Why I Don't Like April Fool's Day

It’s that (un)magical time of year again, where an entire day is dedicated to making fools out of people. Or, if you were me in seventh grade, that was every day. 

I’ve always had a difficult time telling when people are joking. Granted, I have gotten much better at it over the years, but what I’ve come to realize is that there is a distinct difference between a joke and a prank. People can share a joke, can laugh together, be part of it together. But a prank is decidedly far more one-sided: It’s Person A perpetrating a ruse against a completely-unknowing Person B. 

I have no doubt that there exist pranks that are harmless, or “softball” pranks, as I call them. From my experience, however, most pranks are mean-spirited, if not outright malicious. And that is why, even all these years later, I still flinch when I (inadvertently) click on a hoax headline and the website it takes me to says “April Fool’s!”. I know that I’m not the specific target of the prank—I know, in my mind, that it wasn’t an attempt by the website creator to purposely fool me, Amy Gravino, a person said creator has never even met.

But when you have been the target of a prank, when you have been humiliated, singled out, and aimed at because people know you are gullible, it’s hard to forget what that feels like, in your heart. When I clicked that website, I could still hear the laughter at my expense, laughter from my classmates who moments earlier I had thought actually liked me, but who were now laughing as I stood there alone, cheeks burning with embarrassment.

So I flinch. I pause, for the most fleeting of moments, and have to remind myself that it’s okay. Even though that laughter is faint now, it never fully goes away. 

But I sure wish April Fool’s Day would.

Russian To Conclusions: The Problem with Diagnosing Vladimir Putin with Asperger's Syndrome

This morning, I received a message on Facebook from a friend: "Did you see this?" along with a link to a news story from USA Today. It stated that a study conducted by a Pentagon think tank in 2008 concluded that Russian president Vladimir Putin has Asperger's Syndrome.

Now, after reading the article, as well as numerous posts and comments online in response to it, all I can think is:

The president of Russia has Asperger's Syndrome? You're Putin me on.

There are a number of problems with diagnosing (however roundabout-ly) any world leader with Asperger's Syndrome, never mind one who has as abysmal a human rights track record and history of sociopath-level cruelty and indifference to his own people as Vladimir Putin. 

Right out of the gate, the report on the study says the researchers can't prove that Putin has Asperger's because they were unable to perform a brain scan on him. So it makes you wonder what the aim of running such a story could be, if not to provide something definitive.

What this really is and was is a shot fired. Wars happen not only with guns and bullets, but with words and propaganda. So the shot that was fired in this instance is reminiscent of a Cold War tactic: Discrediting the enemy by saying that he has Asperger's Syndrome.

And therein lies the problem: Whether the researchers intended such or not, Asperger's Syndrome is being used an insult, a reason why Vladimir Putin makes the terrible decisions that he does, and why he should be viewed as an ineffective leader. The equation then turns to this:

Vladimir Putin is evil. 

Vladimir Putin has Asperger's Syndrome.
Asperger's Syndrome is evil.

It may seem like a far leap to those of us who live in and understand the world of autism and Asperger's Syndrome, but it is not difficult to lead those who are unfamiliar with Asperger's down that path. It is a path already begun with Adam Lanza and the Newtown killings in 2012, and carved out further with every subsequent mass shooting where the perpetrator is immediately described as having Asperger's Syndrome--regardless of whether it is true.

With every unfounded assertion, every assumption and negative media portrayal comes a mountain of discrimination and fear from under which we must repeatedly climb. And when you start to feel as though no one cares if you get out, the weight of that mountain eventually becomes unbearable.

Individuals with Asperger's Syndrome are artists. Writers. Mathematicians. Engineers. We view life through a different lens, and if properly supported and nurtured, can use that vantage to better ourselves, our communities, and the world at large. But if we are continually associated with people like Vladimir Putin--associated with psychopaths, with those who are to be feared, with evil--those opportunities will never come. 

Let us hope that media outlets will consider taking a more responsible tack in reporting stories such as these from now on, because it is not just the United States' relations with Russia or public opinion that is at stake.

The lives and futures of individuals with Asperger's Syndrome are at stake. And we deserve better.

Keynote Speech at AHA-NY's Fall Autism Conference

Happy Holidays, folks! I am so happy to be able to share with you video of my first-ever keynote speech, about my experiences in school and growing up as a girl on the autism spectrum, which I gave at AHA-NY's 2014 Fall Autism conference in Holbrook, New York this past October. It's a bit long, but I hope you'll all take the time to watch it when you can. And please feel free to share this with anyone you think might be interested. Thank you!

Position Statement on Autism Speaks

For several months now, I have been struggling with how to write this.

I had hoped that I would never feel the need to do so, but over the past few weeks in particular, I have received random messages on Facebook and tweets from people telling me not to support Autism Speaks. These faceless message-senders are strangers, folks to whom I have never before spoken, but who feel the need to step into my space and tell me what to do. That is something of a problem, if for no other reason than because my relationship with and feelings toward Autism Speaks are far from black-and-white.

First of all, let me be clear from now on one thing: This is not a “defending Autism Speaks” post. I have seen numerous posts circulating on sites such as Tumblr talking about how Autism Speaks is "evil" and no one should support them. The truth is, the grievances that some people have against Autism Speaks are absolutely justified, and I am in no way here to diminish their experience or tell them they aren’t allowed to feel what they feel. In fact, I am on the autism spectrum myself (diagnosed at age 10), and have been appalled by many things that Autism Speaks has done over the years.

So that is why, when I was invited to join the Communications Committee of Autism Speaks three years ago, I said ‘yes.’

Huh? Wait a minute…what? you may be asking yourself right now. The reason that I accepted this position is because in the course of being aghast at many of Autism Speaks’ past actions, I also realized that they have an incredible platform, a place of visibility in the neurotypical world that is unmatched by any other autism organization. The enormity of Autism Speaks also means that—as much as many of us wish otherwise—they are not going away anytime soon.

I joined the Communications Committee (which deals with the public campaigns and partnerships of Autism Speaks) because I saw it as an opportunity to make changes to Autism Speaks from within.

Has progress been made over the last three years? Absolutely. Has enough progress been made? Sadly not. But it is a slow process—so slow, sometimes, that it’s unbelievably frustrating. One important thing to note, however, is that the people with whom I am in contact are in no way supportive of the “cure” rhetoric that was the previous trademark of Autism Speaks. That was a mindset that came with the organization’s founders, but to which very few of the people there still subscribe.

It’s not enough that I know that, but the public overall does not. That change has not trickled down, has not shown in much of the media put forth by Autism Speaks. And that is one of the things I am trying to make happen by being on this committee.

When I sit there in the committee meetings, it becomes my job to operate as the eyes and ears of the entire autism community. It becomes my job to be the voice for individuals on the spectrum, a task that is in no way easy because I know that not everyone is coming from the same place that I am, nor has everyone's experience with autism has been the same as mine. But I am in there to speak for you, to make your concerns—which are also my concerns—heard.

The simple truth, and the one thing that I always try to keep in mind, is this: They’re not going to hear it if I’m not there to say it.

My reputation with Autism Speaks has become one of being the person who will not sugarcoat things, who will not hold back, and who will be tough on the organization because I know that it can and should do better. I have met and spoken to Autism Speaks’ executive director, Liz Feld, herself, and told her as much. I have also purposely gone to Autism Speaks events where there are big donors in attendance to make sure that no one loses sight of who they and Autism Speaks are supposed to be helping: People on the autism spectrum.

As I have stated previously, it is my belief that working from within is the best way to effect change. I hope that by using the capacity I am afforded as a member of the Communications Committee, I can create an honest and open dialogue about the concerns, grievances, and needs of the autism community with Autism Speaks, and by doing that, change can and will happen.

Thank you.

Amy Does TED!

On April 11th, I had the very exciting opportunity to speak at the TEDx conference at Seton Hall University in New Jersey! One of the organizers for the conference had asked me several weeks prior if I would be interested in participating, and though I had never done a TED talk before, I was happy for the chance to do so and bring my story to a new crowd. Here is the program from the evening's events, with the biographies of each speaker (listed in order of appearance):

The theme of this TEDx conference was "(R)evolution" (a combination of both evolution and revolution). Each speaker came from very disparate backgrounds and spoke from a variety of world views, and for my talk, I spoke about my personal evolution as a woman on the autism spectrum, and then the revolution that we're starting to undergo in society with how we look at autism and at disability overall, and how much farther we have to go.

I'm very happy to now share with you all video of my TEDx speech. The quality is unfortunately not the best, so you may need to turn your volume up to hear properly. Please feel free to share this as well, however you see fit.



I'm so glad that I had this opportunity, and I hope I will have the chance to speak at more TED talks in the future!

In Plain Sight: Thoughts on the Center for Autism and the Developing Brain

The life of a child with Asperger's Syndrome is often filled with routines: Those that are built for us by others, and those that we create ourselves. The structure of a day divided into evenly-timed segments is a source of comfort, of knowing for certain what will happen next. When the time is ours, the routine is different, but it is made of our own determining, borne from the desire to possess the smallest amount of control over our lives.

I remember being buckled in my parents' car, the arms of the straps across my lap and chest holding me close and the humming engine vibrating under my feet. It didn't stop until we were parked in front of a strange building with too-shiny windows and loose pebbles scattered across the unsmooth asphalt.

That was when a new routine began.

I am no stranger to the inside of an office: Offices in child psychology buildings, offices of occupational therapists, social workers. An endless procession of white coats and sweet-strong perfumes and colognes wafting in and out of every door, applied liberally as if to conceal the sterile odorlessness of those rooms. Every place I went seemed shrouded, far from the public's view, tinted glass keeping the broken children hidden.

This same thought passed through my mind when I recently paid a visit to yet another such facility.

Situated in the verdant hills of White Plains, the Center for Autism and the Developing Brain (CADB) sits on the edge of treatment and care for individuals with autism across the lifespan. A casual stroll onto the Westchester campus of New York Presbyterian Hospital--where the Center is located--reveals that the building in which it resides was a men's gymnasium in a past life, back in the days when individuals with mental health issues did not live at home, but instead received long-term care at a "convalescence" facility.

A few weeks ago, I joined several of my GRASP colleagues on the campus for the annual conference of AFAA (Advancing Futures for Adults with Autism). As part of the conference program, a presentation highlighting longitudinal studies of individuals with autism was given to us by Dr. Catherine Lord, who is the founding director of CADB.

Later in the day, we received a full tour of the Center, which was also given by Dr. Lord. Visiting the Center left quite an impression on me, though even now I am not sure if it is a good one.

In the main room of the Center, the ceiling is high and open--remnants of the gymnasium from the days of yore. In the middle of the room is a playroom/gym, strewn with toys and activities, and rows of observation rooms line the perimeter surrounding it. A tall and thrumming fluorescent light acts as a divider in between, and toward the entrance are glass display cases, each covered in a grid-like pattern and brightly back-lit.

It was these lights that caught my immediate attention, the whiteness being so stark as to jar my eyes from the earthy, calm tones that dominated the rest of the decor. Though I have never had extreme sensitivity to light, several of my colleagues did, and found themselves quite discomforted in the presence of those lights.

When I later visited the CADB's website, I was surprised by what I found: Multiple references to the "soft" and "natural/soothing" lighting (the references in links two and three are in the captions on the pictures on each page). I don't know for whom those lights actually are soothing, but I would have expected a bit more consideration to have been made in the design of a facility in which treatment is provided for individuals with autism.

As I walked through the still and silent corridors that day, I felt the memory of all those offices returning to me. Behind the toys, the cheery colors, the lush, green leaves of new plants, was that same all-consuming feeling that I found as inescapable then as I did when I was a child:

I am here because something is wrong with me.

Awareness about and visibility of autism and autism spectrum disorders has come so far since I was a child, as have ideas about treatment and embracing neurodiversity. Yet in spite of all this, the feeling of being "different" persists, and is augmented by the fact that a swing set surrounded by four walls and a two-way mirror is a far cry from a swing set on a playground bathed in sunlight.

At the time, I don't think I fully understood why I had to go to all of those offices, but I was always, always aware of being away from the light.

The very existence of CADB is tremendously promising, however, and represents a step in the right direction. It is my hope that facilities such as theirs will incorporate input from individuals on the spectrum into their design--the design of their buildings and of their programs.

It is we who spent so much time in these places growing up who can offer the best insight into how to make the experience a better one for individuals on the spectrum--not only while they are there receiving treatment, but as a positive foundation for the rest of their lives.

Auti-Sim: A Lens into Autism for "Neurotypicals"?

An article published in the UK newspaper The Independent was recently brought to my attention. The article in question describes a computer "game" that is actually a simulation of what it is like to live with autism. 

More specifically, the program focuses on the sensory issues faced by people on the spectrum (light, sounds, and so on), and--going by the description in the article--exaggerates these features of the setting in the game (a playground) to give the user an idea of how the world looks from an autistic perspective.

After taking the time to consider the implications of such a "game," I have a few thoughts. On the one hand, this is a remarkable concept. For almost all my life, I have had to explain myself and what it is like to see the world through my eyes. Individuals on the spectrum are tasked with having to constantly explain ourselves to "neurotypicals," and this is especially daunting when you have difficulty verbally expressing yourself. 

For there to be something like this that could just give people a straight-up lens into my experiences could make a huge difference in extending compassion and assistance to people on the autism spectrum, especially less affected folks who often have a more difficult time getting help because we don't "look" like something is "wrong" with us.

On the other hand, however, this is also a dangerous concept, and one that could do a great disservice to people on the spectrum. There's a saying that goes "If you've seen one person with autism, you've seen one person with autism," and the same holds true for how each person is affected by their autism--some are more affected, some are less affected. 

To truly give the family members or loved ones of a person on the spectrum an idea of what it is like to have autism, you would need to specifically tailor this program to the issues of that individual, because "one size fits all" absolutely does not apply here. 

Another concern I have is that the creators are referring to this as a "game." For those of us on the spectrum, this is distinctly not a game; it's our lives, and what we go through on a daily basis. We can't hit pause, or mute, or turn it off when we don't want to deal with it anymore, and it worries me that neurotypicals who would try this would fall into that line of thinking. 

Also, oftentimes people on the spectrum are described as being "robotic," and it concerns me that a program like this would inadvertently give credence to the idea that we're somehow "not human"; that we're more like computers or machines, and thereby reinforcing that "otherness" and the accompanying stigma that we've all struggled with for so long.

Stepping back and looking at the bigger picture, I can see what the program's creators are trying to do. But I also think that the details are incredibly crucial, and such a program could end up being very problematic on certain levels. 

This program is a significant move in the right direction, and offers the potential to give non-spectrum people a window into autism, and could prove tremendously beneficial to families and individuals in their attempts to obtain appropriate services and supports. But it is far from perfect, and could certainly use a long list of disclaimers, addenda, footnotes, etc. to go along with it.

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?

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.

Why Kim Kardashian's Shamarriage Irks Me to No End

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.

You Are So Beautiful to...Whom?

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

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'

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

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)

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!

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

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.

In the Event of An Emergency

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.

It Will Get Better

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!

The DSM-V Asperger's/Autism Debate

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."