Saturday, March 9, 2013
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.
Sunday, December 16, 2012
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.
Tuesday, November 6, 2012
Wednesday, October 17, 2012
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.
Thursday, September 27, 2012
"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.
Friday, April 27, 2012
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.
Thursday, April 19, 2012
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?
Monday, April 16, 2012
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 firstname.lastname@example.org, or to my business manager, Nicole Turon-Diaz, at email@example.com.
Thank you so much, and I hope you have enjoyed, continue to enjoy, and will enjoy my blog for a long time to come!
Wednesday, March 14, 2012
"There but for the grace of god."
I always feel like an old person saying that. It never sounds quite right coming from me, mostly because I don't think I've really lived long enough to have any in-depth hindsight about things.
But sometimes the universe can go and change things on you, just like that.
An article came to my attention the other day, from a newspaper in the "Twin Cities" (Minneapolis/St. Paul) region of Minnesota. It detailed the story of an 18-year-old girl with Asperger's syndrome who had run away from her home in Iowa after befriending a young man on a social network. Once in Minnesota, this young man raped the girl in a hotel room, and then, under the threat of death, he and his girlfriend forced her to have sex with thirty other men who'd been sought via an online advertisement asking them to come there to pay to have sex with her.
Immediately, I was transported in my mind back to my parents' computer room--to the warm glow of the screen in front of me, the click-clack of the keys under my fingers, and the grainy texture of the thick, rubber mat under my chair's rolling wheels. This was the place where I spent so many of my waking hours as a teenager. Unable to connect with my peers at school or make friends, I sequestered myself there, seeking refuge in the only place where I could at last be accepted--the Internet.
Most of the people I spoke to were my age--teenage girls who were fans of the Backstreet Boys, as I was at 15 years old. I volunteered my personal information to these girls readily; without hesitation, without any understanding of the dangers that were lurking quite close to the surface. And when someone claiming to be A.J. McLean of the Backstreet Boys began to infiltrate our little group, I did not doubt for one second that this person was indeed my heartthrob of heartthrobs.
My parents fought constantly to get me off of the computer, and I ardently refused, despondent at the thought of being away from this social network that I had built--my new friends from all parts of the country, fellow BSB fans, and--of course--my beloved "A.J."
The typed, un-hand signed letter that he sent me--saying how much he cared about me, how wonderful he thought I was, and imploring my parents to let me talk to him--now sits crumpled in a drawer somewhere in my old bedroom. The ring he sent me, a fake diamond "engagement" ring, is long gone and forgotten.
That could have been me.
The words choked inside my throat like too-spicy soup, the realization ever-greater as I read the rest of the article. The developmental level of a 13-year-old. An entirely too apt description of myself at 18; the picture of stubbornness, desperately wanting to be seen as an adult, yet too immature, too naïve to understand the ways of the world.
Innocent. That's what I used to be. That's what she used to be, until someone decided to take it away. Not only sexual innocence, but emotional--that certain optimism with which we view the world when we're young, and the way we believe in the inherent goodness of people. That is now lost for this girl--shattered in the most violent and horrifying of ways.
"[...]During a police interrogation, [the girlfriend] admitted to investigators that she knew the girl could be "easily taken advantage of," but she said the girl "was not supposed to actually have sex with anyone, just con them out of their money." [The girlfriend] told police the teen just "never caught on" to the scheme and actually had sex with the men."
The ball of disgust that had curled in my stomach as I read this article crescendoed into an enormous, pulsing anger when I got to the above paragraph. In situations such as these, there is every advantage to be taken by the NT predators against this girl who is on the spectrum, and I fully believe that both the girlfriend and the young man were damn well aware of this.
As for "never catching on" to the scheme, this has more or less been the theme of my life, and that of many other individuals on the autism spectrum. Just as I sat happily typing away to someone who eagerly fed on my loneliness, unaware of his "scheme," I suspect this girl also had no idea of the trap being set for her.
It is clear that the perpetrator here is blaming the victim, and we are right to find this appalling. Yet how often are folks on the spectrum accused of "not catching on" to something in everyday situations, and blamed for our "inability" to understand when it all could have been avoided if anyone had bothered to tell us that "something" was going on in the first place? In the case of the Twin Cities story, however, I truly doubt either the young man or the girlfriend ever had any intention of doing so.
I can only hope that this girl is able to find some peace in the wake of her ordeal, and that her rapist and his accomplice are punished to the fullest extent of the law for their crimes. I can only thank every higher power above that my parents had more sense than I did when I was a teenager, and were probably the only reason I didn't run away and end up in the newspapers myself.
And I can only listen to the careful breaths in my chest, see in my mind's eye that 15-year-old girl sitting at that computer, and feel the pounding echo of my heart as I fight now to make sure that what could have happened to me--what did happen to her--never has a chance of happening to any woman on the autism spectrum again.
Sunday, January 22, 2012
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.