here (click ahead to the 36:25 mark, as that is where it begins).

Finally, this past Wednesday (February 24th), I attended a "Think Tank" at Autism Speaks' headquarters on Park Avenue in NYC. The purpose was to discuss the Community Life issues from the AFAA Town Hall meeting that I attended in November. Linda Walder Fiddle had asked me to be a part of this, along with Michael John Carley (Executive Director of GRASP). There were six of us in attendance altogether--Michael, Linda, Lisa Goring (Director of Family Services at Autism Speaks), Peter Bell (Executive V.P. of Programs and Services), and Dr. Gary Mesibov (Director of Division TEACCH) who conference-called with us from North Carolina.

I had felt some trepidation about going to Autism Speaks for this event, as it was like walking into the belly of the proverbial beast. I didn't know what it would be like--if I would be pandered or condescended to, in a sense, or relegated to the corner and not permitted to speak at all. Luckily, neither of these ended up being the case. I was quiet in the beginning, trying to absorb all that was going on (the echo from the speakerphone didn't help matters), and then once I felt more at ease, I began to share my thoughts on different topics.

Having Michael and Linda there was a tremendous help, of course, and soon I was speaking passionately about the need for certain services or pieces of legislation that could be drafted to answer this problem or that concern. As little expertise as I have in the legal field (very little), I was still able to offer my ideas and have them not only received, but also lauded.

I know there is a great fracture between several parts of the autism community and Autism Speaks. Maybe some spectrumites will see me as a Benedict Arnold type for going onto "enemy territory." Yet I feel like the best way to enact change and bring our perspectives to Autism Speaks is to do just that. Even though my opinions were met with enthusiasm and respect, I am well aware that this hasn't been the case for many others on the spectrum. With these efforts, I'm hoping to change this, to show Autism Speaks the value of the input those of us on the spectrum have to offer.

After the meeting, Linda and I went over to Bergdorf Goodman, a high-end department store on Fifth Avenue. I had always dreamed of having lunch in their restaurant on the 7th floor, with its astonishing view of the park and high-backed chairs that looked like something out of a fairy tale. All of these thoughts swirled through my mind as I sat there nibbling on perfectly seasoned pieces of toasted lavash. There really is so much work to be done, and at that moment, the reality of how this is going to be what I'm going to do for the rest of my life sunk in.

I don't mind, though. On the contrary, I find it to be the most satisfying and important work I could ever do. My Masters thesis, which I am in the midst of as we speak, is also going towards that effort, as is my book, "The Naughty Autie." Every article I write, every presentation I give and public speaking gig I do is a part of it. Though I've only just begun to do this, the Asperger's syndrome college coaching is most definitely a part of it.

In a lot of places, awareness still needs to be raised. One thing I told the members of the Think Tank is that before anything else can be done, any laws enacted or programs funded, people have to know what the heck autism and Asperger's syndrome are. Awareness is paramount. Linda told me of a community where they're looking to construct a low-income apartment building for people with Asperger's to live in, and the folks in the community are fighting against it. Interestingly, it's largely a black community, and given the discrimination these individuals have no doubt faced, you wouldn't think they would turn around and do the same to another group of people.

It's all about fear. People fear what they don't understand and don't know, and that's what's happening here. These people think that individuals with AS are dangerous, somehow, or criminals, or God knows what. Linda asked me if I'd want to go speak to the community in April, to explain what Asperger's is and hopefully abate their concerns so that the plans for the building can move forward. I readily accepted, because the prejudice against those on the spectrum disturbs and saddens me, and knowledge is the first step to eradicating it.

One concept that was brought up at the Think Tank was the idea of autism apologists, of how many people on the spectrum have a hard time getting services because the economic costs make them feel they have to apologize for needing these services. I mentioned how this is interesting because I have been told by many of my friends that I tend to over-apologize for things. It's the result of a lifetime of constantly being made to feel that I am always wrong. It's taken me so many years to finally look the world in the eye and say:

"I'm not sorry."

I have grown so tired of being sorry for the way that I am. For who I am. Too many years of my life were spent walking with my head down, never seeing what was going on around me. You miss a whole heck of a lot when you go through life like that, and no one--on the spectrum or not--should have to feel that way. So I expressed to the Think Tank that no one should have to be sorry for who they are and needing the services and supports that would help them to get along better in this world, and, ultimately, be successful in it.

As simple a statement as "I'm not sorry" is, it distills a greater idea into a succinct, direct thought, which is exactly what's necessary in today's sound byte world. My great hope is that it becomes more than a sound byte, however, and moves the hearts and minds of persons whose seat of authority grants them the power to make real, broad changes in the lives of individuals on the autism spectrum.

Well...that's about all I've got to say for now. On deck for my next entry is a look at Asperger's syndrome and food--what my relationship to food used to be, what it is now, and how it's changed so dramatically over the years. It's the story of an impossibly picky eater who turned into a veritable gourmand--and for whom cooking has become her first-ever "perseverative interest."

Masters Thesis and Much More

2010-01-19T19:29:00.004-05:00

Oh, good heavens, I've done it again. I have let time get away from me and neglected to update this blog. My apologies, faithful blog readers!

So where do I begin? Well, on November 13th, I participated in a National Town Hall Meeting put together by AFAA (Advancing Futures for Adults with Autism). Linda Walder Fiddle had asked me if I would be willing to participate as a self-advocate, and I readily agreed. The meeting was held at a central location in Chicago, but there were about 15 satellite locations all across the country, one of which was in Newark, which I attended.

The meeting was unlike any other that I'd been to, devoted entirely to issues faced by adults on the spectrum and their families and caregivers. In the very beginning, we were given keypads, which we were told would be used for voting purposes throughout the day. The first poll taken had to do with demographics, and the questions were the same as they'd been on the registration form we had to fill out.

One question asked what your relationship to autism was, and one of the choices was "Individual on the Spectrum." I chose that option, of course, and waited anxiously to see what the results would be, as after each question we were shown the percentages for each answer, from all the votes cast in at all the satellite sites.

It was no surprise that the biggest groups of attendees were parents and professionals, and the percentages reflected such. The percentage of attendees on the spectrum? 7%. That's seven percent, out of the just over 1,000 participants at all of the meetings nationwide. It's...not really a terrific number, to be honest. I am very glad that there was a spectrumite presence at all to begin with, but it just seems rather low, and I hope that the number will increase greatly at future meetings.

There were three categories that we discussed: Housing, Employment, and Community Life. Each category had a list of issues within it that we talked about with the people at our table, and a transcriber would write down the things we said on a laptop. At the end, a vote was taken as to which issue should have the highest priority on a national agenda (from a scale of "Not Important to Include" to "Must Include"). We were also able to suggest an issue that wasn't on the list and possibly get it added so it could be voted on.

In the Community Life category, I was dismayed not to see any mention of "helping adults on the spectrum develop and maintain healthy interpersonal and sexual relationships," and so I voiced this to our group. Imagine my surprise and delight to see that it wound up being added to the list of issues! When the vote was taken, 71% of the attendees chose the issue as "Important to Include" or "Must Include" for a national agenda!

I don't know for sure that it is because of me that it was added to the list, but it seemed too strange of a coincidence for it to be otherwise. I was even more excited when the issues were weighed against each other (so people voted for which one was most important for a national agenda). "Helping adults on the spectrum develop and maintain healthy interpersonal and sexual relationships" came in at #4 out of the five issues. This didn't bother me so much as what was selected for #1: "Educate first responders about the challenging behavior that might arise in dangerous situations involving adults with autism so that they are prepared to handle these occasions in the safest and most effective manner."

Given that most of the participants in the meeting were parents/family members or service providers, I suppose it isn't too surprising that that's what was picked. But I highly doubt that individuals on the spectrum themselves would have chosen that as number one. It also smacks of "about us" instead of "with us"; that is, that the priority is still "determining what to do about us" instead of "talking with us about what we want and need." I'm not saying that this is what the people there thought or felt, but it is the feeling I get when I see such an issue chosen as a "top priority" for a national agenda.

Aside from that, though, the meeting was very productive, and I was glad to have attended. I do hope that the number of people on the spectrum will go up at future meetings, because that representation is so crucial for those not on the spectrum to understand where we're coming from. One of the warm-up questions we had to answer to get acquainted with our tablemates was, "Why did you come to this meeting?" My answer was, "To be a voice for those who don't have one." Going by the attendance figures, there were sadly quite a few. I just hope that I did them proud.

It's been a little over a month now since I defended my Masters thesis. Yes, I did indeed finally reach that point! I worked tirelessly on my proposal, trying to tweak and modify my study to make it as good as it could be. I came to the campus armed with homemade food for my committee (roasted, marinated bell peppers; a cold antipasto platter; an herb-leek tart; and brownies). Any nerves I'd started to feel as I set up my presentation abated as I stood there facing my professors, waiting to begin, because I knew at that moment that I was as ready as I would ever be.

The final verdict: Approved, with Major Revisions. What does this mean? Well, I'm going to have to make some significant changes to my study. The committee made some excellent suggestions, and so my thesis chair and I are going to try to use those to make the study stronger. I'll have to defend my proposal again, probably at the end of this month or the beginning of February. I don't particularly mind this, but I just want to be on good footing when that time gets here.

Another exciting development that's occurred is that I have been approached to act as an AS college coach for a few individuals who have Asperger's syndrome. Dr. Shana Nichols, co-author of Girls Growing Up on the Autism Spectrum, wrote to me to tell me of two young women that she is working with, and asked if I would be interested in working with them in my capacity as a certified AS college coach. I was beyond thrilled to be asked, and so of course, I said yes.

I've said it before, but it bears repeating: I want to be an Asperger's syndrome college coach when I graduate. I know that most colleges and universities don't even have such a position, and so I don't doubt that I will have to create it myself where I may end up being employed. For the time being, though, coaching privately seems like an excellent way to gain experience, the sort of experience that might help me get my foot in the door at a college or university. Most importantly, however, getting to do this will allow me to achieve my ultimate goal, which is to help people on the spectrum.

(And since this is my blog, I'm going to indulge in a little shameless self-promotion now: If you, or a family member, or client are in need of an Asperger's syndrome college coach, I am available for hire! My rates are flexible and can be modified based on individual financial need. For more information, please contact me privately at AGrav3230@aol.com, or contact my business manager, Nicole Turon-Diaz, at learningbydesign@verizon.net.)

Finally, in book-related news, I've decided to send a proposal for The Naughty Autie to Future Horizons, as the woman there, Kelly Gilpin, has previously expressed interest in it. It's high-time that I did something, though, and if I don't publish my book this year, I feel as though I will have missed the boat altogether.

In addition, the book, coupled with my Masters thesis study and a third documentary that I've been approached to appear in (it's called Desire and is also directed by Keri Bowers, the woman who did ARTS and co-directed Normal People Scare Me, and is going to be about people on the autism spectrum and relationships and sexuality), will really create a more complete picture of what it is I represent and what I aim to do to promote a better, brighter future for adults on the autism spectrum.

Well, I think that's about all I've got for now. I'm nervous with anticipation because this week I should be hearing from the Autism Society of America, to whom I submitted a proposal for their annual conference that's going to be in Texas this July. So look for more details about that in my next entry!

Thoughts on My First Workshop Presentation

2009-11-04T20:30:00.002-05:00

Last month, from October 9-11, I attended and presented a workshop at Autism New Jersey's annual conference in Atlantic City. I have a lot of thoughts on how the presentation went, and so I thought I'd share them here.

Let me preface this by saying that the presentation would not have happened at all had it not been for Dr. Lynda Geller. ANJ initially rejected my presentation proposal, but I was able to get the Executive Director, Linda Meyer (who was also one of my professors last semester) to reconsider, provided I could bring someone else on board who had a bit more in the way of credentials and expertise. Lynda has both of those in spades, and I am and always will be eternally grateful to her for agreeing to present with me.

Our presentation was titled, "Look Out, Here Comes Tomorrow: Strategies for Transitioning Students with Asperger's Disorder to a College Setting." It's probably fairly obvious, but I am the one who came up with the workshop name, since it has a Monkees song title in it. I'm just glad Lynda had enough of a sense of humor and graciousness to go along with it.

When I submitted the workshop proposal way back in February, I had intended myself to be the sole presenter. When Lynda came on board, I knew things were going to be different, for a number of reasons. I'd never presented a workshop before, for one, and I'd never done any sort of presentation in concert with another professional. It's always been me up until now...the Amy Gravino show, if you will, speaking on panels and doing a few keynotes. A co-presentation was a very new thing for me, and so I did not know what to expect.

It seemed like we did not really collaborate on the presentation at all, at least up until the last week before the conference. Lynda's incredibly busy schedule made it difficult reach her by phone or e-mail, and as the date of the conference grew nearer, my anxiety (understandably) heightened. I knew she would be absolutely good to go no matter what, but, while I've done tons of presentations on my own, this was the first with someone else, and I felt like it would be helpful to me if knew what she had planned and where I came in.

Had I been the sole presenter, I certainly would have designed my own Powerpoint presentation months ago. Lynda, however, having done a presentation of her own at countless conferences, brought a Powerpoint with her, so that was helpful in solving that issue, as I didn't have to worry about creating my own. The only problem was that I felt a bit out of place because it was she who presented for the bulk of the workshop. My contribution ended up being around 20 to 25 minutes' worth of personal anecdotes, as a means of supplementing the Powerpoint. I didn't mind doing this, although all I had to work from were a few notes hastily scribbled onto a wrinkled piece of paper, but it just wasn't exactly what I'd dreamed of when I thought of what my first workshop would be like.

Another issue is that we only had eight people in attendance at our workshop. Two were my parents, and another was my thesis chair. I know he could have gone to any other workshop, but he was kind enough to come to mine, and it meant a lot to me. As Lynda and I were setting up, I had asked the Autism New Jersey volunteer how many people signed up. "Fifteen," she said. I was disheartened by this; even more so when only eight showed up.

Part of the reason perhaps why the turnout was so low was that it was the last workshop of the day. Many people become exhausted by then, after a full day of conferencing, and so they just take off. Given that the location of this conference was Atlantic City, people have even more reason to leave early. Still, it bothered me. Almost all of the workshops that I attended at the conference dealt with issues faced by adults on the spectrum...and all of them had low numbers of attendees.

I attended a workshop on Saturday that was somewhat similar to mine, as it was about transitioning students with autism spectrum disorders from high school to college. The man who presented it was named Vincent Varrassi, and he used to work at Fairleigh Dickinson University, but now practices privately. I remembered him because I had e-mailed him some months ago about college coaching for people with Asperger's, and he provided some very thoughtful and helpful advice in his response.

I was, therefore, delighted when I discovered that he'd be presenting a workshop at the conference. He'd brought with him two young men with Asperger's with whom he works as clients. They chimed in periodically with anecdotal stories to supplement Mr. Varrassi's Powerpoint. The number of attendees there was even smaller than in my workshop, but in this case, the intimate group allowed for a great back-and-forth dialogue between all of us. In particular, I found myself chiming in on the issues that the guys were talking about, offering insights based on my own experiences. Strangely enough, I felt more comfortable speaking there than I had felt in my own workshop.

After the workshop ended, I went up to Mr. Varrassi to speak with him, and he remembered who I was from the e-mails. He said that just from listening to me speak there in the audience, that I was a "natural," and he wanted to know if I would like to join him and the guys ("our merry band of travelers" was how he put it, I think) when they go speaking at various conferences. Of course, I agreed. He said he wanted to keep in touch with me, so we exchanged business cards as we continued chatting on the way to the escalators.

To get back to the issue of low attendance at these workshops, I know that right now, parents of children on the autism spectrum are faced with an overwhelming number of problems, which is why conferences like this even exist in the first place. But one day those children won't be children anymore. They will turn 18, and what will happen to them? In terms of services and supports, they will drop right off the proverbial cliff. There is nothing, or almost nothing, out there for adults with autism and Asperger's syndrome.

Yet they do exist. These people are not some fantastic myth spun out of the webs of time--they are very real individuals whose lives have been put on hold because they do not have the tools necessary to be successful in society. Many still live at home with their parents and are support by them--but what happens when these parents die? What will happen to the children on the spectrum when their parents die? As many questions and concerns as there are floating around right now, that should be first and foremost in these people's minds, always knowing that one day, their 5-year-old will be 25, and will need to have a way to survive on their own.

So the lack of attendance at these workshops, while not entirely unexpected, still left me wondering when everyone else is going to wake up and catch sight of the tsunami of adolescents on the spectrum who are heading straight for the shores of adulthood and will surely crash and collapse without the assistance and support that they need.

But finally, perhaps the reason I had so few people attend my workshop is that it's simply a rite of passage. Like how someone who is nominated for an Emmy for the first time never wins. If it is just a one-time thing, then I am not so perturbed by it, and I have faith that the turnout next year will be better. I just hope that I don't become the Susan Lucci of autism conferences. Yikes.

So, even though things didn't go quite how I'd hoped, I'm still glad that I presented at Autism New Jersey's annual conference. I'm now focused on presenting again next year, and what I anticipate presenting is my finished thesis study and the data gleaned therein. I think it will be very interesting and I want to share it with the world because of the social significance of such a study, as no one has ever taught dating skills to adults with Asperger's before using the principles of applied behavior analysis. Look out, here comes tomorrow...

Here also is a video of my presentation from the conference. The first four minutes are the remainder of Lynda's portion of the presentation, and the rest is mine:

My Day In Court: Testifying in Favor of an Autism Insurance Bill

2009-09-17T01:56:00.004-04:00

I would like to apologize to all of you. I meant to write about this months ago, but it seems that time got away from me. Better late than never, though, right?

On May 14th, 2009, just days before I began my first class of the summer, something downright remarkable happened. I received an e-mail from Leslie Long, who works for Autism New Jersey, an autism advocacy organization here in NJ. She told me that there was an Autism Insurance Bill (A2238) up for approval in the New Jersey State Assembly Appropriations Committee and Senate. The purpose of the bill was to have insurance companies pay for medically necessary evidence-based treatments for autism (such as ABA) and other related services that most families pay for out-of-pocket right now, and many have even gone bankrupt because of trying to pay for these services (many of which can cost upward of $50,000 a year). The hearings were to take place the following Monday, the 18th of May, and she wanted to know if I would be willing to testify in favor of it!

This, of course, seemed like a very worthy endeavor to me, even though the bill only covered individuals aged 21 and under. So, I agreed to testify. Dan (my roommate) and I got up bright and early that Monday morning, and together we drove down to Ewing, a town right next to Trenton, which was where the state annex was located. I left my car at Autism New Jersey's headquarters, and the two of us, along with Barbara Wells (who also works for ANJ) headed to Trenton in Barbara's car.

I was struck by the atmosphere as I walked into the courthouse, signing my name in the guestbook and affixing a temporary "Visitor" badge to my lapel. More members of our group began to filter in--whom I recognized immediately because we were all dressed in varying shades of red, the chosen color for the cause and ANJ--and we stood outside the Senate hearing room chatting and mingling. One woman from Autism Speaks was handing out "Vote YES on A2238" buttons for people to wear, and both Dan and I took one and proudly pinned them to our jackets.

A few more minutes passed, and after Leslie Long couldn't get ahold of an unavailable senator to whom she had wanted to introduce me, we all went up to the Assembly Appropriations Committee hearing room. The doors to the room were the first thing that I noticed--they were tall, black, and heavy, and somewhat resembled the doors to the kitchen in the movie Ratatouille. The red patterned carpet also caught my attention, so bright and busy that it was like being inside a casino. I made my way up to the front row, along with Suzanne Buchanan, with whom I would be testifying.

When Leslie contacted me, the first thing I asked was, "What should I say?" After all, nothing would be more valuable than the words I chose for my testimony, and whatever I said needed to be concise, as there would be only a brief time for me to speak. I remembered my Letter to My Younger Self, and I decided that that would be the perfect thing to read as my testimony. I sent it to Leslie, as I was sure we would need to modify or abridge it somehow due to the time constraints. She read it aloud as we were on the phone, and said to me, "You know what? I can't think of a thing to change. Leave it just as it is."

So, I did, and only shortened the introduction that I'd written to the letter. I sat there in that courtroom, clutching it in my hand, and was so nervous, unsure as to whether it would win the Assembly over. I felt especially anxious as I cast a glance over at Suzanne's testimony, all neatly spaced and professional-looking on a crisp page of paper bearing the Autism New Jersey logo and letterhead. I crossed my fingers, hoping that I would be taken seriously, even though I didn't have custom stationery or the credibility that comes with it.

Another bill went up for debate first, just to bide time until everyone related to the A2238 bill had arrived. The first person to testify was Bob Wright, co-founder of Autism Speaks. The Speaker of the Assembly, Joseph Roberts, had asked Mr. Wright there to deliver testimony of his own, based on his experiences with his grandson. After him was Assemblywoman Joan Voss, who has an adult son with Asperger's syndrome. Ironically, I am a member of the Asperger's Syndrome Advisory Board for the Daniel Jordan Fiddle (DJF) Foundation, and her son is also on the board.

After Assemblywoman Voss finished speaking, Suzanne and I were up. Suzanne went first, and I listened carefully as she recited her prepared speech. Once she was done, the Chairwoman asked if I had anything to add. Her phrasing momentarily gave me pause, as it sounded like I was merely meant to be a follow-up to Suzanne's testimony, rather than giving my own separately. I disregarded the thought, however, and began to read my Letter.

I did not realize this at the time, as I was intently focused on quickly reading the letter, but Dan later told me that the room was completely quiet when I read. When others had given testimony, people were still talking--assistants to the committee members were walking back and forth from the table, things like that. But there was not a word spoken by any of them as I read. Dan also said that he saw people crying softly during my testimony, so moved were they by my words that it brought them to tears. I was floored when he told me all of this, amazed but in a very happy way.

The one distinct memory that I do have, however, is when the Chairwoman interrupted me about three-quarters of the way through the letter, saying that testimonies needed to be short due to time constraints and that, while she appreciated what I had to say quite a lot, that (more or less) I needed to hurry up and finish. So, I skipped one paragraph in the letter, which enabled me to reach the end more quickly.

I made my way back to my seat afterwards, and several people turned to me, their hushed voices warmly saying how much they'd enjoyed what I said. To my surprise, the Assembly voted on the bill right then and there! They went around the table asking each assemblyperson for his or her vote ('yes' or 'no'). When one woman gave her vote, she stopped to say, "And I'd just like to say to Amy, thank you so much for what you said. Your letter was beautiful." I got a personal shout-out during the vote, which was completely unexpected, but so nice.

Once the votes were tallied, we were all thrilled to discover that the bill had passed! Victory was ours! What a feeling indeed. We all hugged and embraced one another, delighted and relieved that all of our hard work had paid off.

It was, however, a somewhat bittersweet moment for me, because I knew in the back of my mind that this battle is far from over. Adults with autism and autism spectrum disorders still don't have insurance coverage--even if they did, there really aren't any services for the insurance to cover in the first place. I am proud to have been a part of this moment in history, to have contributed in the way that I did, but I know what lies ahead, and I hope that we adults will have just as many people fighting on our side as the children did.

I often feel as though many government offices and social services departments seem to think that autism and Asperger's syndrome are "childhood disorders." As if these individuals will somehow magically grow out of autism when they turn 18. But we all know that this is not the case. The fact of the matter is, autistic children are one day going to become autistic adults, and what will happen to them then? Many end up in group residences, or live at home with aging parents who will one day not be able to take care of them. Something has to be done about this.

What will the government do when millions of autistic children turn 18? Act as if they don't exist? The one true kernel of wisdom in passing this bill is that it seems as if people are starting to realize that it is better and far more sensible to pay for services now, so that these individuals can grow up to be productive, contributing members of society, than to wait until they are adults and pay then...pay for them to stay at home, without jobs, without anything, draining away their family's money.

This, of course, does not do much to help the adults who are here right now, who are struggling to find and maintain employment, to make and keep friends and develop romantic relationships. I have found myself become a voice for adults on the spectrum, especially now that I am starting my Master's thesis, in which I have to design and run a study using the principles of applied behavior analysis to teach a skill.

I think about adults on the spectrum all the time, about all the challenges they (we!) are facing, and what I can do to make things better. Testifying in favor of this bill was one step in that direction. I know that if I continue my work, write my book, (eventually) become a college coach for individuals with Asperger's syndrome, those will all be big steps in that very same direction. Having been a part of this democratic process and seeing it in action has inspired me to keep up that good fight. And I hope you all will, too.

Searching for Eve: A Review of the movie "Adam"

2009-08-27T22:01:00.004-04:00

**WARNING: This review may contain slight spoilers. Read at your own discretion.

After months of build-up and tons of people asking me if I'd seen this movie, today I finally saw Adam, starring Hugh Dancy and Rose Byrne. I'm sure most everyone already knows the story, but it's about the life of a young man named Adam Raki who has Asperger's syndrome, and Beth Buchwald, the woman with whom he falls in love and has a relationship.

One thing that I had forearmed myself with as I went in to the film was not to get my hopes up about strongly "identifying" with the character of Adam. I belong to the listserv for GRASP, the Global and Regional Asperger Syndrome Partnership, and several people on the list have posted about seeing the movie and their feelings on it. The thing is, with maybe one exception, these people are all men. I knew today that what I was going to see was a depiction of the male version of Asperger's. Although there were several moments that resonated with me, as I expected, I did not completely identify with Adam.

That is not to say that the portrayal of a person with Asperger's syndrome was unfaithful or miscalculated. It was realistic, and it did capture some of the frustrations and pain I have experienced in my own life. But, again, this was still being told through a uniquely "male" lens. Now, it does make sense that a mainstream film (or almost mainstream, because I did see this at an art house theatre) featuring a titular character with Asperger's syndrome would be a man, because more males than females are diagnosed with the disorder. However, this does not mean that women on the spectrum aren't out there. They are, although many are misdiagnosed or not diagnosed at all, and I have hope that one day their stories will be told, too.

There was one scene in Adam that particularly struck me, which is where Adam discovers that Beth has lied to him about the circumstances surrounding his meeting her parents (he thought they ran into them coincidentally at a theatre for an off-Broadway show, but it was actually preplanned). Adam flew into a rage at this, calling Beth a "liar" and throwing things around the room. For one thing, I understand why he became so agitated--he thought Beth lying to him meant that she was pulling away from him and didn't care about him.

On the other, this was another "male" Aspie moment. The tantrum itself was a pure outburst--his emotions didn't even have time to flow through his body, they just came flying out at 100 miles per hour. I have had meltdowns in my life, but for me, what's happened is that the emotions have filled me completely and overwhelmed me to the point where they spilled out of me. Neither were my meltdowns directed at other people, as Adam's was (Beth later states that she was afraid he was going to hit her). The anger or frustration I felt in my younger years was directed mostly at myself, and I wouldn't have dreamed of hurting someone, and if it did happen (albeit unintentionally), I would be wracked with guilt.

This also speaks to the dichotomy of "male" versus "female" gender roles in society. For men, it's more permissible to have a "temper," to express rage in an outward fashion like that. Women, by contrast, are taught to contain their emotions, to behave and repress and act "ladylike." We see Adam throw this fit and feel sympathy for him; yet, I feel that if it were a woman acting similarly, the primary thought emanating from the audience would be, "What a crazy bitch!", and no sympathy would be given whatsoever.

The other issue concerning gender roles again comes from the onscreen individual with Asperger's being a male, and the love interest being a neurotypical (NT) female. Beth steps into Adam's world, reads the book "Pretending to be Normal" to learn more about AS, drills him to help him prepare for a job interview. Simply put, the idea put forward is that because she's a woman, it's "expected" that she would do these things for him. It may be a challenge at times and rather difficult, but it's never mentioned that there's any other possible route for her to take (i.e., not reading books, not making accommodations, expecting him to fit into her world). She, instead, takes measures to fit into his world.

Now, speaking from firsthand experience, I can tell you that I have yet to find an NT male who would do any of these things. I'm not saying that they're not out there, but I don't think there's any way a purely NT male would make these sort of accommodations for an Aspie female. In our society, women are supposed to be "nurturers," the "carers"...protecting and providing for everyone else. A man can be damaged or screwed up in all sorts of ways, yet all it takes is a woman to come along and "complete" him, to repair him. I do not think women have this luxury, but rather seem required to be put together, stable, and calm at all times. To put it bluntly: if I had a tantrum or meltdown like Adam did in the movie, the NT guy I was seeing or hoping to see would be out the door in seconds flat.

Again, I don't mean to seem like I'm not giving NT guys any credit. Heck, I currently live with one, and he's helped me in ways I can't even describe. But when it comes to a relationship, that's a whole other basket of eggs. Longevity is just not in the cards for a person like me. Indeed, in the movie, Adam and Beth do not end up together, which is representative of the romantic foibles of most real-life Aspies. But the fact that they courted and began dating so quickly also seems to be an anomaly. I know that this is part of the magic of the movies, but the fact is that Adam's "quirks" and "idiosyncrasies" were very endearing to Beth, and sadly this is not representative of real life. I myself have learned the hard way that certain qualities of my personality annoy or irritate more people than they enchant.

The other large issue that I felt was distorted was Adam's search for a job. When the movie starts, he has a job, but is soon fired due to a lack of productivity. He sends out something like 80 resumes or cover letters, and in what seems like no time at all, he hears from a company that doesn't think he's right for the job for which he applied, but they "have one that they think [he'd] be perfect for."

Employment is a huge struggle for people with Asperger's--both obtaining and keeping jobs. Upon Adam's termination, I felt the very same sting that I could tell he was feeling, numb and disoriented as he stumbled out of his office. His former co-workers attempted to offer sympathy, but he was too aggrieved to be receptive to such condolences. When he stepped outside, everything seemed louder, more jarring, moving him ever-closer to being totally overwhelmed. I experienced something quite similar when I was fired from my temp jobs in Seattle. They weren't even real jobs, like Adam's, but my heart was shattered when I was told to pack up and leave, and I remember just looking down at the floor as I made my way to the elevator, ashamed and upset.

But for Adam to bounce back so readily is, unfortunately, very atypical. The fact that he found a job through sending out online applications is also improbable, as many folks with AS go through organizations that look for employment for people with disabilities, or utilize other assistive services. The success rate of these is often low, and is even worse when these individuals look for jobs on their own. So, while I understand that the focus of this film was to be a romantic comedy, I do wish it would have delved more into the employment aspect. I was also confused by the fact that Adam became terribly agitated when a character suggested that he move out of his apartment, yet he seemed to readily embrace the idea of moving across the country to California for a job.The film was attempting to portray the difficulty with change and changes in routine that many individuals with AS have, so throwing in that latter plot point was one heck of a contradiction (to me, anyway).

So I'm sure you're all wondering, "All right, Amy, enough. Just tell me straight: Is Adam worth seeing?" My answer is yes. It does provide an NT viewer with a better understanding of Asperger's syndrome. For the Aspie viewer, it provides a fresh opportunity to identify with a character (which may have been much more of a challenge with the film Mozart and the Whale, which was based on the book of the same name and the lives of two real Aspies, Jerry and Mary Newport). Adam is truly a unique character, and it's much more possible for someone with Asperger's to say "Hey, that's like me!" because there are no preconceptions with which to contend.

Many AS folks may feel like Adam is showing or telling them things that they already know, but even I can't deny that I got a serious lump in my throat the first time the words "Asperger's syndrome" were uttered onscreen. In my entire life, I have never seen a character in a movie that I thought was really at all like me, and so this was a monumental step forward, both for cinema and for people with Asperger's syndrome everywhere. But I still hope to see a story from the female perspective make it to the silver screen one day, because it is the yin to this yang, the other side of this rare coin that we've finally been privileged to see. And it deserves a chance to shine.

The last few months

2009-08-10T19:06:00.002-04:00

I can't believe I haven't updated since May! My goodness. Quite a few things have happened since then, and I feel terrible for not keeping you all abreast of the latest developments.

This entry is actually more of a housekeeping one, though right now I am working on an entry all about me testifying in the New Jersey State Assembly back in May, in favor of an autism insurance bill. I will have that up as soon as time allows, but for right now, I want to make a declaration.

After seeing the movie Julie & Julia today, I realize the importance of regular blogging. I got an e-mail the other day with a link to an article about a 14-year-old nonverbal girl with autism named Taryn, who had started typing on her parents' computer one day, revealing all of her inner thoughts and feelings. The article said that she'd found her "inner voice," and the person who e-mailed it to me, while anonymous, left a note that said, "We, your fans, are glad you found your inner voice, too. :-)"

That message just about made my day, for a multitude of reasons. I never realized before that I have fans, people who may possibly read this blog on a regular basis. If this is the case, then I have been letting you all down terribly by not updating in so long. No more! I had always thought that I couldn't write an entry unless I had something big and important to write about, but I can write about anything. The day-to-day goings-on in my life are pretty interesting, especially since I'm about to start on my Master's thesis this fall (if you can believe it!).

So this is my pledge to you, dear readers: no more lengthy gaps and spaces of time between entries. From now on, you will be seeing a lot more entries from me. I fear they may tend towards the mundane, but if you all are willing to read them (and maybe comment?), then I am willing to write them. This is my promise. And I will do all that I can to fulfill it. So, stay tuned for an entry about my testimony to the NJ State Assembly, and many other entries to come!

So this is what an epiphany feels like...

2009-05-05T19:25:00.004-04:00

Tuesday, April 28, 2009 was a day that I both anticipated and dreaded. I knew it was going to be a long day, because I had three speaking gigs scheduled--two at a school district in Bedford, NY, and one later that day in Stamford, CT. In Bedford, I was to speak to two groups of middle schoolers--8th graders in the morning assembly, and 6th graders in the afternoon. Nicole Turon-Diaz (my friend/business manager) and I arrived at the school around 9:20am, and there we met up with Joanne McMahon, with whom Nicole and I had coordinated to arrange the day's events. We all chatted for awhile and became familiar with each other, and then in we went to set up for the assembly. The campus had both the middle and high schools on it, and was quite beautiful indeed--never before have I seen such perfectly landscaped grass. The auditorium facility in the high school, which is where the assemblies took place, was also quite lovely.

First came the 8th graders, at 10:00am. I'd forgotten the utter volume at which 14-year-olds operate, and when they began to file into the auditorium, what started as a slight clamor soon escalated into a dull roar of tympanic cavity-throbbing teenage tones (damn you, Micky Dolenz, for renewing my obsession with alliteration). The school principal quieted them down soon enough, though, and then introduced the middle school's Autism Speaks club, which was the sponsor of my appearance. Now, I have said before that I have multiple issues with the Autism Speaks organization, and I did indeed raise an eyebrow upon hearing the name of the club, but I tried to put my animosity aside and just be grateful that a middle school even has an autism club. Anyway...one of the club members proceeded to introduce Joanne McMahon, who then introduced me.

I was unsure about how things would go. Nervous, even. Middle schoolers are a notoriously challenging audience, as I remember from the days of my own misspent youth, and I feared I would not be able to "reach" them.

I could not have been happier to be so wrong.

They were, without question, the most enthusiastic, open junior high kids I've ever encountered. I never knew that junior high kids like that could exist, and it gave me a faint glimmer of promise for the future. It instilled in me the fevered hope that the next generation won't all be made up of sadistic little miscreants, like the ones with whom I matriculated for ten excruciating years.

In both assemblies, I decided to read the Letter to My Younger Self at the start of my speeches, to "bring them in" to the talk. When I finished reading it, they applauded and cheered. They "woo"ed me! The 8th and 6th graders alike had this reaction, and I was simply stunned, because I've never gotten that sort of response before. And when it came time for the Q&A part at the end, they asked the most insightful, awesome questions. One girl asked me if I forgive the people who made fun of me in school. I was not expecting that kind of a question, but I loved it. I tried my best to answer everything they asked me, and they seemed almost disappointed when one of the teachers called the assembly to an end! Nicole and I talked with Joanne about perhaps using my blog as a vehicle to answer more of their questions. We might even do a podcast, so they'll send me their questions and I will answer them on camera. So we'll see what happens with that.

I told the kids that they could come up to me after the assembly, and several of them did! Particularly in the 6th grade assembly. One girl came up to me and said that she knew what it felt like to be made fun of because she had alopecia in 3rd or 4th grade and her hair had fallen out and the kids teased her because of it. A whole gaggle of girls came up to me, and one said that I was "fabulous," and another said she loved my dress and shoes. Suffice it to say, I now (sort of) know what it feels like to be a boy band member. They were all just so inquisitive and shared their feelings and thoughts with me, and I was amazed. The last time I was among that many junior high schoolers, they didn't give me the time of day and I was as good as invisible...but now, I was someone they respected and felt comfortable talking to. What a difference. I definitely, definitely want to speak at more schools in the future. I can see now how much this sort of thing is needed, and how open the kids are (or can be) to it, and so I've got to keep doing it.

By far, however, the most incredible thing occurred after the first morning assembly, with the eighth graders. Joanne and Peter Faustino, the school psychologist, brought Nicole and me to a conference room in the middle school building for lunch. After we finished eating, the four of us went on a walking tour of the campus. As we traversed through the halls and outside past the buildings, the eighth graders actually waved to me from their classroom windows! When we were in the hallways, they'd call out to me: "Hey, Amy!" / "Great job today, Amy!" / "You did an awesome job, Amy!" / "I really liked your speech!" It was beyond surreal. Maybe eighth grade was just a long time ago and my memory is faulty, but I can't remember us kids paying a lot of attention to assemblies when they were going on, let alone giving them a second thought afterwards. So this was above and beyond anything I could've ever imagined. Joanne also asked me to come back again for more gigs, including speaking to the high school students, and I can't wait to do so.

Later that evening, I had another speaking gig, this one at a meeting sponsored by a parent group called Stamford Education 4 Autism, and based (obviously) in Stamford, Connecticut. Robin Portanova, the woman who'd contacted me and Nicole, had also invited my parents to attend, and asked my mother to say a few words, too. In addition, she'd told us that she planned to treat us to dinner! So, we all met up at a restaurant called The 19th Hole, which was just down the street from the school where the meeting was taking place. I had rigatoni with mild and hot sausages in a marsala sauce. I hadn't been sure whether to order that or the pasta primavera, but as soon as I took one bite, I knew I'd made the right choice. The bread on the table was also delicious and made a terrific accompaniment.

The meeting itself began shortly after 7:00pm. Robin spoke first, and after the school principal said a few words, Robin then introduced my mother. My mom spoke for ten minutes, and then it was my turn. Once again, I read the Letter to my Younger Self, and again, I received a round of applause at its conclusion...but I also noticed that there was nary a dry eye in the house. At the conclusion of my speech, Robin gave me a bouquet of flowers wrapped in purple(!) tissue paper, and she gave flowers to my mom and Nicole as well. We finally departed around 9:30, and I got back to Jersey about an hour and ten minutes later. I was dead exhausted upon returning home (having been up since 6 that morning), but it was well worth it. I had honestly expected to just be tired at the end of the day, but I was so jazzed from the school assemblies that the high those kids' reactions had given me carried me through the rest of the day (which only got better at the parent meeting).

Happily, I brought my videocamera with me, and Nicole videotaped the entire 8th grade assembly (including the Q&A), and the parent group speech (including my mother's portion). Once this week ends and my semester is over (and I actually have the time to fiddle with it), I will try to get those uploaded soon and I'll share them with you all here on my blog.

So keep your peepers peeled for that, and please--if you work in a school district, or know someone who works for a district, or are a parent, strongly consider having me come to speak at your school, either to the faculty and staff or the students (or both!). I don't mean to toot my own horn here, but the reactions I got from students, staff, and parents alike last Tuesday galvanized me in a way that I never have felt before. I believe that I can make a difference, and I want to help in any way possible. And if you're worried about budgets or money, don't fret--my fee is negotiable based on the needs and ability of each organization/district. Our kids and adults with autism and Asperger's syndrome need us now, people. We need better trained paraprofessionals and teachers, and a student body that is aware of the youths with autism among them, because they are being so mainstreamed now.

When I spoke in Edison, NJ on April 23rd, during the Q&A, a woman asked me a question. She said that she has a daughter with autism who is about 7 years old, and that she's tried to talk to her school principal about educating the other kids about autism, because they've already begun to bully her daughter. The principal didn't think that the kids were ready to know--he thought that they were too young and that finding out that this woman's daughter had autism could backfire and make things worse. She asked me if I agreed with what her principal said, and my exact words were, "It's a load of horse pucky." Why? Because if kids are old enough to bully, they're old enough to learn. If they're old enough to recognize that someone is "different," than they're old enough to know why. Plain and simple.

This is why I believe so strongly in speaking at the schools, to the students. They're ready for it. Heck, they're more than ready for it--they need it. And kids know from a mile away if you're trying to b.s. them, which is why I believe the students in Bedford responded so strongly to me--because they knew I was speaking from the heart. So I just hope that more districts will give me a chance to come in and keep doing this, because I know that I have the ability to do great good. Autism doesn't last for just one month; "awareness" is always needed, all year round.

A Letter to My Younger Self

2009-04-26T19:12:00.003-04:00

I recently received an e-mail from a reader of my blog, who wanted to know what sort of advice I could give to her 9-year-old daughter, who had recently been diagnosed with Asperger's syndrome. The e-mailer gave a very thoughtful suggestion, which was that I write a blog entry in the form of a letter to my younger self, which could then also serve as advice for current parents of children with AS.

I personally was not diagnosed until age 10, but I remember very clearly the loneliness, confusion, and frustration that come to define my life at that time, and how I had no one to turn to back then, no one who could tell me that it was going to be okay. A simple truth of pre-adolescence and teenagedom is that we never believe adults or anyone who tells us that everything is going to be all right. Not because of a lack of trust or innate cynicism (hey, it takes at least a few years to build up to that), but because it's just impossible to think that anyone could understand what we are going through. Well, I am someone who does know, and there are many things I would want to say to my younger self if I had the chance. I know that I can't save that girl, the younger me of long ago, but perhaps I can help a girl very much like that one right now. So, without further ado, here is my Letter to My Younger Self.

"Dear Amy,

I know you're feeling pretty bad right now. The other kids make fun of you a lot, and you don't know why. You're trying really hard to be friends with them--doing all of the things you think they want you to do, and it's just not working. But there is one thing you should know: It's not your fault. Other people might say that, and you won't be able to listen to them; but I am hoping that you will if it's coming from me. It's not your fault. Say it over and over in your head when you feel the worst, because that's when you'll need it most.

It's not your fault. How can it not be your fault? you'll say to yourself as the next few years go by. Everyone else can do this, can make friends, and be normal. Why can't you? That's just one of the many questions I know you have, questions you don't know how or are afraid to ask. They make you feel overwhelmed, like sitting in Mrs. St. Pierre's classroom every day, fidgeting nervously in your seat. You always get up during class to sharpen your pencil, and I know it's because you enjoy the smell when they're freshly-sharpened--it calms you down. So don't feel bad if the other kids snicker or laugh when you smell your pencil. They just don't understand.

You care a lot about what the other kids think of you. I know you hate going to Pool every week because you have to change in the locker room, and the girls make fun of your feet. This will cause you not to feel comfortable wearing flip-flops for many years, and you won't be okay with wearing them again until you're much older. It'll be like that with a lot of things people say to you in school--their exact words will fade from memory, but the effects they have on you will last a long time. But don't worry--one day you're going to make friends with someone who really loves your feet and will call your little toe, the one that didn't grow in right, your "Lucky Toe."

That's something you feel like you could use a lot of right now--luck. You keep hoping things will get better, but they never do. I have some good news, though; you won't lose that hope. No matter what happens, you'll still be optimistic--foolishly, maybe, but when you're older, people will tell you how wonderful it is that you are that way.

But I have to be honest with you: things are going to get a lot worse before they get better. You'll be in junior high school soon, and you don't know it, but seventh and eighth grades will be two of the worst years of your life. Once again: it's not your fault.

You like to look at things outside the window--the trees and blue sky make you feel calm. One day you will be in study hall, and you'll go right up to the window and stick your head out of it. That's when someone will tell you to jump. Other voices will join in, and even after the teacher finally tells everyone to be quiet and calms things down, you'll hear them in your head for a long time to come. Every day, someone will make you feel less. Not human. Unwanted. And you'll keep your head down and take it, because no one's going to tell you anything different.

But I will. You're not less, Amy. You're more. More because you have to work twice as hard as everyone else to make your voice heard. You don't know how to fight right now, except for when you lash out after not being able to handle the pain anymore, and then it's you who gets into trouble, rather than your tormentors. They know how not to be seen, to avoid detection. You don't. Even as an adult, you won't quite fully master the art of subtlety, but right now, you're bared to the world. Completely vulnerable. And your classmates are taking full advantage of that fact. They know how to hurt you in the worst ways, so they can get their jollies from your reactions. You can't understand what they're doing, and you just play straight into their hands, every time. Once more: It's not your fault.

These days, your classmates call you names--ugly, freak, psycho, loser. Retard. They call you these things because they don't know you, don't care to and/or don't want to. You're trying so hard to force yourself into their world, with little to no success. But you will have friends one day, Amy. Better still, you won't have to fight for their friendship--they will come to you. I know how unbelievable that seems, especially since you feel like no one wants to be around you at all, not even your parents. But you are loved, even if you don't realize it. You just have to learn how to love yourself.

There are some things that you are good at, Amy. Like writing. You just started writing some poems, and were happy when you saw them published in the local paper (your mom and dad sent them in for you, just in case you were wondering how that happened). I have three words of advice for you: Keep doing it. Right now, you write because it's an escape from the world around you, and you don't care about being "good" at it. You'll get a bit of a competitive streak in eighth grade—when you'll come in second place in the Charles Dickens poetry contest, and will be angry at yourself for not winning—but writing will become an important part of your life after that. In fact, one day you won't just be writing for yourself--you'll be writing to help other people. And your writing will help people, even when you don't realize it. So you've got to keep at it.

It's hard to think that you're good at anything when people are constantly telling you that everything you do and are is wrong. In middle and high school, your fellow classmates will tell you to your face to kill yourself, and that no one wants you around, or would care if you were gone. Don't listen to them. I know it's difficult, and their words will go right into you, but they aren't worth it. You are a good person, a person worth having around, and you'd make so many people sad if you were gone.

The world is going to need you when you grow up, Amy, so you have to get there. You have to make it through these dark days, because you're going to make a difference in the future. Someday, people will want to hear what you have to say, and you won't believe it, at first. But it will be meaningful, and wonderful. You're going to have to take a lot of crap and go through a lot of pain to get there, but I promise you, it will be worth it.

My time with you is now growing short, young Amy. I hope that some of the things I've said have brought you comfort, or at least given you assurance that there is, indeed, light at the end of this tunnel. In short: things will get better. A lot of people will say that to you, and you'll think that they're crazy or just trying to make you feel better, but it's really, honestly, true. You're an incredibly special, talented girl, and right now you're toiling in obscurity (as so many great artists do), but someday the world is going to see how amazing you are, and all you'll think is, "Where were you people when I was younger?"

The future seems far away, almost impossible to think about, but don't be afraid to think about it. You're not even sure if you're going to have one, but you will. You will. And I will say to you now three words that you don't hear very often (even when your mother says them to you). Three words that you'll be desperate to hear when you get older, especially from an aesthetically gifted member of the opposite sex, but that seem very off in the distance right now: I love you. I love you, my younger, high-strung, spastic, uniquely wonderful self. And I'll be here waiting for you. See you in fifteen years!

Love and Many, Many Hugs,

Your 26-year-old Self."

Edison School District - "No Parent Left Behind" night

2009-04-25T07:04:00.001-04:00

So, as most of us know, April is Autism Awareness Month, and it's the month of the year in which I seem to receive the most business, public speaking gig-wise. This coming Tuesday, for example, I have two(!) speaking gigs: one in Bedford, NY with middle- and high-schoolers, and one in Stamford, CT with a parent group. Last Thursday, I spoke at Edison High School in Edison, NJ as part of their "No Parent Left Behind III" night. There, I delivered the keynote address, and a short Q&A session followed. My business manager, Nicole, was kind enough to film the talk for me, and I uploaded the video yesterday. So, here it is, my keynote address at Edison School District's "No Parent Left Behind III" night on April 23, 2009 (click to open in a separate window if you can't see it full-size here):

If you'd like to pass it on, the URL is http://www.megavideo.com/?v=3143Z11X (I had to use Megavideo because it's too big for Youtube). Thanks, and please be sure to let me know what you think!

Thoughts on the Abandoned

2009-03-04T16:24:00.004-05:00

This morning, I saw on my Facebook friends list that someone had posted a link to photographs of old architectural buildings, hospitals and other facilities left to fall into disrepair when they were decommissioned from use. The photographs were wonderful, eerie and spectacular, and looking at them felt like walking into the past. At the same time, though, a crawling fear slowly worked its way up my spine, because some of the buildings that were photographed were once insane asylums and hospitals for the mentally ill. The rooms were dark, narrow, some with only small peepholes out of which to catch a glimpse of the hallway and the world outside.

Many of these hospitals were for violent inmates, but I could tell that they'd also housed those with mental illnesses such as schizophrenia, dissociative identity disorder, manic depression, and many others. The gnawing pit in my stomach heightened to almost deafening proportions when I realized one other population that most certainly would've been found in these facilities in years past: individuals on the autism spectrum.

It's well-known that, in the '50s and '60s, a diagnosis of autism was almost immediately followed by the words, "Have your child institutionalized." There was no thought of an autistic child remaining at home with their family. These children were seen as hopeless, and they were sent to where society locked away all of its monsters, to a mental institution. Looking at the pictures that I saw, the tiny cots supported by rusted bed springs, sparsely furnished "rooms" with little to no light, and the almost pervasive presence of varying shades of blue on the walls of the common areas, I could not help but think that any sense of hopelessness would be intensified by these places, or maybe wouldn't even begin until after these individuals were sent there. One photograph that particularly haunted me showed a view of the Statue of Liberty in the background, seen from behind a pane of partially broken glass. Not a more powerful symbol of the institutional experience exists, at least that I have seen.

At one point in the not-too-distant past, someone told my parents to have me institutionalized. I don't know who this person is, as my parents won't tell me, but all I can think is that if even one voice would still proffer that as a solution now, there would have been a unanimous choir of voices twenty, thirty, forty years ago. I doubt I would have even been properly diagnosed back then, but the decision to lock me away would go unquestioned. I'm not saying that my parents would be that way, but society as a whole did not want people like me walking around freely in the daylight, and would have kept me locked in the dark for the rest of my life.

I tend to often harp about being born in the wrong time period. Indeed, I am an ardent lover of all things retro, and I would still build a time machine and travel back to the late '60s if I could. But the fear still plagues me. I'm able to more or less "pass" now, at the age of 25, as a "normal" person. If I were given the choice, however, to be a young person in the '60s, I would want to be a neurotypical one, because all of the things that I'd want to do, things that I am capable of doing now as a person with Asperger's, I do not think I could do back then, unless I were neurotypical. The only way I can see this being otherwise is if I were a part of the counterculture movement, because I know there's no way I could fit into the mainstream. I think that is why I've always felt so drawn to the '60s, because the hippies were the misfits of the time, the ones who didn't subscribe to the ideals and preconceived notions set forth by society. That's sort of been my experience my entire life, and I believe I would've felt at home among them because we'd be such kindred spirits.

I realize how convoluted everything I'm saying sounds, and it does bother me that I even feel like I would need to be neurotypical for any reason, but to me, it seems to be the only way I could survive under certain specific circumstances. I'm incredibly lucky and fortunate to even be as well-off as I am right now. There are so many things that could have led to my downfall in the past, but I've managed to stay on course. Even one misstep, one wrong person in my life or my parents' life who could've influenced them and convinced them to give up on me could have led to me being in one of those places in the photographs. There are still moments, even now, when I see what might have been and shudder with the knowledge of how, historically speaking, I am still within a hair's breadth of those empty rooms. When I looked at those photographs, I could feel the cold air in those rooms enveloping me. I think in some way I will always be running from that, always looking over my shoulder, hoping that it's far behind. Praying, silently, that I manage to escape that old fate, before it catches up with me.

"I Can Cook, I Can Write" - Now in the Spring '09 issue of ASQ!

2009-02-28T23:55:00.007-05:00

Hello, folks! Just days after I put up my last blog entry, I received my copies of Autism Spectrum Quarterly in the mail! So, as promised, I am now posting my article, titled "I Can Write, I Can Cook: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence."

I know that prenatal testing is somewhat of a controversial topic, and while it is not the heart of my piece, it does play a strong role in it. The genesis of the piece actually came after a post I'd read on a message board months ago that referred to individuals with Down's Syndrome as "glorified pets." The same person who wrote that also pondered why anyone would want to bring into this world "someone who will never be self-sufficient." Those words pierced me like a blade, as I am not yet what one might define as "self-sufficient," and I wondered then how many people, both in the past and now, have or would call my existence into question because of that. So this piece was born of that fear, that pain, and my desire to redefine what "self-sufficient" really means.

Also, if anyone is wondering, yes, I did write a blog about this, and that blog is what became this article. I've edited it and tweaked it a bit since the original writing, so the finished product is different from the initial blog that I wrote.

So, without further ado, I present you now with my article, "I Can Cook, I Can Write: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence," currently featured in the Spring 2009 issue of Autism Spectrum Quarterly:

Page One

Page Two

EDITED TO ADD: Here is the original text, for those having difficulty reading the article (I apologize if anyone has had trouble with the jpegs).

"I Can Cook, I Can Write: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence"
by Amy Gravino

Let me tell you a little story.

Then

Many years ago, I attended a meeting. It was one of several, actually, but each one was the same. I sat in a conference room at my old elementary school, my parents on either side of me, and the director of special education at the head of the table. The other faces at the table shifted over time, but those I remember most were the school psychologist and guidance counselor in elementary school, and the speech-language pathologist in middle and high school.

At this particular meeting, I was 11 years old and right in the middle of fifth grade. I knew very little about what the adults around me were discussing, or why I was there. Words like IEP didn't mean anything back then. Only the grass and the long, asphalt path outside the window caught my attention, flanked by the red, yellow, green, and purple-painted walls of the school building. The sun was so hot that I could “feel” the heat radiating off the pavement. The light was so bright that it hurt my eyes, in stark contrast to the darkness in which I sat. My ears strained to listen to the sound of children's voices off in the distance—the sparkling, youthful laughter I longed so much to be a part of, but could not.

What I did not know then was that phrases of abject hopelessness were being whispered into my parents' ears, phrases like—sheltered workplace, special school, will never go to college. I sat there, oblivious to all of this, not having any idea of how little faith the people who were supposed to be looking after me had in my abilities. No one in that meeting—or any meeting before or after—spoke a word to me, or asked me how I felt. Perhaps I would not have been so articulate in my response, but what mattered most was that they acted as if I was not capable of responding at all. How could they know what I could or could not do—or how I felt or what I thought—if they never asked?

Now

I am 25 years old. I’ve graduated from high school, along with the rest of my peers. I went on to college for four years and obtained a Bachelor’s degree in English. I'm now in graduate school working toward a Master of Arts degree in Applied Behavior Analysis. I cook. I shop. I do my own laundry. I drive. I write. I speak publicly at conferences, workshops, and meetings. I tell jokes. I can still fit into my original purple Cabbage Patch slippers from the '80s. I tutor undergrads in the writing lab at school. I'm writing a book about my experiences in the world of relationships and dating. I can program pretty much any electronic device without looking at the instructions. I moved 3,000 miles away from home and lived on the other side of the country for two years. I memorize phone numbers and lyrics to entire Broadway musicals. I travel.

BUT, I do not pay my own bills, and I do not have a "regular job." My parents pay the rent for the apartment in which I’m living in New Jersey. Despite all of the things I've mentioned that I CAN do, I am not (yet) self-sufficient. I can’t help but wonder—is self-sufficiency the standard by which I (or we) are judged?

"Collateral Damage" in the Quest for Prenatal Testing

There are those who advocate for prenatal testing who would look at a person like me, and instead of seeing my accomplishments and all that I’ve achieved, focus only on what I’ve failed to do. They would argue that I should not exist, that I am a drain, both on the economy and on my parents. A waste—at least that’s how it seems.

I have struggled for a very, very long time. Although I have not had to do so explicitly, I have, in many ways, had to fight for my right to have dreams; to contribute to the world; and, yes, to exist. There is no way to describe how I feel when I consider that there are people in the world who would be happy to do away with my existence; that they, or anyone, could feel that because I am not self-sufficient, I should not exist. Those people in that meeting years ago—those so-called experts—believed that I would never be self-sufficient. I admit that I am not there yet, and I have to deal with the constant fear of perhaps not getting there, and the self-doubt that plagues my thoughts from time to time, especially late at night when I’m lying in bed, unable to sleep. But I still have hope that I will get there.

For those who think my thoughts resemble a science fiction film depicting a far-off and dystopian future, consider this: ninety percent of fetuses detected to have Down syndrome in prenatal testing end up being aborted. Individuals currently living with Down syndrome deal with many difficulties, to be sure; but I envy these individuals for one reason and one reason only: the obviousness of their condition. Down syndrome is characterized by an appearance that is visible to the human eye, and because of that, the difficulties of those with the condition are recognized and understood. And while I don't envy the stares that some of these individuals may attract, or the rude comments that they and their families may have to contend with, I applaud their ability to be who they are, no matter what, especially in a world that calls into question their right to exist simply by creating medical tests that all too often result in their eradication.

Unlike people with Down syndrome who cannot hide who they are, I wear a mask of "normalcy." But it doesn't change who I am. It doesn't change the fact that sometimes I feel sickened by myself, and the fact that my parents are supposed to be enjoying their retirement years, instead of continuing to support me. I know that they are happy to do it. But, even so, the guilt persists, and it is exacerbated by the fervent race for medical tests that can detect autism in utero.

I have often wondered if my parents would have aborted me if they had known that I would be born with Asperger syndrome; if they had known that 25 years down the line, I still wouldn't have a "real" job. These and so many other questions are even more difficult to ignore with the rapid development of a prenatal test to determine if a child has autism.

These are complex issues, faced not only by individuals with autism and Asperger's and their families, but also by individuals with Down syndrome and their families. In my opinion, it is a foolhardy endeavor to boil these issues down to a few chromosomes and medical tests, especially when it places many of us with autism and Asperger’s syndrome in the position of having to fight for our right to exist.

Editor’s Note: Amy’s interview by Liane Holliday Willey appeared in ASQ’s CEO column in the winter 2008 issue of ASQ.

Book News + An Exciting Conference Coming Up!

2009-02-23T16:17:00.007-05:00

I can't believe I haven't updated since December. It's not that a great many life-shattering events have occurred since then (they haven't); but it's a new year now, and it just isn't right that I haven't rung it in here on my little blog of bloggishness.

The first bit of news I can share is that I've (finally) created a schedule for writing my book. My mom came over a few weekends ago, and we sat down and mapped out which chapters I'm going to write during each week. I have these color-coded printouts of every month from January to May hanging neatly up above my desk. The goal is to have the writing itself done by April 1st, and the editing done by the end of May. This is all provided that I stick to the schedule, which is a hell of a lot easier said than done. But I will try my best.

In other news, the article that I wrote for the Spring 2009 issue of Autism Spectrum Quarterly has finally gone to press! It's called "I Can Cook, I Can Write: Prenatal Testing, Asperger Syndrome, and the Journey to Existence," and you can read a little blurb about it here: http://www.asquarterly.com on ASQ's website. I'll post the full article up here, as was done with the last one, once I have a copy of it and have it online.

I have some other things I'd like to write about, but I'm going to reserve them for a future entry and instead take a moment to tell you all about a great event that's coming up. Caldwell College, where I attend graduate school, is having a conference in April titled, "Innovations in Autism Treatment and Applied Behavior Analysis: A Conference for Professionals, Teachers, Parents, and Caregivers of Children with Autism." It will feature over 10 professional luminaries in the field of behavior analysis, including Dr. Bill Heward, BCBA; Dr. Gina Green, BCBA; Dr. Gregory MacDuff, and more.

The conference is scheduled to take place on two consecutive Fridays; April 17th and April 24th. For more information, including registration details, click the banner below:

I know it may seem slightly stodgy and more research-based than many parents find accessible, but I cannot recommend this conference highly enough. These speakers are all incredibly well-versed in ABA, and believe in working toward the goal of helping to improve the lives of individuals with autism and their families. That's where the "applied" in "applied behavior analysis" comes in. These people aren't standing in a cold laboratory all day long. They're going out into schools and other settings in the community, working with paraprofessionals and parents alike to heighten the quality of life for people with autism. Anyone who's looking to learn more about ABA, or to keep abreast of the latest autism research developments will not want to miss this conference.

Attendees have the option of registering for one or both days of the conference, and if you register for both at the same time, there is a reduced fee. To see the full conference brochure, click here (you must have Adobe Acrobat to view it). Make sure to register as soon as possible, because registration fees increase after March 1st. So go get a-clicking and sign up today!

This is the Voice In Your Head Speaking...

2008-12-29T02:42:00.015-05:00

Something occurred two weeks ago, and it's been bothering me since it happened. Not as much now as it did then, but it still weighs on my mind. On December 15h, I spoke at an Asperger Women's group at an autism center on Long Island. Over the last few months, I'd been corresponding via telephone with the woman who runs the group, trying to find a date that worked for me to come in and speak to the group. She seemed like a nice enough woman, and I was happy to have been asked to act as a guest speaker. When I got there, however, it was a different story.

I first went into the woman's office so we could discuss what I would be talking about in the meeting. She and another woman who co-runs the group were there, and at first, they seemed perfectly nice and eager to have me speak to the group. But the primary woman kept insisting that I say something to the women along the lines of how I was told that I could join the group, but felt that I wouldn't be able to because of the distance, and so I chose to speak at it instead. I understood her reasoning for this after she told me that the women in the group questioned why I was speaking to them instead of being a member myself. That made sense to me, to try and appeal to the women and not alienate them, but I couldn't and still don't understand why this woman seemed to be treating me as though I were like the other women in the group, and not someone who'd come to speak to them.

I need to explain that last part more clearly, because I know it sounds strange the way that I said it. I do not, in any way, shape, or form, think that I am better than the women who are in that support group. The reason that I no longer attend support group meetings is because I never really felt like I fit in at them, and although they did serve a purpose at one time, I am no longer at a point in my life where I would need a support group as that type of resource. I have friends with whom I speak and share my triumphs and woes, not to mention the fact that I also tell my parents pretty much everything. So I'm no longer at a juncture where a support group would be of great assistance to me, but in no way am I demeaning the value of the group to these other women. I would rather another person be in the group instead of me, if they could get more out of it and have it be more useful to them than it would be to me.

That said, I tried explaining all of this to the woman, but I don't know if it really got through. She kept saying to me that I should tell the women how I still have my own issues to work on--which I do, this is true, and I can understand it being said for the purpose of inspiring a spirit of camaraderie and friendship--but I felt like her point in saying it to me was for a different reason. She just kept reminding me that I'm "one of them" ('them' being the other women in the group) and that I could come to a meeting anytime to work on my issues. Weirdness abounded as her repetition of the phrase grew, and I became ever more uncomfortable.

I know that I'm not what one might call an "authority" on anything. I have no capitalized letters after my name, nor any really notable accomplishments to speak of up to this point. But why on God's green and verdant landscape would she ask me to speak to this group of women if she didn't think I had something to share with them? If she didn't think that I've achieved something that they haven't? If I really am "one of them," then I should be sitting in that group engaging in what certainly felt like organized and staged dialogue; conversations facilitated by neurotypical puppetmasters. If there's one thing I despise about any support group that is run by individuals not on the spectrum, it's that: the almost plasticine need to force conversation between the group's participants. Their intentions are all well and good, to be sure, but it still irks me to have to listen to their tones of voice sounding so faux enthusiastic.

Maybe I am reading too much into this and misunderstanding it all, as per usual. But my encounter with that woman has made me question everything about myself and my so-called "expertise" as a public speaker. The truth is, when it comes down to it, the most important thing isn't what that woman or any other group facilitator thinks of me; the most important thing is if I was able to reach the participants in the group, if I was able to make sense to them and help them in some way, even a small way. I've never encountered a situation like this before, where I felt a sort of lack of respect coming at me from the facilitator of a group. I know that I'm on the spectrum, but I'm there speaking to other women who are also on the spectrum, and frankly, I think I'm better equipped to be running that group than that woman was. Call it blasphemous or crazy if you like, but how or in what way could she know how to talk to those women or get them to open up better than I could? I don't know. I just don't know.

I fear now that perhaps I am not being taken as seriously as I thought I was; that teachers in schools or support group leaders don't see me in the light that I thought they had. The director of Special Ed in the Port Jefferson school district hasn't contacted me since I waltzed into his office over the summer with my curriculum vitae. Yet, I heard from my father that a woman he ran into recently (who used to be the tenant in our old house that we rent out and who was one of my nurses in elementary school) had herself run into this man, and he'd been raving wildly about me. Maybe I'm a little slow on the uptake here or not quite understanding this all clearly, but I don't see how the guy could be raving about me when he hasn't spoken a word to me, electronically or otherwise, since August. Sigh. Respect, people. I don't think it's too much to ask for.

In other, far more random news, I got straight-As this semester (I got an A- on my research proposal paper, which is going to be the foundation for my actual thesis next year) and my GPA is up to a 3.53. I also have received news that the ARTS documentary that I'm in is locked and finished, and will be out on DVD in mid-January. So look for more tasty tidbits on that in here as I find out more info. I've also gotten back in touch with the literary manager in Los Angeles with whom I worked on ARTS, to seek her assistance in breaking into the world of television, and she's agreed to help me in any way she can. So, while I may not quite be ending 2008 with a bang, I think 2009 is going to get off to a rollicking good start. I'm just tired of things happening on other people's terms rather than my own, and so I think 2009 is going to be about making that happen. I just wish these bumps in the road with doubting myself and my abilities would go away for good. All in good time, I guess. All in good time.

Controversial Conferences, An Interview, and a Really Big Move

2008-12-03T03:18:00.024-05:00

My last update came over a month ago, and now Thanksgiving has already come and gone. Unbelievable! And so much has happened since I last posted here. In just the week after the Herstory 12th Anniversary Gala reading, I spoke at two more events: the Special Day for Special Kids at the West Hills Day Camp in Huntington, NY on October 26th, and the New Jersey State Federation of Women's Clubs Annual Fall Conference at the Bridgewater Marriott in Bridgewater, NJ on October 27th. In the weeks that followed, I spoke at a social skills group for adults on the spectrum at the JCC in Manhattan, and then at an Asperger Girls' group at the Faye J. Lindner Autism Center in Bethpage, NY.

Conference-wise, I spoke on the "Transitions to Independence in ASD" panel at Kean University's "Autism: Putting the Pieces Together" conference on November 21st. I had never even heard of the university or the conference until my business manager Nicole told me about it. She had initially asked if I wanted to vendor a table with her, as she was going to reserve a vendor table for her company, Learning By Design, LLC. I readily accepted her offer, and that was when she told me that she'd spoken to the woman running the conference and had told her about me, and now there was a possibility that I'd get to speak on one of the panels. We waited a little longer, and after not hearing back from that woman for a few weeks, I took the reins and sent her an e-mail myself, expressing my interest. She responded, saying that she'd love to have me speak at the conference on the "Transition" panel. The rest, as they say, is history.

Now, this conference was different from ones I'd attended in the past, in that the keynote speaker was a proponent of DIR/Floortime, an autism therapy created by Dr. Stanley Greenspan. In fact, the speaker was his own son, Jake Greenspan. I knew from my classes at school that there is no scientific evidence that validates the claims made by Greenspan. Indeed, there is not one empirically validated research study attesting to DIR/Floortime's effectiveness. But, I felt it best to go into the conference with an open mind, and I had not been shy about mentioning my affiliation with Caldwell College and the ABA program when asking to speak on the panel, so the fact that they wanted me to speak there had to mean that they were willing to welcome other disciplines and those who subscribe to them. That did make me feel more comfortable with being there.

My comfort level slowly started to decrease, however, when in his speech, Mr. Greenspan took a few shots at the methods and practices of ABA. Of course, he made a (thinly-veiled) attempt to disguise the fact that it was ABA about which he was speaking, but Nicole and I knew the truth. Now, I'm not one to take pot shots back at someone, but the whole time I was sitting there, all I could think was, "This guy is saying things, and at the same time, not saying anything at all!" It was baffling. I'd been surprised enough when he first came out onstage; I was expecting an older, bespectacled, somewhat nerdy fellow, perhaps one who wore a brown corduroy blazer. But, Jake Greenspan was, in fact, a hunky piece of man-beef to the nth degree. I was stunned. What was this could-be GQ model doing delivering a keynote speech at an autism conference? It didn't take me very long to catch on, though. He was a figurehead, a puppet for his father sent to represent him and his creation, DIR/Floortime. After all, who better to have standing onstage before an audience than a dashing young man who could easily woo and sway the masses? A very clever ploy, indeed.

Let's get one thing straight, though: this is not about finger-pointing or feuding. There are too many families, too many children and adults with autism spectrum disorders who need help and answers, to engage in petty, childish rivalry. That's what really grated my cheese about Mr. Greenspan's comments; instead of encouraging a partnership, instead of urging differing schools of therapy to work together and cooperate, he furthered an agenda of division and animosity. It's really just sad, because it's individuals on the spectrum who are losing out in the end. I'm not a saint by any stretch of the imagination, but I intend to do my absolute best to rise above trading jabs at conferences and vying for professional or personal glory. That's not what I care about. My interest lies solely with doing everything I can to raise autism and Asperger's syndrome awareness, and to help the people who are here now, fighting to survive in this world. That's what matters most.

A large part of the reason I haven't updated in so long is because on November 5th, I moved from my old apartment in Caldwell to a new one in Upper Montclair. I'm now living with one of my best friends, Dan, who is from Long Island. I feel that where I am now is a major upgrade from where I used to live, both physically and psychologically. Before, I was just renting a room in a house; now, the whole space (a third floor of a house) is mine (and Dan's). It's so relieving to be able to stretch my wings at last, and to be rid of the stressors that plagued me over the last few months. I'm still settling in and getting used to things, and the fact that this move was in the middle of the semester made things really hard, but it's becoming easier, bit by bit. I think this place is going to help me be much more productive, in terms of both writing my book and carving out a career as an autism liaison.

Finally, I have one more thing to share with you all: I'm in print again! I was interviewed by Liane Willey for the Winter 2008 issue of Autism Spectrum Quarterly magazine. Diane Twachtman-Cullen, the magazine's Editor-in-Chief, accepted for publication an article that I wrote (it'll be in the February 2009 issue), and asked if I would want to be interviewed by Liane for the "C.E.O." (Celebrations of Excellence and Originality) column, as a lead-in piece. I readily agreed, and the issue is now finally in print. I haven't received my hard copy yet, but my parents got theirs a few days ago, and I had my dad scan the article so that I could disseminate it around the Interwebs (and I will do the same when the February 2009 issue comes out). So, here it is! (Click on the images to make them bigger.) If the thumbnails don't work, click here and here to read the article.

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Herstory 12th Anniversary Gala & Luncheon

2008-10-20T19:39:00.002-04:00

Yesterday, I read the introduction to my book, "The Naughty Autie," at Herstory's 12th Anniversary Gala and Luncheon, which was held at the Charles B. Wang Center at Stony Brook University. I think it went extraordinarily well, and I'm so happy to have gotten it on video so that I can share it with you all. The audio is also much clearer than that from the video of my Gersh Academy speech. So, without further ado, here is my reading (and if you'd like to pass it on, the link is http://www.youtube.com/watch?v=PRw6Qod9oG8):

My Article in the ASCEND Newsletter and Other News

2008-10-09T00:39:00.005-04:00

I am very happy to announce that "Miss Peach Strikes Out," the article I wrote for the ASCEND Fall 2008 newsletter, has finally been published! I received several copies of it in the mail courtesy of Deirdre Wright, the founder of ASCEND, whom I met at COSAC's annual conference in Atlantic City this past May.

So, without further ado, I am proud to present my article, "Miss Peach Strikes Out," and a sidebar that I also wrote, "The Naughty Autie's Top Five Dating Tips for Girls with Asperger's Syndrome," both of which are featured in the Fall 2008 of the ASCEND Newsletter.

Cover (my article title is circled in red):

Centerfold!

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Page Two:

~*~

In other news, I am also excited to announce that another article I wrote, "I Can Cook, I Can Write: Prenatal Testing, Asperger's Syndrome, and the Journey to Existence," has been accepted for publication in the February '09 issue of Autism Spectrum Quarterly magazine! I am also being interviewed by Liane Holliday Wiley in the "C.E.O.: Celebrating Excellence and Originality" column for the November '08 issue, as a lead-in piece. So I will post links to the articles here as they become available. Don't forget to look for the hard copy issues on newsstands, too!

In terms of public speaking engagements, I have several events that are occurring this month. On October 19th, I will be performing a reading at Herstory's 12th Anniversary Gala Luncheon at the Charles B. Wang Center at Stony Brook University in Stony Brook, NY. On October 26th, I am facilitating a workshop for parents of children on the spectrum at the Special Day for Special Kids event at the West Hills Day Camp in Huntington, NY. Finally, I am scheduled to speak at two social skills group meetings at the JCC in Manhattan; one on October 21st, the other on November 4th. I'll also be co-chairing, along with my business manager and friend Nicole Turon-Diaz, a vendor table at Kean University's "Autism: Putting the Pieces Together" conference on November 21st. There is also the potential that I may be speaking at the conference. I'll be sure to let you all know how that pans out.

This bears little repeating, but, I (obviously) have quite a busy schedule ahead of me these next few months. I'm also going through a bit of personal turmoil at the moment, trying to find a new apartment in which to live with my friend Dan, as my current situation is coming to a close and I'll need to move out of here soon. Sigh. So much to do, so little time. I'll see you folks at the next bend in the road.

Hire Me As a Motivational Speaker - Part II

2008-09-16T18:05:00.008-04:00

Hello all--I've created this flyer advertising my services as an "Autism Liaison" (click to see it bigger). Feel free to pass it on to whomever you feel may benefit from this information. The flyer is also available in .pdf format, for those who are interested. Please leave a comment if you do want it in .pdf format and I will get it to you as soon as possible. Thanks!

The Journey to Existence

2008-09-07T18:17:00.007-04:00

Now more than ever, the debate is raging over the advent of prenatal testing for autism. Already, prenatal testing exists for Down's syndrome, and approximately 90% of Down's syndrome fetuses are aborted. One of the biggest concerns among those in the autistic/Asperger's-rights movement is that if/when prenatal testing for autism comes to fruition, that autistic fetuses will be aborted at the same rate as Down's syndrome fetuses.

I'm a member of a messageboard for fans of the director Kevin Smith. Last night, a member of that board made a thread in the off-topic forum titled, "Would you abort a pregnancy due to fetal Down's syndrome?" Rather than engaging in a sound, rational discussion, the person who started this thread resorted to tactless and emotionally charged statements such as, "I see no good reason to sire an individual who will never be self-sufficient" and then later in the thread referred to individuals with Down's syndrome as "glorified pets."

Suffice it to say, this thread struck a chord in me. I felt a real need to stand up and say something, and so I did. I think that what I wrote is quite germane to the topic of prenatal testing, and so I have edited my response and submitted it to the magazine/journal Autism Spectrum Quarterly for publication. For those wanting backstory, here is a link to the thread. Here now is what I originally posted in the thread:

"Let me tell you a little story.

Many years ago, I attended a meeting. It was one of several, actually, but each was the same. I sat in a conference room at my old elementary school, my parents on either side of me, and the director of Special Ed at the head of the table. The other faces at the table shifted over time; Dr. Stolzberg, the elementary school psychologist; Mrs. Sigda, the guidance counselor; Mrs. Levin, the speech-language pathologist in middle and high school.

But I was 11 years old at this particular meeting, right smack dab in the middle of fifth grade. I knew very little about what the adults around me were discussing, or why I was there. Words like "IEP" didn't mean anything back then. Only the grass and the long, asphalt path outside the window caught my attention, flanked by the red, yellow, green, and purple-painted walls of the school building. The sun was so hot that I could feel the heat radiating off of the pavement. The light was so bright that it hurt my eyes, in stark contrast to the darkness in which I sat. And my ears strained to listen to the sound of children's voices off in the distance; the sparkling, youthful laughter I longed so much to be a part of, but could not.

What I did not know then were the phrases of abject hopelessness being whispered into my parents' ears. Phrases like, "sheltered workplace," "special school," "will never go to college." I sat there, oblivious to all of this, never having any idea of how little faith the people who were supposed to be looking after me had in my own abilities. And no one in that meeting, or any meeting before or after, spoke a word to me, or asked me how I felt. Perhaps I would not have been so articulate in my response, but it was they who believed I was not capable of responding at all. How could they know what I could or could not do if they never asked?

I'm 25 years old now. I graduated high school with the rest of my peers. I went on to college for four years and obtained a Bachelors degree in English. I'm now in graduate school going for a Master of Arts degree in Applied Behavior Analysis. I cook. I shop. I do my own laundry. I drive. I write. I speak publicly at conferences, workshops, meetings. I tell jokes. I can still fit into my original purple Cabbage Patch slippers from the '80s. I tutor undergrads in the writing lab at school. I'm writing a book about my experiences in the world of relationships and dating. I can program pretty much any electronic device without looking at the instructions. I moved 3,000 miles away from home and lived on the other side of the country for two years. I memorize phone numbers and lyrics to entire Broadway musicals. I travel.

But, I do not pay my own bills. I do not have a "regular job." My parents pay my rent for the room in which I'm living in a house in New Jersey. Despite all of the things I've mentioned in my previous paragraph, I am not (yet) self-sufficient. And by your reckoning, Mr. Übermensch, because of this, I should not exist. I am a drain, both on the economy and on my parents. A waste.

I have struggled for a very, very long time. Although I have not had to do so explicitly, I have, in many ways, had to fight for my right to have dreams, to contribute to the world. And, to exist. There is no way to describe how I felt reading what you wrote. That you, or anyone, could feel that because I am not self-sufficient, I should not exist. Those people in that meeting years ago, those so-called experts, believed that I would never be self-sufficient. I admit that I am not there yet, and I have to deal with the constant fear of never getting there, the self-doubt that plagues my thoughts from time to time, especially late at night when I'm lying in bed, unable to sleep.

I know this reply is rather bloggish, and for that I do apologize, but this thread struck something of a personal chord in me. Individuals with Down syndrome deal with many difficulties. But I envy these individuals for one reason, and one reason only: the obviousness of their condition. The fact is that Down's syndrome is visible to the human eye, and when people see them, they know. And while I don't envy the stares and the gawking these individuals must contend with, the rude comments and questions which they and their families are no doubt bombarded with, I applaud them for being who they are, no matter what, especially in a world that feels they should not exist. They truly cannot hide who they are. I wear a mask, a mask of "normalcy." But it doesn't change who I am. It doesn't change the fact that sometimes I feel sickened by myself and the fact that my parents are supposed to be enjoying their retirement years instead of continuing to support me. I know they are happy to do it. But the guilt persists. And the last thing I ever expected or wanted was to find a thread on here that not only exacerbated that guilt, but even broadened it.

I have wondered often if my parents would have aborted me if they'd known that I had Asperger's syndrome. If they'd known that 25 years down the line, I still wouldn't have yet had a "real" job. And so I really have to marvel at anyone who can take all of these complex issues, issues faced both by individuals with Asperger's and their families, and individuals with Down's syndrome and their families, and boil it all down to a few chromosomes. I just hope that you'll never have to be in a position to fight for your right to exist as I and many others have had to do. I don't think you'll like it very much."

~*~

Ignorance is an ugly and difficult spectre with which to contend. All I really wanted was to make people think, even for just a moment. It's very difficult to shake someone out of their ignorance, and a fight over such things has nowhere to go but back and forth. What I want is to elevate people, to lift them up from where they are now and to show them something different. A view of the world that they've never seen before. That's why I'm in the field I'm in now, why I speak at conferences, why I'm writing my book. To educate people, to help them learn how to help people like me, people with Down's syndrome, people with all sorts of neurobiological disorders. That's one of the biggest reasons why the prenatal thing drives me bonkers--because as important as the lives of future people are, the lives of people who are already here matter, too. There are so many people speaking for the unborn, but hardly anyone is speaking for those who already exist but are not truly "alive," because the world has not given them the tools to be alive. So that's what I'm trying to do.

Edited to Add, for Clarification: I am vehemently pro-choice. I am not telling anyone not to abort a Down's syndrome fetus, and while I don't think I myself would have an abortion, I'll be damned if I'm going to tell another woman what to do with her body. I wrote what I wrote in response to the person in that thread calling individuals with Down's syndrome "glorified pets" and saying "I see no reason to sire an individual who will never be self-sufficient." My point is that he meant that Down's syndrome individuals aren't self-sufficient, but there are others of us on the neurobiological continuum who aren't, either; yet, people like me would never be seen as "glorified pets" (or at least I would certainly hope not). But his idea of self-sufficiency is one that reaches across the spectrum of disorders, not just Down's. So my point was that how long would it be before prenatal testing comes to exist for Asperger's and autism? Already, 90% of Down's syndrome fetuses are aborted. My fear is that rate applying to fetuses with autism and Asperger's if/when prenatal testing for those disorders comes to fruition. That's all that I meant. I certainly do not mean that I face the exact same issues as individuals with Down's syndrome. But I have had just as many struggles, and my point is that people with Down's are more recognized--people see them and know they have a problem. People don't see that with me, don't see that I might not be as high-functioning as I appear, and that's what makes everything harder.

Articles, Workshops, and More Book News

2008-08-07T20:03:00.014-04:00

On July 31st, I heard back from two literary agents who were reading over my book proposal. Now, I didn't actually mention one of them on here because I didn't want to jump the gun, and it's a good thing that I didn't. At the beginning of July, I received an e-mail from Christopher Schelling, who is the literary agent of John Elder Robison, author of Look Me In The Eye, and of his brother, Augusten Burroughs. I was stunned to hear back from Mr. Schelling--I thought for sure that I was going to get a rejection flat-out. But instead, he asked to read my book proposal. Flabbergasted, I emailed him a copy immediately, and he finally wrote back to me last Wednesday night.

Unfortunately, it wasn't with good news. He said that from the title of my book and the description, he was expecting more of a humor book instead of a memoir, and he didn't have enough material dealing directly with the subject of Asperger's and sexuality to understand what I am trying to do with the book. He also said that he wasn't sure if he could find an editor who could market it correctly, and so he's stepping aside to let another agent have a try with it. Naturally, I was depressed after I read his message. I thought, "Oh my God, I'm marketing my book completely wrong. How incompetent and idiotic am I? Nobody's ever going to want to take me on." I mean, the book is supposed to have humor in it--it deals with serious issues in a humorous light, so as not to make everything all doom-and-gloom. My writing has been described as Ernest Hemingway crossed with Erma Bombeck--that's where the serious-stuff-made-seriously-funny thing comes into play. But, it seems that Mr. Schelling didn't quite pick up on that, which is okay, and I'm still very grateful that he did get back to me and offered some great advice and suggestions. So I'll be writing back to him soon with a few words of thanks.

What pulled me out of the funk induced by his e-mail, however, was another e-mail that I received just half an hour later, this one from Liza Dawson, the literary agent with whom I met in the city on July 1st. First of all, I could not believe that both of them got back to me on the same night, within forty minutes of each other, no less. I swear, it's as if these people have some kind of mind-melding, telepathy thing going on or something. Anyway, Liza said that she liked my first chapter, but wasn't 100% sure that the structure I'd laid out for the book was right for it. She asked if I had some additional material that I could send to her, and said that she looked forward to hearing from me soon. So, I consider that a pretty good sign, if I may say so myself. She didn't say, "Oh my God, I loved it, I want to take you on right now!" but she didn't flat-out reject me, either. That's the only frustrating part, is that I'm not sure if she definitely does want to take me on, or isn't planning on having a final decision until she has more of my material in hand. It's nerve-wracking, to say the least. But, luckily, my summer class has ended, and Liza's going to be away until tomorrow, so I'm working on something that I hope to get to her by the time she returns. In the meantime, I'll keep my fingers and toes crossed that this might mean that we've moved on to the next step of the process.

In other news, I recently submitted an article to the newsletter for ASCEND, the Asperger Syndrome Alliance for Greater Philadelphia. I met Deirdre Wright, the founder of ASCEND, at COSAC's annual conference in May in Atlantic City, and she expressed an immediate interest in me speaking at their spring conference next year. We exchanged contact information, and a short time after the conference ended, she e-mailed me to ask if I would be interested in being paid to write an article for their Fall newsletter. I readily agreed, and also wrote a sidebar to accompany the article. The article itself deals with relationships and dating from the perspective of a woman with Asperger's syndrome, and the newsletter will be out in approximately a month, at which time I will post a link to it here and the full text of my article.

I also received a phone call from Charlene Schermer, who was referred to me by the Gersh Academy, where I gave my keynote address in June. Ms. Schermer is the Executive Director of the Custom Education Foundation, and is coordinating an event in October called "Special Day for Special Kids," which is being held at the West Hills Day Camp in Huntington, NY. It's an event where children with autism, Asperger's, Tourette's syndrome, and other neurobiological disorders can engage in fun, safe activities while their parents sign up for and attend informative workshops. Ms. Schermer asked me if I would be interested in running one of the workshops, and I accepted. I'll be running a 45-minute workshop on Asperger's and transition: Life in college. My presentation will run for half an hour, and I plan to allot 15 minutes for questions. It's unpaid, but the level of exposure is sure to be high, and I'm just plain excited to be running my first-ever workshop. If I can truly help even one person who attends, then I feel that I will have done my job. I'm really looking forward to it.

In addition, I've just completed a summer course in Developmental Disabilities, which adds three more credits to my Masters degree that I am working to obtain at Caldwell College. I received an 'A' in the class, but even better than that, earned 19.5 out of 20 points on a group presentation that I did in class on Asperger's Syndrome and Social Skills. My group partner, a lovely young woman who is a special education teacher, was speaking to a speech therapist friend of hers about our presentation, and the woman asked her right out if we would be interested in presenting our presentation at her school as part of a professional development workshop for the faculty. My groupmate called me to tell me the good news, and asked if I would be interested, and I responded with an enthusiastic affirmation. So, we will see what happens with that over the coming months.

Finally, I received two other public speaking offers. One came from a woman in my summer class, who told me that she spoke to her supervisor about me and showed her my business card, and her supervisor is now interested in having me come to speak at their school as part of a professional development workshop. The other offer came from a woman that I know from high school, who works in a program affiliated with Catholic Health Services, and she, too, asked if I would be interested in speaking to some of the staff at one or two of their locations on Long Island as part of a professional development workshop.

So many things are in the works right now, and I must say that I almost feel a bit overwhelmed. I'm beyond excited that things are picking up, though, and as I mentioned in my previous entry, please don't hesitate to contact me about a potential public speaking engagement or workshop. My services are slowly starting to become more in-demand, so book me for your event while I still have some free space on my calendar! :)

Hire Me as a Motivational Speaker!

2008-07-28T18:44:00.006-04:00

Hello, Everyone!

Those of you reading this are no doubt somehow involved in the world of autism and Asperger's syndrome--either you're parents of autistic/Asperger's children, teachers or paraprofessionals working with autistic/Asperger's individuals, or a person who is on the spectrum themselves. And odds are that you know a little bit about me already, but the purpose of this entry is to tell you about why I would make a great public speaker for your autism/Asperger's organization, group, or school.

My name is Amy Gravino. I'm a 25-year-old woman diagnosed with Asperger's Syndrome. I'm also a writer, and am currently working on a book about my experiences with relationships and dating as a woman on the spectrum. The title of the book is The Naughty Autie: Not Your (Neuro)typical Dating Guide, and I am hoping to sell it to a publisher sometime in the next few months. I am also a graduate student, and am about to start my second year in the Masters program in Applied Behavior Analysis at Caldwell College in Caldwell, NJ.

My business manager and I have decided to put together a press packet to send to school districts here in New Jersey, in the hope that they will want to hire me as a speaker, either at an assembly for students, or as part of a professional development workshop for faculty and staff.

Having spoken publicly since the age of 14 at autism conferences all around the country, most recently at COSAC's annual conference in Atlantic City, New Jersey, I feel that I am an intelligent, articulate, and qualified individual who is ready and willing to speak at any event that will enable me to help people and improve the lives of children, adults, and families in the autism and Asperger's community.

I am trying to reach out to those of you who either work in or have children in public schools, and who think that these schools might benefit from or be interested in having me speak there. Due to my school schedule, as well as financial constraints, I would prefer to keep the locales at which I speak strictly in the tri-state area (New York, New Jersey, Connecticut, and possibly also Pennsylvania). My rates for speaking vary by the length of the speech expected and the budget within which the organization or school can work. I would be willing to travel outside of the Northeast for speaking engagements if travel expenses can be covered by the organization seeking my services (this also can be negotiated depending on circumstances, however).

Anyone wishing to obtain more information can feel free to leave a comment on here with your e-mail address and I will contact you, or you can go to my User Profile and find my e-mail address there and contact me. I have a curriculum vitae (C.V.) and a brief biography that I will gladly send to those who are interested. For more booking information, please feel free to e-mail my business manager, Nicole Turon-Diaz, at learningbydesign@verizon.net.

Thank you very much, and I hope to hear from you soon!

Book News + Gersh Academy Graduation Speech

2008-06-27T23:26:00.003-04:00

Got a few bits of news to share: First, I've finally started sending out query letters for my book. It took me a really long time to get to this point; the excuse I would give would be that I had too many others to do. In truth, I was afraid. Writing and sending out these letters means that this has all become real, that it's not just me talking about writing a book and getting it published, but actually going through the motions of finding an agent and a publisher, of sending my project out into the world to be judged.

I've sent out seven query letters in total, and gotten back two responses thus far, both of which were rejections. Which--to put it plainly--really sucks. Don't get me wrong, though; I fully prepared myself for this. Rejection is a large part of the publishing industry, and I'm lucky that I even got the responses that I did. Both agents who wrote back to me were very kind, and offered words of advice and encouragement. All some people ever get is a rejected stamp. So I'm fortunate in that regard. The one agent made a good point, actually; he said that he wasn't head-over-heels in love with my book proposal to see it as part of his list, and both he and the second agent who wrote to me emphasized the importance of finding an agent who absolutely loves your idea and is dedicated to getting it published. I'd much rather have an agent who is passionate and excited about my book, instead of one who is just "eh" about it. So, onward I go, hopefully to bigger and better things.

Second item of business: the Gersh Academy graduation. As I mentioned previously, a few weeks ago, I was asked to speak at a high school graduation for the Gersh Academy, a school in Hauppauge out here on Long Island for kids with autism, Asperger's, and other neurobiological disorders. I wrote up my speech earlier this week and sent it to the woman with whom I'd met, on her request, so it could be reviewed by her and the Board. She also sent me a copy of the graduation program, and that's when I discovered that I had been given the title of Keynote Speaker. Keynote Speaker. Me! How about that?

Anyway, June 27th was the big day. I arrived at the school at 10:15am, and the ceremony began shortly after 11. I was the last person to speak, but you know the old saying about saving the best for last? Well, there you go. Don't think I'm saying that out of pure ego, however. I'm only saying it because almost every person in the audience came up to me after I delivered the speech and told me how inspirational it was. One woman even said that it made her think about how she'd behaved in high school, and whether she could have been a little nicer to those who were different or who didn't run in her social group. The best compliment of all was when one of the graduates told me that he loved my speech. He and the others were whom I was hoping to reach, and it looks like I did. So yay me. :D

In addition to my speech at the graduation marking my first-ever keynote address, my father was able to record it using our new videocamera. The audio is a little wonky in the beginning, but it gets better as it goes on. So, without further ado, here is my keynote address from the Gersh Academy 2008 graduation:

Speech Transcript:

Good morning distinguished guests, family members, friends, the faculty and staff of the Gersh Academy, and of course, the graduates of the class of 2008.

When I was asked to speak here today, I immediately thought of my own high school graduation seven years ago. I remember being forced to listen to a speech given by our class valedictorian, in which she described school events and parties that “everyone” had attended. In truth, her speech excluded me and so many others who had never gone to any of these events, rituals of youth that we were supposed to be remembering fondly yet had never actually happened.

So I knew that I had a responsibility to you, to talk to you about something to which you can relate, something that affects your lives right now, today. I wanted to be able to give you the speech that I wish I could have heard all those years ago. A speech that spoke to me, a young person on the autism spectrum, specifically Asperger’s syndrome. An outcast.

“Finally, the answer” is the motto of the Gersh Academy, which I discovered by perusing your school’s website. But before any answer can be given, first we must know what the question is. You stand here on the verge of adulthood, getting ready to head out into the real world. The team you’ve relied on during your years at the Academy—teachers, therapists, 1:1 aides—is now shifting, and your parents and caregivers will become the primary “team” in your lives from now on. But as you make your way through the world of higher education or the workforce, you will begin to speak for yourself, to tell people who you are. And that is what the question is: Who are you?

When I graduated from high school, I was not Amy Gravino. Amy Gravino did not yet exist. There was only a shell, fragments of self-esteem lying in shattered pieces after being chipped away at for years by my fellow classmates. I was whatever they said I was—if they called me ugly, I was ugly. If they said that I was a freak, I was a freak. I was defined by how they saw me. And though I had my parents to tell me differently, the words of my peers carried far more weight, making any other positive affirmations almost impossible to believe.

The journey of discovering who I am started to take place when I went off to college. Slowly, the pieces were picked up. Slowly, I began to realize that I wasn’t in high school anymore, that I no longer had to be ugly or a freak, and my confidence grew. Slowly, Amy Gravino began to emerge.

Getting to that place, to that point where I started to find out who I was, took a lot of effort and hard work. For so many years, no one believed that I was going to be able to do anything. They said I wouldn’t go to high school, wouldn’t graduate—in short, I wouldn’t amount to anything. I learned at a very young age that the world is not an accommodating place, and I fought for the right not only to follow my dreams, but to even have them at all.

Your years here at the Gersh Academy have benefited you immensely, and perhaps the most significant benefit of your education here is that this school has given you the tools to hopefully one day lead an independent life. That is perhaps the greatest desire of your parents, caregivers, and the teachers and others here who have nurtured you and watched you grow: to see you succeed in life. Success comes in many forms, however, and the support and guidance given to you by this school is dedicated to your personal success.

But the day will come that someone will ask you the question I mentioned earlier: Who are you? This is where perhaps the most powerful tool you can have comes into play: self-advocacy. Self-advocacy is an invaluable asset, not just for individuals with neurobiological differences, but for everyone. Those of us who are a little bit “different,” however, have to work twice as hard to make our voices heard. I can remember well sitting in on IEP meetings in elementary school, surrounded by adults all discussing my future (or the very possible lack thereof). You would think that my presence would ensure an opportunity for me to speak for myself, even for a moment. But I didn’t. No one ever asked me how I felt, or what I wanted. Even if they had, I’m not certain that I would’ve been able to tell them.

Many years have passed since then, and I am happy to say that I have become a strong self-advocate, loudly and proudly proclaiming my “difference,” and I now see it as a strength, a high mark of character, rather than a weakness or flaw. Your disabilities have presented each of you with challenges, and the people at this school have worked with you to face those challenges. Now, as you head into adulthood, you are starting to find your own voice, and becoming a self-advocate, learning the skills to articulate your needs and feelings will enable you to use that voice to tell the world who you are.

The last thought I’d like to leave you with is this: You have worked so hard and for so long to get where you are at this very moment. Surrounded by your friends, loved ones, teachers, and therapists, it seems hard to believe that your life as you know it is about to change completely. But rather than seeing this day as an ending, you must also look at it as a great beginning. I once sat where you are sitting, and as angry as I felt listening to that valedictorian’s speech, my face also burned with shame over the fact that I’d failed at having the “typical” high school experience. I could clearly see what was ending, but I had no idea what was about to begin. Leave yourself open to endless possibility, and take with you the lessons you have learned and the guidance you have received here at the Gersh Academy. I wish you all the greatest of success in your future endeavors, and I thank you for allowing me to speak to you today. Congratulations to the class of 2008. Thank you.

Gersh Academy Graduation (Speaking Engagement)

2008-06-15T12:54:00.004-04:00

I just wanted to announce that on Friday, June 27th, I will be speaking at the high school graduation of the Gersh Academy in Hauppauge, out here on Long Island. I met with Melanie Ginsberg, an administrator, at the school two weeks ago, which is when I was formally invited to speak at the graduation, and I accepted. The speech will be approximately ten minutes in length, and I will be recorded, so look for a video clip of it to appear here in the days following the graduation!

Inaugural Post

2008-06-11T11:33:00.003-04:00

Welcome one and all to my first-ever official blog. I thought it was high time that I gave this thing a shot, what with all of the exciting events that are starting to happen in my life. I hope that this blog will be a place where I can keep all of you up-to-date on these events, in full and rich detail, which is just how I like to write.

It is my greatest hope that those of you reading this will be able to glean insight into the life of a young woman with Asperger's syndrome trying to find her way in the world. I am proud and excited to take you on my journey as I make my way through graduate school, public speaking, and the process of writing and publishing my book. From the bottom of my heart, thank you for taking the time to be here.

Welcome to my Blog!