I Won't Go Back: The Sandy Hook Shootings and Asperger's Syndrome

Aurora, Colorado. Clackamas, Oregon. Newtown, Connecticut.

These three places have one thing in common: Each has been the site of a recent mass shooting. While the loss of life at each has been horrific, the massacre in Newtown has struck an especially raw chord, as it took place at Sandy Hook Elementary School. The gunman shot his way into the school, and several teachers, the school principal and psychologist, and--sadly--twenty young children, were left dead in his wake.

Almost immediately, people were scrambling for answers: Who was the shooter? How did he manage to bring several weapons into a school? Why would he commit such a heinous, despicable act? The media has been very quick to provide answers to these questions--though not necessarily the right or responsible ones. 

Within a day of the shooting, at least two major news outlets were speculating that the shooter--who turned the gun on himself--had some form of Asperger's Syndrome. So-called "experts" were trotted out onto programs such as Piers Morgan Tonight, and described Asperger's in the ill-informed fashion so typical of someone who does not know what they are talking about. 

Even with only this, the fear and paranoia have begun to build, and with them, a creeping terror in the pit of my stomach for what this will all ultimately mean for people living on the autism spectrum.

A few nights ago,  Linda Walder Fiddle, of the Daniel Jordan Fiddle Foundation, introduced me at the Hope Swings autism gala, where she was the invited honoree. During her acceptance speech, she referred to me as "one of the premier autism advocates in the country." 

Yet I am sitting here now, trying to make sense of the Connecticut shootings and the media's irresponsibility in characterizing the shooter as having Asperger's Syndrome, and despite Linda's glowing accolades...I am at a loss. As I wade through the jumble of disbelief, sadness, heartache, and a steadily growing sense of fear, there is only one thing that I know for certain:

I won't go back.

I won't go back to believing that I am the only person going through what I am going through.

I won't go back to being that voiceless, frightened girl who thought that she was nothing and would never be anything.

I won't go back to when words like autism and Asperger's Syndrome had no recognition, no meaning...no place in the world. 

Autism and Asperger's Syndrome do have meanings now...and that is what worries me. All too easily, a story on the news translates into frightened parents, children who believe their AS peers are killers, and a stigma that can never be fully shaken. All too easily, children and adults on the spectrum--traditionally far more likely to be victims of violence than perpetrators--can become victims anew, all as the result of a crime committed by a person who in no way represents the overwhelming majority of people living on the autism spectrum.

If I truly am that person that Linda described me as, then my role in this becomes clear: 

I will fight. 

 
I will stand up and speak out for as long as it takes to ensure that no person on the spectrum is unjustly marginalized, disenfranchised, railroaded, or otherwise bullied by a society that wants to demonize us. 

I have to, because there is no other option. There's no reversing course, no shuttering us away in the dank institutions of the past....no undoing the work that so many of us have done.

I won't go back. 

...Will you?

Review of "Night of Too Many Stars"

A few weeks ago, I was fortunate enough to attend Night of Too Many Stars, an annual autism fundraiser hosted by Jon Stewart and held at the Beacon Theatre in NYC. I was asked by Autism Speaks to write a blog post for them about the event. This was originally published on the Autism Speaks blog on October 20th, 2012 [Link here.]

**

From the moment you enter the front doors of the Beacon Theatre and lay eyes upon the gilded walls and brightly painted ceilings, you are in another world. The Beacon looked to me the way that I’ve always imagined theatres to look like in my dreams: Somewhat magical, and with the power to make you think you’ve left your cares and worries behind, even for just a few hours.

For many people, however, A Night of Too Many Stars had everything to do with our cares and worries, and was the reason why we were there. My friend Nicole and I were seated in the very last row of the Right Orchestra section, but our view was still fantastic.

A collage of differently-shaped television screens hung against a colorfully lit curtain, and white lights dazzled from above in multiple configurations. The house band was situated on the right side of the stage, and the Night of Too Many Stars logo was displayed proudly on the center screen, which served as the backdrop for the main attraction.

And what an attraction it was.

The night flowed almost effortlessly, with Jon Stewart as a steady guiding hand and host. It was my first time seeing him in person, but he looked and made me laugh just like he does on TV.  Some of my favorite moments of the night were watching Jon, who sat crouched over by the band when other comedians or guests were doing their skits, crack up laughing. I’ve always wondered what makes the people who make me laugh laugh themselves, and that night, I got to find out.

As with any live show, the night had its high point and its low point. The low point unquestionably came when they had two girls from “Jersey Shore” onstage, along with a cast member from “The Sopranos” impersonating New Jersey governor Chris Christie. It was absolutely, bar none, a complete flop. All the skit consisted of was the girls swearing for no reason, and “Governor Christie” eating a sandwich and making fun of the girls for no reason. It was painfully unfunny, as evidenced by the fact that nobody in the audience was laughing, and you could hear the collective sighs of relief once it ended.

Then there was the high point.

Throughout the night, they showed videos of some of the various autism programs that the monies raised would be going towards. At one point, a video of a young girl with autism named Jodi was shown. As part of the intensive treatment Jodi has undergone since age 2, she plays the piano; now, at 10 years old, Jodi is a huge fan of Katy Perry.  In the video, she is seen playing the Katy Perry song “Firework” on the piano, and this segued into Jodi playing the same song on piano right there on stage…with Ms. Perry joining her for a duet.

It was one of the most wonderful things I have ever seen. You would have been very hard-pressed to find a dry eye in the house after that number, especially given that it concluded with Jodi getting up from the piano and wrapping her arms around Katy in a big hug. Having played the piano myself as a child, the moment resonated with me on a personal level, but what really made me nearly lose it was when Jon Stewart came back to the stage, his eyes clearly red-rimmed from tears, and how he had to pause because he could not speak for fear of crying.

As exciting as the celebrity-filled moments were, the lens through which I ultimately viewed the evening was what it all means for people on the autism spectrum.  I found myself taking mental notes of things that I would do differently, such as some of the language in the program that we were given. 

Phrases such as “autism robs children and adults of their capacity to function normally in society,” jumped out at me, as did some of the comedians who used parts of their act to harshly make fun of “nerds,” or who said things like “This is what happens when you get rid of bullying.”

Being a person who has lived on the autism spectrum her entire life, and who knows all too well what it feels like to be bullied, I think that I had a different perspective than the majority of the audience. While Night of Too Many Stars is certainly a wonderful, worthwhile event, and I am thrilled that a child with autism was afforded such an incredible opportunity and made so visible, the things that I mentioned above show just how much work there is still to be done.

After I first arrived at the Beacon Theatre and got to my seat, I walked up towards the front of the theatre. There I saw people that I know from several autism organizations, and was happily and warmly greeted by all. In the past, I’ve often attended events where I’m just with the person who “knows people”…but this time that person was me, and in a night filled with so many stars, I felt like I was one of them.

It is my hope that all people on the autism spectrum will have the chance to be the stars of their own lives, and with the continued help of awareness and fundraising events like Night of Too Many Stars, it will one day happen.

Two Steps Forward, Five Steps Back

The above comments (click picture to enlarge) are comments that I recently saw on a Youtube video of Conan O’Brien promoting Night of Too Many Stars, which I was actually fortunate enough to attend this past weekend (more on that later), and which airs on Comedy Central this weekend.

To say that I was disheartened when I read these comments is a complete understatement. A great sadness overwhelmed me, followed swiftly by pain-fueled anger; not a sudden, unprovoked rage; but a rolling boil of frustration that never fully goes away, but instead just gets quieter or louder depending on the circumstances.

I know what the response of many people might be to this: They'd tell me that these are random Internet trolls, Youtube is a cesspool of stupid comments, and that there’s no point in paying them any mind. The reason that these comments bother me, however, is that I truly feel like they represent a cross-section of this country, and of the world. They represent the people who have a passing acquaintanceship with autism, but have no reason to ultimately care about it.

These are the people who interview us for jobs. The people who decide which laws to pass and whether people on the spectrum will have their medications/services/supports covered by insurance. These are the people who see us in the supermarket, or on the bus, or at the mall, and cast dirty looks in our direction.

And, in some cases, these are the people who work in special programs, schools, and group homes looking after the welfare of people with autism.

That’s why these comments bother me. Because this is the world that people on the autism spectrum have to live in. It’s the world that I have to live in, and it frustrates me that, despite all of the awareness-raising and advocacy work that I and many others have done, people can still cling to these tired notions and view autism in such a negative light.

I’ve heard time and again that the hardest people to bring on board to autism-related causes, to solicit donations and support from, are people who have no connection to autism. My battle is more for hearts and minds than for wallets, but I am starting to see that the fight is just as uphill. I’m not going to stop fighting, even if things like this do make me feel like I’ve lost my footing for a moment.

But I can’t deny that things like this make it all feel like that much more of a challenge.

Autism Speaks "Autism Votes" Ad Campaign

A few weeks ago, I was asked to participate in the filming of an ad campaign put together by Autism Speaks called "Autism Votes," which is aimed at getting politicians to focus on autism as an issue in the coming elections this November. The campaign has since been released, and I was chosen as one of the featured speakers in the video:

 

In addition to the video, a few other speakers and I were personally profiled on the Autism Speaks website. Below is the testimonial that I wrote explaining why autism is important to me, a self-advocate and college coach for students with AS, as an election issue:

"When you’re running a campaign, you want voters to focus on what you can do, as opposed to what you cannot. You want to draw attention to your strengths, rather than your challenges. It is exactly the same with autism. Individuals on the autism spectrum spend much of their lives being told what we cannot do, instead of what we can do. 

From the first moment of diagnosis, we are given a laundry list of all the challenges that accompany autism, all the things that we will struggle with for the duration of our lives, and the notion that because we have autism, our lives will never have the quality of persons who do not. 

Although I was not fortunate enough to benefit from scientifically validated interventions such as ABA (Applied Behavior Analysis), it and other autism-related services have the potential to help thousands of other individuals on the autism spectrum and their families. Awareness of autism is on the rise, but we need an elected official to stand up and represent us.

I want a politician who is on my side, who listens to my concerns and gives weight to my voice, and to the voices of all people living on the autism spectrum.

I want to know that politicians will work with me and with other self-advocates and professionals in creating and shaping national policies that affect individuals with autism and their families.

I want improving the quality of life for adults and children with autism to be one of the most urgent priorities on our elected officials’ agendas.

In the election, the votes of people with autism and their families will be counted, but it is up to the politicians that we elect to make our votes count."

--

While I personally do not agree with characterizing autism as a "public health crisis," I am glad to have had the opportunity to speak out on autism as a topic that must be addressed by our elected officials. 

Also, I will be doing my best to update this blog with more regularity, as I have a number of projects on tap at the moment that I am excited to share with you all. Please stay tuned!

AHA-NY's Annual Spring Autism Conference

This is me moderating a workshop at AHA-NY's annual Spring conference on Saturday, April 21st at Adelphi University. Although I have moderated conference panels previously, this was my first turn as a room moderator (i.e., the person who makes the announcements at the beginning and end of the workshop, introduces the speakers, and corrals the audience). The speakers were Dr. Stephen Store and Dr. Faith Kappenberg, two people whom I have been fortunate to know for a very long time now.

The subject of the workshop was the implications of the forthcoming changes to the DSM-5--specifically, the removal of the Asperger's Syndrome and PDD-NOS diagnoses, and the implementation of the broader "Autism Spectrum Disorders" diagnosis.

"I'm Not A Model."

I sometimes hear myself saying this, usually in the following context: “I look pretty good today. I’m not a model, but…” And I’m realizing how much it bothers me, that that phrase has become some sort of qualifier.

“I’m not a model.”

Most women aren’t. We aren’t models…we’re us, yet somehow the barometer by which we measure our self-worth, our “good hair” days or “good skin” days or “skinny” vs. “fat” days or whether our butts and breasts are appropriately perky…is models.

I don’t just mean the comparing and contrasting that goes on when you read a magazine (such as Cosmopolitan). That’s an active form of comparing, where you’re consciously processing this printed material and aligning next to your own perceived misshapen bulk.

I’m talking about the unconscious comparing, such as I described above. Deciding, without even realizing it, that the absolute best, #1, top-of-the-line you can be is a model or model-like.

“I’m not a model.”

Today was the day I had an epiphany regarding that phrase. Today I realized how utterly absurd it is, in any and every context. I’m not 5’11”, nor will I ever be. I’m not gonna be struttin’ down a catwalk anytime soon, or gracing the front covers of any publications, nor will I probably ever.

So instead of making models my barometer…instead of saying, “Well, I came thisclose to model hot today,” I need to say, “I was a pretty good Me today. Not my best Me, but good. And tomorrow, I’ll try to be an even better Me.”

Because here’s the thing: Even on my very worst days—the days that eat away at me, the days that wrench my insides, the days I want to be over before they start—I still want to be me. If I was a model on my worst days, I could never appreciate or be happy with being me on my best days. So that’s why I have to be me, 24 hours a day, seven days a week, 365 days a year.

I may not always like it. Nobody looks in the mirror and loves what they see all the time, unless you’re Narcissus. That’s just the way the world works. But I can no longer get down on myself for not being or looking a certain way. I spent too many years doing that already, and it’s no way to live.

It’s not living at all, really…it’s existing just for the hope that you someday might escape who you are.

Except I don’t want to escape who I am. Not anymore.

“I’m not a model.”

…But why should I have to be?

Welcome and Some Housekeeping Items

So, I've noticed some new followers on my blog in recent months, as well as e-mail inquiries from readers of this blog. I thought, therefore, that I would take a moment to welcome everyone here and introduce myself and my blog to you.

First, I would like to thank Babble.com for choosing my blog (for the second year in a row!) as one of its Top Autism Spectrum Blogs for Parents. I am very grateful to have been selected and I hope that this distinction will help to bring in new readers. As you may be able to tell, this blog is not updated as regularly as I would like it to be, so I am working to try and change that.

Because of this thus-far irregular updating, I am not completely certain as to who the exact readership of this blog is. I've aimed my writing to be accessible to individuals on the autism spectrum and neurotypical people (friends, family members, parents, professionals) alike. I want everyone to be able to read my entries and take something away from them, no matter where on the developmental continuum they may fall.

So who am I, exactly? And why do I write this blog? Well, I'm a woman who was diagnosed with Asperger's Syndrome at the age of 10. In 2009, while pursuing my Masters degree in Applied Behavior Analysis, I became certified as a college coach for students with Asperger's Syndrome, which is how I am now hoping to make my living. Upon completion of my degree in 2011, I opened an office for my newly-founded college coaching business, A.S.C.O.T. Coaching, LLC, in Fairfield, New Jersey.

I currently serve on the Board of Directors and as the Board Treasurer for GRASP, the Global and Regional Asperger Syndrome Partnership; on the Self-Advocate Advisory Board for the Daniel Jordan Fiddle Foundation; and on the Communications Committee for Autism Speaks. Through the work I do for these organizations, and through my work as an Asperger's consultant and public speaker--speaking at conferences, professional development workshops, and assemblies across the country as well as at the United Nations last year--I am able to act as a voice for individuals on the autism spectrum who do not have one.

I'm also writing a book at the moment, titled The Naughty Autie. It details my experiences as a woman on the autism spectrum with dating, relationships, and sexuality. I've been referred to as "the Aspie Dr. Ruth" because of my willingness to speak frankly and openly on issues of sexuality and relationships. The book takes on a "single girl," Sex and the City type of perspective that is unique to the current autism literature base, with me as the "Carrie Bradshaw" of the Asperger's world. I do not have a publisher for the book as of yet, but I am currently looking for one.

I've been a writer since the age of 10, starting with poetry, then later branching into short fiction, and now non-fiction. My writing has been published in a number of outlets, including the official blog of Autism Speaks, Autism Spectrum Quarterly, AHA's On the Spectrum newsletter, and most recently, the "Transition to Adulthood" chapter of W.L. Heward's Exceptional Children, a widely-read textbook for undergraduate and graduate special education students.

My primary area of interest is working with college-age individuals and adults on the less affected end of the autism spectrum. For my Masters thesis, we were required to design and run our own research study using the principles of ABA. For my study, I taught adult men with Asperger's Syndrome how to ask someone out on a date. As I build and cultivate my business, I hope to continue this work and offer dating skills workshops for both men and women with Asperger's Syndrome.

What you will find on this blog is a collection of my ruminations about situations with which I am dealing, announcements about events that I am involved with, and my reactions to news items related to and issues being faced by the autism community as a whole. I have also been approached for book reviews and author interviews, so look for those to potentially become a bigger feature of this blog as time goes on.

For more information about me or about A.S.C.O.T Coaching, I invite you to check out my website, www.amygravino.com. Several of my media appearances, including my talk as a member of a panel of autism experts at the United Nations last year, are featured on the Media page of my website.

Any questions, comments, suggestions, or speaking/PR inquiries can be directed to me at amy@amygravino.com, or to my business manager, Nicole Turon-Diaz, at learningbydesign@verizon.net.

Thank you so much, and I hope you have enjoyed, continue to enjoy, and will enjoy my blog for a long time to come!

That Could've Been Your Face

(Trigger Warning: For rape and sexual assault.)

"There but for the grace of god."

I always feel like an old person saying that. It never sounds quite right coming from me, mostly because I don't think I've really lived long enough to have any in-depth hindsight about things.

But sometimes the universe can go and change things on you, just like that.

An article came to my attention the other day, from a newspaper in the "Twin Cities" (Minneapolis/St. Paul) region of Minnesota. It detailed the story of an 18-year-old girl with Asperger's syndrome who had run away from her home in Iowa after befriending a young man on a social network. Once in Minnesota, this young man raped the girl in a hotel room, and then, under the threat of death, he and his girlfriend forced her to have sex with thirty other men who'd been sought via an online advertisement asking them to come there to pay to have sex with her.

Immediately, I was transported in my mind back to my parents' computer room--to the warm glow of the screen in front of me, the click-clack of the keys under my fingers, and the grainy texture of the thick, rubber mat under my chair's rolling wheels. This was the place where I spent so many of my waking hours as a teenager. Unable to connect with my peers at school or make friends, I sequestered myself there, seeking refuge in the only place where I could at last be accepted--the Internet.

Most of the people I spoke to were my age--teenage girls who were fans of the Backstreet Boys, as I was at 15 years old. I volunteered my personal information to these girls readily; without hesitation, without any understanding of the dangers that were lurking quite close to the surface. And when someone claiming to be A.J. McLean of the Backstreet Boys began to infiltrate our little group, I did not doubt for one second that this person was indeed my heartthrob of heartthrobs.

My parents fought constantly to get me off of the computer, and I ardently refused, despondent at the thought of being away from this social network that I had built--my new friends from all parts of the country, fellow BSB fans, and--of course--my beloved "A.J."

The typed, un-hand signed letter that he sent me--saying how much he cared about me, how wonderful he thought I was, and imploring my parents to let me talk to him--now sits crumpled in a drawer somewhere in my old bedroom. The ring he sent me, a fake diamond "engagement" ring, is long gone and forgotten.

That could have been me.

The words choked inside my throat like too-spicy soup, the realization ever-greater as I read the rest of the article. The developmental level of a 13-year-old. An entirely too apt description of myself at 18; the picture of stubbornness, desperately wanting to be seen as an adult, yet too immature, too naïve to understand the ways of the world.

Innocent. That's what I used to be. That's what she used to be, until someone decided to take it away. Not only sexual innocence, but emotional--that certain optimism with which we view the world when we're young, and the way we believe in the inherent goodness of people. That is now lost for this girl--shattered in the most violent and horrifying of ways.

"[...]During a police interrogation, [the girlfriend] admitted to investigators that she knew the girl could be "easily taken advantage of," but she said the girl "was not supposed to actually have sex with anyone, just con them out of their money." [The girlfriend] told police the teen just "never caught on" to the scheme and actually had sex with the men."

The ball of disgust that had curled in my stomach as I read this article crescendoed into an enormous, pulsing anger when I got to the above paragraph. In situations such as these, there is every advantage to be taken by the NT predators against this girl who is on the spectrum, and I fully believe that both the girlfriend and the young man were damn well aware of this.

As for "never catching on" to the scheme, this has more or less been the theme of my life, and that of many other individuals on the autism spectrum. Just as I sat happily typing away to someone who eagerly fed on my loneliness, unaware of his "scheme," I suspect this girl also had no idea of the trap being set for her.

It is clear that the perpetrator here is blaming the victim, and we are right to find this appalling. Yet how often are folks on the spectrum accused of "not catching on" to something in everyday situations, and blamed for our "inability" to understand when it all could have been avoided if anyone had bothered to tell us that "something" was going on in the first place? In the case of the Twin Cities story, however, I truly doubt either the young man or the girlfriend ever had any intention of doing so.

I can only hope that this girl is able to find some peace in the wake of her ordeal, and that her rapist and his accomplice are punished to the fullest extent of the law for their crimes. I can only thank every higher power above that my parents had more sense than I did when I was a teenager, and were probably the only reason I didn't run away and end up in the newspapers myself.

And I can only listen to the careful breaths in my chest, see in my mind's eye that 15-year-old girl sitting at that computer, and feel the pounding echo of my heart as I fight now to make sure that what could have happened to me--what did happen to her--never has a chance of happening to any woman on the autism spectrum again.

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

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.

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

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.