The life and times of a writer, national speaker, autism consultant, avid home cook, and woman on the autism spectrum. Come inside my world and see what life is like from behind my eyes.
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standards for women, it is both disappointing and appalling that you would stoop so low as to perpetuate this outdated, misogynistic mindset.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.
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.
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.
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!
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.
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.
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.”
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.
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.
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!
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
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.
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.
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.
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."
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.
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.
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:
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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!"
